I'm having an Existential Crisis!

[afaceinthecrowd]

I'm a tad bit reticent to wade in here.

First of all, thank you WildKat for the guilelessly open, deeply honest and intensely thought provoking OP.

There is sooo much humanity, heart and truth in all the replies that stir me but I am too lazy and tired to directly quote and respond to them with my thoughts or comments.

Three times in my life I have been present and watched someone born, draw first breath and the color of Life alight their face.

Three times in my life I have been present and watched someone pass, draw last breath and the color of Life fade from their face.

I have spent far too much of my life taking for granted the Gift of Life without gratitude for each breath taken or thankful for every measured beat of the heart.

I have watched despondently the end of the impenetrable mask of Alzheimer's and Stroke, the helpless inevitability of Leukemia and the hopeless prognosis of Post Op Respiratory Arrest and Coma.

I've bathed and changed the diapers of an 87 year old WWII Vet and done my best to assuage his frustration and embarrassment.

I've carried my dying 66 year old brother to the bathroom and done my best to make it a funny thing that I, his "punk" kid brother, could finally lift him.

There are countless Saints and Angels that walk amongst Us...The caregivers for a multitude of others that day in/day out with kindness, respect and competence care for others that someday I will most likely be one of.

There is no doubt that I am vain, human and came into this Life helpless and will leave this Life helpless.

All of Us want and deserve Dignity at Death. But, Dignity at Death is, ultimately, not under our individual control.

All of Us have only one thing that is under our individual control...Dignity in Life.

Express your wishes and make your directions for your coming demise known. Cremation or burial; funeral or no funeral; resuscitation or not; feeding tube or not; invasive last hope surgery or not...on and on and on. You can make those decisions now, "cast them in stone" and relieve yourself of unnecessary worry.

Express your Love, Gratitude and Importance to all who's presence has blessed your Life now...Don't wait, don't be guarded, don't be afraid.

I dread having a painful of Death. I was on death's doorstep several times. I have felt severe Prior to and Post Op pain and, to be honest, live with chronic pain and will for the rest of this life.

I dread the prospect of ever again experiencing the all consuming intensity of piercing, searing, withering pain I have been through before.

But, one thing I have learned is this...Pain is like a wave on the beach and it builds and builds as you desperately, fearfully and exhaustively fight to get through what you cannot stop.

But, then the wave crests and you glide, slide and are carried peacefully down the backside of the wave.

Death could be that way...Perhaps not...I don't have a F'n clue.

Death for me and thee will surely come...tomorrow, next year, twenty years...WTFK's.

My Life has been blessed with four wonderful children and fortunately I have a little dough. However, that doesn't predictably make my Life's end any "better" than anyone elses.

My Life will end how it ends when it ends and I can and should plan, think about and prepare for however and whenever it happens but LIVE knowing that either I accept the unknown moments of joy and gifts surely yet to come or live in the fallacious misery of maybe someday dying a miserable ending to a meaningless life.

I'm afraid I've gone too far into my Head and my Heart with this Post. There are many, many options, avenues and pragmatic steps that can be taken at any point in ones life to plan for their--as best it can be--final days and demise. Much very sound and good advice has already been given here.

I'm afraid to say this but, based on my approaching 7 decades, some of Murphy's Laws apply here: "If anything can go wrong, it will; In nature, nothing is ever right. Therefore, if everything is going right ... something is wrong; Being dead right, won't make you any less dead".

The most frustrating thing to me about having brain damage is that the damage is not severe enough that I can't remember what it was like to be able to do, deal with and solve all the the things I can't anymore.

The most frustrating thing for me about being with, trying to help and caring for loved ones that are in their final days is knowing that they feel and live with that same frustration and there isn't a damn thing I can do about it.

Face

 

[JustSheila]

Help! I'm having an Existential Crisis!*

My mother, age 83, was recently put into a "memory care" facility, which is basically a nursing home for crazy old people. I just spent 3 days trying to help my sister go through her house, which was also the house I grew up in. It was filled ceiling to floor with endless piles and closets of “stuff"... She also smoked 2 packs a day inside the house and fed a dozen stray cats.

The existential crisis is this: What did she do to end up like this? Is this just what happens to old people who live too long? Is it genetic and will it happen to me if I live long enough? Or is this only the lot of old people who have no close family connections? Am I responsible? Is my sister responsible? Or is my mother responsible for the alienation of her children?

My sister and I had a pact: I would see to Dad’s affairs, and she would see to Mom’s.

I stepped in to take care of my father last year when he got elderly (86) and could no longer drive or take care of himself. And it was a gut-wrenching experience to go through. There is a gray area where an elderly person can take care of themselves one day, but seems less able the next, and back and forth like that for some time. He is now in a facility and is well taken care of. He’s depressed though, and has stated he would rather be dead. And I understand that.

My mom is now also in a different facility, and will be taken care of, but she too, is not happy about it.

And for the last several years she has not even remembered who I am. When I saw her this week, she called me by another name. I’m sure the years I spent in Scientology focusing on “saving the planet” and ignoring family had something to do with it. But I don’t ever remember being close to her, even before Scientology.
*Existential Crisis http://en.wikipedia.org/wiki/Existential_crisis

I work with the elderly for a living, so have special training on dementia and other things affecting the elderly.

Dementia has a lot to do with heredity, but also environment/habits. It's about 50/50. You mother being a smoker means less oxygen to the brain. Even if she never had cancer or anything like that, the lack of oxygen from smoking, plus second-hand smoke would certainly have a negative effect on brain functioning. Low blood pressure also means less oxygen to the brain and a person with low blood pressure, or low blood sugar (Diabetes) can act pretty wooden or dumb if it's not addressed and handled properly. Exercise is important, too, for proper system functioning and blood flow to the brain and organs. All of these and everything else you know about basic healthy living do a lot to help a person stay physically and mentally healthy, but it's still no guarantee.

I'm pretty against nursing homes unless it's absolutely necessary. I've worked in them - good ones - and it's not an ideal environment, though it certainly sounds better than the environment she was in. Still, home care is the best if the person isn't too far gone or too sick and if there is any way you could swing it for her without the stupid boyfriend person coming around.

Dementia is not 24/7 - the memory comes and goes. Sometimes someone with dementia remembers everything, sometimes they're just in another world altogether. Some remember people and things more recent, some remember people and things from the past. There's no real rules for it, but I've observed that when a person is anxious or depressed, the dementia is at its worst. The best way to deal with it is just go with the flow and don't take it personally. Forget about trying to bring back the mother you knew, and just accept whoever or however she is when you see her. If she's talking about a birthday party 20 years ago, be a participant. If she always hated cheesecake and suddenly loves it, that's okay too! The only real rule is to be good to the person, don't talk about them in front of them, don't talk to them like they are children, but treat them with dignity and as if they are just FINE. It is the true test of love, of accepting a person exactly as they are, how they are, with all the faults, physical and mental, but if you do that, you will have peace of mind and will be good company for your mother and make her happy, too.

On the plus side, it's usually pretty easy to make an elderly person with dementia happy. They expect so little and are so appreciative.

Keep her relaxed, keep her happy. There will be days and times she remembers you, but don't try to force it or make it happen because that just causes stress to both of you and the only thing you really can do to help is keep any stress to a minimum and be completely in the present with her. NOTHING else helps, I promise you (other than general healthy things... there is no miracle cure, though, and dementia cycles downward no matter what.) You could have keepsakes and personal things, pictures and such, around to help trigger her memory, but if they upset her because she can't remember and wants to do so, then do what she wishes to keep her calm and happy and remove what may upset her.

It's not as bad as you think. Like I said, most dementia people are pretty easy to please and most are pretty happy. It's the family that feels all twisted about it because they have expectations of memories that just aren't there anymore. Enjoy her for who she is now, be adaptable and ready for change at every visit and just be with her and make her happy. Forget any serious conversations about anything - what's done or not done in the past is over. Messy or not, it cannot be repaired. All you can do now is be the best child a mother ever had.

ADDED: Hoarding things isn't uncommon amongst the elderly and isn't necessarily a red flag. Many find cleaning to be exhausting - everything takes a lot longer when you get old, and energy is limited. I have clients who are exhausted just from getting up, getting showered and getting dressed. The lack of oxygen from smoking also means a lot less energy. She will feel much more energetic once the nursing home gets her off the cigarettes, or at least substantially cut back (and they will).

ADDED AGAIN: If your father is that depressed, WHY hasn't the facility put him on antidepressants? You should look into this. They make a world of difference.

 

[sallydannce]

Thank you for this heart-felt thread.

I've had a long day and need to get some sleep but I just wanted to share an article about a book called The Top 5 Regrets of the Dying by Bronnie Ware.

I am currently reading the book and it is well worth reading. She writes with clarity, warmth and humour about something we often find so difficult to discuss.

http://www.huffingtonpost.com/bronnie-ware/top-5-regrets-of-the-dyin_b_1220965.html

 

[Lone Star]

Yes I have thought about all of this too. I am currently taking care of one of my parents. One day of course it'll get to the point when I cannot do it myself and then it'll be off to a nursing home for dear old..... It will suck, but it is what it is. You're born wearing diapers, and then you probably will die wearing diapers if you are "blessed" with a long life. The joke's on us.

Personally I most certainly do not have the desire to "live as long as possible". Not even in the least bit do I want a long life. People think I'm kidding when I say that, but I am most assuredly not kidding. I don't want to live past 60. Sixty goddamn trips around the sun is plenty. If I'm still alive at 65, well, then I'll probably take matters into my own hands. Fuck growing old. I'm still technically middle aged but already feel like shit much of the time. I know it'll only get worse with each passing year. I've seen it time and time again with others. And I do eat healthily and exercise, don't drink too much, don't smoke, yada, yada, fucking yada.... I probably should just "do everything wrong". Might as well.


Life is truly absurd. Camus was right.


Yes, I am the eternal pessimist.







* Note: BTW, I'm not actually new here to ESMB. I am a sock puppet. Yes, that's right. Having difficulty logging in with my usual ID. It's not my purpose to cause trouble by saying things as a sock that I wouldn't ordinarily say as "myself". In fact my sock puppet is nicer than the real me. (Split valence, party of one...or is that two?). I guess I should reveal myself. Nah. I said I was nice, but that doesn't mean that I'm open and forthright too. What am I supposed to be, a perfect little Boy Scout?

:wink2:

Wow! Did I say all of that? LOL.. I was having one of those days yesterday in which I kept focusing on "everything that sucks." I have about one or two of those per week.

When I'm thinking rationally I of course want to live to be at least 90. Oh yeah! And diapers? No big deal really. In fact I put one on last night, slept with it, and am still wearing it. It's great! Very convenient. Now to just get someone to change it for me.....

I mentioned Camus. Oh what did he know? I mean really! It's too bad he never got to process up through the Grades, or do the Ls. LOL....

Great thread, all kidding aside. I've appreciated every post so far.



* Note: BTW, I'm not actually new here to ESMB. I am a sock puppet. Yes, that's right. Having difficulty logging in with my usual ID. It's not my purpose to cause trouble by saying things as a sock that I wouldn't ordinarily say as "myself". In fact my sock puppet is nicer than the real me. (Split valence, party of one...or is that two?). I guess I should reveal myself. Nah. I said I was nice, but that doesn't mean that I'm open and forthright too. What am I supposed to be, a perfect little Boy Scout?

:wink2:

 

[Lurker5]

Help! I'm having an Existential Crisis!*

My mother, age 83, was recently put into a "memory care" facility, which is basically a nursing home for crazy old people. I just spent 3 days trying to help my sister go through her house, which was also the house I grew up in. It was filled ceiling to floor with endless piles and closets of “stuff” - old magazines, broken electronics, books, trash, jars with coins, important papers, memorabilia, collectibles, valuables mixed in with the trash…. NOTHING was ever thrown away.

She did not live alone, she had a younger “boyfriend” who seemed capable and lived with her and so we thought she was OK and well taken care of, but she wasn’t. My sister and I live far away in different states. The house smelled of old cigarettes, trash, and rotting carpets, drapes and furniture.They had become hoarders and buying addicts, and apparently could not throw anything out, or clean anything. She also smoked 2 packs a day inside the house and fed a dozen stray cats.

The existential crisis is this: What did she do to end up like this? Is this just what happens to old people who live too long? Is it genetic and will it happen to me if I live long enough? Or is this only the lot of old people who have no close family connections? Am I responsible? Is my sister responsible? Or is my mother responsible for the alienation of her children?

My sister and I had a pact: I would see to Dad’s affairs, and she would see to Mom’s.

I stepped in to take care of my father last year when he got elderly (86) and could no longer drive or take care of himself. And it was a gut-wrenching experience to go through. There is a gray area where an elderly person can take care of themselves one day, but seems less able the next, and back and forth like that for some time. He is now in a facility and is well taken care of. He’s depressed though, and has stated he would rather be dead. And I understand that.

My mom is now also in a different facility, and will be taken care of, but she too, is not happy about it.

And for the last several years she has not even remembered who I am. When I saw her this week, she called me by another name. I’m sure the years I spent in Scientology focusing on “saving the planet” and ignoring family had something to do with it. But I don’t ever remember being close to her, even before Scientology.

I have no children, but I have a mate, and he and I have one fear: When we are old, there will be no one to step in and take care of us. We have each other, and that’s it.

Is anyone else in this boat? I mean, getting older, no children, no plan for old age. We would not be able to afford an assisted living facility or nursing home. We both feel that life would not hold a lot of pleasure even if we did make it into our eighties and could afford the care.

How many people who swore they would rather die than go into a nursing home, are now in one? Or in need of one, but have no plans or money for it, and are just rotting away alone in a home with no one to help them? And their death will be signaled only by the neighbors reporting "a bad smell".

Why do so many people have the desire “to live as long as possible”?

I guess in a perfect universe, there would be happy families with children and grandma and grandpa all living in one house, like the old 70's TV show The Waltons, where everyone would take care of everyone. And no one would have to live in nursing homes being kept alive as long as possible only because they have Medicare.

If you have no children and no great wealth, what are your options? Drink the Hemlock when you turn 80?

I’m serious, does anyone else have these issues? It's freaking me out a bit, and I'm only in my 50's.

*Existential Crisis http://en.wikipedia.org/wiki/Existential_crisis

I am going through all this myself, with my parents, and thinking on my own old age. I don't want to live that long, and end up like that. A friend recommended and I started reading the 'Grain Brain' book, by Dr David Perlmutter. Interesting for sure. Very difficult though . . . . And still, there are no guarantees - and I don't want to end up like that.

Someone I know, just 60, died soon after her mate, and within 2 weeks of being put into a hospice, not because she was ill, but because there was no other public housing available at the time. She wasn't really able to care for self - alone. Just mentally not able. Her mate took care of her until he died, then she just followed. Maybe she is the lucky one here.

Most of my friends my age no longer have memories going back to when we were close/good friends. They don't REMEMBER it. My memory isn't the best anymore, due to some health issues and aging, but it is better than most people I know. WTF?

I see my parents, and what has happened to them, and I am very concerned. Don't know if you all know this, but USA's Medicare drops the person if they are no longer 'getting better'. So does private insurance. Then if the person has nothing, they end up on Medicaid. If there are assets, those will be sucked dry until nothing is left, then they go on Medicaid. Old people can live forever with good medical care - and assisted living and nursing care costs anywhere from $60,000 to $200,000 per year. It doesn't take long to exhaust assets. Many old age homes kick out residents who end up on Medicaid.

I see this debacle of the VA and vets dying, and I wonder, is this what Obamacare will be like in a decade or two? Will it even take that long? OR am I better off because of Obamacare? It didn't fix the kicking old folks off of Medicare and private insurance when they are deemed no longer getting better . . . . I have had people in the know tell me that Obamacare is making it better. But I am having a hard time seeing it.

It is all about money folks. I see these homeless people, talk with them, and I gather they are not older than me, probably younger, though they look older, and they seem to be happy, but they also all display obvious health problems. I assume these will kill them, sooner rather than later, as their health care is awful - if they even have it. Many are vets . . . and I have heard them say they are waiting for their treatment. Holy shit. What has happened to the USA? Was it always like this? Was I just young and not paying attention to the old - ? - Until it hit home with my own parents - and me ???

That seems to bring it home to us, when it hits us smack in the face. When we have to deal with it, with our parents, or ourselves. I am horrified.

I don't want to end up like that. I'd rather be dead - than mentally and/or physically unable to care for myself. OR be so poor I have no place to live. That is coming my way, I think, faster than I want to realize . . . . So I keep trying to stay on this Grain Brain diet. Oh dear - gotta laugh at it all - 'causing crying don't help.

 

[phenomanon]

Yes, am trying to lighten up. I know it will get better, it was just so fricken depressing!
But answer me this, Dude,
How does "thinking 110" and the idea of "letting go" jive? Sounds like holding on as long as possible.
But if you are healthy and sane, live as long as you want.

110 just seems like "the new 80" to me.
I am healthy and sane enuff. The things that make me unhappy are poverty and wars and what Mankind does to his planet. Most of which are out of my control. That my Daughter disconnected from me also causes me unhappiness.
"Letting Go" seems to me to be the next step in the adventure. My affairs here are in order.
If I become 'sick' , or lose the ability to care of myself, I will end my life. I've been there before as a result of a depression so deep that I thought that my children and all else would fare better without me.
I took Seconal and drank Scotch until I went unconscious. A ( then) friend found me, took me to ER and they pumped my stomach. When I awoke the next morning I was pissed off that they had saved my worthless life.
I'm thinking that's where you are about now, and I feel for you. But I'll tell you that blame, shame, and regret are destructive emotions, and you need to get thru them. Doing work with your hands is a good way. Paint a room. De-kluge your place. Get a friend to work with you if you can. When you are alone, it's easy to start thinking and rummaging thru everything you have done or didn't do /or what you 'should have done' and 'what you are supposed to do'.
Stay busy and keep your attention focussed on something outside yourself and your situation.

 

[WildKat]

110 just seems like "the new 80" to me.
I am healthy and sane enuff. The things that make me unhappy are poverty and wars and what Mankind does to his planet. Most of which are out of my control. That my Daughter disconnected from me also causes me unhappiness.
"Letting Go" seems to me to be the next step in the adventure. My affairs here are in order.
If I become 'sick' , or lose the ability to care of myself, I will end my life. I've been there before as a result of a depression so deep that I thought that my children and all else would fare better without me.
I took Seconal and drank Scotch until I went unconscious. A ( then) friend found me, took me to ER and they pumped my stomach. When I awoke the next morning I was pissed off that they had saved my worthless life.
I'm thinking that's where you are about now, and I feel for you. But I'll tell you that blame, shame, and regret are destructive emotions, and you need to get thru them. Doing work with your hands is a good way. Paint a room. De-kluge your place. Get a friend to work with you if you can. When you are alone, it's easy to start thinking and rummaging thru everything you have done or didn't do /or what you 'should have done' and 'what you are supposed to do'.
Stay busy and keep your attention focussed on something outside yourself and your situation.

It's interesting that in the Cult environment, we learned to think that family was less important, and the True Believers will easily disconnect from family if they are told to, or if they think their "eternity" is at stake. This is one of the regrets I have. I did not have a good relationship with my mother to start off with (even pre-Scientology), but I think that the Cult think when I was involved, mostly in the 80's and 90's, made it "OK" for me to go out of touch with her over the years. Now that she doesn't remember me, it is futile to try to repair that. (She was never in.) Some things just cannot be repaired. But you can do what you can in the present, which is what I'm trying to do.

The issues you bring up, of trying to end life, are big issues. We can't control everything in life, and in death, it is not much different. I know people who have said they would not want to live if "such and such" happens, but years later, they are still alive, and the older they get, the less control they have. The best we can hope for is to have be at peace and be OK with whatever happens.

Family is there to help you come into a new life, and to help you leave. There's no substitute for that.

 

[F.Bullbait]

I cared for my elderly neighbor for 10 years until she died.


Some advice:


One day at a time. This old saw is the mainstay.


Evaluate the person's condition and abilities with a new set of eyes every day. This is especially important as they approach the end.


Be vigilant as to unsafe situations and strategize solutions that are acceptable to the person you are caring for.


Don't expect compliance or gratitude.


Keep their mind active, even if it is just television. Is the TV big enough?


Don't overdo the helping part. Have them care for themselves to best of their ability even if your heart tells you otherwise.


Legal documents: do this sooner rather than later. Medical Power of Attorney, General Power of Attorney, DNR ("do not resuscitate", if desired), Will, Final Arrangements (cremation, burial, etc).


Post the DNR prominently in the home by the bed, chair, kitchen, bathroom so that the paramedics know.


Stay out of hospitals as much as possible.


DO in-home hospice (end of life). It may sound like a big deal but, if you have good support from an hospice organization, it is the better solution.

 

[Lulu Belle]

I have this situation with my mother.

There are added issues and complications. She is all alone in another state. I have two sisters who both live very far away and who have no interest in getting involved or helping whatsoever. Other than that, there are no family, no friends and no resources.

Many people here have given many valuable and true insights into this problem. There's just a few things I want to say.


Not all families are the same. Not all people are the same. I would get very frustrated with my husband because his mother went into an Alzheimers ward a few years ago. He seemed to think that how his family handled it was how I should handle my mom and that I was just basically failing because I didn't strongarm her into a facility like his brother did to his mom.

Problem is, I don't have three siblings to help me. I don't have three people living in the same state as my mom like my husband did. My mom doesn't have a huge amount of long term health insurance like his mom did where she would wind up in a really nice place.

Most of all, his mother is basically very social and gregarious. Once she got into a place surrounded by people, she was OK with it. My mother is a loner and does not want to live with other people. She doesn't like people and she doesn't trust them. She has an institutional history and is pathologically afraid of being locked up.

One of the biggest issues I've run into is people's cookie cutter attitudes towards the situation. Mom has memory loss equals just talk her into leaving her house, get her into assisted living, and that's that.

Well, the truth is it doesn't actually work that way. Even if you are POA and the health care advocate, both those things rely on some degree of cooperation and agreement from the person you have the POA over. POAs were really basically designed for people who were physically incapacitated. People with dementia are a whole different kettle of fish.

If the person absolutely refuses to leave their home, and they are not legally incompetent (you'd be shocked at how low the bar is on this point) your POA is basically useless.

The only way you can override that is to take her to several neurologists, get them to sign something that says she's incapable of looking after her affairs, get her in court in front of a judge, have the judge rule in your favor and then the court appoints a guardian who takes the assets and liquidates them to pay for her care. Then they place them where they want to place them.

The process requires a lawyer, is very expensive, relies on all of the above signing things off in your favor (a doctor saying someone should be in a nursing home and being willing to sign off on taking away their rights are two different things, as I've discovered). And even if the judge decides in your favor...which is a big IF. As people have noted here, people with dementia have good days and bad days, and my mother always tends to have these kinds of interactions on her good days.

If the judge decides in your favor, if you live in a different state, the chances of you being appointed the guardian are slim to none.

I base all of the above on several years of trying to deal with this issue.

Sorry if I sound...frustrated. It's been a bitch.


A few things I have gotten out of it that have helped:

1) TGI is absolutely right about the sibling thing. If you are going to take it on, take it on. Anger and resentment towards brothers and sisters who aren't helping is pointless and it becomes an acid that just eats at you. I don't agree that they will eventually come around in my case, though. Like I said, every situation is different. But me being bitter about it, I realized, was totally counterproductive.

2) This is a problem you never actually solve. For years I looked for the day I would just fix this and it would go away. I finally came around to the fact that this isn't how it works. You cope. You just do the best you can every day. As others have said, people with dementia have good days and bad days, lucid moments and moments where they are on the moon. All you can do is do the best you can.

3) You don't have to - and you shouldn't - accept everyone else's evaluation as to what you should do. It's your family. You know what you can and can't expect from the people involved. You have to find your own solutions based on your resources, your assets and limitations and what you are able to do. Do not judge how you are handling your parent based on how someone else has handled theirs. People are well meaning but they can give you (sorry to use Scientologese here) "hidden standards" as to how "successful" you are in dealing with the situation. I have especially had this problem because of the number of strikes I have against me. A parent with no friends and no support system, living far away, no one to help, parent with trust and social issues, no money to go the legal route. If I have to listen to one more person say to me sweetly "Do you have brothers or sisters who could help?" I may wind up being charged with homicide.

4) That being said, you really need to evaluate what you CAN do. I managed to get on my mom's bank account a couple of years back and it was finally drummed into my head that as POA I could do whatever I needed to do. I'm now paying her bills and making financial decisions without her knowledge or consent. I'm spending her money they way I know it needs to be spent. That was fucking hard for me; just taking over like that. I am so not that person. But dealing with a person with dementia makes you realize you have to be someone you've never been before.


I think those who have, or have had, this problem know what I mean.

 

[JustSheila]

I cared for my elderly neighbor for 10 years until she died.


Some advice:


One day at a time. This old saw is the mainstay.


Evaluate the person's condition and abilities with a new set of eyes every day. This is especially important as they approach the end.


Be vigilant as to unsafe situations and strategize solutions that are acceptable to the person you are caring for.


Don't expect compliance or gratitude.


Keep their mind active, even if it is just television. Is the TV big enough?


Don't overdo the helping part. Have them care for themselves to best of their ability even if your heart tells you otherwise.


Legal documents: do this sooner rather than later. Medical Power of Attorney, General Power of Attorney, DNR ("do not resuscitate", if desired), Will, Final Arrangements (cremation, burial, etc).


Post the DNR prominently in the home by the bed, chair, kitchen, bathroom so that the paramedics know.


Stay out of hospitals as much as possible.


DO in-home hospice (end of life). It may sound like a big deal but, if you have good support from an hospice organization, it is the better solution.

Great advice, Bullbait.

Home care (in-home hospice) is the best, by far, for as long as it can possibly be done. Australia is way ahead here - it is affordable, available and often government subsidised. The US is still caught up in the "send them to a nursing home" thinking, but there are some home care agencies available to do the cleaning, showering, meal prep, etc. Nursing homes take people's houses and get far more than what they give. It's a crime and a rip-off with the owners getting super-rich off all these peoples' homes.

I used to think I don't want to live to be old, but I've met and cared for so many people in their 90s and even 100s that have perfectly good, happy lives and are still mentally fit, and physically well enough, that I think as long as I'm doing something useful and enjoying myself and still somewhat sharp, old age is just fine.

 

[JustSheila]

4) That being said, you really need to evaluate what you CAN do. I managed to get on my mom's bank account a couple of years back and it was finally drummed into my head that as POA I could do whatever I needed to do. I'm now paying her bills and making financial decisions without her knowledge or consent. I'm spending her money they way I know it needs to be spent. That was fucking hard for me; just taking over like that. I am so not that person. But dealing with a person with dementia makes you realize you have to be someone you've never been before.


I think those who have, or have had, this problem know what I mean.

Thanks for all the valuable advice in your post, Lulu Belle.

As for taking over finances, etc., the flipping of views to taking care of a parent that had once taken care of you is a difficult shift. Unfortunately, not every family member can be trusted to handle a parent's finances or care. Your mother is so lucky to have you. Some families hire an outside person to do this, just to keep everything fair and accountable. If there are a lot of children, they can all pitch in and hire private in-home care. Just one more solution.

 

[AnonyMary]

Help! I'm having an Existential Crisis!*

My mother, age 83, was recently put into a "memory care" facility, which is basically a nursing home for crazy old people. I just spent 3 days trying to help my sister go through her house, which was also the house I grew up in. It was filled ceiling to floor with endless piles and closets of “stuff” - old magazines, broken electronics, books, trash, jars with coins, important papers, memorabilia, collectibles, valuables mixed in with the trash…. NOTHING was ever thrown away.

She did not live alone, she had a younger “boyfriend” who seemed capable and lived with her and so we thought she was OK and well taken care of, but she wasn’t. My sister and I live far away in different states. The house smelled of old cigarettes, trash, and rotting carpets, drapes and furniture.They had become hoarders and buying addicts, and apparently could not throw anything out, or clean anything. She also smoked 2 packs a day inside the house and fed a dozen stray cats.

The existential crisis is this: What did she do to end up like this? Is this just what happens to old people who live too long? Is it genetic and will it happen to me if I live long enough? Or is this only the lot of old people who have no close family connections? Am I responsible? Is my sister responsible? Or is my mother responsible for the alienation of her children?

My sister and I had a pact: I would see to Dad’s affairs, and she would see to Mom’s.

I stepped in to take care of my father last year when he got elderly (86) and could no longer drive or take care of himself. And it was a gut-wrenching experience to go through. There is a gray area where an elderly person can take care of themselves one day, but seems less able the next, and back and forth like that for some time. He is now in a facility and is well taken care of. He’s depressed though, and has stated he would rather be dead. And I understand that.

My mom is now also in a different facility, and will be taken care of, but she too, is not happy about it.

And for the last several years she has not even remembered who I am. When I saw her this week, she called me by another name. I’m sure the years I spent in Scientology focusing on “saving the planet” and ignoring family had something to do with it. But I don’t ever remember being close to her, even before Scientology.

I have no children, but I have a mate, and he and I have one fear: When we are old, there will be no one to step in and take care of us. We have each other, and that’s it.

Is anyone else in this boat? I mean, getting older, no children, no plan for old age. We would not be able to afford an assisted living facility or nursing home. We both feel that life would not hold a lot of pleasure even if we did make it into our eighties and could afford the care.

How many people who swore they would rather die than go into a nursing home, are now in one? Or in need of one, but have no plans or money for it, and are just rotting away alone in a home with no one to help them? And their death will be signaled only by the neighbors reporting "a bad smell".

Why do so many people have the desire “to live as long as possible”?

I guess in a perfect universe, there would be happy families with children and grandma and grandpa all living in one house, like the old 70's TV show The Waltons, where everyone would take care of everyone. And no one would have to live in nursing homes being kept alive as long as possible only because they have Medicare.

If you have no children and no great wealth, what are your options? Drink the Hemlock when you turn 80?

I’m serious, does anyone else have these issues? It's freaking me out a bit, and I'm only in my 50's.

*Existential Crisis http://en.wikipedia.org/wiki/Existential_crisis

Your mom and or her boyfriend are hoarders. Hoarding is not uncommon with older people. I had a neighbor who died and it took over 6 months and many dumpster fulls for her adult children to clean out the house. Here is some information. Read the whole article and alert the facility doctor of what you found.

Compulsive hoarding

Compulsive hoarding (more accurately described as "hoarding disorder")[1] is a pattern of behavior that is characterized by the excessive acquisition of and inability or unwillingness to discard large quantities of objects that cover the living areas of the home and cause significant distress or impairment.[2] Compulsive hoarding behavior has been associated with health risks, impaired functioning, economic burden, and adverse effects on friends and family members.[3] When clinically significant enough to impair functioning, hoarding can prevent typical uses of space so as to limit activities such as cooking, cleaning, moving through the house, and sleeping. It can also be dangerous if it puts the individual or others at risk from fire, falling, poor sanitation, and other health concerns.[4]

http://en.wikipedia.org/wiki/Compulsive_hoarding

Don't take all this personally. You didn't know because you didn't see it until now.

 

[WildKat]

Thanks to everyone for all the input and helpful thoughts.

I do feel better just being able to vent and discuss the subject, which can seem so overwhelming.

Thank you, all of you!

 

[Leland]

Yes, I'm in the same boat. I too worry about it a bit.

I took care of my mother for the last 5 or 6 years of her life. She did not want to go to a nursing home....she did not want to leave her home.

So...I moved in and took care of her. She was about 93 at the time and still going strong....and driving!

I had to take her drivers license away.
I had to talk her into adult diapers.....just in case.
I cooked her meals...and cleaned for her.
I took her to many doctors appointments...
I took her to the grocery store.....she could shop there for HOURS.....she could stand in front of the novelty ice cream freezer and look at the items for sale for half and hour or longer.....
She fell down several times....

The last time she fell down....that led to her death at age 99.

She died at home...in her bed.

She drove me crazy.....but I loved my mother.

Everyone should take care of their parents...if necessary...it is the right thing to do.

 

[phenomanon]

Your mom and or her boyfriend are hoarders. Hoarding is not uncommon with older people. I had a neighbor who died and it took over 6 months and many dumpster fulls for her adult children to clean out the house. Here is some information. Read the whole article and alert the facility doctor of what you found.


http://en.wikipedia.org/wiki/Compulsive_hoarding

Don't take all this personally. You didn't know because you didn't see it until now.

Forgive me for wandering off-thread a little, but I want to tell you that if you are a Landlord and have leased your rental home out to a one who turns out to be a hoarder, you cannot give them notice to vacate, nor can you evict them, unless you are very very careful how you do it. You will have to have other reasons than hoarding. The Law says that hoarding is a mental disorder, and it is against the State laws to turn out a person who has a mental disease.
I researched it. I had leased to a hoarder.

 

[AnonyMary]

Thanks for sharing that, Leland! being a caregiver of an elderly or mentally unwell loved one is HARD! You did well by her

 

[lotus]

This thread is very much touching!

I didn't realize some are gone over their mid fifties!
I don't know why, I am always under the impression people here are younger than I
It's probably that they are still young in their mind and heart.

Anyway, I wanted to say that, you people sharing how you took or are taking care about your disable old parents, is very much good at heart.

In every message, there is emotional suffering, worried, but so much dedication, care, understanding and gentle care for them.

It prooves many care for old parents or friends even neighbours!
If we need so later on, I still believe life will bring kind people on the way, if we ask for help when it's time to do so!



Till that time comes

Omega 3
Ginko
and lecithin

Laugh
Making love
TLC
University courses
volunteer
dancing
gardening
sudoku
bridge
trekking
travelling
babysitting
crosswords
....

as one said - a cat or a dog

May be our best health partners!

 

[afaceinthecrowd]

Yes, I'm in the same boat. I too worry about it a bit.

I took care of my mother for the last 5 or 6 years of her life. She did not want to go to a nursing home....she did not want to leave her home.

So...I moved in and took care of her. She was about 93 at the time and still going strong....and driving!

I had to take her drivers license away.
I had to talk her into adult diapers.....just in case.
I cooked her meals...and cleaned for her.
I took her to many doctors appointments...
I took her to the grocery store.....she could shop there for HOURS.....she could stand in front of the novelty ice cream freezer and look at the items for sale for half and hour or longer.....
She fell down several times....

The last time she fell down....that led to her death at age 99.

She died at home...in her bed.

She drove me crazy.....but I loved my mother.

Everyone should take care of their parents...if necessary...it is the right thing to do.

 

[WildKat]

Yes, I'm in the same boat. I too worry about it a bit.

I took care of my mother for the last 5 or 6 years of her life. She did not want to go to a nursing home....she did not want to leave her home.

So...I moved in and took care of her. She was about 93 at the time and still going strong....and driving!

I had to take her drivers license away.
I had to talk her into adult diapers.....just in case.
I cooked her meals...and cleaned for her.
I took her to many doctors appointments...
I took her to the grocery store.....she could shop there for HOURS.....she could stand in front of the novelty ice cream freezer and look at the items for sale for half and hour or longer.....
She fell down several times....

The last time she fell down....that led to her death at age 99.

She died at home...in her bed.

She drove me crazy.....but I loved my mother.

Everyone should take care of their parents...if necessary...it is the right thing to do.

Wow, that is touching! That sums it up, "she drove me crazy....but I loved my mother." So sweet! Leland, were you retired by the time you went to live with her?

 

[Adam7986]

Help! I'm having an Existential Crisis!*

My mother, age 83, was recently put into a "memory care" facility, which is basically a nursing home for crazy old people. I just spent 3 days trying to help my sister go through her house, which was also the house I grew up in. It was filled ceiling to floor with endless piles and closets of “stuff” - old magazines, broken electronics, books, trash, jars with coins, important papers, memorabilia, collectibles, valuables mixed in with the trash…. NOTHING was ever thrown away.

She did not live alone, she had a younger “boyfriend” who seemed capable and lived with her and so we thought she was OK and well taken care of, but she wasn’t. My sister and I live far away in different states. The house smelled of old cigarettes, trash, and rotting carpets, drapes and furniture.They had become hoarders and buying addicts, and apparently could not throw anything out, or clean anything. She also smoked 2 packs a day inside the house and fed a dozen stray cats.

The existential crisis is this: What did she do to end up like this? Is this just what happens to old people who live too long? Is it genetic and will it happen to me if I live long enough? Or is this only the lot of old people who have no close family connections? Am I responsible? Is my sister responsible? Or is my mother responsible for the alienation of her children?

My sister and I had a pact: I would see to Dad’s affairs, and she would see to Mom’s.

I stepped in to take care of my father last year when he got elderly (86) and could no longer drive or take care of himself. And it was a gut-wrenching experience to go through. There is a gray area where an elderly person can take care of themselves one day, but seems less able the next, and back and forth like that for some time. He is now in a facility and is well taken care of. He’s depressed though, and has stated he would rather be dead. And I understand that.

My mom is now also in a different facility, and will be taken care of, but she too, is not happy about it.

And for the last several years she has not even remembered who I am. When I saw her this week, she called me by another name. I’m sure the years I spent in Scientology focusing on “saving the planet” and ignoring family had something to do with it. But I don’t ever remember being close to her, even before Scientology.

I have no children, but I have a mate, and he and I have one fear: When we are old, there will be no one to step in and take care of us. We have each other, and that’s it.

Is anyone else in this boat? I mean, getting older, no children, no plan for old age. We would not be able to afford an assisted living facility or nursing home. We both feel that life would not hold a lot of pleasure even if we did make it into our eighties and could afford the care.

How many people who swore they would rather die than go into a nursing home, are now in one? Or in need of one, but have no plans or money for it, and are just rotting away alone in a home with no one to help them? And their death will be signaled only by the neighbors reporting "a bad smell".

Why do so many people have the desire “to live as long as possible”?

I guess in a perfect universe, there would be happy families with children and grandma and grandpa all living in one house, like the old 70's TV show The Waltons, where everyone would take care of everyone. And no one would have to live in nursing homes being kept alive as long as possible only because they have Medicare.

If you have no children and no great wealth, what are your options? Drink the Hemlock when you turn 80?

I’m serious, does anyone else have these issues? It's freaking me out a bit, and I'm only in my 50's.

*Existential Crisis http://en.wikipedia.org/wiki/Existential_crisis

Oy vey you are going to give me an existential crisis.

First you should stop referring to patients with dementia and Alzheimer's "crazy old people", because, yes, you might become one one day. They aren't crazy old people, they are just aging. Some people age better than others.

There are lots and lots of tests for early onset dementia and Alzheimer's and lots of new, very effective medications. None of them are a cure by any means, but they do prolong normal life for a while.

I can't honestly say that I a whole lot about Alzheimer's and dementia and the care available, but I do know that there are lots of assisted senior living homes.

What bothers me is your question about, "why do so many people have the desire 'to live as long as possible?'" Why are you asking that? Do you want to die?

You should know that there is nothing wrong with needing help as you age. Just because you can't live independently doesn't mean you should want to die.