newly diagnosed parent with mid-stage Alzheimer's

18 years ago

Right up until she was 90, my Mom was Ms.Independence - yes, we noted her memory and word recall slipping, but she WAS 90 -- then towards the end of that year, she started to have episodes of depression and an imaginary diagnosis of some kind of auto-immune disease she read about in a home medical book -- her doctor, would check her blood pressure (maintained by HBP medicine) and pronounce her healthy and send her on her way -- this would cheer her for a week or two until the next bout of bowl problems and then she'd be sure the doctor had missed her disease -- this is a year later, and she had a couple of falls -- never breaking anything (because, she says, she's immune because of her disease!), but the last fall did horrible bruising and head trauma when she fell on top of her walker and landed in the hospital, followed by 3 weeks in a rehab nursing home -- I think the fall acclerated her recently diagnosed mid-stage Alzheimer's. That diagnosis was made when we became dissatisfied with the attention of her primary doctor, and made an appointment with a gerontologist who specialized in Alzheimers & Age-Related Dementia. My mom is still in her own home with a live-in health aide -- I usually get down to visit my Mom twice a week, but my sister who only lives a block away from my mom gets the brunt of the caregiving while trying to maintain a 30-hr. week job which she will have to keep for at least 3 more years. Right now there's some new medicines from the gerontologist to try -- our biggest fear/problem is that her recent aggressiveness/paranoia, directed mostly to the health aide, will drive the aide to quit, and then we'll have no choice but to put Mom in a nursing home -- we're hoping the new medicines will kick in and forestall that inevitability for a while -- my sister has a power of attorney, we've been to see an Eldercare lawyer and are working with the gerontologist -- now, it's vacation time -- we all need a rest to recoup our own lives -- my husband and I plan to go away for a week, but I feel terribly guilty putting even more of the burden on my sister -- her son is getting married next month and she's going to have to be away for at least 2-3 days and us for 1 of those days -- I guess I'm looking for someone to tell us if there is anything else we can do, if we should cancel the vacation, and what if the health aide quits suddenly -- how fast would we be able to get Mom into at least a temporary facility with a look to making it permanent. I'm sure many of you have gone through this yourselves -- my own husband saw it with his mother, but it's different when it's your own -- the feelings of helplessness and guilt are overwhelming - help!

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Comments (7)

heydeborah
18 years ago
Hi Lorri and welcome! boy things are very slow here, which when you think about it is a good thing (like that tv lady says!) although i have no one with this terrible, terrible disease, i know first hand about being a 24 hour a day caregiver, and i think i would take that holiday, you need it to be refreshed. i think and hope everyone will agree, perhaps you could have an alternate caregiver in place just incase, you'd probably feel better. not to sound rude here and i am a caring person, but when Alan went into the hospital last week and after everything kindof settled (his blood sugars are 5.5 and not higher than 6.2! - yeah!), i said to myself, now you can rest while he is in the hospital (well it didn't really work that way, but i did get to sleep in till 9:30 one morning!)and i did get to put on my pj's at 8:30 at night, plus we got to eat "strange" suppers - like waffles from scratch. also got to go to wal-mart after visitng him at night and didn't have to look at my watch. as all my great friends here said to me look after yourself. Glitter would we a good one to have here right now, she has went through alot with her mom lately! (by the way Linda, haven't heard from you in awhile, and miss you - off-line). it's chilly here right now and really windy so i think i'll go out with Buddy and weed one of the flower gardens and smell the wonderful lilacs - a total of 200 feet of them and 20 feet high! ps - forgot to tell you all i sprained my ankle! deb
PeaBee4
18 years ago
You and your sister really need to start looking around for a suitable NH in case the need comes up suddenly. Be open with them about what the situation is. If they have a waiting list, get her name on it. It may be that when her name comes up, you may want to go ahead and place her then instead of waiting until you have no other choice. Welcome to the forum. Come and post whenever you have questions, want to gripe or vent or just to get a little sympathy. No matter what, you can bet that someone here has been in the same situation.
PB
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fairegold
18 years ago
Welcome to a great forum. I'll pass along one tip that I got from the good people here.... I was urged to get my 95 yr old Mother on an antidepressent medication. She was terribly depressed, but also had a lot of obsessive behaviors, as well. I resisted, thinking that I was worried about anything that would cause her to be disoriented or lose her balance, since she has expreme osteoporosis. But she started Lexapro less than two weeks ago, and I can already tell the difference. I'm not sure how this might work with an AD patient, but do ask about it.

And I will echo what PB said about lining up a NH now, before you need it. It's time consuming to visit a number of homes and collect the information, so start the process when you don't have an immediate need.

And ask about respite care, where she can stay for short-term, like a week, while you get away. Some facilities have that service, and it could be a vacation for everyone.

Once more, welcome!
mimi427
18 years ago
Fairegold:
My mom has AD and is on Lexapro...it's done wonders for her depression
fairegold
18 years ago
Thanks, Mimi---good to know. Lexapro is tops on my list of miracle drugs!

Helene
derryw
18 years ago
Hi and welcome!! I think worrying about whether the aide will quit is one of THE top concerns among folks in your situation. I know for me, it was #1 or #2. It will happen at some point, to be sure. BUT, I found that the good ones have an amazing tolerance for the behavior of their patients, esp if they have been doing Alz for a while. In addition, most of these folks really need their jobs. Somethings that worked for us included making the aide as much a part of the family as you can, which means be as considerate of her as you would be if she was a family member. Get to know her family and try to get her off for her family affairs, etc. Overtly recognize the behaviors that are distressingto her...my Mom would use racial terms common long ago and that was offensive to one of her aides, for example. If you have a daycare or respite option, you might want to give the aide a break by having her take your Mom there for a few hours or a day. Also get familiar with the agencies in your town than have aides, because you may have to turn to one of those in a pinch if your aide does quit. But you can find replacements with some work. It Is VERY stressful to have to find a new aide, believe me. Of course be sure you are paying her the current "going rate" in your area and pay her for her vacation. It is all about making it a good place to work. Lots of these home aides actually bond more closely with the family than with the patient. Talk to her every day, without fail. Good luck! It is a hard thing. Derry
mimi427
18 years ago
Dear Derry,
GREAT advice ... I know you mentioned "talk to her everyday"...in addition to talking to her, I make a point of asking how her day is going, if there is anything I can do to make things easier/better and I tell her quite often how much I appreciate her -- with lots of hugs -- not everyone takes to hugging, but for us it works!! Mimi

newly diagnosed parent with mid-stage Alzheimer's

Comments (7)

heydeborah

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