Don't know what to do about my grandma... - Alzheimer's Disease & Dementia Message Board

Dark Stranger · 08-14-2005, 12:45 AM

This is a long one, so you better kick your heels up and get some food and a drink before sitting down to indulge in this tale:

My grandma of 78 was diagnosed a couple of weeks ago with severe dementia - a neurologist asked her 20 questions pertaining to things she should know, and she got only 3 of them correct. Paired with Parkinson's disease, my grandma is quite a handful - like a very large baby. She doesn't try most of the time to help herself with anything - she has a walker, but if you give it to her, sometimes she'll stand in one spot for over a half hour and not move unless she's given some help, or she'll demand that you push it for her or push it away. It takes me anywhere from 30 minutes to over an hour to get her to the bathroom and back to her chair or bed when the bathroom is about 10 feet away because I just can't move her. My grandma just refuses to walk most of the time, and my mom will sometimes pull her a little bit by her wrists, but she'll still stand still and topple forward. But other days she'll get some undesired spunk...the other night she walked up a flight of 16 stairs, but it took my aunt who came to help me an hour to get her back down. Stairs are not her thing. I'm not sure if these physical ailments are because of dementia, but they sure aren't any picnic.

My grandma doesn't know most of her relatives either...she doesn't know me or my cousins or my mom. The only person whose name she remembers is my one aunt, and she calls out her name when she wants something. This is because my aunt cared for my grandma for over 2 years in her home halfway across the country. She and my grandma returned here, but my aunt left without taking my grandma, so it's up to the rest of the family to care for her. My cousins and I have been staying at her house for the past 2 weeks during the night, and it's far from easy because my grandma lacks any kind of enthusiasm. She developed a bothersome habit of hitting her walker against her bed when she wants something early in the morning, as well as saying "Hurry up" to get our attention. Even when she speaks, she mumbles or speaks in a very low tone. I usually need her to repeat what she says at least 5 or 6 times to get it all. She will demand that she wants to sleep upstairs even though she's got a bed and air conditioning downstairs (no AC upstairs, meaning it's scorching), but we do our best to convince her to stay downstairs. She will also ask us occasionally to give her scissors to cut her pants off because the waist is supposedly too tight (they are stretchy); she even asked my boyfriend once if he had a pocket knife to cut her pants off. She wears the disposable underwear because her bladder is not too strong and it takes her forever to get to the bathroom and she'll even complain about them being tight. trust me, it's not a pleasing thing for guests to see an elderly woman sitting half-naked in a recliner.

And then she will have her random episodes where she needs to get up to go to work, to get money, to go shopping, etc. These usually happen in the early morning hours -.-

My grandma has gotten noticeably worse in the past couple of months, and my family members are at each other's throats because we have to care for her. They have been discussing having nurses come in to aid my grandma during the night (my other aunt comes every day and stays until early evening), but the only downside to that is that the last time help was hired, my grandma kept accusing them of stealing her money from her purse. But we're desperate at this point; I think that a nursing home may be in her near future, but I honestly don't know if they would discharge her because she refuses to even try to do anything. She can still feed herself and drink, but other than that, she's pretty listless and helpless. My aunt (the one that cared for my grandma) said that she would disown all of us if my grandma was put into a nursing home (note: no one forced my aunt to care for my grandma, and I understand she needs a break, but the rest of the family has no patience with my grandma). Also, if she was in a nursing home, her entire check would be claimed by them and there would be no money to upkeep the house and the bills.

......................

I know a lot of you are struggling with your own problems, but I'd appreciate any help or advice whatsoever on this topic. We're at the end of our rope and everyone is under major stress from my grandma. I know I sounded kind of mean in my post up there, but it's all true; I can't sugar-coat things like this.

angel_bear · 08-14-2005, 02:24 AM

Welcome to our little bit of cyberspace Dark Stranger (Oooooo, isn't that an intriguing name!! I'm such a bore! LOL). If you can check back through the archives and find my very first post, "Epic Saga, get your coffee ready" (or similar) you'll find your story and mine aren't so different. Guess what? Your NOT alone either!!

Your Grandma is, like my MIL, an independent soul who has probably done it tough in her good years, survived and gone on to make her own choices, own decisions and been her own woman for a good number of years.

And now .. EGAD .. she needs help. No she doesn't, it's not HER fault nobody understands .. so it must be the REST of the world that's gone mad instead.

Does that sound familiar?

Don't tell her what to do, she'll do the opposite.
Don't make her do something, you'll more as likely get a whack.
Don't take away her decision making process, she's fine, it's you that's mad! (you being anybody other than her, don't take it personally)

Does that sound familiar? LOL

My MIL has taken to not wearing her Pyjama pants. Why? They're uncomfortable. The fact she is a size 10 now and they are a 14 and falling is besides the point. They are uncomfortable, therefore, they get cut up and mangled. She knows there's something wrong, but can't differentiate the wrongness.

What do I do? I let her wreck them. Then I buy her nighties. There are special ones you can get now at the "speciality" shops that tie up at the back (like a hospital gown, but these are pretty). Try getting some nighties? Maybe the nappies won't irritate as much with just one thing around her middle instead of two. Worth a try.

Obnoxious behaviour is because she's getting away with it. She's obnoxious, does something irritating, and somebody turns up. Hmm .. that worked, might do that again ....

You have a giant toddler on your hands !!!!!!!!!!!!

As for the 'dementia' behaviour, well that's a day to day existence of pandering to them (try and not correct them or point out wrong deeds etc, it just irks them into bad behaviour). You will become an expert at diversional therapy (who needs a 6 year Uni course?). Try and make some plaster casts and get her to paint them (in water colours - my MIL discovered old oil paints, boy, was that messy) get her BUSY with something else so she's not concentrating on making your life a living hell.

What about Adult Day Care? They are marvellous.

And .. .. don't discredit a nursing home. They are trained (although some have some dubious credability) to look after these people (this is what I am training to do having done it/doing it since May 04) For your families health and welfare, Grandma might just be better off in one of the facilities geared for people just like her. She might like the social interaction, the games, the attention !!! Here in Australia, we can get up to a months respite for our charges (a continuing argument in this family .. *sigh*), perhaps you could do a 'try before you buy' thing where you are?

Above all .. and here is the realist in me coming out, your Grandma is going to pass on before the family does. It's NOT WORTH losing the love and support of a family for one person who is no longer lucid. Family is the MOST important thing, and as much as I don't agree in DUMPING people in nursing homes/hostels (whatever you want to call it) for the sanity factor, sometimes it MUST be done.

It is a hard and rocky road (hmmm .. chocolate) with some horrible and hard decisions that need to be made. Find a good elder lawyer, cover your backside, and duck!!!! LOL

Let us know how you get on.

Hugs
Sally
(Who does a lot of ranting and raving on here)

GranConnie · 08-15-2005, 05:14 AM

Hi,

Wow, that was pretty slick of your aunt, but we can all see the exasperation she must have felt caring for your grandma. You got some great advice already, so spend your time first having a family meeting without grandma there. Fan out and go find an assisted living facility that has a dementia unit or a nursing home for grandma. Also, visit that eldercare attorney. Of great importance is the need to be kind to all the relatives who are helping and let each other know that this will come to an end soon. Run, don't walk and don't let grandma terrorize you. She has no choice in the matter now and that is most unfortunate. Don't soften up and try to keep this unrealistic task going. Be strong and very courageous!
Connie