Archive for the 'dementia' category

Words on Alzheimer's disease

Jun 14 2017 Published by under Alzheimer's disease, dementia

I get the updates from the Foundation for Biomedical Research, a group that supports animal research in biomedicine. They sent a link to a recent post they had, which talked about "Still Alice", the book and movie. There is a quote from the movie (I believe) that just tore at me:

“They’ve been doing all these tests, and I’m really scared,” she said. “I know what I’m feeling. It feels like my brain is dying and everything I’ve worked for in my entire life is going. It’s all going.”

And that is the fear. The fear my mother had, the fear that I now have. We are scientists, and the thought of our brain dying is about the most scary thing, for us, that we can think of.

For my mother, and her working class origins, her brain and her hard work were her ticket out of poverty and illiteracy and the endless soul destroying labor of her parents. She could never admit her illness, never admit she was losing her brain.

Just those words! "losing your mind". They are loaded and painful and mean so much more than just Alzheimer's disease. I do not want to lose my mind. But now, it is something that is there, lurking in a corner of that mind I want to keep.


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Taking care of our elderly

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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How do I know what is the right thing to do?

Oct 20 2016 Published by under dementia

I wrote this several months ago. I had forgotten it.


My mother is slipping out of this world (see these posts: here and  here and here and here). I've written a lot about my pain and hers:

I too want Mama

Winter of her life is now

Snow on hair and mind

I see her once or twice a week. I care for her when I see her, but that's almost more for me, as there are others who care for her where she lives.  She is in a good place, a safe place. She is being taken care of by people who have a calling to take care of her. But almost every time I leave her I think: should I being doing more?

And then the internal dialogue starts:

"Should I be doing more?"

"But what else could I do?"

"I could go see her every day"

"That would be very difficult, and end up taking 60-90 minutes out of my already over-filled time"

"But I waste so much time... maybe this instead of reading sci-fi at night"

"Would it matter to her?"

"How can I possibly know what matters to her?"

I do not think that I am alone in this dialogue. I would guess that every aging child, every adult child who cares for their parent, whether they have the resources I do, or whether the demented (or not demented) parent is living at home in too-small of a space, has this discussion with themselves. To take on the care of a parent, one must already have made a commitment.



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Aging Parents, encore

May 04 2016 Published by under Alzheimer's disease, dementia, Uncategorized

There was a special section, many pages, many words, on a woman who has Alzheimer's disease in the Sunday NYTimes this weekend. I saw it and my heart sank. It fell into the basket of "things I should read but I really don't want to". My sister called and left me a message that was simply "do I have to read this? did you?".

I did read most of the article. But it was pure self-discipline. I did at any point think: wow, that's a good insight. Nor at any point did I feel like I was going to cry for the sadness of it all. The article was well written. If you have never interacted beyond greeting a person with AD, you would learn something.

The woman was professional, former nurse, in the health care biz management. She had just retired, and clearly had health care insurance and enough money to keep living in New York City. She had a loving child and a supportive spouse. She found lots of resources in Manhattan. When one counselor suggested something she thought was absurd (fake it and don't tell anyone), she immediately stopped seeing her and found someone else.

There was some insight into how AD impacted her. What she could and could not do, how it progressed from early stages to mid-stages. Some of the stories were ones I had lived. Others she seemed to be doing far better than my mother ever did. And there were none of the really horrible stories, like when my mother was wandering around in the middle of dangerous parts of the city with everyone frantic and the police looking for her. Or when my mother went through angry phase and bit a nurse and hurled the most vile and hurtful insults at me and my sister: "I can't believe I carried something as horrible as you in my womb for even a month, let alone nine". In retrospect, my mother was angry and mean, but very creative at this time.  The NYT story recommend a good book: The 36-Hour Day by Mace & Rabins. If you are taking care of, or even just interacting with someone who takes care of an AD patient, this is an excellent book.

I just had no emotional resonance with this piece. It's not that I don't enjoy other people's stories about surviving academia, science, toxic labs, evil department chairs, etc etc. But this did not move me. I read the book Still Alice by Lisa Genova and cried through large swaths of it. I felt the book had captured the voice of someone losing their cognition, their mind, their self. In part, I know its because my Mom is far beyond this stage. And I see women, every week, in my mother's unit, who are at all the stages described in this story. And every week, or 2 or 3 times a week, I cry when I leave my mother. I cry for the waste of life, for the mental debilitation, for the loneliness of these women. Whether or not they have family and people visiting, and holding their hands and them, this disease makes these people cruelly alone.

So I told my sister, no she didn't have to read it, that it would not be a good use of her time. My sister was relieved, and that was that.



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It’s hard to watch someone die

Feb 15 2016 Published by under Alzheimer's disease, dementia

My mother is dying. She is dying, surely as the Chicago Cubs will fail to win the World Series, again (apologies to JKR). But she is dying very slowly. At times this is less painful. I can forget she is dying when she seems to be the same week after week. She turned 90 already this year, the first baby born in Passaic, NJ 90 years ago.

But sometimes her dying is much more real and now and present for me. This week, the hospice people called to tell me that she had an “incident”. This, by the way, is her second go round with hospice. She was “on hospice” as they say, about five years ago, but got kicked off because she wasn’t dying fast enough. No one believes she is not going to die, not me, not my sister or brother, or any of her aging friends. But she is taking her time about it.

When they called me, in the middle of the day about the “incident”, I said “do I need to come right now?”. Coming right away is a 20-30 min drive. When I moved to almost-MRU in the heartland of this country, I moved my mother with me, away from the city where she had lived for for over 50 years. No one else cared. My father was gone, and my brother and sister too busy with their lives to think that making sure she was in the same place as one of us was something important.  No, said the nurse, she is doing OK. She perked up and ate something and drank something and we have her on oxygen and that seems to help.

What, I said, is hospice’s view on using oxygen? My sister and I had already agreed on no trips to the hospital, no IV lines, not only nothing heroic, pretty much nothing except that which makes her comfortable, and as happy as she can be. Hospice, the nurse said, thinks oxygen is a family decision. Oh crap, I thought. I do not want to be making decisions. But, the nurse said, oxygen doesn’t extend anyone’s life, it will just keep her comfortable. Until, of course, I thought, she pulls the cannula off her face.

One of our favorite (mine, my sister’s, my father’s, who was alive at the time) stories about my mother and her dementia was a time she was in patient at the Very World Famous MRU hospital, where both of us taught. She was in to get her meds adjusted, as she had bit a nurse in the facility where she was living. I am sure the nurse did something. People with dementia lose executive function, that psychologic construct that keeps us from telling our department chairs that they are a jerkoff asshole to their face. My mother wasn't inherently mean or nasty, but she knew what she did and did not want. She just didn't have a good way of expressing it, and lacked the executive function to understand what would be an acceptable way of expressing it. During this hospital stay, a young phlebotomist tried to take blood from my Mom, without much success. As I watched him try for the fourth time, my Mom grabbed the needle and tried to stab him and said “see how you like this shit”. For the record, when intact, my mother never cursed and objected strongly to my, er, colorful language. “Potnia, darling, academics just don’t talk that way”. It wasn’t about how women talk, but about how scholars talk.

Back to last week. When I did get to my Mom, about an hour later, she was fine. I notice the oxygen tank had run out, but she was alert and chattering in her dementia-talk, and had two bowls of ice cream. Since then I've seen her twice, and she is doing as well as anyone who no longer has either language or speech, but some voice. My sister says she’s got at least 9 lives, I think it’s a near- infinite supply. I go on watching, and waiting. She goes on eating ice cream. And we both know that Alzheimer's is an ugly ugly disease.

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Thoughts on Pseudonmity and the Power of Literature

Sep 28 2015 Published by under Alzheimer's disease, dementia, Uncategorized

The other morning SuperKash tweeted a haiku, with a reply from Zoe MCElligott:

My reply was:

It got me started thinking again about my mother. Not that I needed much prompting. She is not far from near the top of my thoughts, and I see her frequently. Here is what I wrote about her and her Alzheimer's disease.

As I have said, my mother was a powerful figure for me. But we did not get along when I was younger. Was she a good mother? How can anyone know? She fought against the legacy of her background of poverty and neglect, and tried to be a much better mother to me and my sibs than her mother was to her and her sibs. Both of her sibs ended up being alcoholics, although neither of their parents was.  She fought against all of this to establish a different life for her, and for her children.

Part of why I write what I do is because she moves me so powerfully. There is no question that she supported me in my quest to be a scientist in a way that still blinds me with her love. There is no question that I would not be who I am, that I would not have succeeded in my career without her.

She was a brilliant researcher in her own right, establishing a now flourishing field at a time when people laughed at the idea of such a discipline. There is part of me that really, so very much, wants to talk about that. I want to link to her important publications and show what she did. But I can't, not and maintain my Potnia-identity, which makes me sad.

But there is something beyond that sadness in this decision. Now, you need to take my word on who my mother was. It forces me to find the words to convey her to you without falling back on the specifics of what she did. The latter is science - the data of what she did and how she did it when she did it. That would convince you. But would it convey the emotions of what I feel? What you begin to know my mother from that?

What I am doing is the former, finding the words. This is the power of literature. My haiku, dashed off in a minute needs editing. There are syllables I would tweak, words I would move. I'm not making a claim for great literature. But if I try to write and show and bring my mother to life with words, is it not more powerful? Is it not a better tribute to her this way?

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Musings on Alzheimer's Disease

May 21 2015 Published by under Alzheimer's disease, dementia, Uncategorized

Part of what is hard about Alzheimer's is the feeling that it is changing who one is. There was a long article this past Sunday in the NYTimes magazine about Sandy Bem, a psychologist with AD who decided to kill herself. She knew what was going on and had made the decision when she was cognitively intact. The story is powerful, in part because Bem was a powerful person, in part because of the story and in part because of the excellent writing of Robin Marantz Henig.  The story included swathes of her (relevant) life, including this passage which resonated with me:

As a parent in the 1970s, Sandy turned every interaction with her children into a political act. During story time, she would go through their picture books with a bottle of Wite-­Out and a Magic Marker, changing a hero’s name from male to female, revising plot lines, adding long hair or breasts to some of the drawings.

The story is not just about a woman making a hard decision. It is about this woman in the life she lived making a hard decision. Sandy Bem was a professor, and became a clinician late in life. She was a psychologist and knew about cognition and its changes over the lifespan. At times it seems the decision was easy, and then Henig gives us the consequences to family as Bem's disease progresses. One of the quotes from the article that  I found compelling concerned her ex-husband, who became one of her strongest sources of support as she got worse:

“If some devil had asked whether I would be willing to buy Daryl’s deeper self at the cost of my developing dementia,” she wrote, “I would say NO without hesitation. But if it comes free with my unstoppable decline into hell, I’m thankful for the gift.”

This quote is really about Bem, and her acceptance of the changes the disease brought to her. Nobody wants AD, but she was willing to look it in the face and make decisions about what happens next and how to navigate her changed life. Sandy Bem lived a powerful life, making hard choices <cue up quote about making hard choices from Anne Bancroft  in G.I. Jane. As my friend Maye says: there is a quote for every life situation from GI Jane>. The article, to me, was about living (and ending) life on your own terms, by your own choice. That is such a hard thing to do. It is so easy to find blame, but I found not a drop of self-pity in Bem. <cue up 2nd GI Jane quote about self-pity>.

Sandy Bem falls between me and my mother in age. My mother is end stage Alzheimer's and is well beyond the place where Sandy Bem decided to end her life. My mother never could have made the decision that Bem did. She was in absolute denial about things going wrong. My mother was smart and articulate and spent years pretending nothing was wrong. She never would or could have chosen to commit suicide. When intact she would have kept hoping for a cure until it was too late to make the choice that Bem did. And even now, with very little cognitive ability left and her dignity rapidly vanishing, I am not sure that my mother-then would want my mother-now to chose death.

Part of what is hard about Alzheimer's is the feeling that it is changing who one is. I write "my mother-then" with unease. One of my sibs has totally abandoned my mother. He has not seen her in years, does not communicate with me to find out how she is, what she needs, what she was like this week. To him, his mother is dead and gone and there is someone else in her place.

I try to think of this as a continuum. Just as any of us is not the person we were when were 2 let alone 12, my mother is not the person she was at 70 or even 80 when she could have made the choices that Sandy Bem did. There is still a person inside the husk that bears my mother's name. But I am uneasy. I do not know how you judge what this person in front of me wants. I am the one who is making the hard decisions, not the person who the decisions impact. I will try to chose, and to feel no self-pity as I watch my mother disintegrate.


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Saying Goodbye to Your Parents

Mar 01 2015 Published by under Alzheimer's disease, dementia, 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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Living life without regrets

Feb 04 2015 Published by under Alzheimer's disease, dementia, Uncategorized

On the tweets this morning:
<blockquoteclass="twitter-tweet" lang="en">

With older parents we must have "difficultdiscussions." What do you do when your parent says, "fuckyou, I don't want to think about it."

— Doctor_Strange(@StrangeSource) February 4, 2015

  I've been there. My father died about 4 years ago at the age of 91 and a half. As he used to say, the half is very important to the old and the young. My mother is still alive, in end stage Alzheimer's and just turned 89. She is in a place where she is safe, and well cared for. I could not take care of someone who need 24 hr care. But getting to this point was hard. I did most of the work, and spent long hours resenting my brother and sister.  I lived near my parents, my sibs did not. In fact, I took a job nearer to my parents (lots of other reasons to, but this was one) about 10 years before my father died, at the point when it was clear my mother had dementia. In the beginning my sibs would tell me what to do, and that precipitated problems. In the beginning my parents were resentful and difficult and told me what to do. That also caused problems. I've got sad stories and funny stories and painful stories.

I'm not sure I've got anything resembling useful advice.

I did a huge amount for them (and still do for my mother). I did not get much in the way of thanks, appreciation or even acknowledgement. I made some hard choices, and as a result a number of things in my life were very different.

But what I absolutely do not have is any regrets.  But the end of my parent's life was far, far better because of what I did. It is easy to be good to little children when they are cute and charming. Old people are never charming the way children are. It is easy to help a friend when its someone who will help you, or someone with whom you have an ongoing relationship. But even if you love your parents, even if your childhood was not difficult and fraught with stuff you Don't Want To Talk About, it is much harder. If you parents are not sweet, kindly grandparents, but nasty and irascible, it becomes much hard to do anything, to go out of your way, let alone keep your temper. But still, you have to get up with yourself in the morning. Live your life without regrets.  

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Dreams and Mothers

Oct 12 2014 Published by under Alzheimer's disease, dementia, Uncategorized

I read a marvelous post by activist Deborah Jiang-Stein which is an excerpt from her new book. I don't want to give away the punch line, which is very powerful.

Part of that power was to make me think about lost children and lost mothers. No, not think, feel. I've written some about my mother, who was a powerful mentor to me from when I first thought I wanted to be a scientist. Aside 1: here is a difference between a boomer & a younger: My instinct is to say "when thought I wanted to be ..." and my junior colleagues would say "when I knew I was going to be...". Moving on.

My mother has end-stage Alzheimer's disease. When I moved to my new almost-MRU, I brought her with me. I had taken my last job at the old-MRU to be in the same city as my parents at the ends of their lives. My mother now needs 24-care, and I am extremely lucky that she saved enough money for this wretched end of life. Aside 2: anyone struggling with this issue who would like advice and suggestions based on my history, email me, we can talk. Right now, my mother is not the person who mentored me, fought with me, and over the years said many hurtful things. The person she is now is a different person. This is very hard for my sibs to understand, and they seldom visit her any more.

It's not entirely wretched. She has a little speech, but no language. She cannot feed herself but she loves ice cream. She smiles at me, sometimes. She gets angry, still. And she will occasionally kiss me, though she gets kissing and eating mixed up sometimes. And once when I laid my head down on her shoulder and started crying, she put her arms around me and made soothing noises.

One memory of her, of something that infuriated me at the time. Earlier in her disease, she'd have no time sense and call at all hours. She went through a couple of months where she'd call in the middle of the night and ask about the "little ones" or "my small ones". Sometimes she would be in a panic, not knowing where they were. I learned to say "Mom, I have the little ones. They are with me tonight. They are sleeping but they love you". Sometimes she would ask "are they safe?". Sometimes, she would say "that's good" and then just hang up. Now I hold onto this memory like a worn-out good luck charm.

I am friends with some of her friends, now in their 90's. Women of that generation at any MRU all knew each other. Most are sharp and insightful and a joy to talk with. They tell me stories about my Mom, and often those stories will trigger dreams. In my dreams my mother is intact, and talks to me. We fight a lot, which we did before. But she's there. She's talking to me. And that is enough.

Oh, one of my mother's best comments to me:

Get a PhD, not a husband. A PhD is more useful.


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