Medical Forum / Diseases and Disorders / Alzheimer's / September 2005
stages
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s.valentine - 22 Sep 2005 04:14 GMT Hi everyone, I have another question. My father spent the night with my brother and sister in-law the other night, to give me a break. They said he woke up the next mourning and did not know where he was or how he got there. He also had two bathroom accidents. When he came home he kept thanking me for all I do. Then he ask me why he was here? He is like a different person. He has had tias before, If he had another could this make him worse or do you think he may be going into a different stage. His DR. is out of town until Monday.. Has anyone went through anything like this? s valentine
Lee - 22 Sep 2005 05:29 GMT my guess would be that it's a reaction to change.... and that he's likely to settle down now that he's back with you ....
long before my MIL was anywhere near as bad as she is now, 2 of her daughters took her to a resort for a few days.... it was horrid... she was totally discombobulated, and had all sorts of problems that she'd never exhibited to that point (including toileting ~issues~) ... took her a while to settle back in at home ... but she did ... and we never tried that again.
Even having them come here while we go away tends to cause some deterioration ... to a lesser degree though.
now that she has deteriorated a whole lot more - to the point where even when she's at home nothing FEELS like home to her, and she's constantly asking to go home... I don't think it would matter too much ... she adjusted to the hospital quite well, and again to her return home... but in the early to mid stages, I think changes like that are very very difficult for the person to deal with.
> Hi everyone, I have another question. My father spent the night with > my brother and sister in-law the other night, to give me a break. They [quoted text clipped - 5 lines] > DR. is out of town until Monday.. Has anyone went through anything like > this? s valentine The Turd Burglar - 22 Sep 2005 05:36 GMT I have!!! Yeah they are a totally different person. You can't even trust them anymore. Just make an appt. with the DR. and check it out!
Tumbleweed - 22 Sep 2005 09:02 GMT > Hi everyone, I have another question. My father spent the night with > my brother and sister in-law the other night, to give me a break. They [quoted text clipped - 3 lines] > different person. He has had tias before, If he had another could this > make him worse or do you think he may be going into a different stage. Either or both ,people dont 'move' into stages cleanly, they deteriorate and stages are just a shorthand way of summarising/simplifying where they are at any particular point.
> His DR. is out of town until Monday..
>Has anyone went through anything like this? Probably everyone here.
 Signature Tumbleweed
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Evelyn Ruut - 22 Sep 2005 12:16 GMT > Hi everyone, I have another question. My father spent the night with > my brother and sister in-law the other night, to give me a break. They [quoted text clipped - 5 lines] > DR. is out of town until Monday.. Has anyone went through anything like > this? s valentine Stages, in alzheimers, are not sharp delineations where a person suddenly goes into "the next" stage. The progression is more gradual, and what we call "stages" are more for us to try and measure what abilities they have lost, or still have. Few people are in any clear cut stage, they might have some of the symptoms of one stage and some of the symptoms from another, never fully fitting into one category, but more in general in one category than another.
I went through something like what you describe with my mother in law when I had to drive 100 miles to visit my father one Saturday, and I thought I could take her along and keep her out of my husband's hair for that few hours. We started out just fine. We got to my father's house and sat and visited for a bit, when she began demanding to go home. She got pushy and snippy about it. She refused to use the toilet there, and I knew that after a couple of hours of driving, she surely must have had to "go" but she continued to refuse. Her demands to be taken home got more pressing and more angry. My father said I should take her home if that was what she wanted. Naturally, he didn't realize how confused she was. Nothing I could say would put her off.... that we'd only just gotten there didn't matter.
Okay, so I reluctantly got her settled into the car and began the long trip home. Well that trip was sheer hell. She had no idea who I was. She was very snippy with me, very demanding and rude, and continued berating me the whole two hour trip home. It was as though I was purposely keeping her in the car on some ride and making home further away than it really was, in her mind. Nothing I could say or do would shut her up or placate her. She said she wanted to go home RIGHT NOW! Telling her we were going home didn't matter. She wanted home to be closer than it was.
When I told her I was her daughter in law, I was 'Evelyn,' she acted as though she didn't understand the words. When we finally did get home from that endless journey, she told my husband to "pay that woman" who took her home. I was stunned, because she seemed to have totally disconnected with the life she was living and all that was familiar in it, including me, our car, and nothing could reach her.
Later on, after she went to bed and got up the next morning in her own bed, she remembered who I was again and went through her usual, normal routine. This is why I always say they seem to THRIVE on routine. Being unable to relate to new experiences, they also seem not to enjoy new experiences anymore, the way normal people do.
Of course like we always say here, your experience with a loved one might be different, but I have heard enough reading in this newsgroup to make me believe it is quite typical. Taking your loved one on a trip might sound like a good idea, but have a ready bail out plan! It was on that day that I realized my mother in law was probably getting a lot further along than I realized, in her illness.
 Signature Best Regards, Evelyn
(to reply to me personally, remove 'sox')
s.valentine - 23 Sep 2005 01:51 GMT Hello all, I just want to say thanks! I do not know how long each of you has been dealing with your loved one, but what you all had to say was what happened Today was a normal day for him. It took 2 days to get back to him knowing what was going on but he knows now. I have only been dealing with this a little over a year, how long have some of you been taking care of someone? Thank you! s valentine
Gwen Love - 23 Sep 2005 04:35 GMT I looked after my husband a little over 6 years. He died in March 2001. Gwen
> Hello all, I just want to say thanks! I do not know how long each of you > has been dealing with your loved one, but what you all had to say was what [quoted text clipped - 4 lines] > Thank you! > s valentine LindaJean - 23 Sep 2005 14:19 GMT My husband is just being tested for the level of dementia
Linda
> Hello all, I just want to say thanks! I do not know how long each of you > has been dealing with your loved one, but what you all had to say was what [quoted text clipped - 4 lines] > Thank you! > s valentine Tumbleweed - 23 Sep 2005 16:45 GMT > Hello all, I just want to say thanks! I do not know how long each of you > has been dealing with your loved one, but what you all had to say was what [quoted text clipped - 4 lines] > Thank you! > s valentine my mother cared for about 5 years from the time he was really bad until he had to be placed due to deterioration.
 Signature Tumbleweed
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s.valentine - 24 Sep 2005 03:23 GMT Hi everyone, after reading your replies, I feel really sad about what you have went through. Until my father became ill I had no idea how this illness sucks the life out of the person who has it and the caregiver, I don't know if I can do this another year. Some of you have had to deal with it for years. I just want to say you all must be very special people. so valentine
Pat Stewart - 24 Sep 2005 05:42 GMT 15 years for my mom. It varies based on health issues in each individual.
> Hello all, I just want to say thanks! I do not know how long each of you has > been dealing with your loved one, but what you all had to say was what [quoted text clipped - 4 lines] > Thank you! > s valentine Octavia - 26 Sep 2005 19:17 GMT Unfortunately, I just experienced something similar with my MIL. I had already been thinking maybe my SIL & BIL could take her for a night maybe once a month, as they live just up the street.. After yesterday, I'm not sure if that would work.
We are just north of Houston. Although Hurricane Rita could have been infintely worse, even for us here this far north of the coast, we didn't fare too bad. We did lose power for almost 2 days. It was weird. Part of the neighborhood did have power. So yesterday afternoon, with the temp rising to unbearable temp with no AC or even a fan, we went up to my SIL's to get out of the heat for a while. Even my MIL, who seems to take heat much better than we do, was starting to look a bit wilted. They wanted to fix us dinner so hubby & I left for a little bit to let the dogs out & close up the house (the lights had just come back on). She wanted to come back with us but we told her it was still way too hot & we were coming right back anyway for supper, explaining we had to let the dogs go potty. In that small amount of time we were gone, my SIL had heck with my MIL, trying to keep her there. She kept insisting she wanted to go home. She had only been there a couple of hours.
After we got her settled in last night, I told my husband I thought it was to the point that she'd want to be here even if half the house burned down.... She was beginning to show signs of confusion the night before, just after not having lights & TV all day. She understood we didn't have lights but occassionally tried to turn a light on anyway. That night, I showed her the battery operated tap lights we had in her bedroom & bath. She told me she knew how to operate them, because she had one "at home". She kept repeating that & kept turning it off & on. I just let her, because I wanted her to be comfortable with it. Finally I quietly said "you *are* at home". So sad - I know in her mind, she probably was back at least 10 or 15 years, when she had her own home that she'd lived in for at least 25/30 years before moving into my SIL's house. She doesn't usually talk like that. Even there in her room surrounded by all her furniture & things, she was a tad messed up. I thought to myself about the ones less fortunate who are in nursing homes with only about a box worth of their belongings to make the place homey. I know it was just the strain of the "changes" (like others have discussed here). For her, going without lights & TV all day was too much, enough to make her vocalize the thought that she wasn't "at home".
Even though I'm still new to this horrid "disease" (or however it is called), I have to agree with others. From my observation & recalling the things my SIL has told me over the years, I think unless they do have like a bad TIA, the "stages" are gradual. And from what you just experienced, any kind of change sure doesn't help. Apparently even if we perceive it as a positive, even temporary change. I'd love to begin to explore & utilize the adult day care places, where she & I could at least have a break from each other & she for her same surroundings for a few hours maybe once or twice a week. I've been thinking she would probably like being around others where they listen to music, do chair exercises & such. But after my observations of the last couple of days, I just don't know. I guess we can just try & see what happens. Obviously a time out *does* work for some people. My suggestion is that you try it one more time. Maybe the second time, he will be calmer. If not, then you know you can't ever try it again.
As a side note, I think it is marvelous that he thanked you for everything:) ~~~Octavia
> Hi everyone, I have another question. My father spent the night with > my brother and sister in-law the other night, to give me a break. They [quoted text clipped - 5 lines] > DR. is out of town until Monday.. Has anyone went through anything like > this? s valentine Mary_Gordon@tvo.org - 26 Sep 2005 20:36 GMT The really sad thing, Octavia, is they do reach a point where it doesn't matter if they are in their own homes, their daughter's home, daycare, an institution or a Motel 6 in Peoria. They can be surrounded by their own things, or have nothing left but what goes in a shoebox and it doesn't make any difference. Every place is confusing and confused. Nothing seems familiar. Nothing makes sense.
By the time my MIL went to assisted living, I swear to you, she could have been just about anywhere. Life itself had become distressing, no matter where she was, since she just couldn't get grasp what was going on, where she was, what was happening to her. She was at sea in the fog.
What begins to matter is not where they are or even who they are with, but having a routine. Most of our loved ones have done far better in daycare or assisted living than we would have thought. Places like adult daycare or assisted living for dementia patients are usually superb at providing the structured routine and stimulation that they need and do best in - often much better than we can do in a home environment.
M
Pat Stewart - 27 Sep 2005 02:46 GMT Mary is absolutely right. Sometimes it doesn't matter where they are, they want to be someplace else. There are some people who always want to go somewhere - it's that place called "home."
Home can be so many things to these people. It can be back to the way they were before the disease took over, or it can be just someplace that looks familiar.
It's the elusive "home" that makes me so sad.
My suggestion always is to take your loved ones to a good AL that deals with dementia while they can enjoy the activities, the companionship, and the routine that we provide.
I know it's hard, I've been there myself, but most people really do enjoy the routine, and the attention they get from staff members who aren't stressed to the max because they're watching their own loved ones disappear.
Routine is so important. It can usually help with the need for the ever elusive "home".
Patty
> The really sad thing, Octavia, is they do reach a point where it > doesn't matter if they are in their own homes, their daughter's home, [quoted text clipped - 18 lines] > > M Octavia - 30 Sep 2005 16:56 GMT Really appreciate your comments.
The routine you talk about makes sense. Once we got moved in & settled, we have established a routine. My SIL commented just yesterday she thinks her mom is much happier now (having us here). But after she'd gone without lights for a whole day, routine was mostly definitely interrupted. No TV all day, no lights. All of us (even me - who is usually the one to be with her all day long) were in & out of the house, getting the yard picked up. From what you & others have mentioned about routine, I can now easily see that was precisely what messed her up so bad. After the lights came on, she was completely exhausted that first day. All is back to normal "routine" now - she's doing fine. (Knock on wood - with this mess, you never know when a bad day will pop up)
> Mary is absolutely right. Sometimes it doesn't matter where they are, > they [quoted text clipped - 44 lines] >> >> M Octavia - 30 Sep 2005 16:48 GMT Thanks so much for your insight, Mary.... In my mind, I know my MIL will have to be in a Nursing Home at some point. I realize it will get to the point where she is going to be too much for us to handle, when it is time for the pros. Luckily, the home isn't that far from here. Whenever it happens, at least we'll be able to see her frequently.... This whole thing is sad. My heart goes out to everyone here.
> The really sad thing, Octavia, is they do reach a point where it > doesn't matter if they are in their own homes, their daughter's home, [quoted text clipped - 18 lines] > > M Beth Heimlich - 27 Sep 2005 02:59 GMT Octavia, I've experienced the same that Mary describes with my MIL. We had her with us for a year and although it worked well in the beginning, as she deteriorated--our basic routine no longer made sense to her and she just withdrew from life. After the emotional trauma(ours, not hers) of placing her in a dementia-specific ALF-we were stunned at how she blossomed. She could do almost what she wanted when she wanted...they changed her clothes am and pm and got her for meals and showers. But otherwise, she could sleep when she wanted or walk around when she wanted. There was always someone available to interact with-including men at 3AM! I feel the setting and some peers made sense to her-even if she did not know quite where she was. She no longer recognizes us, but is content in her familiar world that really expects nothing of her. Thus, she shines and is fussed over. If we had kept her in "more familiar surroundings", she'd have died from apathy long ago. Each person has different deficits...and I admit, it's been a long road. But you do the best you can with what you have and know. We feel blessed-that she's readily managed where she is and also that she has the funds for it. Best wishes. Beth
Evelyn Ruut - 27 Sep 2005 04:12 GMT > Octavia, I've experienced the same that Mary describes with my MIL. We > had her with us for a year and although it worked well in the beginning, [quoted text clipped - 16 lines] > Best wishes. > Beth That was also our experience. Although by the time we placed her, she was unable to do a lot of things, but she did seem to enjoy the routine and the freedom of the nursing home as much as she could. If I could do it all over again, I would have placed her sooner rather than to have imagined that we were the best of all possible scenarios. We were both sure she was happy and comfortable there, at least as much as she could possibly be.
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Best Regards, Evelyn
(to reply to me personally, remove 'sox')
Camille - 27 Sep 2005 13:19 GMT This is the same as our experience when we placed my mother in a Alzheimer's ALF. It has really been the best decision we have made regarding my mother's care.
Camille
> Octavia, I've experienced the same that Mary describes with my MIL. We > had her with us for a year and although it worked well in the beginning, [quoted text clipped - 16 lines] > Best wishes. > Beth Octavia - 30 Sep 2005 17:15 GMT Thanks so much to each of you who have shared your experiences here about routine & ALFs:) ~~~Octavia
> This is the same as our experience when we placed my mother in a > Alzheimer's ALF. It has really been the best decision we have made [quoted text clipped - 29 lines] > ----= East and West-Coast Server Farms - Total Privacy via Encryption > =----
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