Posts Tagged ‘#nursinghome’

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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Up until this point in my life, everyone I’d known that has died did so while still in full control of their faculties. Whether it was natural causes, heart attack, stroke, suicide, etc., they were able to be recall the majority of their life experiences, up until their demise. I’ve been agonizing about whether I should write the story I’m living. I don’t know if there is anything to gain by sharing this but I feel compelled to do so.

The past 15 months has been a new experience for me. Dealing with an aging parent can be hard in itself, seeing their bodies become slower and more health problems surface. Dealing with a parent that has Alzheimer’s or Dementia is a whole other level of difficulty. I hadn’t really given it much thought what it would be like to live to a ripe old age and slowly, piece by piece, lose parts of your mind and memories. Of course, I’ve been fully aware that Alzheimer’s existed. Hearing about it on the news or even reading about it is totally different from seeing it on a daily basis.
I’m a strong believer in the saying, “Charity begins at home.” I’m not against helping others, friends or even strangers but feel that we should move heaven and earth to help out the family in our household first and foremost. We need to care for our own people and not leave the job to someone else because it is unpleasant, time consuming or emotionally trying.
All my life I’d wondered how anyone could put a loved one in a nursing home. My grandma (my dad’s mother) would’ve been 135 years old on 7/7/13. She died at age 93, when I was 9. I figured out then that our tiny house was too small for 2 adults, 4 kids and an aging grandma. She had lived about a block down the street until the time came when she must’ve broken her hip and went into a nursing home. My (now deceased) aunt had gone into “assisted living” after she decided to sell her house. For years I wondered why she couldn’t just live with one of her 2 daughters. One was widowed with 2 older kids and didn’t work. The other was divorced and lived alone. I swore that I would always have my mom with me, no matter what. It’s funny how life has a way of making us look like idiots when we get self-righteous or judgemental. The very thing we judge someone else for could very well happen to us.
I don’t have children but I assume caring full time for a 92 year old is similar to caring for a toddler. Except the toddler moves faster. As hard as life is every day, I’m blessed to have her with me. I just wish I had HER with me. The body/ shell is here but the person she was no longer exists. She had a mischievous sense of humor that made everyone say she was a real character. That is all gone. Her personality and everything that made her what she was, is long gone. It left slowly at first, then more rapidly. It’s one thing to forget something like a restaurant you only went to once, 10 years ago. It’s quite another to forget the last 30 years of your life. No one gets to pick which memories are stolen. It would be ideal if a person could actively forget all the painful memories and hurtful events of the past. To lose memories you at one time cherished is just plain cruel.
“When are we going home?” is what my mom asks every day. With all the patience I can muster, I say, “We ARE home.” When I ask her where she thinks we are, she says, “Elgin.” That is where we store our RV. So I ask her if she thinks we’re in the RV now and she says “Yes.” When she asks again later, hubby will say, “Tomorrow.” Then she’ll ask again later, “Are we going home tomorrow?” It is maddening and infuriating and beyond sad.
All my life, just about my favorite thing in the whole world was talking to my mom. Having long, heart to heart talks. Deep conversations where no subject was ever off limits. She always listened and offered advice or support, as needed. She shared stories of her childhood and life experiences. Now she is practically non-verbal. She doesn’t like to talk or be talked to. She doesn’t answer very often, no matter how many times I ask her something. Or she answers with something non-related. I thought for awhile it was because she didn’t hear what I said but have realized her cognition is lacking. We may be in the same room for hours and not speak. I try to engage her but no comprende.
She was always stubborn but now fights me about things like going to the bathroom and not picking her legs. Her body doesn’t signal her when her bladder is full so I try to time it about every 4 hours or so and remind her to go to the bathroom. She never thinks she has to go and doesn’t want to go. I have to always keep in mind when she went last and if she refuses to go before dinner, make her go immediately after dinner. This is so odd for me since all my life she’s been self sufficient. Up until early 2012, she was washing her own clothes! Then one day, she forgot how to run the washing machine. I showed her and helped her load her clothes. Then the next time, she had no interest in doing it herself so I’ve been doing it. I don’t mind. She doesn’t know where her clothes hamper is in her bedroom even though she’s had it for almost 18 years. She has always been extremely independent, wanting to do for herself. That is all over. Now she doesn’t want to do ANYTHING. She also used to have a bossy streak and would tell me what to cook for dinner or what dessert she was hungry for. Now she doesn’t care what she eats.
The doctor told me I’m expecting her to behave like she used to and that’s not going to happen. The greatest source of my frustration is trying to keep her from picking her legs. She has skin ulcers from congestive heart failure and they would heal if left alone. At the doctor, I got her some pills for itching. If I give her one, she sleeps ALL DAY but she doesn’t (usually) pick her legs. I’ve told her 100,000 times (no exaggeration) to not pick her legs. I put Neosporin on them and keep them wrapped up (I use paper towels instead of bandages because I’d go broke) and taped on. One was completely healed and we got the other almost completely healed. Then she started on the good, healed leg and now both of them are bandaged. It is more of a habit than anything but she either can’t remember not to pick them or doesn’t care. She does the most damage when sitting on the toilet. I don’t want to have to stand over her while she uses the toilet. In the mornings I wake her and give her her glasses and hearing aids. I do this as soon as I get her out of bed and walked to the toilet. She can’t leave her legs alone while I’m standing there OR after I walk away. I’m about to lose my damn mind. Short of handcuffing her, I don’t see a solution. I’m still afraid she’ll end up losing  her legs if they get too infected.
I’d heard about people with Alzheimer’s wandering but she won’t leave the house on her own. She can’t walk far distances so I don’t have that to worry about. A few times lately, she has gotten up super early, gotten dressed and come downstairs on her own. Like at 5:30 am!! I’ve told her to stay in her room until I get her up. She also comes down in her housecoat the day after she gets a bath saying she thought she was going to have a bath today. Then on the day of the bath, when I tell her to put her housecoat on and come down, she’ll get dressed anyway. If I’m not watching her, she’ll head off to bed at 8 pm, not knowing what time it is and thinking it’s later than it is. She can still tell time, as far as I know, and wears her watch every day.
She doesn’t remember most of her possessions, jewelry or clothes. I’ve found her going through her jewelry box almost every night (or morning) and looking at everything like it was the first time she saw it. She also does that with every drawer in the house, every pile of papers, etc. She picks everything up and looks at it like it’s new to her. Over and over this happens. Same with certain clothes, she’s shocked to find out they are hers, even though they are hanging in her room and she’s worn them many times.
It breaks my heart that she can no longer remember how to sew. She was a prolific seamstress, even doing it professionally after retired. She made her own clothes and mine in the past. Halloween costumes, curtains, dog beds, there isn’t anything she couldn’t make. It was her passion and kept her going. I remember when I was working nights years ago and sleeping in the daytime. It was so hard to sleep when it was light out. The most comforting thing was hearing her sewing on her machine on the other side of the wall while I laid in bed. It lulled me to sleep and anytime I heard her sewing, I knew all was right with the world. All is not right in my world, anymore.
My mother was always an incredible housekeeper. I can’t say the same about myself. She always “looked like she’d just stepped out of a band box” (one of her sayings). She wanted everything clean and was strict about everyone washing their hands. I’m vigilant about handwashing too but now she’s let hygiene go by the wayside. She has to be reminded to wash her hands or she won’t do it! EVER. I feel like I’m the gestapo having to police her every waking moment.
The 2 things she answers to any questions I may ask, “I don’t know” and “I can’t!” These both burn me up. The funniest thing is that when I was growing up, she INSISTED that those weren’t answers. I was never allowed to say either one. I had to KNOW WHY I did things and keep trying to do things I might think I couldn’t do. She can still feed herself (with a decent appetite) and dress herself so there’s that. We keep her occupied most days with playing casino slot games on the computer. A year ago our computer crapped out and we couldn’t go long without one simply because there is no other way to keep her busy. She doesn’t want to do much else. She’s always done well with the games and for awhile I thought they kept her mind sharp. Now she’s having trouble remembering to click on the LEFT side of the mouse. I’ve told her 10,000 times (no exaggeration) and she still clicks with her right ring finger (not index). She ends up screwing it up and opening all kinds of other applications and programs on top of what she’s supposed to be playing. This is well and good if I am home (in the room). She no longer calls to me for help EVER even though I remind her all the time to just call me if it gets fouled up. Then I was afraid she forgot my name. She always called me Kitty. I asked if she knew who I was and she said “You’re my daughter.” So I told her to call out “Daughter” but she still won’t call out for help. I may have to get her a bell to ring like the drug dealer’s grandpa in “Breaking Bad” (season 2). She would probably forget how to ring it or what it was for. I’ve been lucky to be able to go on a half hour walk with the dogs while she amuses herself playing. Now I’ll come back and the game will be all messed up on the screen. It’s not a big deal in the realm of things but it makes me realize it won’t be long and I won’t be able to leave her at all. Hubby keeps reminding me that it will only get worse. Gee, thanks for that.
This is only the tip of the iceberg of what I’m going to be dealing with in the future. Now that I’ve broken the ice with this post about it, I’m expecting to do further updates here. Now that I’ve thoroughly depressed myself and everyone on the Internet, I’ll move on to another topic next time.
I still have no plans to ever put her in a nursing home but I’m starting to understand why others in my situation might. It really is all consuming. The emotional wear and tear on your heart and soul is palpable. I’m feverently wishing for a cure for Alzheimer’s/ Dementia. Hopefully, in 20 years the entire baby boomer population won’t have to go through this. I fear for myself. That I’ll end up with it as well and have no one to care for me or about me.

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