Mental Decline & Dependency/Coping With Aging Loved Ones

Phoenix--

Sorry this is late. I somehow lost updates on this thread.

You owe SS nothing. The "December" check arrived in January and came with all Medicare benefits paid out in January.

I just went through this mess with one of Mr. Noddy's fringes. The language in the fine print is such as to confound all honest, educated women.

Phoenix, my deepest sympathies for your loss. I also sympathize with your trouble with SS. We must have bureaucracies; everything else is worse. But in the case of my wife's problems where I spent days going through records to document a claim to SS and then having them totally ignore it--no response from them at all--We've just given up. Last year they requested, again, a refund from my wife (or another documented response from us). We simply told them that because they ignored our last response, we prefer that they take the amount requested out of my wife's future SS payments; that's how frustrated we are.
And I can't imagine going through that at the time of your loss.
This too shall pass.
Love, JLN

Phoenix, my deepest sympathies for your loss. I also sympathize with your trouble with SS. We must have bureaucracies; everything else is worse. But in the case of my wife's problems where I spent days going through records to document a claim to SS and then having them totally ignore it--no response from them at all--We've just given up. Last year they requested, again, a refund from my wife (or another documented response from us). We simply told them that because they ignored our last response, we prefer that they take the amount requested out of my wife's future SS payments; that's how frustrated we are.
And I can't imagine going through that at the time of your loss.
This too shall pass.
Love, JLN

J.L & Noddy- Thanks. I seem to have found a person at SS who actually seemed to know something, and told me basically what the two of you did.

It is so strange, the reactions that linger. When I would come home, and my phone was flashing that I had a message, I would immediately tighten up, and think to myself, "I wonder what crises is happening now". I am still tightening.

The papers all have ads for different Medicare plans, as now is the time that you can switch. Every year I would have to think through about whether I needed to switch my mom's coverage, on account of financial concerns. I still find myself looking at the ads, although it is no longer an issue for me. (I have had the same coverage since I went on Medicare, and unless something very unusual happens, I have no intention of switching, ever!)

One of my biggest concerns was that my mother would outlive her money, and end up in some Medicaid nursing home. I was a frugal as possible with her funds. I also, when I could, stashed away some cash for her, in case she ever had to go on Medicaid. In that way, they would not take all her money and leave her little for personal needs. When the ALF refunded her petty cash account, my first thought was to squirrel it away. Then I realized that I no longer had to, It is very strange.

I have had her cremated. I figure that sometime in the warmer weather, I will arrange to go up north, and have the urn buried. She already has a double headstone installed, with my father. It is just a matter of engraving it. The urn that I selected is all HER, lightness and flowers, and quite classy. It is something that she would have liked. I have it sitting on my dresser, and I will find myself talking to it.

It is all still very strange to me. It is a bit disorienting when there has been a strong focus in your life, and all of a sudden it is pfffft......................gone.

All the very best, again, Phoenix .... for finding now back to yourself.

Mother's dementia became worse; additionally, she became more seriously depressed .... might well be, because walking now is even less possible.

Which didn't make "our job" easier.

Well, the depression went away (as far as such is possible).
Somehow, she accepts that she can't go to church regularily anymore (that was one of her highlights).

We've tried everything possible to get her friend with a wheelchair - doctors nurses, therapist, the cleaning woman, everyone makes it their topic: she's just deaf on that ear.

But she still wants to have her "Twiggy-figure": it's very difficult for us to keep her on weight (BMI of 18.5).

Finally, I'm now trying to get her to a higher level in the (compulsory) nursing care insurance: until now, she pays about $750 herself, the insurance pays the other $490.
If the exermination is favourable, she pays nothing or perhaps a couple of Euros only herself.

Walter- I saw my mother slide from simply lousy short term memory into frank dementia. I learned one thing. As my mother could do less and less, she was more comfortable in as simple a world as possible.

Too much stimulation would confuse her. Nagging her about getting out of that same damn shirt that she wore constantly, was a battle that I fought, until I realized that all I was doing was upsetting her. So, as long as the shirt did not stand in the corner by itself, I ceased to talk to her about it.

As far as friends go, I found that over the last few years, my mom's interactions with other residents of the ALF decreased. Again, I attempted to encourage her to socialize more..........but to no avail.

I think that people know instinctively what is good for them, and that it is futile for relatives to attempt to mold them into what they think is right. The only exception would be where health and safety are concerned.

working with alzheimers patients, I have tried time and time again to explain that to people. Most of the time, I received a slap in the face ( not literally! )

It is odd to watch someone with that disease. Or any version there of.

They are who you THINK they are... they are just not who THEY think they are.

I wish that I could just tell you , something simple that would make it all fall into place. Reassure you that you did a fabulous job as a daughter , and as a Mother figure to her. But I think you know that.


I just hope that when the day comes for you that you can feel relief from the stress with out guilt, it is loud and clear . And that it will make you feel free and whole again.

Thanks, shewolfnm-

I am confident that I did all that was humanly possible for her. I think that one of the things that I have learned from this is that it is futile to overlay your expectations on another person. For an Alzheimer's patient, it is all the more frustrating.

I think that the scenario that Walter described, is probably one of the saddest times in the life of the patient. She knows that there is something wrong, but is incapable of doing anything about it. Once the dementia becomes more profound, there is a kind of acceptance.

When I first realized that my mother had Alzheimer's (for years I had attributed her memory problems to normal aging, or possibly a bit of vascular dementia) I knew very little about the illness. I found a wonderful book, that helped me in the beginning:

Link

I also checked out the Alzheimer's Association website, and found the chart of "Stages of Alzheimer's".

http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp

I found that helpful, too. I know that some people don't like labels, but it allowed me to get a handle on what was happening, and what to expect. Actually, at her death, which was caused by CHF, she was probably at stage 5, with the beginning features of stage 6.

Phoenix--

My mother died eleven years ago and I'm still thinking of things that I must remember to tell her.

A part of grieving is making new routines that do not involve the formerly living.

As for filial guilt, I'm fairly certain that your mother (in her Hearts & Flowers Urn) looks/ed at her children and decides/d they are/were both swans. Your mother didn't believe she could hatch an Ugly Duck. Mother of Ugly Duck was not part of her self image.

It seems to me that the Golden Rule may not always apply to the way we should treat people suffering from dementia or end-of-life frailty, as in hospice care. We must take care not to assume more similarity between them and us than there in fact is. I recall the tendency to treat my brain-damaged wife as if she were the way I hoped she was. Eventually I came to define her situation is ways suggested by HER behavior, not by MY wishes. I came to realize that the most (perhaps only) important thing for her was physical comfort. Noone wants their loved ones to "descend" to such an animalic state of being. But if you want to benefit them--on their terms--you have to face up to the fact that the are not like you any longer and that you must treat them not as you would have them treat you; they are different.

It seems to me that the Golden Rule may not always apply to the way we should treat people suffering from dementia or end-of-life frailty, as in hospice care. We must take care not to assume more similarity between them and us than there in fact is. I recall the tendency to treat my brain-damaged wife as if she were the way I hoped she was. Eventually I came to define her situation is ways suggested by HER behavior, not by MY wishes. I came to realize that the most (perhaps only) important thing for her was physical comfort. Noone wants their loved ones to "descend" to such an animalic state of being. But if you want to benefit them--on their terms--you have to face up to the fact that the are not like you any longer and that you must treat them not as you would have them treat you; they are different.

JL- I think that you have come up with an important point. People tend to think of others in terms of their own particular frame of reference. In addition, there is always that little devil "denial" that tends to hang us up.

I can remember, when I was working in mental health, when I had a conference with the father of a severely schizophrenic girl. He started to go on and on about how he wished that she would straighten out, and cut out the "nonsense", as if she were merely playing a game, and was not really severely mentally ill.

At the time, I thought to myself how ridiculous this man was. Now I realize that his attitude was not so much different than expecting my mother to behave in ways of which she was incapable.

I smiled when I read about her urn. You will always be her daughter, Phoenix, it's fitting that you still talk to her.

One of the strangest things for me when my mother died was the realization that I was now an orphan - part of the oldest surviving generation. No matter how old one is when they become orphaned (beyond the age of being able to support themselves, that is) it is a bit disorienting and strange.

You've been focussed on her care for a long time. It will take awhile before you stop thinking in those terms as a first response. The time will come when you breathe normally at the message light and stop looking at Medicare ads. Those thoughts will be replaced by other memories, the ones when you mother was who she was before her disease took over.

Walter, I'm sorry you mother is doing poorly again. I agree with those who have said that the patient has a natural tendency to understand what is best for them.

Best wishes to you both.

JPB- What really freaked me out, was the realization that now, I was the matriarch in the family.

Generally, and I fully agree.

The problem with my mother, however, is that she only could start and try to live the live she wanted for couple of the years - after the death of my father until her stroke.
That has been for four, perhaps five years.
And it only reached a point where you usually would say: now you've explored somethings, start it!

So, she always wants to act and react as if it was in those days ...

-----------


I really do hope, she'll "get promoted" to the next level.
Not only that she then doesn't have to spend so much money for nusing from her own - we would have a bit more to "refill" the wholes due her "loosing" money, forgetting where it is ...


------------

Thanks for the good wishes. (And I do need them, being still a one-man-team until next Sunday :wink: )

Tomkitten--

From a story in the morning newspapers:

www.forthefit.com

Half the men in the States are 5'9" or under--and these people want to sell them clothes.

Damn...........My girlfriend's husband is dying of a rather rare cancer. She wanted him to stay at home, and be cared for by Hospice. Hospice won't accept him as a patient, because he needs a certain amount of oxygen to breathe, and in his condition, requires more than their guidelines allow.

So he is dying in a hospital, and not the one that is near her home. That hospital does not have the facilities to take care of him. I don't know if I want to cry or scream, it is so frustrating.

That's really a bad news.


(I'm always confused with the different purpose of hospices: here, they are institutions exactly for such: to give people a decent and human place to die in peace.)

Phoenix--

What a sad story. Is there no resident hospice facility in the area that could accommodate him? This is not Death with Dignity.