Medical Forum / Diseases and Disorders / Alzheimer's / January 2005
a truly depressing day (long [& depressing!]; sorry)
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Lee - 07 Jan 2005 09:32 GMT started off getting a very late start on my (4+ hours each way) day trip to deliver kid back to college (I am SO going to miss having an extra body available to mamasit) and visit my grandmother because my MIL woke up before I could get kid organized and out of here... could NOT convince her that hubby was indeed here, just asleep upstairs .... she got all weepy and upset over her perception that I was going to take kid and leave her here all alone ... her short term memory is SO gone now that even though she could repeat the fact that he was upstairs and I was NOT intent on leaving her here all by herself, she couldnt keep it for more than about 30 seconds.
Rather than wake him up and have him be cranky (he is NOT a morning person) I decided to relax, have a cup of coffee with her, etc....just leave later - BUT very aware that next week when my classes start again I am NOT going to have that luxury .... will have to be veddy veddy quiet and get the hell out before she wakes, I guess
Anyway... not a great start to my day .... it didn't get better :(
My grandmother is in her 80s and has NOT been diagnosed with AZ, or any other dementia .... when last I saw her, she knew me right away, even though I don't see her often .... was coherent, etc, etc.... Recently, however, my sister went to see her, and called me right afterwards to tell me that she was very worried - grandma was "right off" .... paranoid, delusional, confused, agitated ..... and asked me to try to "do something" .... my uncle, who none of us have any contact with, has her POA for personal care and so on, due to my Dad's own problems (brain injury; not progressive like AZ, but significant) Uncle has always been more interested in $$$ (and illegal substances) than in family, and it shows *sigh* But up until this episode, G has been perfectly capable of making her own decisions... she has a variety of health problems, but has always been an intelligent, independent, stubborn old bird ....was HER decision to go into the nursing home, and she made all the arrangements and so on.
Tried to reach my uncle to ~casually~ chat about what was going on - to no avail ... and 2 days later, apparently while still "confused", she fell and broke her hip. Several days in hospital - and then three days ago they sent her back to the nursing home... same facility ... but now, due to her recent behaviour, and to the high level of physical care she will require for weeks/months, she is in a "high need ward"
Uh huh .... very ~high need~ a locked ward, where all of the residents appear to be in advanced stages of AZ (or whatever) .... everyone I saw in a wheelchair, needed feeding, lots of illegible speech and crying out and so on, and the few who did say anything want to go "home"
it was nasty .... partly to see HER there.... ESPECIALLY since during the 2 hours I was there she was totally coherent, oriented to time and place, knew me on sight, was able to tell me (accurately) when my brother and sister had each visited her last, what she got for Christmas, that my uncle had NOT been up, and that she was pissed right off that they had yet to give her ANY of her clothes or things from the other ward, not even a pair of her slippers, nor had anyone made arrangements for her phone or TV to be set up "and I HAVE to call your father every morning or he worries" (damn right *sigh*)
I got them to spring some of her clothes.... (they said it was due to flu outbreak on the other ward and trying to reduce possibility of contanimation; I said fine, I'd go across to the mall and come back with new stuff; they said not necessary and made arrangements to get them) ...and got the contact info re: her phone and TV...will deal with that tomorrow - if I can't get ahold of my uncle, will pay for it myself) Don't know WHAT I'm going to do about her teeth - apparently they've been broken since shortly after the last time I was there, and dear old uncle has told her "she" doesn't have the money to get them fixed (God FORBID he should spend any of ~his inheritance~ on her - am I being too cynical? Bet that's exactly what it is though) But will try to get that sorted too
Stayed WAY longer than I'd intended - as in hours... and felt HORRIBLY guilty when I left her there.. :( Think part of the reason it was SO nasty though, was that it was a glimpse of the future re: my MIL and I DON'T LIKE IT. She is deteriorating rapidly right now - losing her words/communication ability, which is particularily difficult - and a whole lot more. We have not even put her on the list for care, because of the doc telling us earlier this year that her heart condition was so bad that she didn't have long... figured we'd manage, since it was going to be for a limited time - but...... obviously his ~prediction~ was a bit off.... she's doing MUCH better physically these days...but has lost a lot of ground otherwise. Pretty much decided that it's (past?) time for day care at least for 1/2 days a week .... free up some more home care hours
I'm spending so much time and energy on helping to keep HER at home... and in the meantime, other people are taking care of (or NOT) my grandmother - and my father :(
And THEN I made the mistake of calling my mom who lives in the same city as grandma, and she pulled a big ol' suck attack (she's very skilled at those) because by the time I left it was so late that I didn't want to go back to visit her (still had 4 hour drive thru a snow storm - and I DID see her over Christmas!!!!!!!!!)
And THEN I finally got home (2 a.m.) to find hubby still up .... he has to work tomorrow, and I'd talked to him several times today, so figured he'd be in bed, but NOOOOOOOOOOOOOOOOO .... he waited up to make sure I got home safely - and to tell me that a customer/friend of ours, who had a hip replacement and was "doing great; they moved him to rehab" when last we got updated - died today. Apparently when they moved him to a different facility for rehab, there was a communication error somewhere along the way and his medications didn't go with him .... geez, we're sorry! I feel SO bad for his wife :(
Anyway ... naught to be done about any of it right at the moment, I guess.... and tons to tackle tomorrow...suppose I'd better try to get some sleep.
Sorry for the length - but maybe now I'll actually be able to sleep - I hope.
Evelyn Ruut - 07 Jan 2005 12:16 GMT dear lee,
i am so sorry you are confronting all these issues at once. i truly hope tomorrow is a better day for you and yours....((((((((((lee ))))))))))).
 Signature Regards, Evelyn
(to reply to me personally, remove 'sox")
> started off getting a very late start on my (4+ hours each way) day trip > to [quoted text clipped - 135 lines] > Sorry for the length - but maybe now I'll actually be able to sleep - I > hope. donnah - 07 Jan 2005 13:15 GMT (((Lee))) please do what you can to take care of *you*...I am so sorry you are going through so much at one time. donnah
> started off getting a very late start on my (4+ hours each way) day > trip to [quoted text clipped - 178 lines] > sleep - I > hope. Lee - 07 Jan 2005 17:27 GMT well, got issues re: G sort of being dealt with, at least for today ... my dad's wife is taking him to visit G and will try to sort out the phone/TV stuff .... and get in touch with my uncle
and we've covered off mamasitting for an hour or so this aft so that we can go to the funeral home .... closing the store if our part timer can't cover it ...
next thing is to call the worker re: our resources ...we had an appt with her scheduled but she cancelled due to bad weather and we haven't heard from her again re: rescheduling ... need to get the day care thing sorted out, make changes to our home care hours... and at least TALK about potential long term placement
Maybe seeing just how bad it could get was a good thing.... we talk about keeping her at home ... but if/when she gets to that stage, would it be realistic? Even if we weren't juggling a business and my job(s)...I don't think so ...
> started off getting a very late start on my (4+ hours each way) day trip to > deliver kid back to college (I am SO going to miss having an extra body [quoted text clipped - 102 lines] > Sorry for the length - but maybe now I'll actually be able to sleep - I > hope. Lesanne - 07 Jan 2005 18:20 GMT Well, I can say we are very fortunate to be dealing only with a few things right now. Glad I took the time to read this, and grateful not to be dealing with nursing homes.
 Signature Lesanne
> well, got issues re: G sort of being dealt with, at least for today ... my > dad's wife is taking him to visit G and will try to sort out the phone/TV [quoted text clipped - 170 lines] >> Sorry for the length - but maybe now I'll actually be able to sleep - I >> hope. Evelyn Ruut - 07 Jan 2005 20:01 GMT > well, got issues re: G sort of being dealt with, at least for today ... my > dad's wife is taking him to visit G and will try to sort out the phone/TV [quoted text clipped - 17 lines] > realistic? Even if we weren't juggling a business and my job(s)...I don't > think so ... lee, there is absolutely no shame in that. caregiving is a grueling and exhausting thing that not everyone is suited for, either from a practical standpoint (your business) or an emotional standpoint.
sometimes it is far better to recognize that, and allow the person the dignity afforded by having professionals care for them in a professional setting rather than the tremendous amount of stress for all concerned in home care.
 Signature Regards, Evelyn
(to reply to me personally, remove 'sox")
Lee - 07 Jan 2005 22:34 GMT I don't think we're there quite yet.... but I think 'tis time that we started to face the possibility. We talked about it on the way to the funeral home today :( Not a fun place to go, or a fun conversation to have - but I think both of us feel better for having had that time.
We have a new behaviour to deal with .... I found a burned kleenex in her room the other day .... and yesterday the home care worker actually saw her light one on fire - she keeps hiding her cigarettes (on herself) and is CONSTANTLY convinced she doesn't have any (even though she has plenty) Apparently she's getting confused - white, you get them in your purse - must be cigarettes!
Have gone through her room and the house and collected up all the lighters - found about 30 just in her room, purse and pockets (no WONDER hubby & I can never find one!!!!!!!!) ... but it's definitely a worry
> > well, got issues re: G sort of being dealt with, at least for today ... my > > dad's wife is taking him to visit G and will try to sort out the phone/TV [quoted text clipped - 26 lines] > setting rather than the tremendous amount of stress for all concerned in > home care. Dennis P. Harris - 08 Jan 2005 04:09 GMT > We have a new behaviour to deal with .... I found a burned kleenex in her > room the other day .... and yesterday the home care worker actually saw her > light one on fire - she keeps hiding her cigarettes (on herself) and is > CONSTANTLY convinced she doesn't have any (even though she has plenty) > Apparently she's getting confused - white, you get them in your purse - must > be cigarettes! it DOES sound like it's time to be thinking about placing her somewhere where she will be safe! the problem with trying to do it at home is that she will think that she's in control of the situation. in an institution, she won't feel that way.
Lee - 08 Jan 2005 15:11 GMT if she doesn't soon move beyond the "if I can't see you, you're not here and I shall panic" stage, I'm going to start thinking she'd be better off - at least there she would presumably not feel she was 'alone'. I was upstairs in bed listening to hubby try to reason with her; yes he was going to work, but I was still here, upstairs in bed, etc. etc... he had no more success with it than I did the other day. I came down, and she keeps asking me where I'm going today. Is obviously afraid I'm going to leave her here alone. Was TRYING to tell her - as we do all the time - someone is always here; I don't leave you here alone.
It's easy to get angry at her for not trusting us - we DON'T leave her here alone. But then I realized that in her reality, we do so. Every time I go out to the back room to work on a computer; every time I go to the can; every time I try to have a bath - every time SHE goes into her room - she is 'alone' (and afraid).
> > We have a new behaviour to deal with .... I found a burned kleenex in her > > room the other day .... and yesterday the home care worker actually saw her [quoted text clipped - 7 lines] > it at home is that she will think that she's in control of the > situation. in an institution, she won't feel that way. Evelyn Ruut - 08 Jan 2005 16:25 GMT > if she doesn't soon move beyond the "if I can't see you, you're not here > and [quoted text clipped - 16 lines] > is > 'alone' (and afraid). yes, that is also typical. we never left my mother in law alone and unattended for 5 minutes for the three years she lived with us. she also thought we did. explaining meant nothing.
 Signature Regards, Evelyn
(to reply to me personally, remove 'sox")
Stephen - 09 Jan 2005 14:03 GMT >yes, that is also typical. we never left my mother in law alone and >unattended for 5 minutes for the three years she lived with us. she also >thought we did. explaining meant nothing. My mom is never left alone, but she often thinks she is alone and gets depressed about it. On the other hand, she also thinks that there are usually loads of people in the house. Her latest is the girl that looks like her - actually, her reflection in the bathroom mirror - who she says is pretty quiet, but very nice. -steve
Lee - 09 Jan 2005 14:36 GMT we have stray people too ..... the ones that come to visit and then don't leave (she usually remembers the arrival, not the departures) who, for some inexplicable reason, take to hiding upstairs or wherever
> >yes, that is also typical. we never left my mother in law alone and > >unattended for 5 minutes for the three years she lived with us. she also [quoted text clipped - 5 lines] > reflection in the bathroom mirror - who she says is pretty quiet, but very nice. > -steve Evelyn Ruut - 09 Jan 2005 15:35 GMT > we have stray people too ..... the ones that come to visit and then don't > leave (she usually remembers the arrival, not the departures) who, for > some > inexplicable reason, take to hiding upstairs or wherever it has to be scary not to be able to trust your own senses, your own mind, anymore.
 Signature Regards, Evelyn
(to reply to me personally, remove 'sox")
Anthony Shipley - 10 Jan 2005 02:44 GMT >it has to be scary not to be able to trust your own senses, your own mind, >anymore. It is, but, you do. The stressful part is when you realise what you've done.
The thing that perplexed me was the continual deja vu feelings. Now, that I know what it is, it doesn't haunt me as much.
That's what it feels like, for me anyway. I might very well be wrong.
- Mod as a hooter!
Stephen - 10 Jan 2005 01:01 GMT Ours live there, apparently. :-) There are people living in the basement and people always passing through - in her world, that is. Reflections are also interesting. The reflection of my father in a glass covered framed photograph of the cat when he is seated in his living room chair with a reading light on is another person in her world. -steve
>we have stray people too ..... the ones that come to visit and then don't >leave (she usually remembers the arrival, not the departures) who, for some [quoted text clipped - 13 lines] >nice. >> -steve Tumbleweed - 08 Jan 2005 19:05 GMT > if she doesn't soon move beyond the "if I can't see you, you're not here > and [quoted text clipped - 16 lines] > is > 'alone' (and afraid). Lee, you are half way there...the other half is realising that you cant explain meaningfully things to her :-(
 Signature Tumbleweed
email replies not necessary but to contact use; tumbleweednews at hotmail dot com
Lee - 10 Jan 2005 05:17 GMT still sometimes when we can - just depends on how she is at that particular moment - and on what it's about .... doesn't mean she'll retain it for any real length of time though, unfortunately ... and it's becoming less and less all the time.
still some meaningful content in her speech too, on occassion ... but that too is diminishing :( She did manage to complain to my sister in law that we "never tell her anything ahead of time any more" .... surprised me that she managed to communicate it ...and she's absolutely right, too!
We used to tell her ahead of time what was happening - now it causes her days or hours of stress....so we wait until the last minute and surprise her - here's your boots and purse, you're going to wherever .... Still stress inducing - but 5 minutes of stress is a heck of a lot better than 5 hours, I figure.
> > if she doesn't soon move beyond the "if I can't see you, you're not here > > and [quoted text clipped - 19 lines] > Lee, you are half way there...the other half is realising that you cant > explain meaningfully things to her :-( Lee - 12 Jan 2005 01:57 GMT right at this moment, I'm thinking she'd be better off without meaningful speech ..... If she was a kid who just spoke to me the way she did, I'd likely have spanked her!
I KNOW that she doesn't know what the hell she's saying or how very rude she was, but hard not to get angry ...especially now that she is interupting me every 3 minutes to apologize - I didn't yell at her, as much as I wanted to, but she ~got~ the body language.
> still sometimes when we can - just depends on how she is at that particular > moment - and on what it's about .... doesn't mean she'll retain it for any [quoted text clipped - 40 lines] > > Lee, you are half way there...the other half is realising that you cant > > explain meaningfully things to her :-(
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