Dementia Journal, July 21, 2019

One of the most frequent comments I get from people who read my journal is this, “I don’t know how you do it. I could never do what you’re doing.” Before I say anything else, I’ll say this. If circumstances were different, you might find yourself caregiving as I am doing. There are reasons you don’t foresee it now, and you probably have not had to be a caregiver thus far. But when you see the love emanating from the one you are caring for, and how totally vulnerable and dependent he or she is, a supra-normal strength and determination come to you as well as a degree of patience you never thought you were capable of.

So when people say they couldn’t do it, it may actually mean they’ll have to wait and see.

Some people think they wouldn’t do it because there’s little or no quality of life left for the loved one. But this is a highly subjective concern. Although Mom has advanced dementia, in a strangely unexpected way her mind has accommodated this different person from the mother I once knew. Although she is sometimes very frightened, angry and paranoid, most of the time she is a very sweet and quite charming person, especially around visitors. The Hospice nurse, after only three months, is quite fond of her, and we are thrilled she has come into our lives. Mom greets her when she comes each Thursday with her beautiful smile, which I see every morning when I get up. As she was getting ready to leave this past week, Mom told the nurse, “You’re doing a good job.”

I wrote this reply to a very thought-provoking note a few months ago from a reader who said she wouldn’t do what I was doing, or maybe that she couldn’t, I’m not sure. She herself would never want to be in a condition of greatly diminished quality of life and in an expensive and understaffed nursing home. She wouldn’t want to live in such a condition of life or state of advanced physical or mental deterioration, if it should come to that.

Here is part of what I said in reply:

Mom is deteriorating inexorably, physically and mentally, but still, despite everything, she has a significant quality of life. She enjoys her family, some meals, especially breakfast, loves ice cream sandwiches, and, above all, the flowers we have in abundance for her in the den where she sits. She loves to look at the trees in her garden outside the huge floor-to-ceiling windows, and she frequently tells us she loves us. She can still read her Bible verses, however slowly and haltingly, and she is rarely in any pain. We are so thankful she doesn’t have arthritis, for example, because her pain threshold is very low. We have Hospice now, and so a nurse comes weekly to check on her. I believe in palliative care and we are going to do our best to make her as comfortable as possible until the end, whenever that is. That is something we will never know. I’m hoping she thinks, and somehow knows, I’m trying my hardest to do what’s best for her.

This isn’t to say her life with dementia is not the tragedy that Alzheimer’s and dementia are, but rather that she often feels a contentment or even happiness that is difficult to explain or understand given the situation she is in. Despite the disease, and at 96, she still is the gracious lady that she was and always will be. On those evenings when Sundowner Syndrome kicks in with its ugly repercussions, she is a different person entirely. She curses me, tries to scratch and hit me when I try to clean her, and says many horrible things such as that I’m killing her and she’s going to kill me. She called me a stupid ass and a jerk this morning. Fortunately I’ve developed a pretty thick skin.

If I ever lapse when this occurs and think she means it, I get angry and start thinking maybe I’m doing something all wrong. But then I realize this isn’t Mom and that she would never say these things in a normal state of mind. So I don’t let it get to me. I continue cleaning her, endlessly it seems when her incontinence is severe, and disinfecting the floor and grip mats after I’m done or have gotten her to bed. I tune out the smells and I sweat profusely because it’s hard work and I’m not a young man anymore, far from it. But I surprise myself with what I can do.

So, maybe you’re still thinking that you couldn’t or wouldn’t do it. No way. She’d be much better off in a nursing home. Or, you wouldn’t ever want a child to have to care for you when you’re old, demented, incontinent and utterly helpless. You have your reasons. I have no special insights into your lives or experiences with loved ones. But from my own experiences, and from the perspective of my state in life, I can tell you why I do this, and it’s not that complicated. My reason for taking care of, and being responsible for every aspect of Mom’s life, can be summed up quite eloquently in this brief passage from a now unfortunately defunct bi-monthly devotional, “Strength & Grace: Daily Devotions for Caregivers. This is from the entry of October 31, 2018: “When we are devoted to someone — truly devoted — nothing can turn us away from that person. Not hardship. Not pain. Not sacrifice. Our hearts are forever linked to his or hers.”

Our minds are made up. We are in this … no matter what.” I think it’s the same whether it’s a parent, spouse, partner, or any loved one or close friend.

No matter what. Even on nights when I want to scream and pull my hair out. When I feel I can’t take another minute of Mom’s endless questions or the inner pain she’s feeling as she curses me. Ten minutes later she says she loves me and holds out her hand for me to hold in mine.

Tonight’s been relatively peaceful. A little while ago she looked up and said simply, “I’m happy.”