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my little pony
05-30-2012, 03:26 PM
i had the social worker come to the house and her spidey sense went off and she decided to go dye her hair and didnt say anything

skatesindreams
05-30-2012, 03:40 PM
Keep trying; so she can be evaluated - and both of you can get appropriate help.

barbk
05-30-2012, 04:32 PM
Hugs to all who are dealing with this. Dementia/Alzheimers is a terrible, terrible illness and so tough on family members.

My grandmother-in-law had dementia for years. . . finally got to the point where she was leaving things out on the counter & the burners on in the kitchen (as her life was organized around preparing meals for the family). Just wasn't safe; we were waiting for food poisoning or a major burn or fire. Once we got her into the nursing home (which, fortunately, we were able to do) she talked many times a day about how she "just wanted to go home." :(

For those who are still coping with this, perhaps it would be a good time to get the childproof covers for the stove controls.

And I've already had the discussion -- if I get dementia like that, please check me into a safe facility -- I don't want my spouse or kid burdened with what I've seen when someone becomes a danger (physically or emotionally) to others. :slinkaway

MLP -- Start writing up documentation. Has anyone else seen these behaviors? I hope you can get the social worker back in.

my little pony
05-30-2012, 04:46 PM
MLP -- Start writing up documentation. Has anyone else seen these behaviors? I hope you can get the social worker back in.

she calls the police non stop
i asked them for the police reports but they havent put anything in writing

skatesindreams
05-30-2012, 04:47 PM
And I've already had the discussion -- if I get dementia like that, please check me into a safe facility -- I don't want my spouse or kid burdened with what I've seen when someone becomes a danger (physically or emotionally) to others.

This!
Why should the illness destroy the lives of the people I care about, also?

ETA:

mlp, document everything she does and give the information to her doctor and the social worker.

Skate Talker
05-30-2012, 04:55 PM
Hugs to all who are dealing with this. Dementia/Alzheimers is a terrible, terrible illness and so tough on family members.

My grandmother-in-law had dementia for years. . . finally got to the point where she was leaving things out on the counter & the burners on in the kitchen (as her life was organized around preparing meals for the family). Just wasn't safe; we were waiting for food poisoning or a major burn or fire. Once we got her into the nursing home (which, fortunately, we were able to do) she talked many times a day about how she "just wanted to go home." :(

My father suffered brain damage from a ruptured cerebral aneurysm and about 13 years later, another stroke. Both caused mostly mental damage. He passed away last fall after 18 years of losing himself.

Until her passing 1 1/2 years earlier, my mother was his primary care giver though I lived with them and provided support when not at work. He needed 24/7 supervision. Right from the start, he spent most of his energy and thought processes on trying to "go home", even though he was in the same house he had lived in for 40 years. Jo Jo, undoubtedly you will hear this often after the re-location. You must do your best not to let it give you feelings of guilt. As in my father's case, home may simply mean they are having trouble recognizing even familiar things and are sure that feeling would go away if they could only get home again. For years we had trouble getting my Dad to go to bed because he was always waiting for us to take him home first. Sometimes he would tell us that home was in Thunder Bay, though he had never even lived in Ontario.

In his case the progression was very slow until his final weeks, so I understand there are many differences to your situation, but I agree that doing your best to achieve a regular schedule is very important. I firmly believe that they find comfort in that, even if they don't seem to be co-operating or understanding.

In the first few years he was still very physically capable and as he had always been a bit of a night owl, my mother would not hear him when he got up and tried to leave the house. The result was she basically didn't sleep until we got the keyed deadbolt locks put in. Just a word of caution though. Due to fire safety concerns, in some places it is not legal to have this kind of lock. You may have to try for something else that she alone cannot operate, or put on a door alarm that will instantly alert you if she attempts to leave. There are travel alarms or ones you install that work like the bing-bong ones you hear sometimes when you enter a store. We had one like that which could be set with various sounds right up to a full siren.

We were very fortunate in that the local regional health authority was gearing up with support just as we were needing it. He was able to go to day care for about 4 hours, 3 times a week, or with them providing the transport. He never wanted to go and always made my mother feel bad about insisting, but always came home all smiles and much more stimulated and with it. On days he was home he would wear us out with the effort of just trying to get him to take any physical activity. I am afraid in the end he wore us down and had his way but it was taking more of a toll, especially on my mother, than it was doing good for him. At the day programs he would join in with the others much more readily. The programs spend time also keeping them oriented to the seasons and the world around them. This was important for my father as he seemed to be unable to figure out if it was summer or winter (on the Canadian Prairies - are you kidding me), or sometimes even day or night.

Another problem as with many was hygiene. From the guy who had a shower twice a day and always kept the family waiting to go out while he decided on just the right tie, shoes, belt, etc., he became someone who needed about 6 hours of wearing down to get him to have a weekly bath, if we were successful at all. In this area as well, as time progressed and he needed more help, we were able to get a care giver in to take on this task as my mother aged. We also had a respite worker come in one afternoon a week.

Though his short term memory was consciously gone, and he could not have told you anyone's name that he met or who looked after him in those 18 years, he did recognize them and become familiar with them. The regional health authority did regular reviews and helped us get Dad into respite in the last couple of years, as well as the paneling process for permanent care and placement when my mother passed away. Fortunately their mandate was to provide whatever support available to them to help keep Dad at home for as long as reasonably possible. A couple of years ago we were told that we were entitled to up to 50 hours of help per week, free of charge, not even counting the day care. Of course this came with the caveat that they had had to have sufficient staff, which was always a struggle for them, and that said staff had to have their own transport, (we lived out of town), not something a lot of the care workers have due to the relatively low wages they receive. But at least is shows that the idea of proper support is out there in this province. Since this type of care is under provincial authority you would need to check to see what the story is in your area, but I would urge you to get assigned a case worker. For us initially there was not a lot on offer but we were on the files and as programs improved they were made available to us.

At the time of my mother's passing things had come to a head with him and the day programs were beginning to find him too difficult to manage. He was becoming increasingly agitated and for fear he would hurt one of the other clients by unintentionally shoving them, and also because his agitation was causing them anxiety, we ended up having to add medication that would make him too sleepy. I don't know if this was a natural progression with him or if he sensed the problems with my mother, subtle as the signs were. At any rate, if we lost these day programs the additional wear and tear on my mother caring for him 24/7 in the home would have been too much. My support was more for my mother than my father as he had his mind set on doing the opposite of whatever I tried to get him to do. At least he focused his rebellion mostly on me and gave his trust to my mother so I guess in that way it was some help.

On a more positive note, as someone else mentioned, finding something that they respond positively to is very helpful. In my father's case in the early stages, having a very simple cross-word puzzle book always at hand would keep him happy for hours. This was especially important as he lost the ability to understand waiting for something to happen, like sitting in a doctor's waiting room, or waiting for food in a restaurant. These times would typically lead to problem behavior before we found the crossword solution. Music was also a big thing for him and was probably the very last thing he ever responded to. He was also a fan of silly physical comedy, like a pre-teen boy. Actually he had very good recall of his years growing up, but lost most memory of his later years. The mind works very mysteriously indeed.

Now that he is gone, I am trying my best to stop thinking of him only from the last 18 years and start remembering the smart, inventive and vibrant person he used to be. I am hopeful that as time goes on these memories will become stronger. As my siblings and I met with the celebrant who would conduct his memorial we talked of many things I hadn't thought about in years. I think it is harder for me as I was the only one who lived close enough to see him on any regular basis during the 18 years. I think it might be a good idea for me to try to write out some of my memories of the earlier years now. I think it is very important to hold on to what he was when he had control of his life.

My thoughts are with you and all our members who are going through this.

skatesindreams
05-30-2012, 05:45 PM
Now that he is gone, I am trying my best to stop thinking of him only from the last 18 years and start remembering the smart, inventive and vibrant person he used to be. I am hopeful that as time goes on these memories will become stronger. As my siblings and I met with the celebrant who would conduct his memorial we talked of many things I hadn't thought about in years. I think it is harder for me as I was the only one who lived close enough to see him on any regular basis during the 18 years. I think it might be a good idea for me to try to write out some of my memories of the earlier years now. I think it is very important to hold on to what he was when he had control of his life.

That seems like a great idea.
I hope that, with time, your painful memories will fade; and that you can concentrate on the good and joyful times you enjoyed with your father.

Alex Forrest
05-30-2012, 09:26 PM
I think many of us are having to deal with this. My father is demented, yet he does have moments of clarity, especially when he's in front of his doctor. It is not easy to see a slow death of someone, especially a parent. Fortunately my mother is a tough strong woman and doesn't put up with it or get severely depressed over it. (I sometimes do).

It's like reverting back, and just believing you own a 'pet' that needs constant care. This 'pet' needs watching because they will urinate everywhere and then go nutso if you tell them not to urinate in the hallway. Trust me, I know your story. And it's only going to get worse.

missing
05-30-2012, 11:27 PM
My 100 year old mother lived in a retirement community apartment until about a year ago. My brother and I knew she needed more care, but the nursing home attached to the complex was reluctant to admit her.

We had the appropriate social worker evaluate her, and the report came back that since my mother was coherent and could get up on her own and go to the bathroom on her own, she didn't need further care.

We tried having aides come in, but my mother didn't like that. Eventually one came and on the first night she was there, she called me to say my mother was hallucinating. My mother went to the emergency room, where I met her. I have to say they were very pleasant as hallucinations go, and I had a better time in that emergency room visit than any before or since.

It was decided that my mother had hallucinated because she could no longer take care of her medications, and that was sufficient cause to get her into the nursing home. We moved her out of her apartment, and she's doing reasonably well. She gets great care.

She has no short term memory, so when I talk to her (which I do daily) or visit her (which I do twice a week), I get to tell her the same information over and over again. It's a little tedious (especially if it happens during the same conversation), but the thing about my mother is she's an incredibly sweet person, and if anything is even more sweet now. Every single conversation I have with her, she ends by saying "thank you," and trust me, I haven't done anything particular to be thanked for.

A few months after my mother went into the nursing home, I went to the apartment part of the complex, and ran into one of the women who works there. She commented on how good I looked, and asked if I'd been on vacation. I told her no, that the difference was because my mother was in a nursing home.

My weight and my blood pressure have gone down this year, and while this may be coincidence, my athritis doesn't bother me anymore.

And for all those caregiving years, I had it relatively easy, living nearby, with a sweet healthy mother who only occasionally set the microwave on fire.

Oh, one practical old mother concern. Watch out for UTIs. They come out of nowhere, and they can lead to very weird, paranoid, hallucinating behavior.

AnnM
05-30-2012, 11:47 PM
My mom has dementia. She would often repeat herself in conversation in the past few years, but when she and my dad came down to visit me last year I realized that she had absolutely no orientation to time and place. The change in location made it impossible for her to mask the symptoms anymore. That, and the night she picked a fight with my dad, over delusions that she believed to be real. I tried to convince them to consider medication, or getting a PT caretaker, especially since me and my brother live far away, but they refused. Dad insisted he could handle it. I tried to enlist my brother to intervene, but he wouldn't. Everyone was in denial except me and I gave up the fight.

Then my dad passed away unexpectedly in late fall. My mom's dementia worsened dramatically due to the shock and the stress. Her short term memory is practically non-existant. She'll forget that she ate breakfast within 10 minutes of eating it. We have a family member staying with her, and I also make monthly visits.

She also has a fixation on money that worsens as the day progresses: that she doesn't have any, that she wants me and my brother to take it rather than keeping it in the bank, that I'm stealing her money, that I'm trying to sell the house, etc. She's said some very ugly things to me and so far I have not been successful at trying to redirect her. Based on this thread it sounds like I should ask her doctor about meds to control the delusions and paranoia re: money.

rfisher
05-31-2012, 12:26 AM
I think one of the keys for family members who become caretakers is to educate yourself and remember that it is the pathology speaking or acting. There is a reason Alzheimer's wards keep family away from the patient for a considerable time period. The staff doesn't take things personally and adhere to a schedule. Family often want the parent of their childhood back and their own frustration and anxiety can make a bad situation worse. Join a support group if one is near by. You'll learn from others in similar situations. And most of all, accept the person of today because the person of the past is gone. Once you can do that, you'll be able to deal with what comes each day.

nursebetty
06-01-2012, 12:10 AM
My mother asked to go home forever ( she can only say a few words now ) and she was in her on home. She was talking about the home she grew up in with her mom and dad. Although someone once said that they were asking to be safe. I'm not sure about that. Unplug the stove, I worked with someone who's mother caught the house on fire with the stove. I read on the alz. board about someone's father left the house and got lost. They found him lying in water and he eventually died. It's just so hard to watch them constantly and it's hard to trust others to not take advantage of them. You will never know what is the truth and what is in their minds. So sad and so very very hard.

barbk
06-01-2012, 12:34 AM
AnnM --I'd seriously consider requesting a conservatorship so that she can't do something unreasonable with her money based on the paranoia.

Holley Calmes
06-01-2012, 04:28 AM
I have to say this as someone in the epicenter of a dementia situation. It is so hard to do all the obvious things people tell you to do. They are right, of course. But then Dad says, "Give me another week to get that paperwork..." and it becomes a month. Or "Let's get a nurse to come in.." and it never happens even after you do the calling. If you aren't the medical executor, you have no power. Everyone gives great advice, and it is so much appreciated. But being right here....it's not that easy.

missing
06-01-2012, 04:35 AM
I have to say this as someone in the epicenter of a dementia situation. It is so hard to do all the obvious things people tell you to do. They are right, of course. But then Dad says, "Give me another week to get that paperwork..." and it becomes a month. Or "Let's get a nurse to come in.." and it never happens even after you do the calling. If you aren't the medical executor, you have no power. Everyone gives great advice, and it is so much appreciated. But being right here....it's not that easy.

I've been the one given well meaning advice, and I've been the one to give it.

You're absolutely right. Only the person directly involved knows just what's going on.