April 15th, 2006
|10:11 pm - Conflicting emotions: failure and failing parents|
On January 18th this year, I wrote much of the essay below for a friend on Femrel, Wendlyn Alter, whose father needed more attention that she could possibly give while working full time to support them both.
I swear, the hardest thing on earth is to be responsible for another person's safety and life-in-general. Doesn't matter if the person is older, younger, or the same as as you are. Sometimes it feels as if there are NO right answers.
All we can ever do is our best, and guilt about what we might have done better keeps us from the job at hand, with the facts at hand. Someone remind me of this when I need it, right?
It is never "failure" to ask for assistance when needed. It is failure to believe one can do it all by oneself, and then fail both the other person and oneself for pride's sake. It's the one thing that's kept me and others in the running for Best X of the Year, as opposed to not even making the first qualifying round.
You, Wendlyn, and also many others, struggle against overwhelming-to-most odds and circumstances and come out alive and reasonably sane
BECAUSE YOU ASK FOR HELP when it's called for, and
BECAUSE YOU ARE STRONGER THAN YOU FEEL at the moment of asking.
I broke down in tears at the thought of a mood cycle a week, with a two day crash on the weekends this last autumn. I am so afraid of this [bipolar] disorder crippling me--or the medications for it doing so--that I often fear what the next day will bring. I get better only because I want to so badly, and I have a psychiatrist who works the med changes for me, and a therapist who sees what I can't voice or comprehend just yet. Without those two women, no other support would be enough, and no support would be no different.
It is strength to ask for help when the task is more than you can face alone.
It's a mitzvah to let your friends help...and there's a whole set of industries needing your help to survive (laugh, it's a joke).
Remember Wendlyn, my mother was no less unhappy nor any happier when she was transferred to the nursing home after 6 years at home. My sister's health improved drastically. My mother had better care, and my sister began discovering life again. My mother would have been 82 today. She spent 10 years in a prison of her body. My sister was showing signs of being in a worse prison. It is no sin to wish to outlive your father. It is not surprising when ANYONE discovers an Alzheimer's patient is farther along than realized, because they have some coping mechanisms, and the changes are gradual, usually.
It doesn't have to happen to you--and your dad was happy at the place you visited. He'll be well taken care of whether you're working out of town or in; any crisis will be dealt with competently and swiftly, and he'll be able to do things with you that are fun for both of you. People who understand Alzheimer's will be there, and they can help YOU with his Alzheimer's, too. The center should have social workers for that. They will help you understand and process what you know.
[As it turned out the facility went sour and other arrangements have been made for the next 6 months or so]
People who judge people about nursing homes and the parents therein have generally never been in the situation where they had, solo, to deal with a parent incapacitated and unaware. I wouldn't wish it on an enemy, but many folk who never did anyone wrong have to deal with this awful choice, the situations coming out of that choice, and we have no social rituals for people to follow when one's parents go so badly downhill. We seldom live close enough anymore--it was bad enough for me in Northern California, when my mother and sister were in San Diego: a friend of mine, silme, from a couple of Loreena McKennitt-centric lists has an ocean to cross.
It is very hard visiting a body whose spirit, once familiar and joined to the body, is no longer there. Because I was not wrapped up in weekly visits or daily presence, my mother's body was just that. The person I'd known was no longer there, and I didn't particularly like the current spirit because she made my sister's life a living hell. Carol, however, was indeed wrapped up in every detail of our mother's existence. The only thing I knew to do was to support her in her support of our mom. She got the Mother's Day cards and suchlike as well. It wasn't enough--it might not have been enough if I'd been in the same area. I wasn't working, but I had a kid to rear and a household to run. Ideally, you'd have a caregiver or two, at least two siblings living in or near to take care of the parent, and more money than the parent made in a lifetime to care for said parent--as if that happens more than a quarter of the time! My mother's care cost more a month than her best working salary and my sister's salary put together. No wonder so many people go for stripping the assets and going for a Medicare-fundable facility--their other choice is to bankrupt themselves and be unable to live in their own home, through no financial fault of their own. From what I hear, catastrophic longterm care policies are ripoffs.
What are you supposed to do when your willingness to care exceeds your ability? When the person has changed so much that you don't know them, and they might not know you--and they're going to outlive you if you try to care for them yourself? These days, those aging parents so lovingly and erroneously portrayed in ads and talk shows? Have a good time finding them. Most are often living longer in frail circumstances, and you could care for them for a decade or more, being worn down by caring for someone who will never outgrow the need, who will never grow UP but only waste slowly. If a couple gets to the stage where each of them needs care, they often cannot find a place in the same nursing home--they must go to separate facilities. This is what my uncle and aunt faced. Their only daughter lives close enough to where they were to take them in and care for them as needed (aunt with Alzheimer's, uncle with cardio pulmonary issues AND diabetes), getting the money they would have given to stay in a nursing home. The children there, their grandkids, are old enough to help, being late in high school or early in college. This is not the usual setup.
I have another friend from both those lists who has more than one personality in his head. It's not the same as first there was this parent-of-memory, and now you have this stranger with no connection, save in the body, to the older personality. Very, very seldom does the aging parent's personality change go for the better. I know one only, and her offspring are very, very lucky.
The docile but fragile older parent who needs little additional care is a small minority of those who are incapacitated by disease or accident. Their children will never know, nor understand, what others of their generation go through.
I have been caregiver for two people so far... My aunt, who was my mother's youngest sibling, who after spending years caring brilliantly
for my grandmother, a few years later started to show signs of Alzheimer's and eventually was diagnosed officially with that dread disease... It took a lot of persuasion and convincing by us to get her to leave her home and move to a retirement apartment. But her paranoia and her delusions eventually got the better of her and she gave in to our arguments. She still refused to acknowledge her disease and wouldn't move into an assisted living place. However, after just a year in the retirement apartment, they asked us to move her as her delusions were beginning to
become a problem. So, I moved her again without referring to what kind of a facility that it was, just that it was a cheaper place. She managed to stay in that place for 18 months before the management said she needed to be put in a locked facility. The episode where she tried to leave the building stark naked was one of the many reasons for this. She only lasted six months before she fell ill with pneumonia and died. It was during these last six months that my mother had her stroke and became an invalid. It was during that six month period I had to care for my aunt, care for my mother and try to hold down a full time job.
My aunt was only able to afford all this because she had had the wisdom in advance to invest in long-term care health insurance. Once she moved to the assisted living place, it kicked in and paid almost all of the $4000 per month rent. What it didn't pay, was covered by the sale of her house, which had been invested for her and the interest paid for the rest of her care. But my mother didn't have my aunt's foresight. She had nothing to pay for either a nursing home or an assisted living place. She didn't have the money to pay for even a horrible place, let along a good quality place. We tried to have an inhome care-giver to watch Mom during the hours that I worked. My uncle gave us $10,000 to help pay for that, but inhome caregiving cost over $2000 per month and my uncle's gift only lasted 5 months. We struggled to keep up the payments, but it was eating
into our savings and it came to a head when I realized that the caregiver was working less hours than I was and taking my entire monthly take home pay. So, I bit the bullet and retired early, taking a huge hit on my pension, but in the long run, I am making more money in the long run than if I continued to pay a caregiver. My job was hassling me and not being
very sympathetic especially when my aunt AND my mom were both in the hospital. I was taking too many days off. I was coming to work too tired. I wasn't working up to my previous par. I am glad I have gotten
rid of that crap and my stress levels have lowered themselves considerably.
My aunt has since died. My mom begs to die. I am not sorry I took the road I did. It has its problems, but we could never have gone the assisted living route. Never. We would have had to have sold the house. And then where would I have lived? It wasn't an easy decision, but my relationship with my mom has improved and I know that whenever God takes her to Heaven, I will know in my mind that I did everything I could for her.
I don't know if this will help your friend, but I hope that she knows that here are a lot of others in her position. Finding a good support group, whether formal or informal will help her alot, I think.