I really have no words to adequately describe the past 4 weeks of my life. And it is just getting more convoluted. I truly, truly had no idea what dementia and Alzheimer’s meant. Not really. You can read all about it. You can study it. But until you experience what it does to a loved one, firsthand, you truly do not know what it is like.
My mom is so very angry. I think she’s been angry for a long time. When my stepdad passed away, from a pretty horrific bout of cancer, the bottom dropped out of her world. She has never really recovered from that. He has been gone for a little over four years now. Her Alzheimer’s got much worse through her grief. And over the past four years, she got much worse than I realized. I don’t think any of us realized it because none of us lived with her.
It truly is living in the moment. Because her entire personality changes moment to moment. There are all sorts of adages about Alzheimer’s that go around, too. And I am finding some truth, but most are mythical! I think, based on my experience with both my parents, that the disease amplifies traits that are already there. They may be latent, or hidden, but they are there. My mom was always known for her sharp tongue. Always sort of cranky. And it has been amplified. Her kindness was so bittersweet, when we got it as kids. So the fact that her kindness is shown less and less, should really not surprise me. The vehemence is surprising some days. Today was particularly ugly. And I found myself retreating to my inner voice…deeply breathing…praying for kindness from me to her. I am learning to not take the bait. She knows the buttons to push. It’s one of the reasons I moved out of the house at 18 and never really lived with her again. I stayed with her for a few months when I was in my 20s and my parents split up. She discovered she had breast cancer and I stayed with her throughout treatment and follow-up. But then she moved to her own apartment and that was that…over 30 years ago. So there is a lot of adjustment on both sides.
And this disease makes adjusting to something new particularly ugly. For all of us. They say to get time away…but she cannot be left alone. She thinks she can. She thinks she’s independent. “Please let me know what I can do to help you. I’ll be your helper.” Those are her common mantras. But when I asked her if she wanted to bake a cake with me, her reply was, “Haven’t done that in a coon’s age. Would not know what to do.” And when I asked if she wanted to help with dinner, “Oh, honey, I haven’t cooked in eons. Would not know where to start.” Then I asked if she wanted to help with her laundry: “I can fold it I suppose.” “Would you like to hang up your things?” “Well, I can do that. I’ve been doing that since before you were born.” Then I hear banging and she’s ripping all her clothes out of the closet because she “doesn’t like this closet.” I spent an hour, repairing her room. When I remarked later in the day, as she was slamming drawers, that her clothes were all over the place, she said, “Well, I thought this was my room and I could do as I pleased.” I told her I was trying to help her stay organized. Her reply, “I’ve been organized all of my life. I can certainly organize my own room. I’ve been doing this long before you were born.”
And afterwards, she came into the living room all smiles and happiness. Completely forgetting the past half an hour. And she sits now, watching the Disney remake of Cinderella, all happy and sweet. I think one of the hardest parts of caregiving is the relentless roller coaster of emotional outbursts, both good and bad, that come moment to moment. It makes your head spin. And I quite literally find myself breathing heavily, spinning brain, praying for inner peace.
The dog jumped off the couch last night and tore the skin off her shin, scraping her pantleg as she leaped to go outside. The wound was ghastly. I had to trim the extra skin and bandage it. It bled through overnight. She completely forgot she had hurt herself, and was picking at it this morning. And she got it bleeding again. She had totally forgotten what had happened. As I explained it to her, she got angry because (I think) she realized she had forgotten. But as I dressed the wound, she was all smiles and kindness.
So many things are lost with Alzheimer’s. The perception the person has of themselves, their lives, their memories, are so very skewed. My mom is constantly berating me about how independent she was at “Fairwinds.” I have come to hate that word. It is the name of the VERY active senior housing she used to live in. To the tune of almost $6,000 per month. I have come to realize it was very expensive entertainment. Because that is what it truly was. Expensive entertainment. She has no idea how to entertain herself anymore. She sighs and gets angry and bored, waiting for something or someone to make her happy, to entertain her. She has lost her sense of self. She has not done laundry or cooked or cleaned for herself for the past four years. And with Alzheimer’s, that is pretty much her entire life. So how do you overcome or undo all of that? I am still trying to figure it out. One thing I did change was leaving the house every day, striving to find something she enjoyed doing. Yesterday she asked for a manicure/pedicure at least four times. So I planned to take her today. This morning when I mentioned it, she said she had filed all her nails last night and now doesn’t need a manicure or pedicure. Yeah. She has no file. No polish remover. And I was with her all night. It did not happen. And she dug in her heels – she doesn’t want to do that today. *sigh* But she is heavily sighing and angry, over on the couch, picking at her nails again…
How do you deal with this daily? I am still working it out. I am not sure. I am trying to find community support, but juggling time is hard. Her Alzheimer’s is bad enough I cannot leave her in my home alone. It is still new to her. And as I said above, she is now sighing and picking her skin and nails, bored out of her skull. But one of the things I have realized is that I am not her entertainment committee. Yes, I will need to find activities, but so far, she has rejected every senior center in our area, within 20 miles of the house. Every. Single. One. So my options are very limited. I keep waiting for some divine light to shine on me and I will know what to do next.
I have a stack of books to read that people have recommended to me. But when am I supposed to read them? “The 36-Hour Day,” “Keeping Love Alive as Memories Fade,” Lewy Body Dementia,” “Understanding Alzheimer’s Disease,” “Caring for a person with Alzheimer’s Disease,” on and on they go. But when you are in the midst of it, when do you read about getting help or dealing with it??? Tell me and I’ll implement. All the platitudes in the world don’t get you through a day. Perseverance and a sense of service, working for a higher cause, those get me through my day. Knowing she is mom underneath all the ugliness of this horrid disease. Prayers from friends and family. Knowing there are those in the wings supporting me. Those things get me through my day. And chocolate, and my new bottle of scotch (but I am really monitoring that consumption). A maid would be awesome. A million dollars to hire help would be great. More hours in the day. More days in the weeks. Yeah. Alzheimer’s truly sucks. Trust me, here in the trenches. And guess what? It’s only week #2. Yeah. I feel way older than my years today.
Pray for me. And my family. I love my husband. He is so gracious, kind, and supportive. I am blessed to be married to him. I thank you, Lord, for your many blessings.
And there go the sighs and fidgeting on the couch. It is getting louder. Clearing her throat. Sneaking looks at me. More angry sighs (yes; I can tell the difference). Cinderella is almost over. Perhaps we will do those nails anyway…*sigh* (that one belongs to me).