Taking care of one's elderly parents

Taking care of one's parents is one of the things that happen at the end of life. It's harder than childcare, because with children the trajectory is up, the future is hopeful and open. With elders, the end is sad and downwards in many ways. And eldercare is always more expensive than child care. Paying for wonderful, brilliant, enriching child care is justifiable based on that hopeful future. It is easy to argue about cutting corners for someone with Alzheimer's. Really it is. I've heard it. And sometimes, too, it squeezes, time money and energy,  because you have kids you are taking care of, too.

My good friends Melissa & Strange are coping with Strange Mom, and some of the issues that accrue at the end of life. It (as usual) is a good read here (and update here). They are at the intersection of elder stubbornness, ill health, distance and a medical system that is optimized for things that are not necessarily in the patient or family's best interest. My heart goes out to them. [and if she does poop, you just clean it up. may that be the worst that happens].

At best, Medicare is frustrating, at worst, it is a bureaucratic nightmare that works poorly, and somewhere in the middle it doesn't cover what is needed. No one has ever saved enough money for what they need at the end of life, because, no one ever thinks they are going to need it.

Here are things I know are true:

The folks in charge at the medical end may mean well, but I frequently wanted to scream at them. They speak a different language. When I would ask for clarification they would say the same thing, but maybe a little louder. No I'm not hard of hearing. Nor am I stupid. You are just speaking a different language, and I do not understand what you mean. I have (medical & logistic/medicare) knowledge, and that helps, a little, but not a lot. Then, I would think about friends who don't know the medical system, and realize their frustrations, anger and sense of futility was, is, and continues to be, far worse than mine.

The social workers may be saints on the inside, and most of them care, oh do they care. But, there are rules and regs and moving an elderly person across state lines is like an 80 year old woman with walker going deep to catch a line drive. Not a chance in hell. The rules, they say,  are only "to protect our patients". And yes, I am sure there are horror stories about greedy children trying to get money. But these are people who have little, if any, resources, and I'm only trying to figure out how to manage this. Please stop throwing up roadblocks.

And then there are the other family issues. Dr. Strange is an only child. While in some ways that is sad, in others, it can be a plus. a feature, not a bug. Even, a relief, when you talk to people who are struggling with their sibs. I have a friend, who's Mom was a bit behind mine. I included her story and a picture of her mom at the end of this post about taking care of the elderly. Her Mom died a few months ago, and a new hell has opened up. Her sister is fighting over the shreds of "the estate". My friend gave up her job, and took care of her mother for 5-10 years. Her sister is suing her for mis-use of the estate (ie, taking money for caring for her mom). There are lawyers, and any money there might have been will be gone.  My other friend from that post is still caring for her Mom. Her brother and sister, who live near by, come on Mother's day and Christmas and her birthday to see their Mom. My friend is there everyday, and dealing with the angry phase of Alzheimer's. Watching your parents age, watching them lose what made them the human beings you love. Watching them lose poetry and words and memory is excruciating. Coping with the anger and the history of issues that all children have with their parents is just one more problem. No one's childhood was perfect, and some much less so than others. And dementia only brings out the worst pains from the past. Not to mention that dealing with your sibs is just one way of ripping off that scab.

So you are an only child, and must do it alone. Although if you have a good partner, they are there, and they can support you. Or you have sibs, and they can't or won't support you, and it opens along all the fault lines of your childhood. There is never enough money. There is seldom any professional support (even when you are a health care professional and speak the language). Our parents struggle for their autonomy, even as they feel it slipping through their fingers.

And then its all gone, and you'd give anything for one more minute.

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A few thoughts on elderly parents (part 2): Stuff about the elderly that is hard

Oct 25 2017 Published by under parents, Uncategorized

It's hard for us. It's hard for them. But: no one likes getting old. I'm not talking about embracing the I'm post-menopausal and not afraid of death old. I mean acknowledging that one is frail, and of diminished capacity in one way or another.

So: many elderly probably shouldn't be driving. Their vision is worse, in some cases their sense of space and distance is worse. But we live in a society where for many, if not most, people, not driving is not an option. You can't get a loaf of bread or a gallon of milk, let alone anything else, without getting into a car. Yes, there is uber and lyft and taxis and public transport. But have you tried those for everyday stuff? Not easy. What if you don't have a credit card? or a smart phone? Yes, we are scared to death they will hurt someone. And usually it's a bad car accident that makes them stop.

Many people refuse to plan for, or acknowledge, or really do anything about getting older. They all think: "It won't happen to me". This is part of the driving thing, but also doing laundry if your washer is in the basement. Its getting hearing aids and new glasses. Its figuring out the new interface that the bank, the credit card, the Social Security administration has online. All of this is hard, and its doubly hard if you didn't grow up with the technology or you still don't type (when I was in high school, typing was a girl's class). It's figuring out what to do when you computer isn't talking to the internet and you can't see the hardware.

It's forgetting that you left the kettle on, till it burns through, but you are too embarrassed to tell your kid, the one who lives near by, and its too hard to get to Walmart to buy a new one (because that's all you can afford) so you do without tea or coffee, because it's all so very very hard. But you miss the coffee and wonder how it got so bad.

I used to get so angry with my father who didn't like his hearing aids, and refused to wear them and then  couldn't understand a word I said about trying to make his computer talk to the internet (again).

We are angry because they live far away and don't want to leave what little of their life they have left. We are angry because they don't want to move some place where they will be safer, and probably happier. And then they get angry because who are we, their children, to tell them, the parents, how to live? We are angry because we want to help, and they don't want our help. They want to be left alone, thank you very much. And both sides often say: "and if you're going to be that way, just hang up now and stop bothering me".

But we love them, and try to remember how they, as best they could, supported us when we were difficult and unpleasant adolescents. So we call back and try to help, no matter how hard it is. And for those struggling right now, I say: I only wish I could have one more fight with my father or mother.

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A Few Thoughts on Elderly Parents (part 1)

Oct 23 2017 Published by under Alzheimer's disease, dementia, parents, time

One of the hardest things about "growing old" is watching those around you. I am still me, and day by day I may change, but I am still me on the inside. In some ways, getting older is like the frog in the pot. Put the frog in boiling water and it will jump out. Put the frog in cold water, and turn the heat up a tiny bit at a time, and the frog will let itself be cooked. Getting old happens a degree at a time. Before you know it, you have a belly and back aches and the strong desire to color your hair blue.

But while one is continuous and contiguous with ones younger self, one notices things in the other people in one's life.  Sometimes it just seeing a friend who you only see at the gym, out to dinner in fancy clothes. Sometimes its family members who live far away. These people have aged, and sometimes to a remarkable amount. The frog just jumps out of the pot.

The temporal bone is on the side of your head, and the temporalis muscle lies right above your jaw joint. They are called "temporal" not because your mind is your temple (despite what you may think). The "tempe" is from time, and the sides of your head, according to the ancients, is the canvas where Time's fingers first paint. Grey at the temples? Grey in time.

Sometimes it is not just grey beards and a shaky gait. Sometimes it starts being cognitive stuff. And if people dislike the idea that their bodies are aging, let me assure you that they like the idea of their mind aging even less. The clinical word for aging-illnesses of the mind is "dementia" de- for un- or bad, and "mentia" for mentation or mind. But as spastic, a very particular neuromuscular medical finding, was an childhood insult for kids you didn't like, demented is an insult for horror movies. And no one fancies themselves in horror movies, either as the monster or the victim.

So the first part of my advice about elder parents (or friend, or person-of-closeness-for-whom-a-standard-word-does-not-exist): acknowledge that it is hard for you. These are your (perhaps) beloved parents. Certainly these are people you remember being young and vital. They are people who (allegedly, in the best possible world, if things had maybe been different) cared for you. Who protected you. Who fed you, and now, now they are old, and weak and, yes, a bit pathetic, compared to your memory. This isn't easy.  I remember, well before dementia set in for my mother, seeing my parents walking down the street. Given where we were, at my sister's last apartment, they must have been in their 60's - the age I am now. I was going back to grad school, or postdoc? I had said goodbye and saw them walking away to visit friends who lived in the same city as my sister. They looked so old! This little old couple out of a movie or a story or something. Not my parents. I remember thinking: when did they get so old? And now: why didn't I run back and tell them that I loved them?

I've loved, been friends with, still am friends with, taken care of, and more, many "old" people. Old defined as older than me. Sometimes its not hard to be a friend to someone with a bad memory, or take a meal to someone who can't cook. Yet when it gets to be family, all the emotions get in the way. Stuff from when you were 8 or 12 or 16 or 30 shows up in your head, demanding attention. You may not be able to say "out damned spot" or you may, and the spot will stay. Just acknowledging it, seeing it, may help you set it aside.

One of the hardest things I did when my Mom was in the early-ish stages of Alzheimer's disease was realizing, and giving credence to the idea that I could no longer fight with her. That all the issues and tensions were going to be moot. She, strong intelligent and very hard on me, would get furious and stop talking to me if I tried to argue with her. And sometimes she would cry. If I tried to comfort her tears, she would double down on the anger and say very hurtful things, things she knew were hurtful. What kind of things? Things like "you will never be a good scientist". Or worse. She knew where my weak places were. In the beginning people with dementia are smart, and articulate and cruel. Executive function is one of the first things to go: the part of brain and personality that keeps civilization going, that keeps people from cursing and saying the worst that they think of.

I had to let go of the past. I had to say (and say over and over): you cannot fight with her. She is not the person she was. It felt unfair. It was unfair. It felt like she won in the end. That I could never convince her  of who I was? But who ever does win against their parent? By the time you can cognitively win, you are not playing and fighting with the opponent of your youth.

Eventually, I reached that place, and really, things were much easier for me. I was a duck and her words rolled off my back. Yes, Mom. Whatever you say Mom. There are other coping mechanisms. Other strategies. And, really, people who care. Let yourself cry and mourn what is lost, because truly, things are being lost. But you, you are still continuous with the glorious child that you were.


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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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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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