Dignity in Dementia: Walking Mama Home

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I’m so tired, my tired is broken.

I have cotton brain. And I ache. And, from time to time, I well up in tears.

What’s wrong with me?

My husband — who’s in about the same shape as me, except that he doesn’t cry about it — and I are the full-time caregivers for my 90-year-old mother.

It’s not the 90-year-old part of the equation that’s getting to us. The terror that rules our days and devours our nights is a little thing called dementia.

Personally, I think somebody should come up with a better word for it than “dementia.” That word is too soft-sounding, pleasant even, ending as it does on that soft “chuh.” Dee-men-chuh;  one would never guess that these three soft syllables name a brain-pulverizing monster that destroys personality and companionship, one disconnecting synapse at a time.

Dementia is a lot of things, among them hallucinations that convince Mama that we’re trying to kill her, or that people come into her room at night and tell her she’s a horrible person, or that the people on tv are talking about her. Dementia takes sleep out of her life and replaces it with constant prowling and pacing. Dementia destroys her ability to swallow so that watching her eat a meal is a stomach-churning trial. Dementia takes away her capacity to read, so that this woman who could read a huge book in a single evening now laboriously sounds out road signs and then can’t put the sounds together to form words.

Dementia is the gift that keeps on taking. Day by day, it carves off pieces of her and leaves us with the confused effects of the loss.

There is no resting place with dementia. Someone asks me how my Mama is doing, and I answer with a brief summary of the last few hours. That’s all I have. Good days can go bad in a single breath. Then, when I’m standing on my last hope, bad days can quiet down and give a bit of peace.

Dementia takes, then it gives back part of what it took. But it never returns everything. And the next day, it takes a bit more. It can go on gradually like that for a few days, then, in one swoop downward, you enter a new level of low.

Time was, these changes occurred over the course of months. Then it shortened to weeks. Now, we are at days. Mama is on a steep slide now, going down faster than I can cope. Every week seems to bring a new disaster, another lurch downward.

We had one of those sudden drops this week. Mama managed to get up at night without waking me. She made her bed and got dressed. She gets dressed over and over all night, every night, so there was nothing new in that. Then, she wandered into her bathroom and did something. I’m not sure what.

All I know is that something woke me and I found her on the sofa, covered in blood. The bathtub was a bloody mess. And the soap dish, which is ceramic and attaches to the wall, was broken in half, with the pieces lying on the bottom of the tub.

Long story short, she’s all stitched up and doing ok except she complains that her head hurts and can’t figure out what those staples in her head are all about. Me? I’m still dealing with it.

Now, on top of the agonies of continuous sleeplessness and rolling unpredictability, I’m trying to cope with the realization that I can’t keep her safe. This one has hit me hard because it calls into question my plan to keep her with me until she dies.

I’ve gone over it the past few days until I’ve worn a groove in my brain, and there is no good answer. Whatever I do, the results may be really bad. So, we’re going to keep her home. For now. But I live in fear of getting up one night and finding that this time she gashed an artery instead of veins, and she’s bled to death in my living room, or on her bathroom floor.

I’m an exhausted soldier who’s spent too long at the front. I probably don’t have a 1,000-yard stare, but I do look haggard enough that my kids, the hospice people and my priest have all remarked on it.

Still — and this is grace and nothing but grace — these are precious days with Mama. The tenderness between us has reversed itself.  She’s my baby now. In fact, she calls me Mommy in the middle of the night.

I’m not just advocating pro life. I’m living pro life. Every step we take down this road toward Mama’s eternity highlights the selfish evil of “solutions” like euthanasia. We live in an insane world if our idea of “compassion” for someone is to kill them.

Living pro life is hard. It is eternity work. How many times do any of us have the chance to do something that is this right?

I am walking Mama home. And that is a blessing to both of us.

The views expressed here are those of the author, and do not necessarily represent the views of CatholicVote.org

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About Author

Pro Life Democrats are, as they say in Oklahoma, as rare as hen's teeth. That makes Rebecca Hamilton a rare find indeed. When Rebecca left her 18-year career in the Ok Legislature last November, she had more seniority than any other member of the legislature. In the 1980s, Rebecca experienced a knock-you-down-in-middle-of-the-road conversion experience that changed her from pro abortion to pro life. Before her conversion, Rep Hamilton had advocated for legal abortion in the legislature. Before her first election in 1980, she was the Oklahoma Director of NARAL. She left office after 3 terms when she had her first baby and was a full-time stay at home Mom for 16 years. She was re-elected to office in 2002 and spent the next 12 years passing pro life legislation. Rebecca is the author of the bill that broke the 30-year logjam on pro life legislation in Oklahoma. She passed the bill ending elective abortions in state hospitals. Rebecca also passed a resolution calling Congress to begin hearings on an amendment to the United States Constitution defining marriage as between one woman and one man. Because of her pro life work, Rebecca came within a razor thin vote margin of being publicly censured by the Oklahoma State Democratic Party at the 2007 statewide party convention. Rebecca blogs at Patheos at Public Catholic where she writes at the intersection of faith and public life.

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