I'm glad to see I'm not alone in this feeling. If there were any hope of improvement I would feel differently. This isn't new for me, went through it with other family members, even my son. There came a point where the "possible cure" was So hard on him. Yes, it was an opportunity for the doctors to test drugs, but it was my child who had to endure the effects. There came a day when I prepared his medicine, they had let him come home for a time, he said, please Mom, I don't want to take that. And, that was it. I don't believe the end of life should be like that for any of us.
We are of the generation that thought doctors were next to God, their word was law. Was a long time ago I had to make some hard choices for other people. For myself though, I have no qualms deciding what I want to do with my own body. Plus, I'm an organ donor for anything they can use - and you would be schocked to know how many parts of the body can be reused - then what's left will go to the body farm for law enforcement education.
When we were in it, I didn't have thoughts like this. It was all too oppressive, stressful, and draining to go through. Now I realize there's a very good reason not to remember my wife the way she was dominated by the disease. It robbed her of her dignity and of her ability to do anything about that. If I remember her the way she was then, now that she is dead and the disease is dead, I will be unfair to her and to us.
It's a big undertaking like building the Sphinx was. I had to live through the horrors, and then deal with them, and then accept them, and then forgive them, and then banish them. No disease crap allowed. She couldn't defend herself and can't now either, so it's up to me to defend her.
She would never have behaved the way she did in any manner if she wasn't being overcome by Alzheimer's. She was robbed of the ability to be herself, to take responsibility, or to behave in other ways except with the eroding bits and pieces the disease steadily took. Now that I have the ability, I can restore some of the truth of who she was when she was herself.
I agree Wolf, losing their dignity and abilities, is about as bad as it gets. I doubt any terminal illness is any better, but AZ has got to be the worst thing that can happen to a person. I've know friends with cancer and other terminal diseases, that were terminal - and I'm sure their families were devastated -- but there wasn't the change in the person like there is with AZ. It is like a fungus that keeps spreading and growing taking over not only it's host but anyone who is close to them.
After all the fighting over hiring some kids to mow, he was so gleeful and taunting Friday when it stormed and they couldn't come. Then yesterday early the doorbell rang. It was them, I had to get out quick before he ran them off. They are young boys, just 10 & 12 sons of our local sheriff trying to earn some money. I was little concerned about their age but he said they did all the mowing etc on their place. Since they don't drive, he stayed with them the entire time, showing them the best way to do things, get around my flowers, and our hay fields are tall so have to work around them. Even saw him doing some hand weeding around a couple of places. But went well, they did a good job, and said they would do better next time - we were their very first customers and they were a little nervous. Left some weeds I guess they thought were flowers and some places didn't get quite close enough to the house, but for their first time, I was super pleased. One boy ran the zero turn, another the big lawn tractor and the weed eater and Dad pitched in occasionally. Looks so good to have it all mowed and cleaned at once. I worked outside for several hours this morning pulling some weeds, putting markers where I have flowers growing, where I want some holes dug and just enjoying being outside. Was very warm and sunny but now it's turned dark and the thunder has started so I guess our 7 days of storms will start shortly. Can't get the hay baled till this rain stops. After we moved back here I learned first hand the old saying "make hay while the sun shines", LOL. You need one day to cut, one day to turn and one more day to bale, so three days of sunshine. If it gets wet during that time you could lose the entire crop.
We do have workers comp on our homeowners policy but he is our local sheriff and lives about 3 miles from us. Also friends with our GD who is in the neighboring co (much bigger) sheriff dept and we are friends with their sheriff. Doesn't mean something can't happen, but in these small towns where he advertised wanting work for the boys, I'm not too worried. I did question him due to their age, but since the boys don't drive I suspect he will stay each time, only takes a couple of hours and is to his advantage for them to have a good experience with the local people.
OT: I used to volunteer at the jail. I taught GED classes, parenting etc and thoroughly enjoyed it. Never had any problems with any of the inmates. Also taught a 4week art class they had to "earn" the right to attend. The youngest was 18, whose brother and Father were in at the same time - I had grandmothers, professional people, housewives, a pregnant woman who went into labor in my class, Federal hold prisoners - drug dealers - murderers and everything in-between. Note, the most violent prisoners were held in a different location.
I taught similar subjects at the battered women's shelter and have to say the inmates were much easier. They were nicer, polite and interested in bettering themselves, that would help when they were released. The women didn't have an interest in getting their GED, nor in parenting classes, preferred to just hang around on the patio, smoke and let their kids run loose. Possible they had been in such bad situations they simply didn't have any energy left to think about the future. They didn't have any structure in their lives. They could only stay in the shelter a specific amount of time - due to limited space, then had to move to one of the shelter apartments, look for a job and become more self-reliant. Note, they had plenty of support and encouragement from day 1. During the time I worked there I only saw a couple that successfully made the transition. I wondered if it was their own upbringing/personality that got them into their situation or if the situation they found themselves in completely wiped out any initiative they had.
Had to quit when dh required more care....it did have the same type of feeling, although it wasn't as personal, you gave all you could knowing there was a slim chance it was going to make a whole lot of difference.
PS: yes, I know the inmates had something to gain by taking the classes, but they did have to maintain a certain standard of behavior before they were allowed to register and during classes. Even if it was just something to do they were involved. The walls were glass and although I never needed it, I only had to raise my hand and the guard on duty would immediately intervene.
That was the difference I saw with the battered women, they simply didn't care about anything, even if just for something to do to fill the day, maybe knowing they were safe for awhile was enough. Very few ever expressed optimism about the future. Think that sometimes sounds like me :)
Again OT: Many years ago I belonged to an art group & when you travelled, you just let people know when and where you were going and other members, other states even overseas, offered you a place to stay. Kind of a B&B before they were popular. Was a great way to meet people and save money. Not sure that would work for us but could be a thought. I know one couple traveling overseas, his wife had a heart attack and had to be hospitalized. He posted to the group and someone contacted him, offered their home and whatever was needed till she was able to travel back to the states. I wonder if the world has changed so much that we might not feel as safe doing that now?
I was thinking of an umbrella insurance policy. I doubt that a workman's comp coverage would cover them if they got hurt. I think an umbrella policy is just a good idea anyway. You never know if someone visiting might trip and hurt themselves, it protects both of you. I carry $1 million in umbrella insurance.
We used to carry an umbrella but I'd have to look. When we bought this place, it seems like our policy may have changed in some ways, one was our deductible - a percentage rather than a flat deductible.
Whatever belief system we have, there's only one way to see the accelerating decriptude morons call 'the golden years'. Having made us, it's fairly universally believed we're meant to live our lives. When we're in the same league as Methuselah, seeing a bright future for ourselves is a mug's game. The only option is having the courage to face it and bravely go to certain death. That's why we have a middle finger, which doesn't actually have specific uses in life, except in the universal gesture that signifies "up your nose with a rubber hose" or some equally toned down euphemism.
The sensible way to approach old age would be to run away screaming. Most people can't keep that up except in short bursts. If fact, once you've joined the club, it's quite likely that running isn't your biggest strength. Neither is fighting when most of your bulging bicepts now hang below your arms in one of the rewards of getting here, known in non technical terms as flab. Buying an Uzi isn't going to help either given that time dodges bullets in ways that Superman only dreams about.
I'm overstocked in perfect examples. Take Grumpy Old Men, the movie that came out in 1993. I was 43 and when Jack Lemmon had the heart attack and ended up marrying Ann Margaret, I didn't spend one second thinking about old age. I was busy realizing Jack Lemmon was looking for love, while Walter Matthau was looking for a warm body. He was fine in the end going to the VFW, telling his son not to wait up because he may get lucky.
Not now. Now I see things from the perspective of having a heart attack in the snow (like Jack Lemmon did in the movie) and what it's like to have prospects that in years you can probably count on your fingers. I'm almost seventy and dad died when he was 76 while mom lived to the ripe old age of eighty. I don't even have time to get to know somebody new and build up a meaningful relationship. Going into an old age home was always grotesque; now it's deadly too. The fun never stops.
I used to think old people didn't tell what the golden years are really like. Now I know they do tell, but the world is studiously not listening. That's the right thing too. Who wants to know this? Not most of my friends who range from pleading me not to talk about it, to getting angry and upset when I mention it. Only my sister and one friend seem inclined to include our age into the things we talk about.
I may as well have gotten a letter recently in the mail from The Big Lebowski saying "Congratulations on getting through the tangled mess of Alzheimer's. Here's old age. Dodge that." Wonderful. Thanks very much. I'm not even going to bother God because I'm pretty sure he would shrug and say, "Look what I have to work with. I make dust dance and look at the reviews I get."
That's what I get from all this. Suck it up monkey boy. Go where absolutely everyone ahead of you has gone before and try to keep the complaining and self pity down to a dull roar. I'm driving up to Waterloo tonight and picking up what is the equivelant of a dinner for seven. That's my standard order and I eat that by myself over three evenings. Then I fall asleep in front of the TV watching what I picked from about 250 channels. I could use a little of the courage everybody else seems to have. All I have is this middle digit and the universal salute that says how pleased I am to be on this poorly thought out rock. Ce la vie.
Be kind to yourself Wolf. Even the old can have fun. I remember my husband's uncle tell about the fun he had being single in a seniors mobile home park in Florida - the women always bringing him meals. Then there is George here who is in his late 90s still enjoying his life in a senior community.
I know the thinking about age. When my brother died a few months short of 80, I thought to my mom who died a few months short of her 80th and my sister who died a few months short of her 80th. At this rate I might have 10-12 years tops left. My dad had a stroke at 81, died at 84. Depending on how long Art goes on will depend on what the future might hold.
Ever notice how old men always get courted by casseroles and pies but who ever hears of anyone bringing food to old women? I'm older than both of you and if I make it another 5 yrs I'll be more surprised than anyone -- and I'm the one who comes from a family who only a few make it to 70 and a few a little past. now here I am still hanging around with nothing to do but thinking of using my middle finger to the world. Never thought I'd live past 70, maybe 71 and good chance of having AD when I went. Now, i'm almost 78 and it's my brilliant husband who has AD. T'aint fair.
This thread has been the record of my own journey through afterwards and into my life. It was completed somewhere in the fifth year and took months more to sink in and fully realize. It's quite accurate to say it took me five years to walk from the depths of despair to the normal schmuck I've always been without any qualifications.
I am and am not the same person. I'm me, but there is a quite real fifteen year gap where part of this journey was discovering and coming to terms with how many years were lost. They weren't lost because I know where they went, but they weren't lived either - they were survived - and only by me.
All experience, from birth, is a cleaver. When experience cuts into our reality, it always has at least two sides. There are numerous ways we react to what happens because there are numerous aspects to most things. It's my opinion that what we call reality isn't as important as how we respond to it.
I recorded how I was going to respond months before my wife passed in the fall of 2014 on the Widow's thread. I held to that the entire time without missing an instant. Alzheimer's pissed me off with it's brutality and with what a wreckage it turned me into. I was not going down - I was coming out. Lots of people don't become the mess I became. Good for them sincerely. I wasn't one of them. I went into a deep hole and there was no alternative for me but to try and climb out.
I need to describe what that means to make sense. I was nearly catatonic. I felt serious anxiety being around anyone. I never looked up or around. I had a tiny little world I desperately stayed in, while everything that happened was a serious threat. There wasn't a safe haven or a place to relax anywhere. Even my dreams were like that.
None of that has existed for some time. I'm active. I talk people's ears off. I'm always looking and wondering. I'm consciously expanding my world. I feel love for my cats. I deal with things as they come up. I haven't felt anxiety in well over a year. I'm at peace with my life, with my wife, with Alzheimer's, with the friends who couldn't face it, and with the time it cost me. Having a better life is up to me just as it's always been.
During these five years I've learned to live with myself. There was only me here and motivation was high. Necessity is the mother of invention they say, and I've lived the truth of that in very fundamental ways. I used to think I was struggling through life. Afterwards taught me I was struggling with myself. I learned step by step how true that was.
The most valuable lesson I may have learned is that it only seems to matter how much we want something. What actually matters is how much we work at it. Wanting something is a dreamy kind of wishing. Working at something is the only proof of seriousness.
There were other aspects. I never accepted that time as being me. I always saw myself as needing repair from a dysfunctional state. Somewhere in there was grieving which I think is strewn over several years. I was an abused animal who shivered mostly and avoided being touched. That was made so obvious by my non-life, even I could see it.
Never give up hope they say, but hope would have been a torture to live with back then and I was much better off with none. That's not my nature anyway. I'm not the flashy, heroic type that arrives on the scene; I'm the guy that just never seems to quit, no matter how fumbly or bumbly I seem to be doing.
Not quitting meant turning Alzheimer's into dust. It meant turning my wife into the peace and love that were the truth. It meant making peace with all of it and everyone in it, including myself. It meant letting go of that time in the same way I let go of high school and having my parents around. It meant learning to own my time and own myself in it. It still means learning how to have a great time.
I'm not just older. I learned many things from this. All of them boring to anyone else. Human beings quite reliably move towards what they work at. Becoming a caregiver should be sufficient information to prove that. To work at something though, we have to conceptualize that the issue exists. When we live those two things, change is unstoppable.