Archive for the 'parents' category

Taking care of our elderly

Mar 10 2017 Published by under dementia, life, parents, Uncategorized

Last weekend I had breakfast with one friend, and dinner with another. They both are caregivers for their Moms. Both, however, have recently moved their Moms from home to assisted living/Alzheimer's units. The medical conditions are different in these Moms, and the personalities were different before the disease.

Yet, dementia brings on changes in personality that are as tough as they are predictable. Some is a loss of executive function, and the ability, nay desire, to say whatever enters your head. I remember "You can't be my child, because I don't have so many horrible genes". Some is anger at loss of function, or bluster for covering up mental lapses. One parent of a different friend became sweet and kind and charming. But that's the only one I can recall that the changes were perceived as an improvement.

My friends are women I've known for a while, the three years since I moved to almost-MRU. They've listened to me go through the pain, yes the pain, of watching my mother slip away. We've talked about this over the years. One friends mother is just in the beginning stages, and the other about a year behind my mother. The emotion burden is huge. And I will admit to feeling some relief when listening to them that these particular stages were over, for me.

One of the moms is angry. All the time. Painfully angry. Demanding people who are gone. Demanding the presence of my friend, all the time. It is hard to leave your crying mother, whether she is angry or emotionally bereft. I know this feeling. The only thing worse is when they forget to ask you to stay, just a minute more. Or when they can no longer scream at you, demand, plead.

The other mom has lost language. At first, language loss, albeit with speech, still, seems a relief. No more harangues, no more ridiculous requests, no more crying for people who have been dead for 20 or 50 years. But quickly,  for children caring for parents, this becomes a new loss. One of the things about AD is that you lose your parent or spouse or friend over and over and over again.

Each stage, each change is a knife in the heart. Some days, leaving my mom, coming home, I would look down at my chest and expect to see blood seeping through my clothes. I would think: this is the worst it can get. My mother was no longer crying for specific people, but tears and tears and tears for unknown sadness beyond words. There is often no way to comfort people with AD. They are angry, and then worse, they do not know you want to comfort them.

 

My friend, whose mother no longer has language, who is drifting into that twilight where neither mother nor daughter can see anything, showed me a picture of her mom. Here it is, with my friends permission. I took one look, and knew that it was the same picture I had of my mother. Our mothers, who remembering nothing else in their lives, remember being a mother.

 

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Saying Goodbye to Your Parents

Mar 01 2015 Published by under life, parents

Ann Patchett is an author whose novels I find compelling. Her novel State of Wonder does a good a job of capturing some the joy and a wonder of field work. The novel is set in South America, and I did field work in SE Asia, but the novel held me.

She has a column in Sundays NYTimes called "Finding Joy in My Father's Death". I love her writing, the stories she tells. I love that she can pull me into what she is thinking. But now, as my mother is very very slowly dying of Alzheimer's disease, I do not want to read other people's views. There is a lot of talk about AD right now, given the academy awards, and I find that I turn the radio off. I  don't want to know more about it. I feel like I know everything I want to know, need to know, except how much longer will my mother live? How hard is this going to be for me and my sister? How much more indignity will this wonderful brilliant woman have before she finally shuffles off her mortal coil?

But I glanced at Patchett's op-ed and read the first paragraph and I was hooked. From the op-ed:

 

In Costco, I told Felice that I would do everything I could to help my father, but that I had resolved not to feel sad.

“He’s still alive,” I said, thinking he might last a few months. “I’ve decided to wait and feel terrible once he’s dead.”

“Or not,” she said brightly, and gave me a hug.

Or not. Or not. More:

“What if you’ve thrown a dinner party,” I said. “And at 11 o’clock your guests got up to leave. The dishes were still on the table, the pans were in the sink, you had to go to work in the morning, but the guests just kept standing in the open door saying good night. They tell you another story, praise your cooking, go back to look for their gloves. They do this for three years.”

Please don't say, but this is your mother, not a house guest. Please don't say, but this is a life, not a dinner party. The person who my mother was, professor and brilliant do-er of cross-word puzzles and reader of murder mysteries and knitter of gorgeous sweaters is gone. There is someone there. Someone who is contiguous with her. Someone who sometimes looks like her, but not always. The woman with whom I fought and argued, the woman who hurt me and who I surely hurt in return, is not the woman I visit and feed and comfort.

There is very little left of my mother. There are still things in which, I believe, I think, I hope, she takes joy: ice cream, a hand to hold. Why think? There is no language left, no expression or communication. I do not know what she sees, I do not know that we understand how AD interferes with the signals from eyes to brain.

Patchett's post was a little ray of light for me. A little help in thinking about my mother.

I do not know how to end this blog post. Hopeful? "And as long as there is a person there, I am still her daughter, and I will still care for her"? or coldly realistic? "She has certainly taken years at the door to leave the party and it is painful and hard and cruel". Both are true.

I have no idea what I will feel when she is gone. Hell, I don't know what I feel right now. The world is not a fair place, to old people  dying slowing or to young people figuring it out.

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