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Posts Tagged ‘#Alzheimers’

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 need to feed my soul won out over the need for anything else today. Hence, this blog post. It’s already been over  month since I posted and so much has happened, I doubt I’ll be able to cover it all. But I’ll give it  shot. Settle in for a long catch up session. 😉
 veggiesongrill
After a mild winter, we’ve been enjoying a spell of nice weather–sunny and temps in the 70’s. We really can’t ask for more than that. So much yard work to do and not enough energy or ambition to do it. Hubby cut the grass for the first time on Sat. after hunting for a particular type of 2-cycle ashless Lawnboy oil at half a dozen places and online. There doesn’t seem to be any place that carries it anymore and we feared using something else and wrecking our lawn mower. He decided to try the Toro brand and that worked fine. I’m sure you’re thrilled with the minutiae of my life.
 playdatewithasher
At the beginning of the month, we took the dogs to the vet (over a 2 day period) to get heartworm tests and vaccinations for Ivy. They also had their stool samples checked for parasites and came back clean. It’s about the fastest way to blow through $450 I’ve ever seen. We had run out of Revolution (the heartworm and tick preventive we have them on) which they get topically on their back between the shoulder blades once a month. I had called 1-800-PetMeds (an online pet supply place that is much cheaper than the vet but still coslty) to order the same day I had made the vet appts. Even though we’ve known the vet 20 years, she still won’t authorize it until after the tests, even though the medicine wouldn’t have come until after we’d gotten the results back. After the vet appts., I had to call the Pet Meds place back to get them to send another authorization to the vet. Well, the person I talked to said they would but then I got an email days later saying that Amber still needed her heartworm test. So I had to call back again and set them straight. In all the years I’ve been using Pet Meds, this is the first time that I can recall them screwing up. It’s too bad it had to happen at all.
 Mominwheelchair
Then I had to deal with a screwup at the pharmacy. We had switched to CVS from Jewel a year or two ago because Jewel made errors almost every time we got a prescription. Now CVS is doing the same. Hubby has his pills on “Readi-fill” which refills automatically and a recording calls to say they are ready. Of course, the recording doesn’t tell you which ones are ready so you have to guess. He went to pick up his Bystolic which he needed right away and they had an additional one for him. He didn’t need the Amlodapine for a week but got it anyway. I didn’t open the 2nd one for a week until it was needed. Inside I found the paperwork saying he had gotten 90 pills (like always) and only one bottle of 30 enclosed. So I had to call the pharmacist and explain the situation and she said, “We owe you 2 bottles.” So I told her I’d pick it up in a few days and to have it ready. That’s how I spend my time, doing piddly little things that just rob me of time I could be blogging. ;-D
 mommeamber
Greg turned 55 on April 1st. We had plans to go out to eat for the first time this year but we didn’t. A few days earlier we had gotten takeout and brought it home which is also the first time this year. We got lamb burritos from Mr. T’s Gyros. They were good but not something you’d want to eat more than once a year. We ended up going shopping and getting a 10 lb. beef brisket which I cut in 2 and cooked in 2 crockpots. We also got a ton of veggies and roasted them in the oven and on the grill. It was probably better than eating out would have been. Greg heard from his 3 brothers who wished him happy bd. His brother Brian who had the traumatic brain injury in Feb. 2015 got approved on Greg’s birthday for disability from the government. They even paid him for the past year when his application was hung up in red tape. I doubt he will ever hold any type of job again. 2 months ago, he fell in the shower and hit his head again and got another concussion. He ended up being in a nursing home for a few weeks for rehab. The older we get, the more careful we are trying to be to keep our health intact.
 crams1950globe
So my left knee had gotten a bit better for a few days when I blogged last but that didn’t last. My knee has been terrible and bothers me in 3 different places. It even aches when I lay in bed, no matter how I position it. Same with on the couch. I miss being able to sit cross legged now and then. I’m still moving around on it but so many stairs are a killer. Today is the first day in a month that it’s been less painful. I’m not holding my breath because I know all it takes is one wrong move or turn to get it sore all over again. It’s been depressing to not be able to walk the dogs every day like I used to. I still do it when Greg can go which is about 3 days a week we do it together.
 afghan
My mom turns 95 on Saturday April 23rd! I don’t know what if anything we’ll do. We saw a new hole in the wall restaurant that serves homemade Polish food so we may try that. About a month ago we found an almost brand new wheelchair at an estate sale in our town for $20! We’d been thinking of getting one for Mom and couldn’t pass it up at that price. We had to take her to the ENT doctor to get the wax out of her ears and also to the audiologist twice to get a new ear mold made for her right hearing aid. I was really debating whether I should take her alone or have Greg along. I mean, I like to do this things alone so I feel independent but while I have him, why not have him help me?! I try to be strong but just having someone help with the burden a little bit eases up on the stress for me so much. So I asked him what he wanted to do and he said he’d be glad to come along. I hit the lottery big time when I got him. 🙂 Anyway, he dropped us at the curb and I got Mom in the wheelchair and took her to the elevator and up to the 3rd floor. The first time I had her walk from the waiting room to the exam room. She can do it but is so slow and unsteady. The next time they said I could push her wheelchair right in the room and leave her in it. That made it so much easier. Having the wheelchair should make it so much easier for vacations! We’ve also taken her in it around the neighborhood when we walk the dogs. That way she can get some sunshine and fresh air. I never realized how much work it is to push a wheelchair though. 
 roadclosed
In between everything else, we’ve been feeding our addiction of going to estate sales. We’ve found some really interesting things. Hubby got a giant ROAD CLOSED sign that we added to those on our backyard fence. It measures 4 feet long by 30″ high. He also got a new wood burning fire pit. I took a picture of his old one that he got 18 years ago that he paid $99 for and the bigger one he got for $15 at an estate sale. The new one is not “new” but has a lot of life left in it. He’s already had 2 fires in it. We’re going to take the old one to the recycling place to get money for the metal.
 firepits
I’ve never bought a doll as an adult. Seeing various doll collections when you go into someone’s house tends to creep me out. Not as much as a huge collection of clowns would but enough so to keep me from entertaining the idea of buying a doll. Until Friday. Up in the attic of an old house, there were a few dolls and one in particular called to me. It’s more than catching your eye, something about an item can “speak” to you. It makes you feel like it needs to come home with you. This doll did that. It’s a very old Horsman brand doll that has a porcelain head, arms and legs. The head has a crack in the chin and some damage to the side of the head (the bonnet covers it well) but it’s just charming. It has tin eyelids with eyelashes that close when laid down. The body is cloth. It reminds me of a doll that my mom had as a child named Myrtle. She had given it to me as a baby and I broke it. I was too young to remember it but know how much it meant to her . On Sat. we ventured to Evanston, IL to 2 estate sales. One was in a condo and had newer things but we got some great deals like 2 sets of bed sheets for our bed for $6 and 11 necklaces at $1 each!! Then we went to an antique store where the owner was retiring after 30 years in business. It was called Eureka! They’d had the sale the day before too so there wasn’t as much stuff left but we still managed to find some treasures. We saw “just a piece of cardboard” hanging on the wall and had to have it. It was advertising for the Gold Dust Twins Washing Powder. It’s very old and rare.
 dollgolddusttwins
Last weekend we had an unpleasant time at one sale. Some places charge more if they do a lot of prep work and clean and organize which I can understand. Others have more of a “digger” sale where they prepare nothing, leaving everything dirty, in piles or boxes and packed to the rafters. A lot could be in the garage or attic. Usually they tend to give a better price because you really have to dig to get to anything good. Usually it’s buried under literally garbage. Things that should’ve been put in a dumpster. Well, those types of sales CAN be the best. They are definitely fun but it takes a lot more time plus you get filthy touching things. Last weekend, we went to one run by 2 guys who we’ve gone to a few of their sales. They don’t have any helpers or employees and do no prep. Nothing is ever marked. One sits at the front desk taking money but he can’t quote any prices. The other guy runs all over the house and has to give prices for everything. There is always a huge wait to get him to look at anything. Usually the prices are fair. I got a huge gorgeous afghan there for $6. It smelled find but when we left, they put it in a dirty bag that stunk so bad of mold, I could’ve thrown up. Yesterday I finally took it out and aired it out outside and threw away the bag. Anyway, last weekend Greg & I were in hurry to go home for lunch but went in the garage and there was boxes of ephemera. That is my weakness and we started looking through and culling. We only wanted certain things and maybe we’d only find one or two things out of an entire box and go on to the next. We must’ve spent 45 minutes out there in the cold (35 degree weather) and dark (very little light) and dirt. Most places if they value ephemera, will label each piece individually. They’ll also have it inside the house and displayed. Most places when you dig your own, you show up with a pile and they don’t look at it, they just quote you $5 or $10 for the batch. We had a stack of an inch or two thick and went in the house with it in a box. We had to wait for the guy that could price and then he began looking through it piece by piece!!! He was like $10 for this, $3 for that, etc. plus he wouldn’t go through it all because he had to stop and give prices to others for things they were interested in. We asked him for a price for all of it and he said he couldn’t do that. So we left it all!! We were just disgusted and upset that the guy was so unreasonable. He didn’t want to take the time to go through the boxes in the garage himself but now he could sell what we culled for him on ebay without putting in the effort of finding it. Thank God they’re not all like that! I know this isn’t what AC/DC had in mind when they wrote the song in my title but it does seem fitting.
mannequinhandlers
                                  

 

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As I sat down to write a blog post about sharing, I have realized I’m not as good at sharing as I thought I was. In my own eyes, I thought I would share most things with most people without thinking about it. But after reflection, that’s just not true. I might share some things but I’ve always been very stingy with my time. Maybe because I feel like there’s a finite amount of it. Or could it just seem like most people aren’t worth the time? When I worked for the Post Office, there were people I knew that I didn’t mind talking to at work but if I had to do it on my own time, it wasn’t happening. I felt like every second I spent on someone else was taking time away from the 2 people (& one dog) that mattered most to me–my mom and Greg.

I don’t know if this came from having “old parents”. My mom was 41 & my dad was 48 when I was born. Back in the early 1960’s, it was a big deal to have parents that age. My mom used to tell me everyone thought I was her granddaughter. It never bothered me to have older parents. In fact, I kind of liked it. I felt like they knew what they were doing by the time I came along. It always made more sense to me to wait until you’d lived some before you raised kids. I was my mom’s only child and my dad had 4 before me with his former (deceased) wife. I was a bit obsessed with them dying young. I was afraid something would happen to them (like a car accident) and I wanted to know what would happen to me. My mom wanted me to go live with her sister (who was 4 yrs. older than her) and her husband. They had 2 daughters who were grown. They lived in a suburb of Detroit, MI and I wouldn’t have minded living with them. My dad wanted me to live with my brother and his wife. They had 2 children (the first when I was 10 yrs. old). I wasn’t wild about that idea but it sounded like the one they were going with. They were afraid my aunt and uncle were too old to take on parenting me.

The way most things go, none of us ever had to worry about any of that. Whenever you put a great deal of thought and worry into something, it usually doesn’t happen. It’s the thing you never dreamed would happen, that comes out of the blue, that catches you off guard. In any case, that wasn’t the end of me worrying about my mom dying. She’s always been healthy except for severe hearing loss (and now Alzheimers). Yet I was forever thinking if I did X (like went out after work with friends or on a vacation without her), something would happen to her while I was gone. I didn’t think I could ever forgive myself. Looking back on it, it seems ridiculous. I missed out on some things just from not wanting to be apart from her. Codependency at its best. I don’t think she ever cared one way or the other. I don’t think she appreciated me passing on opportunities to stay with her. I really don’t regret it but felt the need to acknowledge that it was a part of my makeup. That and the one thing I didn’t plan on (Alzheimers) happened on my watch. I wasn’t off far away living my life and checking in with her via phone. I was sitting a few feet from her as the memory stealer ravaged her brain.

Besides time, I don’t like sharing myself. The only place I’ve ever felt comfortable talking about myself (any part) has been on this blog. Besides having Selfie-Phobia, I think I have sharing phobia. Just sharing pictures (ANY pictures!) on Instagram feels like I’m giving away little pieces of myself. I don’t know why it’s so hard for me to let others see my life. Staged or natural, it doesn’t seem to make a difference. What I do, say and show seems so irrelevent. So insignificant. I don’t know what to tell myself to make it easier to share either.

Not only am I at a crossroads, I am stuck in quicksand. Unable to move forwards or backwards. Unable to ask for help or help myself. This sounds way more dramatic than it should. I hadn’t even planned to write about this but it wanted to come out. So many subjects are inside me, yelling, “I want out!” They kick me in the stomach from the inside and let me know they can’t be kept in any longer.

 

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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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