My 24/7 Mama and Zombie Days

mama.jpgMy mother is doing a new thing with her dementia.

A couple of years ago, she stopped eating. It took all sorts of finagling to get her started again. Now, she eats and demands ice cream (which she always tells me she hasn’t had “in years”) in between meals. Yesterday, she asked me how I was doing. “I haven’t seen you in a long time,” she said.

A few months before she quit eating, she stopped drinking water. We had to put her in the hospital a couple of times because she got so dehydrated. Then, we managed to get her going again on drinking water, and now it’s like it never happened.

The new deal is that she won’t sleep. She was up — and me along with with her — all night Sunday night. Just refused to go to bed. All day yesterday she was hyper confused and weepy. But she wouldn’t take a nap and when bedtime came, she flat-out refused to lie down and go to sleep.

I managed to get her down by being very firm with her. I scolded her like she was a two-year-old (which makes me feel like a rat) and told her to lie down and go to sleep. She slept, but I didn’t. I was up until almost four in the morning, and then I didn’t sleep when I finally went to bed.

Long story not so short: I’m taking a zombie day. I had all sorts of things planned that I needed to do, but I don’t think I’m going to do them. My brain is mush and I feel all sorts of jangled and disconnected. I don’t care about anything right now.

This is what caregiving for the elderly can be like when it gets choppy. My mother is unfailingly sweet. The whole time she was up during the night, she was chirpy and jazzed. She kept greeting me with delight and wanting to go for a drive, get ice cream or just chatter.

The bad part was the next day, when the exhaustion left her confused and unable to function. She was in one of those down moods when she knows that her mind is haywire and she feels demoralized because of it.

But as night came on, she started shifting upwards, ready to roll on into dawn again.

I’ve learned that we can get her past these things. Overcoming the refusals to eat and drink taught me that. It takes a concerted effort and lots of imagination, but it’s possible to flip the switch back into place and get her going again. Right now, I’ve got to re-teach her night and day. Odd as it seems, night and day have been an increasing challenge for quite some time.

I’m not sure why, but she forgets that night is night and then gets upset when other people don’t respond to her in what she thinks is the proper manner. She can go for hours, waking you over and over every minute or so with the same request. It’s usually that she wants to get ready to go to adult day care.

I just dealt with it as best I could. But an all night elderly romper room is too much. We’ve got to flip the switch back. I may ask the doc for sleeping pills, if nothing else works. I hate to do that, but, hey, she can’t go 24/7 for very long. For that matter, neither can I.

In the meantime, I hope you’ll bear with me. I’ve got cotton brain.

 

My Mother Forgets Stuff. But Sometimes She Remembers Other Stuff.

My mother always was one to sweat the little things.

Maybe that’s why I’m so blithe and indifferent to details. Mama always took care of them for me.

The difference — and it is rather stark — between her crossing of every t and dotting of every i before dementia and her going over and over and over and over the same thing 20 times in 20 minutes after dementia is my sanity.

It’s especially tiring when I’m tired to begin with. And it’s especially overwhelming when I’m tired to begin with and she piles on by going in a circle from one little thing to the next and back again.

So it was yesterday. I had a pause and could take her to lunch. I picked her up at her day care, and we were off. We have a thing we do with lunches and such. I give her money. She puts it in her purse, and then, when we get to the restaurant, she proudly (and with no memory that I gave her the money in the first place) buys my lunch for me. Mama loves to treat me by taking me out to lunch. She gets a big kick out the whole thing, and frankly, so do I.

The trouble was that yesterday she kept going into worry wart mode because she couldn’t find the $40 I’d given her. Every few minutes, she would open her purse and begin searching for it. She had folded the bills into a lump the size of a postage stamp and tucked it behind the photos in her billfold (she’s big on hiding things) and that meant they weren’t in the folding money slot when she looked for them.

She would become upset, and I would pull the car over, take her billfold and show her where she’d hidden her money. She would nod sagely and say “Ohhhh, that’s where it is.”  Five minutes later, she’d start looking again. I don’t remember how many times I pulled the car over and showed her that money.

We had a fun lunch, talking about how good broccoli and cheese soup is and visiting with the waitress who goes to our church.  When we got back to the car, she wanted me to take her to buy a Coke at a drive in. We headed for the drive-in and she started the “I’ve lost my money” thing again.

I pulled over a couple of times and showed her where her money was. Then, after we paid for the Cokes and were driving away, she did it one. more. time.

Before I could zip my lip, I said, “Mama, will you puleez stop it?”

I didn’t yell. I didn’t raise my voice or grit my teeth. It was plaintive rather than angry. I think that was what got her attention. The sound of distress in my voice triggered her Mama gene. She put the purse away and started talking about something else.

Which almost immediately moved into a lament over the fact that she doesn’t have a car anymore; which went rather quickly to her standard tale about how I have “stolen” her car and she wishes she hadn’t let me do that to her.

After she finally wore that out, we had a nice talk about my piano lessons. She’s fascinated with my piano lessons, and seems to believe that I’m headed for a career as a concert pianist. That’s standard Mama, by the way. Everything I do has always been the best thing anyone ever did in the whole history of the world.

We drove past part of the tornado damage from last spring, and she talked for a while about that.

Then, we parked the car so I could return a book to the library. She picked up the book I’d been reading (American Prometheus) and looked at the photo of Robert Oppenheimer on its cover. My mother, who can’t remember where she put money in her own billfold five minutes ago, looked at that photo and said,

“He developed the bomb for this country. He saved the lives of a lot of boys who would have died invading Japan.”

She paused, flipped open the book and looked at the photos. “Our government was really dirty to him, accused him of being a traitor, and after what he had done for us.”

She closed the book and looked at me with eyes that belonged to the mother I used to know. “I wrote a letter protesting that,” she said. “They were only after him because he told the truth about how dangerous those bombs were.”

All I know about Robert Oppenheimer is what I read in this one book and sketchy facts about the Manhattan Project. I know of his famous comment, “Now I am become death, the destroyer of worlds,” when the first atomic bomb was exploded at Trinity site. He’s a feature of history to me.

I never knew my mother had an opinion about Robert Oppenheimer. I certainly never knew she wrote a letter to her Congressman protesting his treatment by our government.

I took the book and returned it to the library. When I got back to the car, the mental door had closed and Mama returned to chiding me for stealing her car.

But for that brief moment, the photo of a long-dead scientist cracked open the doorway into who she had been as an adult and let me see a brief glimpse of a bit of the hidden things of her life that I never knew.

 

This is Robert Oppenheimer, discussing his memory of the first atomic explosion.

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The Secret to a Happy and Joyful Life from the World’s Oldest Living Nun

Long life is a gift.

The gift is mostly to those of us who are blessed to spend time with these oldsters. Never think the elderly are useless. Even when they grow vague with dementia, they are our best and wisest teachers.

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Is it My Duty to Kill My Mother?

The video below is a newscast describing the vote to euthanize children in Belgium. It does not mention it in this video, but the same law also allows doctors to euthanize people with dementia.

Dementia is a vague diagnosis that is not necessarily life threatening. It can range from mild forgetfulness to a complete loss of mental faculties.

Dementia can be a cause of emotional distress in its early stages, when the person realizes they are forgetting. But once they pass this, it is no longer a problem for them. Dementia is not painful physically and it does not mean the person is unhappy.

My mother, who has dementia, is quite happy and enjoys her life. She tells me over and over again how much fun she is having when we go out for drives or she eats her daily ice cream cone. She always tells me that it’s been months since she’s eaten ice cream, and she enjoys it with the relish of someone who really hasn’t had ice cream for months.

My mother is not useless. She is a totally lovable and rather spoiled elderly child. She is not suffering.

My father, who did not have dementia, went through a period of increasing helplessness and decline before he died. That is nothing terrible that must be shortened to “spare” either the dying or their caregivers. It is a natural phase of life. Rather than a call for us to take up killing people, it is an opportunity for us to show our love in tangible and wonderful ways.

The opportunity to care for the people you love as they take their leave of this life is a gift to you. It is an exhausting experience, sometimes sad, sometimes surprisingly joyous. It is tender and so full of love that it lights up your life, even as you grieve the many losses of their decline.

My father died twenty years ago. No one urged me to dump him in a home or to withdraw food or water to “allow” him to die. But that was then. My time of caring for my failing Mama is in this new now of the post Christian West.

I have had a number of people, including medical personnel, urge me to do things that would either destroy my mother’s happiness and quality of life, or that would result in her premature death. Their reason? Sometimes they say that caring for her is too much “burden” for me. Other times, they don’t even bother with that gloss but demand that I do these things as if it was my responsibility to them to kill my own mother.

Make no mistake about it: Advanced directives and carping medical “advice” that has nothing to do with medicine and everything to do with social values can be and often are used as a not-so-subtle way to bully people into euthanizing their loved ones.

We are not even one step away from the full-blown slaughter of “useless eaters” of our horrific past. We keep inching toward it in a movement fueled by media propaganda and sophisticated lies concerning what we are doing. The glam we put on murder only hides the reality of it from those who want to be deceived.

I have not — ever — expressed the thought that caring for my mother is a “burden,” much less that it is “too much” for me and I should institutionalize her or even hasten her death to save myself from the trouble of taking care of her.

I am appalled and angered by these repeated, intrusive and usually censorious and judgmental demands that I do away with my mother. But that is the world in which we live. It is a bleak, selfish and utterly cold culture of death.

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Perspective

Caretaker daughters of mothers who are going through elderly dementia shouldn’t read and review books written by daughters of mothers who went through elderly dementia.

Sometimes, things are too close.

The review I wrote about The Geography of Memory, a Pilgrimage Through Alzheimers, took a lot out of me. It left me feeling blue and disconnected; not wanting to do anything. I consoled myself by playing the piano, and now I’m going to go spring my mother from Adult Day Care and spend the lunch hour with her.

But between the piano and the decision to go get my mother, I found this video. It gives what I needed: Perspective.

Maybe it will do the same for you.

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Book Review: The Way We Were

To join the conversation about The Geography of Memory, a Pilgrimage Through Alzheimers, or to order a copy, go here

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The Geography of Memory a Pilgrimage Through Alzheimer’s, is a personal memoir, written by a woman whose mother died at the age of ninety after a long slide downward into dementia. 

Jeanne Murray Walker writes about growing-up in Nebraska during the 50s against the backdrop of her mother’s slowly worsening dementia. She describes her efforts to participate in her mother’s care, despite the fact that she lived half-way across the country from her mother. 

Caring for a dying parent seems to rip open the seams on the bag of memories we all have inside us. I experienced this when my father was dying. Things you thought were lost in the fog of time step out of the backdrop and present themselves to you, complete and fresh. I suddenly remembered my father as he had been when I was a tiny girl. I saw his face, heard his voice from back then. The experience taught me that we don’t forget. We simply file away and lose as the detritus of our daily living piles itself on top what happened back when. 

Evidently, Mrs Walker experienced something like that when her mother was sliding down. This book is the result of those awakened memories from her life, built around the backdrop of her mother’s slow leave-taking. 

Mrs Walker’s mother was a magnificent woman. She was one of those kind-as-Christmas, tough-as-a-Missouri-rail-spike fundamentalist Baptist women I grew up around and have known all my life. The faith people follow shapes them in powerful ways that are reflected in their overall character. It also infuses them with strength and a kind of power that people without faith, or with only a wishy-washy faith, simply do not have. 

This woman lost her husband at a young age, and was faced with supporting her three children back in the 50s and 60s, when career opportunities for women were limited mostly to jobs that paid less simply because they were “women’s work.” 

Fortunately, she was an educated woman for those years, a nurse. She told her kids that she would never afflict them with a stepfather and pushed on with the business of bringing home the bacon, paying the bills, and, as we say in this part of the world, raising them right. The Baptist church, with its simple theology and rock-ribbed certainties, formed the spine on which she built this life and raised her kids. 

When her only son died of asthma, she did not despair. She kept going and going, right through what sounds like a beautiful second marriage after her children were grown and on into an interested and interesting old age. 

Her mind began to betray her when she was in her mid 80s and then slowly unraveled itself as she aged into 90. Even though her daughters managed her care and placed her in what sounds like the best care facilities, she basically traversed this path alone. 

But The Geography of Memory is really about Jeanne Murray Walker rather than her mother. It tells the story of how Mrs Walker traveled the country in an exhausting round of visits and suffered the pain of separation from her mother during the time her mother was slowly dying. It describes honestly the confusion, pain, anger and exhaustion Mrs Walker felt while doing this. 

It also tells the story of what it was like to be raised by this woman. It is a memoir of a time, place and people that could only exist in the middle of America. The rock-ribbed faith and equally rock-ribbed courage of this woman infuse the daughter’s life with a strength that allows her to step out and move on. 

This is a familiar story to me. I know women like Mrs Walker’s mother. I grew up around them. I have also seen their daughters’ ability to separate and spread their wings, something that only really great mothers give their children. Read through that lens, The Geography of Memory is as much a book on the lost art of courageous child-rearing as it is a book about the slow declines of old age. 

Mrs Walker’s mother was never diagnosed with Alzheimer’s, and I doubt that was what was wrong with her memory. This thing that happens to most elderly people is a slide backwards into childhood and, ultimately, confusion. It’s as if the brain becomes disorganized; a tangled heap. 

I haven’t had a family member with Alzheimer’s, but I’ve seen a lot of it in my constituents. The word “alzheimer” has become a catch-all for the various dementias of old age. But it is a specific thing all its own that does not, so far as I can see, only strike the very elderly. My constituents with Alzheimer’s are different from the way Mrs Walker describes her mother. With them, it’s not so much a matter of losing their way to the bank as it is not knowing what a bank is. Over a period of time, they go blank. Instead of being a tangled heap, their brains seem to be hollowed out.

The reason I’m saying this is because it matters in how we treat our older people. 

The Geography of Memory is a beautifully written memoir about a magnificent woman and her magnificent daughter. The lessons it teaches are about living far more than they are about dying. Perhaps its sweetest lesson is that the memories of our lives are worth telling. 


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