Archive for the ‘Alzheimers / Dementia’ Category

It’s another in a series of dark, rainy days. Gloom begets gloom. All my life, I thought I was a good writer. Not contest winning good but captivating. Someone able to hold the attention of my readers. A few months back, I read some of my earlier blog entries and my life story that I wrote at 21. It seems so mediocre to me. Not very good at all. Now I’ve lost my will to write. I don’t want to write emails, blog posts, Instagram posts, Etsy listings, grocery or to-do lists, etc. It could be because I’m grieving still for the loss of my mother. Or it could be that I’ve lost confidence in the only thing I was ever good at. The only thing I ever had confidence in to begin with. I’m not about to start day drinking although the though has crossed my mind. It gives me perspective. I always wondered at what point does someone actually start doing heroin?! A fully rational adult knows better but if life has no substance for them anymore, will they do anything to get their motivation back?! Before you start worrying that I’m on the verge of shooting up, I won’t. I can promise you that. Not just because I don’t care for needles or putting foreign substances in my body. Mostly because I already know it’s not the answer.

When Mom was alive and I was so busy taking care of her, I used her as an excuse. I couldn’t write more because I never had a block of time to sit down and write without being interrupted. I figured when she eventually passed, I would spend part of every day writing. I would either be writing a book or at least do regular blog entires. Instead I feel even less like writing. The truth is she never kept me from writing or anything else. I’m doing that all by myself.

My days are all a blur now. I no longer get up with my husband in the morning (7 am) like I always did until the first of the year. I usually get up by 8 or 8:30 am. I still walk the dogs every day except today because it is raining hard all day long with no break. I still cook meals and bake desserts. I stay caught up with the laundry. I keep my housework and hygiene routine. I pay bills on time. I still watch “Stories” on Instagram every morning and throughout the day. Snippets of other people’s full and vibrant lives. I feel almost paralyzed about sharing on social media. I’ve felt this way on and off since I first got on the internet 21 years ago. In the past month I’ve only posted a handful of pictures (mostly food). I’ve taken lots more and should be excited about sharing but feel almost afraid to share. I don’t know why but the more I need people, the more I pull away. I watch tv but only half-heartedly. TV was always such a joy to me. It was something I’d look forward to at night. Now I still watch the same shows (and some new ones) but most of the time I’m not giving it my full attention. I wouldn’t be able to tell anyone what happened in a particular episode.

I’m very short-sighted and impatient when it comes to getting over things. I like to forge ahead and get on with things. When I had the chicken pox at age 30, I was so afraid that the red marks left on my face (scars) would be there forever. I asked a coworker who had them in his 20’s if he remembered them on his face and he said yes. He said they go away over time. Of course, he was right. Everything goes away over time… A decade ago I had a medical condition I’ve never written about. Someday I will. It was so painful and kept coming back. I finally had surgery and it cured me forever. Sadly, for a few years I was petrified that it would come back. I mean, it was a daily worry that I’d have to deal with it again and forever. That was during the time I almost went on drugs for depression. I was making myself sick with fear. I couldn’t see long term. I never took the drugs and over time my anxiety about reoccurrence went away.

Now I’m back to that place again. The grief over my mom’s death has only intensified. I feel empty and alone. I feel sorry for myself. The worst thing is I’m worrying that this feeling will never end. Just through living all these years, I ought to know logically that I won’t always feel like this. However, I don’t know how long it will last. It could be weeks, months, years?! When I had Mom with me, I pushed myself to get things done every day. Extra things like listing things to sell online or just reorganizing things. Now I don’t push myself. I don’t know why. The only thing I can come up with is that “nothing matters”. It doesn’t make a difference if I do it or not. She’s still dead and I’m still here. I don’t even like posting about my grief on Instagram. People are so kind and wonderful leaving cheerful comments. But what it comes down to is there’s nothing anyone can do to help. It’s going to take time. I feel embarrassed that I’m not handling this better. I don’t like feeling vulnerable. I want to be strong and be able to just go on without being phased by the loss. April 7th will be 5 months since Mom passed away. It seems like it should be long enough to live like this. I’ve always hated “wasting time”. I know how precious life is and grieving this long feels like a waste of time. Maybe it’s one of those things that just sneaks up on you. One day, without realizing it, I’ll notice that I no longer feel this way. That I’m able to find joy again in life. Only God knows how long I need to grieve and when he thinks I’m done. In the meantime, I’m soldiering on.

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On Sat. Nov. 5th, we got up at 7 am to go to the local library’s book sale. I was so excited since I’d been looking forward to it since the last one six months ago. I got Mom up and she walked to the bathroom with help from me. She was 95 1/2 years old. She never wanted to use a cane or walker she just held my hands as I walked backwards. I got her on the toilet and she had a nice bowel movement. Then when I tried to get her to stand, she couldn’t. I tried over and over but she wasn’t able to push herself up with her left hand. It just was limp. I finally called Greg who had gone downstairs and eaten breakfast already. He’d made himself eggs and toast. The 2 of us were able to lift her up but she still couldn’t stand. Then Greg was going to try to take her downstairs but she wouldn’t be able to give him any assistance. I told him to bring her back to sit on the toilet and then call 911. He did and put the dogs in the sunroom. When he came back, I got her clothes and we quickly dressed her. Then I went to put some shoes on myself and they were in the sunroom and I did’t want to open the door in case the dogs ran out. So I put a pair of sandals on over my socks and changed my shirt. By this time, the emergency responders had showed up. They not only sent an ambulance, they sent a fire truck and a cop car. There were between 6-8 men eventually in our house tearing it apart. The first guy in would not come upstairs and check on Mom. He said he was going to wait inside the glass door of our entryway so the others would know where to come in!!! I had told him and the next 2 guys that came in, that if they needed anything moved, to let me know and I’d take care of it. They didn’t, instead they just started throwing things. We keep a bunch of globes on the stairs and I didn’t know if they needed to be moved since we can walk up and down them no problem, even carrying a laundry basket or ladder. They just grabbed them and threw them everywhere. Dealing with the paramedics was by far the worst part of the whole ordeal we went through! They had no care or urgency for us, Mom or any of our belongings. If they had thrown things to get to her quicker it would be one thing but it was just that they didn’t give a shit. They didn’t move too fast and roughed her up badly moving her into a chair to move her out of the house. She was black and blue up and down her arms from them handling her. At no point did they take her vitals until they got to the hospital. I kept asking if they wanted the names of the meds she’s on but they didn’t. I put the pill bottles (3) in my purse since I knew my brain would seize up from stress. When Greg phoned 911, he told them that she’d had a stroke. To this day, we still think that’s what it was. The paramedics asked if I wanted to ride in the ambulance and I said yes. I practically ran to the ambulance in front of the house and they all just walked slowly like they were browsing at the mall. When I was at the back of the ambulance, they said I had to ride in the front next to the driver. That I couldn’t ride in back because it gets too crowded with too many people. So I sat in front and Greg ran up with my purse which I’d forgotten. He told me he’d follow and see me at the hospital. It took forever for the guy driving the ambulance to get into the driver’s seat and he didn’t talk at all. I tried talking to him—asking him how long after a stroke could someone be given the anti-stroke drug and he said it was a 3 hour window. We had called 911 about 7:45 am. The ride to the hospital was unfamiliar to me. I’ve been to Resurrection many times and know the shortest and most direct route. The ambulance went a longer way that seemed out of the way. He also drove slower than an average vehicle, not fast like an ambulance should. He would slow down even at green lights. He seemed more worried about not wrecking the vehicle. It didn’t seem like he was in any hurry to get to the hospital. I’ve seen them drive faster on their way to the grocery store. 
They got her into a curtained ER room and left. Then I dealt with young residents and interns that were unlucky enough to have low seniority and have to work on Saturdays. Mom is profoundly deaf and even with hearing aids, she doesn’t always hear. She usually doesn’t respond and often didn’t speak. They couldn’t ask her if she was in pain or how she was feeling. She was able to lift both her legs off the bed but her left arm was still limp. She also had a glazed look in her eyes (which to me seemed like terror) and her left eye wouldn’t open. They got all her information from me regarding insurance and meds. Then they took her for a CAT scan of her head and took a ton of blood tests. From the get go her vitals were awesome. Her blood pressure was good as was her pulse. Her pulse oxygen was between 87-92 which seemed to come from a loose fitting clamp on her finger. After all day, they finally put her on oxygen through her nose and the pulse oxygen went up to 98. They had put IVs in both hands and arms. I told them how worried I was that it was a stroke and that I wanted her treated before the window for reversal was up. They came back after a few hours and said that that all the tests pointed to it NOT being a stroke! That doesn’t mean that it wasn’t a stroke though… They also said she wasn’t a candidate for TPA. I don’t know if it was her age or her other symptoms like congestive heart failure that she’s had for 15+ years. They said she had a bad urinary tract infection and were going to treat her with Cipro every 12 hours by IV. Finally they decided to keep her in the hospital since she couldn’t swallow aspirin they wanted to give her. They ended up giving the aspirin rectally in a suppository. About 2:30 pm they were going to see about getting a hospital room for her. That took over an hour. Meanwhile, Greg & I are sitting in the curtained room waiting. Because of the close quarters, you can’t help hearing what is said in the next room and other areas of the ER. Next door was a younger guy who came in because he’d been throwing up blood for 3 weeks! Eeek. He was nauseous, had stomach pain, pain when urinating or a bowel movement. He was there for hours as well and after a ton of tests, they couldn’t figure out what was wrong with him. He was throwing up and making gagging noises which was so gross to hear. They gave him anti-nausea meds and painkillers and he finally said he was leaving to go to work!!

About 3:30 pm, they said they had a room for Mom but needed to wait until Transport sent someone down to get her. That took about 45 minutes. She got moved to Room 3127 and we went along and got her settled in. I hadn’t eaten anything since the night before and Greg & I were both exhausted so we decided to go home to eat and then come back that evening. We came back around 8 pm and stayed a few hours. Mom’s eyes were open but she wasn’t seeing. Her eyes weren’t focused and she didn’t seem “there”. She had a tremor in her right hand. We’d always put her on the computer to play video games, specifically slot machines. We set it up so she could just use the space bar to spin the slot machine. I had brought her a small stuffed skunk that I thought might cheer her up but she never regained consciousness. We don’t know if she was sleeping with her eyes open, in a coma or unconscious. But that is how she was from Sat night until Monday night (Nov. 7th) when she passed. She still had a strong grip in her right hand and would hold and squeeze your hand. She’d also pick up the skunk and pet it. 

It was so sad and hard to see her in that condition. She had been very gradually declining for years but it was so slow, that seeing the difference between Friday night and Sat. afternoon was drastic. She had been able to walk up & down the stairs alone using the handrail. Thurs. she had gotten in & out of the bathtub by herself. We were torn between wanting to be with her and feeling as if she didn’t know if we were there anyway.

Sunday Nov. 6th we spent several hours at the hospital in the morning and early afternoon. Mom wasn’t doing well. She was unresponsive and she just slept, sometimes with her eyes open. When we were in the ER, they had brought up signing a DNR (do not resuscitate) but it seemed too soon. It seemed like they were giving up on her. Everything we originally decided, after much talking, we changed our mind about. They had a speech therapist come in to see if she could swallow. She failed so they were talking about putting a feeding tube in her stomach. There’s no way I could let them do that. Hospice was brought up but we really didn’t know what it was. They said we could take her home which sounded like the right thing to do. Who wouldn’t want to die at home if given a choice?! They also said there was a hospice floor in the hospital (the brand new hospice wing opened 2 days after she passed). The neurologist came in and agreed that hospice was the right move. I asked him how long people last without food and water. He said she’d probably last a week at most. I asked several others and were given answers of 9-10 days and one 3 days. We were actually thinking if Mom was in hospice, Greg could go to work a couple of days that week. The doctor who was assigned to her came in for a minute (literally) and said hospice was the way to go and it is covered by Medicare. We kept going back and forth trying to figure out if we could handle her care at home. Care consisted of turning her to different positions to sleep and swabbing her mouth with a wet sponge. We didn’t know this until we saw it later but they said the hospice workers wouldn’t do much but stop by several times a day to check her vitals. Finally what decided it for us was how traumatic the ambulance ride back home would be. We were willing to move all our living room furniture to make room for a hospital bed. I would’ve slept downstairs by her. But why put her through all that when she could stay in the same bed and just be wheeled to a different floor? So I signed the DNR and several other documents in a haze. We went home to eat a late lunch and walk the dogs. We got a phone call that she’d been moved to Room 472.

We came back that evening to check on her. She seemed to be having a more restful sleep. They had taken her off of IV fluids and given her something to calm her and the next day gave her morphine. We had been trying to figure out our next move. Greg decided to just take the week off. We didn’t know how long Mom would last so didn’t know when to contact a place about her being cremated. We decided to do it Monday morning. Greg called around to a few in the area and found out for a simple cremation there’s a $2400 difference in price. He was calling early in the morning and most didn’t answer their phones and had to call him back. We decided to go with one that answered the phone personally. It was the Rago Brothers Funeral Home. We told them we’d call when Mom passes, thinking it could be several days yet. Little did we know that we’d be calling that night!! 

Monday we made 2 trips to the hospital. We spent 5 hours before lunch and then went back at 4 pm until 7 pm. When we came back in the afternoon, Mom was flushed. She was red in the face and breathing a bit harder. Her whole body was hot. I took the blanket off and just kept the sheet on. I didn’t know if this meant she was going to pass soon or not. They had given us a booklet which we both read on how you can tell if they’re going to pass and most of it was inapplicable. It’s for those who have to be in hospice for months. The one thing that rang true was they get hot and then they get clammy. Her hand got very clammy. We still didn’t know and told the nurse to call us if she took a turn for the worse and we’d come back. Before we left, I leaned over and said right in her good ear that we loved her and that she could go to heaven now. We went home and watched Dancing With The Stars which Mom always loved. We were about a half hour away from going to bed when the phone rang at 10:40 pm. The nurse (Dominic) told Greg that she’d passed. We were both in shock. We’d just been there! We were going back in the morning…and now we didn’t have to. So we got dressed and headed back over to the hospital. When we got to her room, she was laying there like a skeleton. Not breathing but still warm! Her mouth was open but eyes shut. Greg & I both kissed her on the forehead. We stayed with her a few minutes and then called the funeral home and told them. They said they would call us the following day around 10 am and we could come in and make arrangements. We went up to the nurses station and signed some paperwork, thanked them for all they did and gave them a flower that a volunteer had put in Mom’s room. We’d been crying pretty much for 3 days straight. We went home and cried some more.

The next day Greg called my cousin Jayner who lives in Michigan to tell her the news. She was going to pass the news on to her sister and our other male cousin that lives in Minnesota. We went to the funeral home and took care of important matters. We had to order original certified death certificates. They are $20 for the first and $10 for each additional. We had no idea how many to order so got 6. I hope it’s enough. Mom didn’t own anything but a bit of stock which I still need to get transferred to my name. 

I don’t know where the rest of the week went. For the next 3 days we cried on and off. After that, we’re pretty much cried out. The Thursday after she died we got the call to pick up her ashes but we were worn out so waited until Friday. Thursday we had gotten out ALL the old photo albums and we looked through them all. It made me feel so much better!! I honestly couldn’t remember how she used to look before she was in her 90’s! I saw that she’d had a great life and had lived it to the fullest. There was no reason to be sad when she really was never sad. I thought Sunday Nov. 13th would be hard because it was the first time I’d eaten lunch (or any meal) alone in over 2 decades! Greg went back to work and I was alone (with the dogs) all day. I thought I would be a basket case but I was fine. I kept myself busy with laundry. I do miss her every day but I’m glad she’s in a better place. She wouldn’t want us moping around. She’d want us to live for her and do things she liked. That’s why we’re leaving this week for our annual Thanksgiving trip to Tunica, MS. This is our 19th year we’ve been there for Thanksgiving and the first without her. We’re going to take her ashes along with us and sprinkle them at the places she loved and where we vacationed at. She loved to travel and was always up for an adventure. She never complained and was such a trooper. I had her for 54 years but it still wasn’t enough. When you love someone so deeply and your soul is tied to them so completely, anything short of eternity together feels like a rip off.

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I’m not having any trouble passing the time while hubby is gone. I never run out of things to do. I always have big plans but when it comes down to it, just surviving keeps me busy. I mean maintaining. I’ve noticed I have a way of being melodramatic when I write. Not to be outdone by my in person melodrama. 😀

 I pretty much run a 1 person nursing home in our house. Hopefully, with more care and dignity than a real nursing home at a fraction of the price. In addition to the usual care, I’ve been doing my fair share of “doctoring” or “nursing” the past few weeks. We got home from our last vacation Friday June 24th. 2 days later, Mom got her first bedsore. Keep in mind she’s not bedridden. She doesn’t lay in bed and she can walk (slowly) but sits a lot. I get her up to go to the bathroom at intervals but she doesn’t move enough to get good circulation on her hind quarters. These are often called pressure sores from having pressure against the skin and it weakens over time. Well, hers was precipated by a bout of diarrhea where I may have cleaned her too vigorously. The skin of our butt cheeks is probably thinner than the cheeks on our faces. So it started out about the size of a thumbnail. I knew I had to nip it in the bud right away before it got worse or she got more of them. So I googled bedsores and was scared half to death. This happens to me every time I look something up on the Internet. There is so much bad information out there and worse case scenarios. Yet, I never learn to not look. Maybe it’s because I feel I have no one else to ask. 

Things that have changed since I last wrote about Mom’s Alzheimers:

 Since our last vacation, I no longer make her coffee. This is a woman who loved her coffee more than the average person. She had to have a cup every morning no matter what. She used to have some throughout the day and then dwindled it down to a just an additional half cup in the afternoon. Recently, she’d been drinking less and less of what I gave her. Then she started not drinking it at all. It would sit there with only one sip out of it. No matter how much I reminded her to drink or yelled at her to drink it, she wouldn’t. I would end up throwing it away every day. I would ask her why she didn’t like it anymore. She wouldn’t answer. It’s left up to my imagination why she won’t drink it. All I know is it’s not even an option for her anymore. She doesn’t ask for it, I don’t provide it. Wondering how I’ll use up the half full can of Maxwell House since neither hubby or I drink coffee….

I quit giving Mom a multi-vitamin every day. She wouldn’t swallow it and I’d have to yell at her to swallow the pill and she still wouldn’t. She’d just roll it around in her mouth and I’d have to have her spit it out and I’d throw it away. I took the last few that were left in the bottle and now I’m not taking a multi-vitamin either. I’m trying to tell if I feel any worse for not taking it. It’s really hard to tell.

I am doing more for her every day. Since I’ve never had kids, I picture what it’s like to have a toddler who can’t do things for themselves and you take over without thinking. Then each day, the toddler learns more and is able to do something today that they couldn’t do yesterday. They are feeling a bit more independence and the parent is feeling pride at the child’s achievement. In our case, I know each day Mom can do a little bit less.

Mom can no longer dry her hands. Or should I say, she does such a poor job, I end up having to dry them after she does it. So it’s easier for me to just dry them. Especially since she can’t turn towards the towel rack from the sink. I have to grab the towel off there and take each hand in the towel and dry it. It’s not the worst thing to have to do but it shows how she can do less every day.

I now pull her pants up and down as needed. When she tries to pull them up herself, they only go halfway and she’d just leave them that way. Same with taking them down. I’m still putting her in underpants with a pad, followed by a diaper (or adult underwear) and then her regular pair of pants.

There was lots of scare information about bed sores left untreated and turning into life threatening infections. There was talk of moving the person so they don’t sit in the same position all the time. I can see how that’s necessary (and easier) when they’re only laying in bed. But to sit, there’s really no other option but to sit on your butt. I made a point to put her up on pillows where she wasn’t sore. Luckily, she sleeps on her side (not the side that had the sore) so that gave it some rest. Right off the bat, I had started using Neosporin and a large bandaid. That didn’t do anything, in fact it was getting worse. From the size of one thumbnail, it had become 3 thumbnails in size. In such a short amount of time, it was panicing me. Reading some of the remedies online, one said to put honey on it. That it did wonders. All I could think of was the ants that would gravitate to it. Another internet source said to sprinkle Tumeric on it. I didn’t want to do any of these hair brained schemes until I’d talked to someone.

 On Friday July 1st (the Friday of the long holiday weekend), I called our family doctor. Wouldn’t you know, he was out on medical leave indefinitely?! He’d been out for “some time” already and they had no idea when he’d be back. Knowing our doctor as I do, I had a sneaking suspicion that he wanted the summer off. I don’t fault him for it. Unfortunately, he had no one filling in for him. He now works in an urgent care type place associated with a hospital and people were filling in for him only as needed. They told me to leave a message and they would send it to him and call me back. I didn’t hear back so called about 4:15 pm and was told that he hadn’t even opened his messages. I ended up talking to a nurse. Can I say, I HATE NURSES. She asked a bunch of questions, I was basically asking if I should continue doing what I’d been doing for the bed sore or if there was some prescription medicine that would make it heal quicker. She said that my mom needed to be seen!! I needed to take her to the emergency room in the next day or two. That a bed sore can get serious very quickly. If you’ve ever been to the Emergency room of a hospital, it is MANY hours of waiting, no matter how much pain you’re in. It’s very frustrating. Knowing that Greg would be leaving in a little over a week just fueled my stress. If I had to take her in somewhere, it would be much easier to do it with his help. But taking her somewhere like that unnecessarily could be the worst thing. I was upset most of the holiday weekend.

I went back to the Internet and saw reviews for this cream called Emuaid. I’d never heard of it before but it cures all kinds of hard to heal wounds. It’s super expensive like $48 for 2 oz. But the jar will probably last a few (or several) years. Plus you can’t put a price on being healthy and peace of mind. When this first turned up, I had gone to Jewel Osco (our local grocery/pharmacy) and asked them what they recommend. They had NO CLUE. They couldn’t even steer me to the correct bandage. When I saw this Emuaid, it said that they now carried it at CVS pharmacy. Sat. July 2nd, Greg & I went over there and I asked the pharmacist. They don’t carry it, nor had they heard of it. They also were no help. Luckily. I have a big mouth. I will ask ANYONE and EVERYONE literally ANYTHING. I had seen online that another place nearby supposedly carried it. So while in the CVS parking lot, I called “The Way of Life Health Food Store” in Niles, IL. I asked if they carried that cream and they said yes and then I asked for directions.

 Apparently, this place has been around for decades and I used to shop at JoAnn Fabrics (which is now out of business) right next door and didn’t notice the place. This time when we pulled up, there was a guy on his knees on the sidewalk, scraping gum off. That impressed me from the get-go. I told him he must be a new owner because he still cared. Turns out he’s not the owner at all but he’s pretty knowledgeable. 

We left the store awhile later and $117 poorer. We got the Emuaid, as well as some mult-vitamins in LIQUID form. I never knew they came that way. So I’ve been mixing in a shot glass worth in Mom’s apple juice every morning. It smells bad the way vitamins do so I know I’d gag if I tried to drink it. Mom takes it and drinks it right down. I got some Himalayan Pink sea salt and some natural fiber comparable to Benefiber which I take twice daily. To a make a long story short (that ain’t ever going to happen!), the Emuaid did the trick! I started it Sunday morning July 3rd and put it on once a day. Sometimes more if the bandage came off and I had to replace it.

 Then on Tues. July 5th, I got a phone call back from that nurse. She said she heard back from Dr. James and he wanted her to be taken in to either an emergency room or an urgent care place right away. She needed to have it scraped and a culture done and check for MRSA. In case you don’t know, that’s some hard to treat (sometimes fatal) bacterial staph infection. I can’t even tell you how this shook me up. I felt like we were on the road to recovery but didn’t want to take chances with her health. The nurse has no idea HOW HARD it would be to maneuver Mom over there and then get her up on a table and put her through all that. I texted Greg at work and he called me and we talked about it. All I know is that you can catch a ton of things FROM a hospital setting. Things you didn’t go in with. I would never forgive myself if I took her somewhere and she picked up something like MRSA and died from it!!!

 So I used my own judgement and monitored it constantly. I made sure I kept it clean and dry which is nearly impossible with her incontinence. I noticed it getting better very slowly and as of a few days ago, it was COMPLETELY healed. Amen and Hallelujah! It just goes to show that listening to a doctor or nurse like it’s the gospel isn’t always right. They are covering their ass, trying to make sure they don’t get sued. I’m afraid there are a ton ofelderly or bedridden people out there dealing with this and getting back advice. 
Mom doesn’t like to hold up a glass to drink. She wants me to do it. Today she fell asleep with a glass in her hand and dropped it and it broke on the carpet. I guess it’s my fault for not taking it away from her promptly. 
I’m getting sick of writing about Alzheimers. I have to live it, I don’t want to think about it in my diown time. I have other things I want to write about in the coming week. We’ll see if I can manage it.

My dad’s Aunt Emma (he only had one aunt and she was ancient when I was born) used to always use the saying, “This Too Shall Pass”. No matter what happened. It takes many years of living to appreciate those old sayings. It never meant much to me until now. My interpretation of it is that no matter whether something is good or bad (but usually referring to bad), it will eventually come to an end. You can be content in knowing that pain and suffering will pass, loneliness and despair, grief and sorrow. They are not everlasting. Although even disappointment can feel deep and overwhelming at times. We tend to often forget that emotions are temporary and if we can remember that it will pass, it will see us through the hard times and keep hope running through our veins.

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I find myself in the same place every time I write a blog post. With too much time elapsed and too much to say. So much has happened and there’s too many words to squeeze into one blog post. There’s also no time to do multiple posts. So what do I do? Just dive right in without a care for length or coherence. Grab a life preserver so you don’t drowned.

Since I last wrote, my 10 year old Toshiba laptop finally died. It was about a month ago and it wasn’t even that upsetting. I never back anything up. Crazy, right?! A lot of stuff on our phones goes automatically to The Cloud for preservation. My laptop would have to manually be backed up and I’ve never gotten into the habit of it. I’m sure I’ve lost a lot of things that I probably don’t know I had or didn’t know I would ever need. The first few times I lost everything on a computer, I was devastated. I thought my life would never be the same. I was turned off computers to the extreme and didn’t feel they could be trusted. Now it’s happened so many times, it’s like the basement flooding. It sucks but you just deal with it and half expect it to happen.

Today is the first day I’m using an HP laptop that my husband got over 2 years ago. It had the Windows on it that everyone hates. My husband was trying to lure me away from my old laptop before it went. As anyone who knows me knows, I love what I have and hate change. So I wouldn’t even think of using this one until I had no other to use. It takes me forever to get used to new things and I’ve been dreading actually pulling this out to use. Hate is a strong word but I kind of hate it. The keyboard placement is all wrong so my hands don’t sit right when I type. I’m used to typing very fast and not looking to see where my  hands are. Now I’m making so many mistakes and concentrating on typing instead of what I want to say. But instead of complaining,I’m going to be thankful for having a computer to write a blog post on. I’ve been missing my blog so much. Just bear with me if the font is huge or the paragraphs are off. This is going to be a necessity to learn since I have to figure out how to do Etsy on it, too.

The end of April we took Mom to the audiologist for her new ear mold which didn’t help a bit. It fits better but she doesn’t seem to hear any better or comprehend what is said. I’m sure that’s more from the Alzheimers than anything else but I had to try. Same with taking her to our regular doctor on April 28th. He said she looked good and I was doing everything right and just keep doing what I’m doing. He listened to her heart and lungs and looked at her ankles to see if she was retaining fluid (she wasn’t). He said the organs begin to slow down with Alzheimers and they begin to fail 7-9 years after initial diagnosis. Mom was diagnosed not quite 4 years ago so the thought that this could go on another 3-5 years gave me a wake up call. After her doctor’s appt. we went out to eat for the first (and only) time this year. We went to Sweet Baby Ray’s for barbeque and she ate her whole meal and loved it. This is never a problem since she’s always had a hearty appetite. She made such a mess of her hands and face which is typical of her eating anything now.

We went on vacation to Green Bay, WI from May 12-21. Hubby wanted to go early and miss the crowds that go out for the Memorial Day holiday. We had about 4-5 days of unusually cold weather and then the rest was beautiful. Due to having the wheelchair for Mom, we took her with us all 4 times we went gambling that week. We actually had more fun doing it than we have in awhile. A lot of the time we all played one machine together. Mom tends to hit the MAX BET button by accident so we have to watch her like a hawk. The last night we were there, she fell asleep while we were gambling. She talks less all the time and when she does speak, it’s gibberish, not in full sentences. It was much easier to push the wheelchair in the casino so now I’ve figured out it’s the sidewalk and street that make it hard to push, not that I’m weaker than I thought.

Mom has gone down hill just in the 11 days since we got home. She’s pulled down the towel rack in the upstairs bathroom and hubby glued it back on. We had to take the one in the downstairs bathroom down all together since she kept knocking it down. Mom fights me everytime on the toilet. She no longer knows what the bathroom is for! I told that to Greg and he said, “She thinks it’s the room you go in to yell at her.” That is so true. I don’t like to yell but between the hearing loss, the Alzheimers and how easily she’s distracted, there’s no choice. She can fiddle with the drawstring on her pants forever or fold and refold the toilet paper until my patience runs out. When I take Mom to the toilet, she doesn’t pee on it at all anymore. No matter how much I yell, plead or beg, she won’t pee. I even run water but nothing helps. She’ll go on the couch or in bed or in her chair or as she’s walking. It doesn’t matter if I take her earlier or later, it’s the same. So far, she has bowel movements mostly in the toilet. I have to bend her over on the toilet to have her stomach push out whatever’s ready since she won’t. The doctor tried to explain to me how her mind no longer reads her body’s signals and her body may not be sending signals anymore. Anyway, she fights me as I try to bend her over and she pushes on the wall in front of her and I am leaning on her with my hands on the wall behind her pushing with all my might. This stubborn old woman is stronger than me! I’ve tried explaining sweetly why she has to bend over but it does no good. I still need her to bend over so I can wipe her butt, too. This ensues another fight. Lately, I feel like I’ve gone 10 rounds with Floyd Mayweather (famous boxer). I am battle worn and don’t see a way out. I don’t think they’d be able to care for her better in a nursing home but I find myself getting so upset I’m afraid I’ll stroke out.

Yesterday I came downstairs from taking a bath to find a big turd on the kitchen rug. At first, I couldn’t tell if it was from a dog or a human??? If that sounds familiar, it’s because in the past it happened in almost the same place and was human. This time  it was from Ivy, our basenji dog. Mom rarely gets up unaided so she will be wherever I leave her until I come to move her. In any case, I took a pic of it to message to Greg but ended up posting it to Instagram instead where it got very few likes. I was surprised to see there’s a hashtag #mylifeisshit. That’s what my life has been reduced to but I guess people don’t have to like it… 🙂

We had a pretty good vacation since our expectations were low. I had done a lot of cooking before we left and so we ate leftovers in the RV all but one night. We got beef lo mein from Noodles in the casino and brought it back to eat. We read some in the RV and I finally finished The Mutiny On The Bounty trilogy from 1932. It was scrumptious! We haven’t gone to any estate sales in our area for over a month. We did hit one while on vacation and also went to our usual treasure hunting haunts in the north woods.

We’ve had so much to do since we got home. Between laundry, grocery shopping, bill paying, cooking and yard work, there’s not been a spare moment. On Thurs. May 26th, we went to Sears in search of an 11.5 ft. offset umbrella for the deck. We’d seen it online but wanted to see it in person before purchasing. We had bought one about 10 years ago from Sam’s Club and it was glorious! Made of heavy wood with a stunning green canvas, it lasted intil last year. It’s much too hot to enjoy being outside without the shade it gives. A decade ago we paid $300 and it was worth every penny. The umbrella we ended up getting was $300 also but is just “ok”. It was on sale down from $500 but it seems inferior. It is made of metal and plastic with an almost opaque fabric in a blah tan color. That’s the only color it came in. Since it was the start of the holiday weekend, we knew we had to get it Thurs. or they’d be gone. They showed 2 in stock but had sold one that morning so all they had was the display and they weren’t selling. So we had to buy it and drive to another store to pick it up. They no longer will send it to the store of your choice for pickup. So we went and got that and Greg was able to get it assembled before nightfall. I also got a pair of slippers and Greg got a pair of much needed sandals. I got to thinking how everything we’ve ever boughten at Sears is just ok. Never anything we’re in love with. Just something to get us by until we can find what we really want. That’s pretty sad. Somebody needs to put a fork in  Sears because they’re so done…

Thurs. we also went to Pesche’s to get our plants. We bought 2 cucumbers (different types), 13 tomatoes (4 types), 30 peppers (5 types), zucchini, yellow squash and 4 herbs. Then we had to come home and weed the garden and then get the rototiller out. Meanwhile it was raining off and on all weekend. Not much or long but enough to keep us from spending much time outside. Friday we started the actual planting and finished up on Saturday. This is the latest we’ve ever put in the garden! Everything looks great and has already grown quite a bit. To me, that’s half the fun–seeing the plants soar to the heavens and produce such lovely goodness. The other half is eating them. I also picked my rhubarb and have to do something with that shortly.

What else has gone on lately? Sat. May 7th I dropped my iPhone in the toilet! I wasn’t even using it, just had it in the too short pocket of my shorts. I was pulling my pants up and it fell out and splash. I reacted quickly and grabbed it. It was barely wet and I put it in rice immediately. I left it overnight and then took the case off and cleaned it thoroughly. It’s worked fine ever since. It just goes to show no matter how careful you are, things like that happen to the best of us. And the worst of us! 😉

May 7th we also went to the library book sale in our hometown of Park Ridge, IL. They only have it twice a year and it’s always worth going to. I think about it for weeks ahead of time and look forward to it. It’s funny how that day I forgot all about it until noon! I was at home and I saw a pic of some book on Instagram and the person said they got them at the library book sale and I was like, “Was that today?! Holy smokes!” So we ended up getting a few things even though we have too many books already. Part of my joy lately is that I’ve gotten Greg back into reading. He is enjoying it like he hasn’t since hew as a teen! It’s so relaxing and turns out to be a good stress reliever and way to unwind for both of us.

I’ve rambled long enough to scare everyone away all over the Internet and within a hundred mile radius.








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The title of this is misleading. People say that when they don’t know what to say. Something has affected them and they wish to express it and don’t know how to choose the words. In my case, there are too many words. Oh, so many to describe what I’m feeling but none of them suit me.

Things have been progressing ever so slowly with Alzheimer’s as they tend to do. The gradual decline has been at a snail’s pace for over 3 years. Sometimes more rapidly than others but always leveling off quickly and staying somewhat manageable. I know time passes when we’re not paying attention but this is ridiculous. All of a sudden, with no notice, helping my mother has become a full time job. Obviously, I noticed that more and more time has been devoted to doing tasks for her. But I was still able to squeeze in a few other things a day. I had been selling online here and there when possible and writing blog posts when I found myself with a block of time. It all became too apparent over our Thanksgiving vacation. We are currently on Christmas vacation which just reinforced my thoughts on this.

I will try to write a post soon about the vacations but it certainly was no break for me. This post is specifically about Alzheimer’s and what I’ve been dealing with lately. As always seems the case, I need to get what I’m experiencing out of my system by sharing it on here. I have no one else to talk to about it and it lightens my burden to tell my story.

Less than a week before we left for our Thanksgiving vacation, Greg and I had been out of the house for a few hours going to estate sales. We came home to find large turds on the kitchen floor, down the stairs and a mess in the bathroom. Having 3 dogs, my first thought was that one of them had had an accident. But our dogs are good and don’t go in the house ever. It didn’t take us long to figure out it was Mom. I found her sitting at the computer in pants that she had crapped all the way down to the ankles in. She had her dirty pad taken out of her pants and it was sitting next to her on the top of the desk. Ack. That sound you hear is me wretching. I’m not going to go into the detail of what it involved to clean her and the house up. But a general summation is I took her down to the bathroom and then made several trips upstairs to get her clean underpants, pants and a shirt plus a washcloth to clean her with. Then I had to wipe down the computer, the mouse and desktop with isopropyl alcohol. I had to take her dirty clothes down to the laundry tub and rinse them out. Then run a load in the washer extra long to deep clean and sanitize the clothing. Not to mention cleaning the floor and throw rugs. It sounds like I went into detail but I didn’t. I left out me trying to have a conversation with her and she has no clue what she’s done. Or what’s happened to her. Or that she’s covered in feces. Or why I’m upset. Or why I’m skeeved out.

Anybody who’s read this blog for very long knows this isn’t the first time I’ve had to deal with this. It most likely would’ve happened even if I was home and it’s very likely the beginning would have played out the same way. She would’ve lost control of her bowels as I was getting her to the bathroom. But I would’ve been home to clean her up before she could wander back upstairs touching everything. There is no way to regulate someone else’s bowels when they can’t give you a clue that they have to go.

I made a huge deal a little over 2 years ago when I had to wipe my mom’s ass for the first time. I wrote a blog post called “The Gift Of An Asswipe”. I was appalled. Little did I know that that was NOTHING. Sometime in the last year, more than 6 months ago, I’ve taken the job on full time. I came to the realization that it wasn’t worth it to “let” her do it and make such a mess that I’d have to clean her hands with a toothbrush and clean the toilet seat and everything around her. At that time, I decided to just buck up and do it. It’s basically like wiping a baby’s ass but bigger, right?! Well, I don’t have a baby but I now have a toddler. Mom seems like a toddler so much of the time. So Mom has bowel movements but not daily and she doesn’t like to sit on the toilet for any length of time. I’m like a labor coach but instead of cheering for the baby to come out, I’m cheering for the shit to come out. Everyone’s quit reading by now but that won’t stop me. I’m going to continue so that someday I can remember exactly what I lived through. So she’ll have a piece of shit hanging out of her and say, “I’ve got to get up!” and start to get up. I have to stop her and say, “You’ve got shit hanging out of you. You can’t get up until you push it out!” Then she says her line again and I repeat mine, ad nauseum. The other part of our “conversation” is me telling her to “PUSH!” (repeatedly) and her saying, “I can’t!” (repeatedly). UGH. When she gets it out, I cheer. That is what my life has been reduced to. And if she doesn’t go in the morning, I have to worry and wonder all day when/if she’ll need to go. I’ve had to do an external “digital stool removal” and also had her crap in my hand while I wiped her. It’s futile to ask, “Are you done?” because she’ll answer the opposite of the real answer or else, “I don’t know.” There is no way I’d put her on stool softener since like most normal people, she can sometimes go easily or before she’s ready.

I know she needs more exercise but she’s really only capapble of walking from one room to the other a few times a day. I try to make sure she stays hydrated even if it means she’ll end up wetting the couch or bed. Drinking water keeps her bowels moving. She doesn’t like to drink and I have to bug her to drink several times a day or she’d drink nothing. She’s gotten so she wants me to open the water bottle and pour it in her mouth. There is no happy medium, once in awhile she’ll drink 2 or 3 bottles of water straight down. Even if I tell her not to drink so much, she obviously doesn’t listen to me one iota.

On Tuesdays I give her a bath which I’ve also written about at length. I still try to get her to wash as much of her body by herself. You can tell she wants me to do it. I do some but want to keep her being able to do SOMETHING. She’s still able to get in and out of the tub which at 4 months shy of 95 years old is amazing! I still worry and dread every bath day that that will be the day she won’t be able to get out of the tub. Especially when Greg is gone out of town and I fear having to call the fire dept. because I can’t lift her out myself.

I was rereading a few of my Alzheimer’s posts and didn’t realize how bad things have been and for how long. On vacation, Mom no longer asks, “When are we going home?” She no longer cares for sweets like she used to. She used to love candy and wanted some every day or some dessert. Now if I ask her if she wants some, she usuallys says no. She hasn’t been able to use the mouse on the computer for over a year and even using the space bar on the keyboard, she still manages to hit the wrong button and get herself knocked out of her slot machine game. I have to check on her every few minutes. Some days she can paly a few hours on the computer and not screw anything up. Other days, she hits the wrong button 25-30 times. I patiently explain to her what to hit each time and it doesn’t sink in.

A month or so ago, I was lamenting to her how I don’t have any friends. I don’t even remember why now. Out of the blue, she says, “You’ve got me!” which should have been touching but it was just a sore reminder of the friend she used to be to me. I said, “Do you talk to me?” and she took a long time to answer and then said, “Well, no…”. That’s been the biggest conversation we’ve had in months, maybe years. I don’t usually talk to her about things because she doesn’t usually answer.

The smallest things can give difficulty anymore. Taking her 4 pills in the morning used to be no big deal. She takes a multi-vitamin, a blood pressure pill, Plavix (blood thinner) and an incontinence pill. As I put the pills into her hand, I tell her to “swallow them, don’t hold them in your mouth” and give her a half glass of apple juice. She swallows all but the multi-vitamin which she rolls around in her mouth and chews (with no teeth). No matter how much cajoling or persuasion, she won’t swallow the pill! The first time she did this, I didn’t notice until she was eating her cereal and she still had it in there. Miraculously, she still had it left in her mouth after eating an entire bowl of cereal. That takes talent or determination but I was too flabbergasted to figure out which. This doesn’t happen every day, mind you, but it’s happened a handful of times. Now I just make her spit it out. I’m afraid to stop giving it to her since then she might pick a different pill to not swallow. She still does that with food she eats that she saves one last mouthful that she won’t swallow and will chew it all day (we’re talking HOURS) unless I make her spit it out.

I love the smell of urine in the morning. That’s a joke I make to get me through the unpleasantness that is waking up. 2 years ago my life got considerably better by finding out about absorbent bed pads. I spread 2 across Mom’s bed and it catches the majority of what the diaper doesn’t hold. Believe me, that’s a lot! As things have gotten worse, I’ve had to strip the bed almost daily to dry the rest of the sheets that have gotten wet. I don’t wash them every day or I’d get nothing done! Besides, she lays on a dry pad so it doesn’t matter. In the beginning, I tried to be frugal and if the bed pad was not that wet, I would hang it to dry and it could be used again. Now it’s so wet that I just fold it up and throw it out. It’s crazy how much I dread getting up anymore. I can’t stay in bed even on vacation because I don’t want Mom in bed more than 9 hours at the most (usually 8) since the longer she’s in bed, the wetter it’ll be. I need to get her walked from the bed to the bathroom which feels like I’m pulling a mule sometimes. She’s gotten a lot slower to move and wants to grab on to things as she goes by for support. I get her into the bathroom and positioning her in front of the toilet sounds like it would be simple. She’s stubborn and won’t turn and doesn’t seem to know why we came in there. I peel off her reeking nightgown and get her to sit on the toilet. She won’t always go pee though. Sometimes it’s because she went in bed. Other times she is too agitated to relax enough to go. I’ve tried to do a Pavlov’s dog thing where I tell her to “put your hands together, close your eyes, take some deep breaths, relax and go pee”. That worked for awhile but lately she’s been contrary and keeps wanting to get up. I have to listen to hear if she pees. If there’s other noise going on, I have to lean her over and look to see if she’s gone yet. I also check to see if she’s started taking a bowel movement. The fun never ends.

Have I told you that I dread going to bed at night? Yeah, that too. I’m not afraid of hard work and don’t mind helping her or people in general. I am more than willing to do for someone else but it all feels so futile. If our repertoire involved a different level of interaction, my life would be so different. If she crapped on the floor and was like, “I’m sorry, honey, that I had an accident and left a mess for you to clean up.” I’d be like, “That’s ok, Mom. I’ll take care of it. Don’t worry about it.” That is not my reality. I shouldn’t expect gratitude or even credit for caregiving. I can’t expect a smile or hug or even a kind word. I’m unrealistic to expect an answer to anything I ask her. The saddest thing is things aren’t going to get better. They are only going to get worse. How does a person “keep on keeping on” when their day is just one depressing thing after another? I don’t know but I’ve been managing to do it. I wish I could say I never lose my temper or never get frustrated but I do. I guess that makes me human.

My hubby tells me at least once a day, “You’re such a good person.” He never gives me any other compliments. I don’t feel like a good person. I feel like someone who has no choice and is doing the best they can. One day I told him, ‘I hate it when you tell me I’m a good person”. So then he replies, “That’s why I do it!” Argh.

So we were watching “Bounce” a movie from 2000 on Netflix with Ben Affleck and Gyneth Paltrow. In one scene, the female character gets up from a booth in a diner where they are sitting and talking to someone else to run after a woman who came out of the restroom and unknowingly had toilet paper stuck to the bottom of her shoe. Instead of making an issue about it, she just went up behind the woman and stood on the paper and let her “walk it off”. The woman who had the toilet paper on her shoe never knew that the female character had done this for her. She came back to the booth and said nothing about it to anyone. It was just the right thing to do and she did it. That’s a good person. When I saw that, I got tears in my eyes, I thought how I wouldn’t mind being that type of good person….

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We got back from our first RV trip of the year on Sat. July 4th. We went up to Green Bay, WI for 9 nights. It was nice but in some ways didn’t seem like vacation since we had to take Mom into consideration on everything we did. The first 4 days went good, we took her gambling (which we haven’t done since December in Tunica, MS) and she was ok. Then that Monday night she fell out of bed TWICE! She’s never done that before at home or in the RV. I sleep with her in the RV to keep an eye on her. After that I didn’t sleep all night. She got all black and blue and I was afraid she’d break something. The first time it happened, she got back up in bed no problem. The 2nd time, she said “I can’t!” when I tried to get her up. Finally, she got back up and was back to sleep in 90 seconds.
Amber & Elvis (in the bed) in the RV.

Amber & Elvis (in the bed) in the RV.

This is the first time we’ve gone anywhere in the RV where nothing went wrong! I was afraid to say it at the time but since we’ve returned home, I’ve been brave enough to say it. It’s hard to believe that something major (or minor) didn’t break down with it the whole time! It would be wonderful if this started a new trend and we could relax on vacations instead of wondering when the RV would act up…
Greg & the dogs on the picnic table in Green Bay.

Greg & the dogs on the picnic table in Green Bay.

Within a few days of coming home, Mom’s hearing aid kept filling up with gunk. I had to clean it out a few times a day. Then a week ago I saw her ear canal looked shut so I used a bobby pin and pulled out what looked like white dead skin. <gag> When I gave her a bath last week, I noticed a bunch of crusty orange stuff on her ear and going down her neck. I had seen it the day before and thought it was food. My bad. It usually IS food… Then when I changed her sheets, I noticed orange-ish brown stains on her pillowcase. So I figured out she had some kind of ear infection. She sees her ENT doctor once a year and that would be the end of Sept. but this couldn’t wait. Her doc is so booked up that he has 2 offices and only goes to the location by us once a week. He’s also triple booked and they couldn’t get us in at either location for weeks. So they offered to let her go to his partner Dr. Hughes. We’ve never even seen him before but were very appreciative that they could fit her in. Sidenote: Dr. Hughes looks just like Kip from The Millers. “The Millers” is this fabulously funny sitcom. There are very few sitcoms I like at all but this one is hilarious. So I got her in last Thurs. July 9th. It took a few hours since she had to see Idea (the hearing aid person aka audiologist). I am torn about Idea for a first name. If I was her husband, I’d never get over saying, “I have an Idea!” and then laughing at my own joke.
Ivy in our backyard. Dog Run sign is new from estate sale.

Ivy in our backyard. Dog Run sign is new from estate sale.

So I’m one of those people who google symptoms and self diagnose. Can’t help it. I’m wrong probably half the time but don’t always give myself a good scare with it so that’s something. I had googled Mom’s “discharge” (even the word is disgusting—how’d you like THAT for a first name?!) and it said “glue ear”. I was pretty confident and told the doctor. He didn’t say anything. So towards the end of the appt., I wanted to pat myself on the back so said, “Was I right about the glue ear?” Uh, no. Apparently, I need to hold my tongue. That is what someone with an intact eardrum gets. Mom has a hole  in her eardrum. Which I did not know or didn’t remember. I knew she did 4 decades ago and had surgery to put a patch on it then. So he said when you have a hole in your eardrum, you get drainage. I told him she’d never had it before. He said he was surprised she hadn’t. He prescribed drops containing antibiotics and a steroid. So I’ve been busy putting 4 drops in her right ear twice a day. At bedtime and after I get her up and onto the toilet. Her right ear is her “good ear” if you can believe it so she can’t hear ANYTHING out of it now. Plus she has to leave her hearing aid out until she goes back to see the doctor for a follow up. That’s right, I’m taking her back on July 23rd. The fun never ends.
We've had milk cans for yrs. Hubby just got tractor seat in WI. Now he painted both.

We’ve had milk cans for yrs. Hubby just got tractor seat in WI. Now he painted both.

Making lemon pie out of a bad situation (because lemonade is so overdone), we actually got to go to lunch after the doctor’s appt.!! It was Greg’s day off and we hadn’t eaten out yet this year. Mom was all dressed up in her good clothes and freshly bathed and it was just the perfect time. We never got to go our for hers or Greg’s birthday or our anniversary. We just had to take it as it comes and jump at the chance. We went to Boston Fish Market. Greg and I had a tuna sandwich with fries. Not canned tuna, a tuna fillet. Mom had fried fish and coleslaw. She doesn’t like fries so we took those home and ate hers the next day. Mom did great eating and it gave me hope that we can do this again sometime.
Hubby just got this for free. Corrugated metal Halloween sign.

Hubby just got this for free. Corrugated metal Halloween sign.

Communicating has been harder than ever with Mom’s hearing deficit. I find myself shouting at the top of my lungs and she still doesn’t answer me. Getting Mom onto the toilet, the dialogue goes like this: Me: “You need to go pee.” Mom: Silence and she tries to get up 10 seconds after her ass hits the seat. Me: “Put your hands together, close your eyes, relax and go pee.” Mom: Silence and tries to get up. Me: “You need to go pee while you’re on the toilet! DO YOU HEAR ME?!” Mom: “Yes, I hear you” and tries to get up. Me: “Then you need to answer.” Mom: “You need to answer.” Repeat this scenario multiple times a day about any subject you can name. When we were in the RV and left her playing games on the ipad, we’d come back and find her in the passenger seat facing the windshield! Once she was sitting in the driver’s seat!! I asked her what she was doing up there and she said she was going to drive but couldn’t find the keys. That was a scary thought since she hasn’t driven in 20 years!! The only answers I get to questions are “I don’t know”, “Answer” or silence.
Hubby's getting ready to build a pergola. We saw this at an estate sale & liked it.

Hubby’s getting ready to build a pergola. We saw this at an estate sale & liked it.

The Sunday after we came home, there was a breakthrough. I finally figured out WHY Mom picks her leg and arms. I was looking at Chibi Jeebs blog and she was talking about skin picking. It’s an OCD disorder called Dermatillomania. It is repetitive picking of one’s own skin to the extent of causing damage. Usually this is younger people and they do it to their faces or scalps. Mom has had this since her late 50’s and probably got it when she gave up smoking. It’s like a nervous condition that becomes a habit. Back then I remember her picking her arms where there were no sores or anything wrong with the skin. She would pick until they bled and they would heal and leave scars. I think back then she was able to quit for some periods of time or only limit to her forearms. From what I read, the only cure seems to be behavior modification. I don’t think that would work for Mom with her marbles loose. However, just KNOWING what it is has been a weight off my mind. I can be with her 24/7 and remind her not to pick but it doesn’t last. She keeps trying to do it and I keep her leg covered. Then I will be away from her for a few minutes and she will undue all the healing in a no time. I had no idea this was a “thing”. I find my stress level has escalated anyway and I’ve turned into someone who is coping by eating anything and everything in sight. I’ve had my moments of that in the past but now I don’t feel strong enough to resist nor do I want to. I feel bad afterwards but not long enough not to do it again the next night. It’s either eat everything in the house, drink or both.
Before we left on vacation, I cut up and froze a TON of rhubarb.

Before we left on vacation, I cut up and froze a TON of rhubarb.

So that’s where things stand here. Trying to make it through another day. We don’t have anymore vacations in the works until around Labor Day. We’re also trying to cool it on the estate sales until she get the house and yard a bit more organized. I am having a hard time posting at all to Instagram and have (for the most part) abandoned Twitter. I don’t know how to bring myself back. It’s not that I have nothing to say, it’s that I don’t feel confident to put myself out there. Someone on IG was asking about starting up a blog. A ton of people were telling her that blogging is passe and no one reads them anymore. I hope not! I think blogging should be here to stay. It’s such a reflection on society that people can’t stick with blogging for more than a few years yet can get tattoos that they’ll have to live with for the rest of their lives!! Everything in life changes. At least with a blog, you can change what you talk about and be fairly flexible with writing. But what do I know?! Not much.
Backyard from upstairs window. Nice & green but cluttered.

Backyard from upstairs window. Nice & green but cluttered.

When I was in college, I was friends with a girl named Edie who was from a dairy farm in SW Wisconsin. She was going to become a vet and from my research on the internet, she has succeeded. She always had a saying when someone dressed a certain way or told too much personal business, “she has no shame.” It got to be a joke between us and we’d say it to each other about everything. We had great fun. Anyway, I feel like on my blog I have no shame. I write about anything I want. Consequences be damned. Things others would gloss over like shit on the wall, disgusting crusty ear discharge, skin picking and any number of other gross things, I go all out sharing with the world. The only reason I can think of for doing that is how freeing it is. That and I have no shame. Holding things in will kill you. That’s why I insist on laughing hard every day. Not like a crazy person. Ok, some days like a crazy person. Laughing keeps me sane and lets out the hurt, pain, resentment, etc. So go have a good laugh on me or at my expense. It’s the least I can do for my fellow man.

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I’ve been searching high and low for a spare moment to do some blogging. I need it for my soul. There were a few days this past week that I thought I’d be able to take a few hours to put my thoughts in order. Boy, was I wrong. I’m not even kidding. Something always comes up. So now I’ve decided to just do a quick (but lengthy) post of what’s been happening around these parts.
Garden plant shopping

Garden plant shopping

We have still been having the funniest year for weather ever. The 2 days before June it was only in the upper 40’s for a high temperature. I started wondering if someday (possibly decades from now) the seasons will be switched with the 2 hemispheres like Australia will have our seasons and we’ll have theirs? Global warming and all, you know. In any case, it would make an interesting plot for a book or movie. 😉 We have been alternating the very cold temps with a few days of mid-80’s which is hard to get used to. One day you’re wearing shorts and sandals, the next pants and a coat.
Peonies & bridal wreath in our backyard by koi pond.

Peonies & bridal wreath in our backyard by koi pond.

Due to the above weather constraints, we got our garden in late this year. We also decided to rotate the crops, planting our tomato plants where we’ve always had our peppers and vice versa. We kept the cucumbers in the same place. We also decided to do about half as many plants and spread them out more. We still do a lot–18 plants each but it’s a lot less than we used to. We always crowded our plants and that makes it hard to weed. Not like that’s one of my favorite things but they should produce more if given more room too. We got our plants on Thurs. May 21st and it took 3 days to get them all planted. I remember when we used to be able to plant everything in a day. We planted the herbs (basil, chives, dill, cilantro, thyme, curry, rosemary) the day we got them. Then planted the tomatoes the next day and the peppers on Sat. They are doing nicely. We usually get some other veggies like squash or beets but this year, we’re keeping it to a minimum. My rhubarb is doing fantastic. Possibly the best year ever. I have 3 plants and they are 3 different varieties. I picked most of the largest (oldest) plant and got 21 heaping cups which I put in freezer baggies and froze. I got 4 new recipes off the internet and the first one I made twice already. I really need to look no further since this is the best use of rhubarb I’ve ever seen. They are Rhubarb Dream Bars and have a buttery crust with a custard type filling. They are good warm or chilled. If you’ve never tried Pie Plant (rhubarb), you’re missing out!
New Weber gas grill

New Weber gas grill

Hubby got a new gas grill on May 21st also. We’ve been without one since around Nov. We normally grill all year round, no matter the weather. This time hubby wanted a Weber brand which is supposed to be superior to others. It’s a smaller grill than what we had but so much nicer! In almost 30 years that Greg & I have been together,  he’s done all the grilling. I always thought of it as a man’s thing. Now with this grill, I’ve started grilling and found out it’s not hard at all! I’ve been grilling a ton of veggies that I would normally roast in the oven: eggplant, cauliflower, broccoli, mushrooms, etc. I’m having a lot of fun with it. I won’t be taking all the grill duties away from hubby but it’s a good thing to know how to use it. Now we can get back to having salmon and sweet potatoes a couple times a week.
Mom at 94

Mom at 94

My mom turned 94 on April 23rd. It seems like things are getting harder daily. I don’t know if they’re necessarily harder for her, but they’re harder for me. It is no longer a full time job to be her caretaker, it is a 24/7 job. A lot more “babysitting” and checking on her is needed than ever before. We’ve scaled back our treasure hunting a lot so I’m not gone from her as much. We went out one day the past few weekends. Mom’s latest thing is drinking water. She hadn’t drank much water her whole life. She would avoid drinking it due to her bladder. I know she needs some to keep hydrated but don’t want to force it on her. I’ve always kept a filled water bottle next to her on the couch. She knew it was there but never reached for it. Now she drinks the whole thing and then keeps handing me the bottle. I like to fill it and put it back next to her but she doesn’t remember drinking it. I’m sure you can see where this is going long before I could. She would drink 3 or more bottles of water in row. I had to put a stop to that since the diaper only holds so much. She’s only been in diapers in the daytime for the past 2 days. After she literally “shit the bed”. It had come out of the diaper and was just smeared over the entire bed and her. So doing laundry has been keeping me busy. I finished up everything in the house that could possibly be laundered a few days ago, only to have to do several loads in a row. Her sheets and mattress pad, her thin quilt, a huge load of towels and her nightgown. A month ago or so she must’ve done the same with more solid material because when I went to wake her, she had both hands covered in it and I had to cut it out of her pubic hair. Never a dull moment! :-{
Wood for project.

Wood for project.

Hubby’s been busy too since he started a new project. It’s been awhile since he’s done any carpentry. He loves it and misses it. I know he gets a lot of pride and satisfaction by building something from scratch. Lord knows he’s got enough tools for every conceivable task. He’s now making a wooden floor on the muddy outside area along the north side of the house. It’s been fenced in there for years but we can’t use it. We’ve even tried planting in there (onions and beets) but it’s so muddy you can’t walk and it gets no sun. We’d like to use that wasted space for storage. If nothing else for our packing supplies like cardboard boxes and bubblewrap. It would free up a large portion of the garage which we can’t even walk in now since we are saving boxes we may use “someday” in there. I could joke and say that the tv show “Hoarders” wanted to come here to film our mess (I mean house) but they said it was a safety hazard…
Hubby before starting.

Hubby before starting.

We haven’t taken any vacation yet this year and are starting to get antsy. The RV is in the repair shop now for the horn (which turns out it was “unplugged”) and the cruise control which needs to be replaced. Neither one has worked in at least 2 years. Our “all inclusive” warranty lasts until Nov. so I wanted this fixed while we have it. We still have a $50 deductible but we can handle that. The RV dealership couldn’t fix those 2 items since they are part of the engine/motor and not the “coach”. So that was part of the holdup too. Taking it to a Ford dealership that works on RVs. Since we’re trying to get the most out of Greg’s limited vacation time, we are thinking of taking the 4th of July holiday week. Then he only has to use 3 days (30 hours). We’d like to take our anniversary week or my birthday but it doesn’t work out. We’ll probably go up to WI, if we’d gone any sooner, we might’ve frozen to death.
Sky, clouds and sun. This tree now is full of green growth. 2 months makes a huge difference.

Sky, clouds and sun. This tree now is full of green growth. 2 months makes a huge difference.

May 21st Greg & I went to the doctor. Yes, that was a ridiculously busy day! A trip to the doctor, one estate sale, buying plants, planting herbs, getting a new grill…No wonder I don’t have time to blog. Ha!  It’s been 2 years since I had a pap smear so I just bit the bullet and called. We go in together and it went fairly well. Greg’s blood pressure is forever high even though he’s on 3 blood pressure meds. It runs in his family. The doc added a small extra dose in the evenings of one he takes. The doctor actually said to me, “I pronounce you healthy”. Which was kind of a relief until I brought up my spinal stenosis. The past 2-3 months it has gotten A LOT worse. I used to only have pain when standing or walking. Now I have pain when laying in bed, when first sitting down, when bending over, etc. I used to only have the pain in my legs like shin splints. Now it is more like charley horses and it’s in my back too. He told me to go back to Dr. Hennessy who he sent me to 2 years ago. Then he said it wasn’t that bad but told me to lose weight. I hate to go back when I haven’t lost weight. I may be 5 lbs. down if any. Food is a comfort to me with all I have to deal with. I guess that makes me a failure. I need to find out if I can get an injection that might help. I really don’t want surgery. He scared me a lot saying that if I wait too long, I may have permanent nerve damage and the pain will never go away. Yikes. I got an order for a mammogram and finally called to make the appt. for that. It’s set for Tues. June 23rd at 10:50 am. One thing at a time, I guess.
I'm in love with these 2 dress forms. I call them my dummies.

I’m in love with these 2 dress forms. I call them my dummies.

The doctor told us to stop back sometime this summer to get our blood drawn. He wants to do it after fasting for at least 8 hrs. I mentioned that I heard on the news that you can tell from a blood test if you have cancer. He said that wasn’t true and then got into a long tangent about cancer really coming down to “bad luck”. I guess I should feel lucky then! I also asked about a mole on my left boob that looked suspicious to me. It was embarrassing to have to show him but I was sick of worrying about it. A friend I knew from slams died last year from skin cancer so that certainly puts things in perspective. He said it was fine but keep an eye on it. I told him I wanted to get a bunch of moles/ skin tags cut off. He’s always so brutally honest that he said that it didn’t make sense since they would most likely grow back again in 6 months! I had that happen with one already so I do believe him. After going to Dr. James for 19 years, he finally gave us his personal phone number. I doubt we’ll ever use it but it’s nice to know we can if we need to.
A terrific read.

A terrific read.

Treasure hunting has been interesting. We’ve gotten really interested in old books. Preferably over 100 years old. I used to be so fussy about the condition and I still would rather have the binding intact but now if something looks like a captivating read, I don’t pass it up (if the price is right). Which brings me to opening another Etsy shop just for vintage ephemera (books, postcards, greeting cards, stickers, letters, etc.). I call that one Ephemera Addict to compliment my DejaVu Junkie vintage shop. I am also starting a similar shop on Instagram called Ephemera Junkie. It’s not even that I’ve had so much success on there but want to have an outlet to share my love of all things paper. I just finished a swell book from 1926 called My Friend The Dog. It’s a bunch of short stories about collies. They all have fairly happy endings which I like. The world doesn’t have enough happy endings to suit me! In one of the stories, a dog gets in a fight and is injured and it’s 2 weeks before he can “resume the burden of living.” I get such a kick out of the way things were worded back then. It is a sheer delight to partake of the mindset and morals of the past.
My friend the dog. Aka Elvis.

My friend the dog. Aka Elvis.

On that note, I’m going to step away from the computer and resume the burden of living. 🙂

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It’s been awhile since I’ve written about the demon that’s invaded our home. It’s called Alzheimer’s. A few weeks ago, I was telling hubby a small fraction of the day I’d had dealing with Mom. He looked at me and said, “You should either make a standup comedy routine out of this or write a horror story.” He’s so right, I could go either way.

In horror stories, usually the demon has to be invited in. With Alzheimer’s, no invitation was issued, nor was an RSVP received. Talk about an uninvited houseguest. This one comes and never leaves until it’s sucked the life out of you. Most demons take your soul but Alzheimer’s steals your brain, not just the mind that holds memories but the entire organ including the first things we learned how to do to function. Like the ability to comprehend speech, let alone answer. The ability to form words or sentences. To sign your name. To recognize loved ones. To recall the name of things. This demon alters the possessed’s personality and hijacks their emotions. Nothing can make the person happy or sad any longer. They just exist to hold the host demon inside for it to feed off of…

Things have been “progressing nicely” if your goal as the demon is to liquify the brain completely. The decline is rapid and thorough now. I always felt as long as Mom had a good appetite and still ate, she’d hang in there. The past week or so, she’s been having trouble eating. She does fine with her Cheerios for breakfast but lunch is another matter. I’ve always made her a sandwich, same as mine, but lately I’ve been cutting it in 6 or more pieces instead of just 4. Even so, some days it takes her OVER 2 HOURS to finish it. Then she won’t have finished it. She’ll have a huge glob of food balled up in her mouth and just be chewing it (no teeth). Sometimes I wonder if her entire sandwich isn’t squished up into 1 piece! She won’t swallow it and if I let her, she chews it for hours. Lately I’ve gotten her to give it to the dog, Elvis. I have her push it out of her mouth and he takes it from her. I’m surprised she does this since it’s almost like “kissing” a dog which she would never do. One day I served her lunch, went back to get mine and when I came back her plate was empty. I asked if she’d let the dog eat it and she said “I don’t know.” We’ve had to put Elvis on the leash while she eats since he’s deaf and he waits for her to spill. It’s maddening. The alternative is she spits the food out onto the floor (which I’ve seen her do).

Everything gets exponentially harder daily. Yesterday was bath day which is always the hardest. She doesn’t listen to me hardly at all anymore. I don’t think she’d listen to anyone else any better. It’s gotten to the point where I can’t leave her alone much. Obviously I have to at times, just to cook meals and do household chores. I can’t trust her to follow through on things I tell her. Like I used to just walk her to the bathroom (holding hands) and leave her, maybe check on her once while she was in there. Now I have to walk her and stand in the doorway while she goes. I have to keep track of IF she went or not since if I ask her if she went, she says, “I don’t know.” I have to tell her to take her soiled pad out of her underpants. Even if she sees it’s soiled, she doesn’t think to do anything about it. I have to give her a new one. I have to open it for her and watch that she puts it in her underpants correctly. I keep the Poise incontinence pads under the sink in the downstairs bathroom. She used to know to open the cabinet, reach in and take one. Now if I’m not with her, she may take the soiled pad out and not replace it at all. One day I left one on the sink and she went earlier than usual without me being home. She put the entire pad still wrapped in the plastic, inside her underpants. It’s folded into thirds with a plastic on top. I have to hand her toilet paper or she won’t use it. I have to count how many times I hand her toilet paper (5 in a row and I have to flush) so that the upstairs toilet doesn’t get clogged and I have to plunge it. I have to stand by and make sure she USES the toilet paper and doesn’t just set it on the sink or put it on top of the pad in her underpants. I have to make sure she wipes enough and in the right area and doesn’t give herself an infection. I have to watch and make sure she puts the used toilet paper IN the toilet and not in the sink, or on the floor. She often wants to hand it to me. NO THANKS.

You’d think this would be ENOUGH. But I can’t leave the room yet. I have to tell her to flush the toilet. Or sometimes I do it for her. It’s not always worth shouting about. She’s hard of hearing so I feel like when I do address her I’m always shouting. The less reaction she gives me, the louder I yell. It’s exhausting. Then I tell her to wash her hands. You’d think I could walk away then.But no…I have to make sure she uses soap. And then stick around to show her where to dry her hands. EVERY SINGLE TIME. She doesn’t go to the bathroom as much as most people so I should count myself “lucky”. She goes in the morning when she gets up, before lunch, before dinner and at bedtime. Occasionally, there’ll be another time. She doesn’t drink much water and then when the mood strikes her, she’ll drink 2 full bottles in a row. I still have trouble catching her always trying to stand up from the toilet without wiping or with feces hanging out of her. The struggle is real. 

Some of this sounds atrocious and I probably shouldn’t even put it in print. Maybe the worst thing that bothers me is her lack of interest in EVERYTHING. She doesn’t care what she eats, what she watches on tv, what she wears, you name it. I no longer see her smile ever or get any joy out of life. She sits in her recliner in the living room and I tell her to “put your legs up”. She lifts them together about 6 inches off the ground. It’s like a bad joke but no one’s laughing. I have to tell her to “use the handle”. EVERY SINGLE TIME. Some days she reaches for it and says, “I can’t”. She doesn’t even really try. It’s the worst to do for someone else who doesn’t try for themselves.

She was always somewhat demanding and difficult. I guess I didn’t really pay that much attention to it. She used to boss me around, “Cut my hair!” or “I want ice cream!” I used to be annoyed because I felt like it cut into my time. Now if only she could express what she wanted. As it turns out, my time is not my own anyway.

I’m on day 9 of one of the worst colds I’ve had in my life! I haven’t had a cold this bad in over 20 years. Back when I used to get them like this, I was working 3rd shift (nights) at the Post Office. I would stay in bed for at least 3 days to recover. Now I can’t even take a nap. I have someone to care for 24/7. Possibly the worst is that she has no comprehension that I’m sick. She doesn’t acknowledge it or have any compassion for me. Now hubby has caught the cold. He’s about 2 days behind me. I’ve been very diligent with washing hands and trying to keep from infecting my mom since a cold like this could kill her. I wouldn’t wish this on anyone! Not the cold and not Alzheimer’s!!!

Even Mom playing on the computer has become a challenge. We have it set up so she only has to push the space bar on the keyboard to spin the slot machine games. If she hits the wrong button, sometimes a grey box or a white box will come up. You have to tap or move the mouse to get it to disappear. She used to be able to move a mouse, now she doesn’t know what a mouse is!! I have to get up from wherever I am and fix it for her every time. Sometimes she can go all day without hitting the wrong thing. Other days it will come up every few minutes. She won’t call to me if I’m in the other room to tell me either, so I have to walk in and check on her every few minutes.

It’s similar to every day I have to hand her a kleenex and have her blow her nose. I can usually hear if she’s got snot in her nose so I try to get to her before she does things like sneeze everywhere or wipe snot somewhere. I have to stand there and make sure she blows her nose or she’ll just take the kleenex and fold it up and lay it somewhere. I can’t just tell her “the kleenex box is on your left” because it doesn’t sink in.

Mom falls asleep a lot and doesn’t know if it’s time for bed or time for dinner. When I take her to the bathroom before dinner, she often tries to go upstairs to bed. I have to tell her no and get her moving the other way. I’ve been cooking a lot (as usual) and made a couple of pork roasts. I got out 2 crockpots and prepared a whole bunch of veggies and cooked them up so I wouldn’t have to cook every single night. I still end up making more veggies later and improvising in different ways using the roasts. One night we had a frozen pizza and she hates them. I’m not too fond of them either but I was sick and didn’t want to fuss. I asked her if she wanted pizza or would she rather have a small scoop of cottage cheese for dinner. She said, “I don’t know.” So I gave her the cottage cheese and she ate it right up. I guess I could start making soups and things for her. It seems more that she’s forgotten how to swallow than anything else.

I started babysitting when I was 11 years old. I took a babysitting course from the Red Cross at the YMCA and got certified. I learned CPR and all that other good stuff. I was gungho to make money. I got jobs right away. Nobody wanted to pay anything. I guess 50 cents an hour was the average back in mid-1970’s. I had a young couple who lived next door who even had me babysit when they moved way across town. They paid like $1/hr. too which was great. Then I had a nightmare babysitting job for a woman across the street. She had rented from my dad the apt. next door and then later moved across the street. She was divorced and was a waitress at a chinese restaurant. She had one child who was a demon! This child would not listen at all. As soon as you got done telling her something, she would ignore you. I would say she was around 5 yrs. old. I stayed with her and played with her all day from mid afternoon until her mom was supposed to be home at 10 pm. We were in the house (while it was still light out) and I went to use the bathroom. Just a quick pee and I came out and the child was GONE. I wasn’t worried the kid was abducted or anything but how would I find the child? It was a girl and I was frantic. I went out looking for her with no luck. I called my dad for help. My mom was working. I wouldn’t call my dad unless I had no other choice. He helped me drive around the neighborhood and we found her. This child was impossible to control. I put her to bed and she kept getting up again and saying she wanted me to make her bacon. That sounded crazy to me. The kid kept carrying on. the mother called to say she’d be late and to go ahead and make the kid bacon. She said she’d be home by midnight. Then she never showed up until 3:30 am and I think it was a school night. Then she paid me what amounted to less than 25 cents an hour!! She called me later to babysit and I told her NO. She asked why. I told her she didn’t pay enough for what she put me through. No amount of money is worth that kind of aggravation.

It may seem odd that I’ve brought this up but I think of this scenario every single day. I have the same helpless feeling with my mom that I did with that girl I babysat. I get my mom to the upstairs bathroom and sit her down on the toilet and then I quick RUN a few steps to her bedroom and get a diaper and her glasses case and hearing aid container. I tell her to sit with her hands together (so she doesn’t pick her leg) and wait. Before I can get back to the bathroom, she’s trying to get up! I scream, “NO!” and get her sat down. Then I RUN to her bedroom, pull back the covers and put down the bed pads. By the time I’m back, she’s trying to get up again or HAS gotten up. Without wiping. She doesn’t know enough to pull up her pants so may just be standing there. What I’m living now, makes me relive that type of unpleasantness from that babysitting nightmare.

I’ve been trying to figure out WHY I’ve gotten into collecting religious artifacts at all, let alone during this time in my life. I’ve come to believe that it’s because I’m trying to ward off the demon Alzheimer’s. Not only am I afraid inhabited my mother, I’m afraid he has his sights set on me. In horror movies, often the demon leaves one host only to make himself at home in another nearby being. Scary stuff but nothing compares to reality and  how frightening it is to watch someone disappear before your eyes.

No amount of wishing, praying or hoping can get the demon to leave. Alzheimer’s has taken root and is here to stay. No exorcism can remove the demon from our lives. Today I was counting days of the week to see how long I’d had this cold. I go, “Tuesday, Wednesday, Thursday, Friday, Saturday, Sunday, Eighty, Ninety, One Hundred…” I’m not even kidding. I caught myself and did it wrong a total of 3 times. I can’t even make this stuff up. I’m going to say this is the cold messing with my head (even though I’ve taken no meds for it) and not freak out that I’m losing my mind as well.

I have finally come to terms with how people can put a loved one in a nursing home. I honestly couldn’t see it before. I’m still not going to do it but at least I understand. People must feel that one life is enough to sacrifice and lose. By being the caretaker of an individual with Alzheimer’s, you are giving up your own life. So basically 2 whole lives are wasted, not just one. I’m assuming this is my purpose in life since I haven’t accomplished much else. I’ll just continue to take it one day at a time since looking beyond that is overwhelming.

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Happy New Year to all my readers and friends who are checking in to see what I’ve been up to. 🙂 We did decide to forgo putting up a Christmas tree at home for spending the holiday in Tunica, MS again. We got back the evening of New Year’s Day and I’m still playing catch up with everything at home. I’ve got laundry going as I sit down to write this and will be making Cottage Cheese Chicken Enchiladas later. Today is the Packers playoff football game but since hubby is working, we’ll watch it tonight after he gets home.
Hubby grows a beard every winter!

Hubby grows a beard every winter!

Hubby had his work Christmas party on Wed. December 17th. It was also a going away party for one of the lawyers in his office who was taking a job in Hawaii. Hubby volunteered to decorate the tables and rooms for the party so I helped him pick out items for the display. We both like doing that and we used a combination of Christmas and Hawaiian items. I baked 4 dozen peanut butter cookes and 2 1/2 dozen Russian Tea Cakes. I made both from my mom’s 1950 Betty Crocker Cookbook. Everything in there is really the best. There were only a few cookies left and we ended up bringing them along on our trip.
The Babes--pay no attention to my double chin.

The Babes–pay no attention to my double chin.

We left Thurs. December 18th and spent the first night behind the Resorts Casino in the parking lot. Then checked in at Hollywood Casino RV Park for 13 nights. So we were there a total of 2 weeks and it was quite enough! We had planned to come home on Friday Jan. 2nd but the weather was turning bad with snow expected. We decided to get out a day early and beat the elements. That meant staying up until 1 am and then getting up at 7 am to get ready to leave. There is no way I’ll ever agree to spend New Year’s Eve in bed sleeping. Last year we’d been over at the casino at midnight, gambling and in jolly good spirits. This year, Mom had no desire to be in the casino and I wasn’t about to leave her alone then. So Greg & I spent New Year’s Eve watching music videos on YouTube! It was actually a lot of fun! My very favorites are Psy’s “Gangnam Style” & “Gentleman”, Pitbull’s “Timber”, Jessie J.’s “Bang Bang” and ALL of the videos by Ylvis (2 Norwegian brothers) most famous for “What Does The Fox Say.” Mom had fallen asleep on the couch across from us and we woke her to wish her Happy New Year and then I put her to bed.
Me & the dogs. Never far apart.

Me & the dogs. Never far apart.

Aside from one event a day and a half before we left (which I’ll be writing a separate blog post about), this vacation was rather boring. Greg calls it peaceful. It was a lot colder than Thanksgiving so I didn’t get outside as much. Greg still managed to get the dogs out for long walks and I went a few times. There was like 3 days straight of rain in the middle of the 2 weeks. We did hardly any gambling. We went several days without playing any slot machines at all. We watched a lot of movies on Netflix which was fun. We don’t manage to do that at home like you’d think we would. We also did some reading. I finished D.H. Lawrence’s “Sons & Lovers” which I thought was really good. Then I started “Women In Love” and am halfway through and find it dull. I’m going to finish it because I expect it to get better at some point!
Here's your Christmas Card!

Here’s your Christmas Card!

Over Thanksgiving, we got our entire stay comped in the RV park which was nice. Plus our meals free. This trip we had to pay for 9 out of 13 nights but it was cheaper to do that than gamble a lot. We also had to buy about 5 meals that were $5-7 each which isn’t bad at all. We had brought an extra gallon of milk along so didn’t need to go shopping once while there! Sadly, we now feel like we’ve worn it out there. Maybe we’ll feel differently after a few months pass. Things have changed so much since we first started going to Tunica. They used to decorate so opulently in the casinos that it would almost take your breath away to behold. Now you wouldn’t even know it’s Christmastime! They no longer play Christmas music, they don’t put up a Christmas tree anywhere or decorate at all that we could tell. They put up a huge toy train at 2 places but it could have been for any time of year. People used to dress up (at least a bit) for the holidays and wear fancy sweaters or dress shoes, etc. Now people are going around in pajama pants and hoodies. In public. To eat Christmas dinner. I had brought along some dressy clothes to wear but when I saw that, I didn’t even bother putting them on. The casinos in Tunica used to give away gifts like it was going out of style. We’d get blankets, a coat, hat, a watch, champagne glasses, you name it. Now they don’t give away anything! They do have drawings and things for winners but not to people just for showing up. It’s not like we need anything but it makes it fun. One of the biggest casinos went out of business last June. Greg thinks the rest are headed that way. It’s sad to see change when it’s not for the better.
Popsicle Art. Found in a Mississippi parking lot.

Popsicle Art. Found in a Mississippi parking lot.

We ate a lot of good southern food on the trip. Then since I’ve come home, I’ve been making a ton of cold weather meals to keep us going. As soon as we got home, the temperatures sunk down to zero with windchills 25-30 degrees below zero. They cancelled schools in Chicago for 2 days this week. It’s been too cold to walk the dogs so I’ve been home bound. I’ve made chili twice, banana bread and chicken noodle soup.
Mississippi Sunset.

Mississippi Sunset.

Wed. Jan. 7th, Mom had a bout of diarrhea. It was only a 1 day bug type thing. It doesn’t help that she can’t tell me when she feels it coming on. I have to read her body language and keep asking her if her stomach is bothering her. She doesn’t move too fast so even if I help her to the bathroom (which I do every time she goes now), she’s likely not to make it in time. She also doesn’t seem to comprehend what it is because she puts her hands right in it like it was something to play with. Gah! She went through 3 pairs of under and outer pants before I wised up and put her in diapers for the day. By then it was better and by the next day, gone completely. When I put her in diapers, I kept wondering if that’s how the elderly end up in diapers 24/7. One good (?) thing from the trip is that I was with her day and night so FINALLY her leg healed! The one she had skin ulcers on and would pick until it bled. I kept it wrapped even though it was healed. Then after we came home, a few days later, I was in the kitchen cutting vegetables and came to check on her. She was picking her leg and had got it bleeding again. 😦 It was so disheartening to me. She doesn’t care one way or the other but I felt like all my hard work was in vain. It is almost healed up again but I can’t be with her (hovering over her) every second! I have to be able to leave the room to use the bathroom myself, fix meals, do laundry, let the dogs outside, etc. If I had it to do over, I’d get a baby monitor so I could hear what’s she up to. As soon as I heard movement or rustling, I would hustle in there and catch her before she could do any damage. It doesn’t do any good to tell her to leave it alone or even explain at length WHY she needs to not touch it.

Now comes the hard part of the year. The next 3 months of the year are filled with isolation. More than the rest. Looking out at the snow on the ground, it’s so pretty but also has a bleak quality that leads one to a feeling of emptyness. I don’t know how much treasure hunting hubby and I will do. There were some this past weekend but we felt it was too cold to bother with. I guess we’re not hardcore enough. I’m sure the estate sales still had people going no matter the weather. In the meantime, I’m going to get more items listed for sale on Etsy and surround myself with things I love to get me through winter.

I have no New Year’s Resolutions. Just to get through one day at a time with my sanity intact. This was the first Christmas since I started sending Christmas cards (at about age 12) that I didn’t send any! It was one tradition I wanted to keep up. I thought it would be the be-all and end-all if I didn’t do it. Between running the home business, taking care of Mom, packing for the trip and baking for the Greg’s Christmas party, I just didn’t have time to make them, let alone address them. I’ve got to say, it didn’t bother me as much as I expected it too. I actually felt ok that I didn’t force myself to add that as another burden. In recent years I’d send out 35 and get maybe 15 if I was lucky. It seemed like so few. Now I didn’t send any and got around 15. It seemed like so many! Ha ha. I’m not saying I won’t send them next year. I might! At this old age, I’m learning things don’t have to be set in stone. I’d like to say I’m going to learn to sew and knit this year but don’t want to add any more pressure to myself. My motivation is at an all time low. What do you do for inspiration?


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Alzheimer’s disease is a lot of things. But mostly it is sad and awful. Sometimes it feels like my soul is being sucked out of me just being around it. The burden of caring for someone with it is one thing. The loss of that entire person’s being is another. Not only am I no longer her daughter, she is no longer my mother. Physically and legally, yes she is. But emotionally and mentally, she is a stranger. Today I asked her again, “Who am I?” She said with utter confidence, “My sister!” I left it like that. I don’t bother correcting her when she thinks that. It wouldn’t do any good. I just accept it and it doesn’t even cause me that much anguish anymore.

I don’t know this woman who refuses to answer me when I ask her something. Who when she does answer uses “I don’t know” as a reply. Many articles about Alzheimer’s disease address the patient’s not knowing those closest to them. That isn’t even the half of it. The fact that my mom doesn’t know me or what I do for her on a daily basis is heartbreaking. But the worst is that I don’t recognize the person in front of me. The spark that was in her eyes, her quirky wit, her generosity, her curious and adventurous spirit are all gone. Vanished into thin air like they were slowly let out of a balloon. I miss the woman who loved to read recipes and sew. I miss the woman who’s eyes lit up when her favorite tv show was on or she got handed a bowl of ice cream. I miss the woman who spent hours weeding the garden and would come in with a bouquet of flowers she’d grown for all of us to enjoy. I miss the woman who would tell me I looked “clean from home” when I got dressed up. I miss the woman who loved petting the dogs more than just about anything else. Now she doesn’t know the names of any of the dogs or whether they are male or female. They love her all the same.

Don’t get me wrong, I want to keep her with me as long as I can. However, when she finally dies, there will be nothing left to mourn. I feel like I’m mourning her a little bit each day. I’m not crying, more like numb at what this horrible disease has reduced her to. Nothing really makes her happy anymore, no matter what lengths I go to. It was the oddest thing that on vacation, she didn’t take a nap once. When she’s home, she usually naps every afternoon and part of the evening. It’s like her body doesn’t even tell her when she’s tired anymore. Or hungry. Or thirsty. I have a bottle of water next to her at all times. She goes days without drinking hardly anything. Then one day she’ll drink 2 bottles in a few minutes.

 It’s funny how things happen in life and they change your entire perspective and outlook. I was Judgey McJudgeypants when I heard of people putting their parent with dementia in a nursing home. How could they not look after their own flesh and blood? Well, I guess if the person doesn’t even realize WHO is caring for them, it really doesn’t matter. Why put yourself through the work, frustration, sacrifice of caring for another person who is virtually a stranger? Because I can. Because it’s the right thing to do FOR ME. Because I wouldn’t want to be turned over to the care of strangers if it happened to me.

On a day to day basis, there is enough involved in getting myself ready to face the day. Between hygiene and grooming, it is no easy feat. And I’m pretty low maintenance. Imagine having to remember to comb someone else’s hair every day, even if she’s not leaving the house. Imagine having to test the temperature of food before giving it to someone because they have no “sense” or ability to tell if food is hot or cold until they’ve burned themselves. Even if I give her hot food and tell her not to eat it right away, she will immediately grab the spoon and shove it in her mouth. Same goes for the need to always be cognizant of if the person you’re caring for is hot or cold and dress them accordingly. That means putting a sweater or cover up on when there’s a chill in the air. The Alzheimer’s patient will not tell you they are cold. They won’t tell you when they need to use the bathroom. They will start squirming or moaning and you have to figure out if it’s time to get them to the bathroom or if they’re in pain.

It has become all consuming. I really don’t like talking or writing about it. I don’t even like living it. The times when I’m able to get away because she is occupied used to be my respite from the stress. Now I spend most of that time talking to my hubby about how bad she’s getting and what might happen next. What scenario I’m dreading or what strange thing she just said.

After we were on vacation for a few days, she said, “Let’s go home”. Well, she says this when we’re at home too. It still can’t help but feel like a kick in the gut. Things have now reached the point that I need to accompany her to the bathroom EVERY time she goes. I can no longer send her in and hope for the best. I need to be there to remind her to change her pad, use toilet paper and wash her hands with soap. I need to be there to turn the light switch on at night. The computer games are becoming too difficult for her. We have it set up so that she no longer has to use the mouse, only push the space bar. Even with that she can run into difficulties. On the ipad, if any message pops up, it screws her all up. Also she’s not careful when she hits buttons and will hit anything.

My mom was somewhat of a perfectionist prior to her descent into the Land of Know Nothings. She used to have to have to have her clothes all ironed and everything “just so”. Now the only thing she is precise about is how her toilet paper is folded. I’m not even kidding. It is the oddest thing. I usually fold it for her and hand it to her and if it’s not completely straight and even, she refolds it! She also takes great pains to do it herself. It makes no sense to me since she’s not careful about where she wipes her hands or puts food.

I cut up half of a tiny apple into itty bitty pieces for her on vacation. Then we left to run errands and came back. When we left she was shoveling the pieces in her mouth as fast as she could. When we came back, I found the plate with the cut up apple pieces (all brown) under the pillow on the couch. I wonder if she took them back out of there mouth. A few were on the floor.

This woman could eat steak “without teeth” ever since her teeth were pulled in 1988 and she hated her dentures. Now she suddenly can’t use a knife and can barely feed herself with a spoon. She claims everything is too tough for her to eat. She can eat everything up until the last bite. Then she leaves it in her mouth chewing on it FOR HOURS unless we have her spit it out. I’ve tried to ask her why she can’t swallow the last bite when she ate the rest. She doesn’t answer. If I ever badger her for an answer and say, “You have to answer,” she mockingly replies, “You have to answer!”

People tell me she’s lucky to have me. My husband says he wishes she knew everything I did for her and appreciated it. So do I but it’s not going to happen. We never did have a talk about the possibility of her getting Alzheimer’s. At first it just seemed like typical loss of memory as happens with aging. Then it got worse and after her diagnosis, it seemed already too late to have a conversation about it. The concept was beyond her grasp already. I don’t know if it would’ve changed anything anyway to talk about it. We used to have conversations about EVERYTHING. I can’t imagine how we never got around to discussing the memory thief and personallity burglar that is Alzheimer’s.

I sometimes wonder if she’s lasted so long because I take such good care of her. None of us know when our expiration date is but we certainly don’t expect to live past it. We do the best we can and hope for the best. Whatever other cliches we have handy, we use those too. My dad’s aunt, who was ancient when I was a kid, used to have a saying she said so much, she wore it out. “That, too, shall pass.” I don’t doubt it for a minute. Mom’s memory may be mush but I still remember the love we had between us. It’s hard to love this stranger but I still deeply love the mother I had.


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