But it’s going to be ok.
I haven’t written much since my mom had a fall, a subsequent brain bleed, and wound up with dementia. Then in January she had to have an old knee replacement redone, so she had to go through another surgery. That took its toll, too. I guess I haven’t had much to say these days.
It’s like losing someone pretty much completely — and yet still fiercely loving whatever is left — even if she’s no longer herself. Sometimes that person we knew isn’t recognizable in dementia. But there are times when mom’s indomitable nature still shines though and I alternately treasure and hate when that happens — especially when it means she has decided not to go to bed and will instead sleep on the sofa all night. Or when it means that she decides she isn’t going to take her medicine or that she is going to leave the house and “go to the store”. Yes, there are many times when mom still exercises her strongwoman side, although often not to the delight of whoever is trying to take care of her that day.
My mom is being watched over 24/7 by some of the best professionals in the world. I’m so grateful for them. But I wonder, too, how they aren’t the most respected and highly regarded workers in the country? Caregivers are truly amazing people, or at least my mom’s are. They are gold.
We have five women who work for mother as her caregivers. During the week she has the same two women, rotating on and off 12-hour shifts, and over the weekend, three other women take over the job of taking care of mom. And they take excellent care of her. Much better than we could do. Of course, they don’t have as much skin in the game as we do, so in many ways it’s easier for them to care for her. Just because she’s not their momma.
Sometimes she’s as sweet as pie and her southern graciousness shines through no matter what. Mom still has the dazzling smile that no doubt won the hearts of my dad and my stepdad. She’s been beautiful all her life, and even at 91, she still looks much younger than her age and has the manners of an accomplished southern belle.
The lady now in my mom’s body has a different relationship with me than my old momma did. This one is always glad to see me and pretty delightful to talk to. She’s not too busy to fool with me. The honesty of those with dementia is disarming and has given us more than a few laughs. I guess it has various effects on people, but for most of this stage, mom is gentle and sweet — which she was not always before her fall. She could be a bit of a dragon-lady when she felt the need. Intimidating is the word that comes to mind. She could intimidate me with just one raised eyebrow.
The other day I had been there a while and was sitting on the sofa with her when she began to yawn. I realized she was tired and told her I was going to go home so she could take a nap.
“Oh, thank you,” she said. Her manners are always there but her tact, uh, not so much.
One day she’d had enough of everyone so she got her rolling walker out. It has a seat in case she gets tired while walking and a couple of baskets. I arrived at her house to find she had packed up her walker with papers she thought might be important, her favorite blanket, some snacks and plenty of food for her cat. She and her cat were leaving and going home she informed me. She wanted me to give her a ride.
Let me tell you, it took some fast talking to get out of that one and convince her that spending the night (wherever she was in her head) was the better option. It was too cold outside, I told her. She considered this and since she hates the cold as much or more than I do, decided to spend the night where she was (in her own house). As I was helping her get ready for bed she looked around her bedroom and said, “I think I’ve stayed here before. It’s alright.”
She’s cute as can be and mostly sweet as sugar. She flirts unabashedly with her physical therapist. She had the paramedic laughing the night she fell and hurt herself. She can make people smile— still.
But if she thinks someone is doing her wrong, whew! She’s not above getting mad at her caregivers if they aggravate her by things like insisting on baths, medicine, not wandering outside, etc. I arrived one day to find she had decided her caregiver wasn’t a woman at all, but was a man who had taken money from her purse. I walked in and she was sporting her most intimidating pose. She wanted him out of there, she explained in no uncertain terms. After a bit, I was able to help her recognize that the “man” in her house was really just her good friend and caretaker. Like with children, you never know where they get their ideas. But we have discovered that things on television often become real for her and she worries about “that woman” on the TV.
Then there was the night she called the cops on her caregiver. One actually came, just after my sister and I got there. We were summoned by the caregiver, who sat at the dining room table mortified. She’d never had an encounter with the police in her life. The young officer took in the situation quickly, and told mom she is lucky she has family who care about her and a good caregiver so she can stay at home, “instead of in a nursing home.”
He inadvertently said the worst thing he could have. We do not speak of nursing homes. Ever. She got up quite close to his face and told him, “I’d like to see you try to put me in a home.” He hurriedly explained he had no such plans. Lucky for him, because it seemed he might find himself in a pickle, as mom would have said.
It’s exactly like keeping a child on some days. You have to put up the things you don’t want them to get into, like, God help us, laxatives. Or the mail. If she gets to the mail first, we’ll have a heck of a time finding out where the bills are and taking care of her business.
Some days she can be fooled a bit. Others, not so much. One day she wanted a knife to help her caregiver peel potatoes. We gave her a table knife thinking maybe she’d just fool around with it and be content without the chance of her hurting herself.
Not that day. “Now I know I have some paring knives over there. Can’t peel a potato with a butter knife,” she said. See, sometimes she knows things as she once did, so we can never predict how she’ll react — it sort of depends on the day. Some days you can’t fool her with anything in any way. Other days she doesn’t recognize her own beloved cat and wants to know “who let that ole stray cat in.”
Some days it breaks my heart to see how things have turned out for her. Others, when I’ve had a challenging day myself, I think her life is not so bad. Her meals are carefully made and placed in front of her, and her house and laundry stay clean thanks to her dedicated caregivers. Their entire focus is keeping her safe, warm, comfortable, and as much as possible, happy.
I’ve spent a lot of time being very depressed about mom’s situation. There have been plenty of tears and questions as to why it has to be this way. She deserved better. Selfishly, I’ve missed her. She was the person I called about the news, or the weather, or some silly thing I saw on TV. She was my friend and I have been bereft.
But lately I’ve realized if this is how it has to be, it’s not the worst thing. She could be paralyzed or in a Covid ward alone trying just to breathe, so I really can’t complain. Everyone has something to contend with. I wish I could have kept my mom like she always was, but she’s not miserable, and in fact, is usually pretty cheerful. She still knows who we are. Most days she knows her beloved cat and enjoys cuddling with him. She enjoys her food, especially the desserts. She still watches the news. I don’t think she understands much of it, but as was her habit all her life, she watches the news.
It’s not perfect and it’s still one of the saddest things that has happened in my life. But this world is not perfect and I shouldn’t expect it to be. People are facing much worse. Overall, I am blessed.
It’s going to be ok.