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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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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