We have had an interesting few days. We have been weaning Mom off all her medications. And what is sort of weird is that the hard edge she had developed is slowly withering away. She is becoming so feeble. She is having a hard time walking. She has a hard time toileting, or eating, or dressing. She leaves a mess wherever she is. The dog follows behind her, collecting the crumbs. But the expectations to this process were totally not met. I had been expecting this angry, horrible person to emerge from the medication fog. Instead, this little, old lady is emerging.
We attended a local baseball game last night. Mom dressed herself. I did not interfere. She chose her outfit and did her hair and make-up (she never forgets make-up, whereas I gave it up decades ago – HaHaHa). She had to climb up into bleachers – which thankfully had backed benches – and find her seat. She ate a hot dog. She watched her great-grandchildren play under and around the bleachers, as kids do. She commented about the pitcher (“He looks so thin. I think his mother needs to feed him more.”) and commented about the very active sky (“Oh, look at the clouds. I always think of my grandfather when I see clouds.”) and then would retreat into her mind. But she sat and enjoyed the entire game with us, never asking to leave. At one point, she did say she was cold and I laid a jacket across her knees, which helped a lot.
Today, I cannot seem to get mom moving. She is sleeping a lot. And I realize that pretty much everything takes energy. And she does not have a lot of energy. The other day, it took 4 hours for her to get dressed and ready to leave the house. Today, her energy is taken up by sleeping, occasionally talking to me, or staring at the TV. She just doesn’t have extra energy right now, to get dressed. But she is not angry. She is soft-spoken and kind. She is making a mess of the bathroom and she is going into the bathroom quite a lot, but she is happy.
The act of dressing, riding in a car, walking into this sports venue, sitting through a game, walking back to the car, and getting ready for bed took its toll on her. She has nothing left. And she said something interesting to me last night. She said, “I hate that I can’t do.” When I asked what she meant she said, “I can’t just go and do the things I need to do. It takes me forever to turn down the bed, get my pjs on, and get into bed. I never thought that as I aged I would not be able to do, whatever it was I needed to do.” And I thought about that. In fact, I am still thinking about it. Because mom has a very long list of what she cannot do; common things we all do, she no longer can do. And it grates on her. She hates being dependent on anyone, especially her daughter. Somewhere in that Alzheimer’s World of hers, she knows Alzheimer’s has things turned on their ear and she is frustrated with it. She tries to fix it when she has made a mess. She hides things. She wipes things but only makes it worse. But in her mind she is fixing it. She is taking care of things just as she has always been able to do. And the problem is the disconnect – the one between the reality is of what she is doing, and what she is doing in her mind.
“Whatever you do, work at it with all your heart, as working for the Lord, not human masters.” Colossians 3:23
So this kind, lovely woman fooled me for a few days. It was nice. I had sort of been relaxing my walls of protection, putting my dread and stress on a back-burner. LOL. Well, once again, she had her personality rear its ugly head, all without barriers or societal constraints. I was hoping this transition would be painless, as it has been, for more than a week. LOL. Silly me. She found her energy at 1:30 this afternoon, after napping the entire morning away. As she is making her way through the house, opening and closing closets, she is so confused. I asked her what she was doing and she told me she was looking for something to wear. She was in the closet with her 24+ cardigan sweaters (not kidding; I counted them) and I asked her what she needed in there. She said she was looking for clothes to wear, all exasperated because she had already told me that. I told her we were not leaving the house today and she did not have to worry about a sweater (it is currently cloudy and drizzling in July, so she thinks it is winter). She replied with, “Well, you may not be going anywhere, but I can go anywhere I want to. I can go out if I want to.” On her bed were all her shoes, a dressy pair of slacks, and 2-3 tops. I walked away. Sigh.
Alzheimer’s affects everyone around the person who has it. I cannot ignore her for long, because it usually means there is a mess I get to clean up. She gets confused about where she is in the house, going into the laundry room looking for the bathroom. She cannot lift the coffee pot to make herself a cup of coffee; she cannot hold a knife to butter a slice of bread. She has not cooked or done her own laundry in over 6 years. And even though she may ask if she can help, she rarely does. There is always an excuse why she cannot help (my hands hurt; my shoulder hurts; I feel light-headed).
One of the tricks they do in Alzheimer’s homes is they give someone a load of hand towels to fold, asking for their help. The person feels useful. They fold the towels and the nurse/caregiver takes the basket away, thanking them. About 10 minutes later, there is the same basket with the same towels (which they have sometimes fluffed into a mess, or run through a dryer) given to the patient, asking for their help. And they happily fold away. Same towels. Same basket. Over and over all day long. I laugh when people suggest this. Mom does not fold. LOL. Others have suggested a “busy quilt” or a “picker’s quilt.” Same thing. She would never go for a quilt that looks like a child’s toy. When I introduced mom to her stuffed animals, the idea was abhorrent to her. She said, “I am not a child. I am a grown woman. No thank you.” She now naps and sleeps with them. I wish I could get her to use a “busy quilt,” but she got mad when I tried to give her several items that are sold for adults, for the workplace. A couple of them were mine, when I was working. She actually got angry at me. I have no idea what to do, to keep her occupied. It is a rough thing to even contemplate. LOL. Her personality prohibits so much; sadly.
She woke from a nap with her two stuffed animals. She is back in the same closets. She has clothes everywhere. She was laughing and I went to her and she said the particular pair of pants she was holding were far too large for her, and needed to be hemmed, at the very least. Even though she has been wearing them for months. She proceeded to read me the size label, thinking she could not possibly wear that size. Then she begins to tell me that she has to get dressed to go out. I remarked that we were not going anywhere. She points to the living room and says, “Well, out there!” And I told her it was almost 2:30pm and she had been “out there” since 7am. She looked at me with so much anger and, well, a look I knew from being her daughter, and I just walked out of the room. When she has that face, even prior to Alzheimer’s, we all would know talking did no good at that point. With Alzheimer’s, it is even more enhanced. And much worse. Oh, and it is 3:30pmm and she is still not “out there.”
So I am sitting in the living room. I have chased mom all day. I am dressed. My bed is made. Teeth are brushed, hair is combed, and I have fed two meals today. But I feel like not one thing was accomplished. Sigh. The “round and round, here we go again,” of caregiving for an Alzheimer’s loved one. And I keep saying to myself, “Whatever you do, work at it with all your heart…” I am trying. I really am. *Bangs head against same wall* And so I pray for endurance, patience, and joy in serving. Sigh. Some days it is harder than others!!
“…so that you may live a life worthy of the Lord and please him in every way: bearing fruit in every good work, growing in the knowledge of God, being strengthened with all power according to his glorious might so that you may have great endurance and patience, and giving joyful thanks to the Father, who has qualified you to share in the inheritance of his holy people in the kingdom of light. For he has rescued us from the dominion of darkness and brought us into the kingdom of the Son he loves, in whom we have redemption, the forgiveness of sins.” Colossians 1: 10-14
kaiserswest 
Thank you for visiting my blog recently! The kind of thing you describe is so hard. My m-i-l does not have Alzheimer’s but she has a degree of dementia. Before we moved her near us, she tended to hoard – not everything, but used foil and plastic containers (butter, cool whip, etc.) Her daughter had to go behind her back and clear things out at times. She was in assisted living the first few years after we moved her near us. She usually didn’t finish her roll at dinner, so she’d bring it back to her room in a little basket we had on her walker. Then other residents started giving her their rolls. She’d leave them on different surfaces (mail, library books,) where they’d leave greasy spots and turn rock hard. But you didn’t dare throw them away in her presence. She grew up in the Depression era, and wasting food was a major sin in her books. So on Sunday mornings we’d go over, and while I was fixing her hair for church, my husband would go through and throw away and straighten and clean.
My heart goes out to you. It was hard enough to deal with dementia while she was in a facility: having to deal with it every day in your home has to be maddening sometimes. I don’t mean to be self-promotional, but I wanted to share a post with you that helped me even though the circumstances were a bit different: https://barbarah.wordpress.com/2017/08/14/its-not-for-nothing/.
Thank you!!!! It is so true… not for nothing!
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