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[reener06]

Reener06, I just want to add in another thought here--which is that your sisters' nursing experience is very likely to have had a lot to do with "reorienting" people who are suffering from short-term memory problems--such as after head trauma and similar things. Training for geriatric challenges and dementia is actually quite different, and is not generally a part of nursing education unless the individual has pursued additional credentials in geriatric nursing. The fact that your sisters are reverting to their own nursing experience even though it is inappropriate in this context possibly (probably?) says a lot about their level of denial right now.

msp (and paultuttle), I think you are right. I've wondered if this was a signal that they were in some denial. And then of course telling me I'm wrong reinforces that.

They--the two sisters--are now planning a "family work day" for May 1 for anyone to come help clean out the garage and shed. They plan on doing this somewhat annually, to help Dad get through all the accumulations of stuff he has. He knows they need to move to assisted living, but he's too overwhelmed and tired to do it himself. So this is a great idea, except I was told that only "older children", i.e., teenagers, can come help, but of course my help is wanted. And of course, these two sisters happen to have (wait for it) older teenage children. So they are telling me I can come, but leave my kid behind, and told my brother the same thing. I get it but it also feels somewhat exclusionary and controlling. I said I probably couldn't come help--I'd have to drive 7 hours to get there to help one day, and said sisters think we shouldn't stay with M&D, so I'd have to drive another 3 hours to stay with one of them. And coordinate childcare while I'm gone. I said I'd be getting my diss draft in about that time, so I'd have to try for another time.

[neutralname]

Agh!  My sister and I try to help our mother, but while she constantly complains about loneliness and problems she has around her apartment, she then also is very uncooperative about help we arrange. 

She is refusing to get one of those alarms you wear around your neck or on your arm to call for help if you fall.  Too expensive and she does not like it, she says.  (She can easily afford it.)

She can't use her shower, but won't cooperate in even getting a bar put into her bath so she can steady herself.  My sister organized a bath chair, but my mother didn't like it.  We found someone to help her have regular baths, but she is being difficult about even arranging to be in for that.

She keeps on writing out checks for people who shouldn't be getting her money, but insists on keeping her checkbook. 

I know this isn't unusual for some older people, especially with some dementia, but it sorely tests our patience.  She is holding on to her independence, and I can understand that.  But she doesn't have the capacity to be really independent any more, and if she does not cooperate with us helping her, then the only option will be to take her independence altogether.  I don't want it to come down to competency hearings and court orders, but she is becoming a danger to herself.  The next stage is threats and ultimatums about what we will do if she does not accept help.

One thing I am pretty sure about: if she does end up in a home, she will hate it and will become much more confused rapidly. 

[frogfactory]

neutralname - sorry to hear about all this.  From my armchair, it reads rather like your mother may be becoming depressed, which is not an uncommon response to ageing and becoming less able.  Is this something you might bring up with her doctor?

[msparticularity]

Neutralname, this is such a hard time to deal with; we want to both preserve our parents' independence and dignity, and yet prevent them from harming themselves--not always possible to combine! In addition to Froggy's depression suggestion, I also wonder whether your mother has the wish/expectation that one of you move in with her to take care of her. We went through this pattern with my MIL and with my grandmother, and in both cases they seemed to have the belief that their children should be right there providing the needed level of care so they could stay in their homes. As you are seeing with your mom, it manifested in rejecting "hired help" and continuing to complain about not being able to manage alone--but absolutely going crazy at the thought of assisted living. 

[jossi66]

2much2do, thanks for that slide show.  It really gives me a new way of looking at things.

I recently had to oversee getting my sister into a home.  She was diagnosed with frontal lobe dementia in 2004 and has gone exponentially downhill since then, with things really coming to a peak just since the end of the year.  We have been trying to care for her at home (mainly her husband, my sister, and me) but recently it became impossible.  She started getting self-destructive and very, very distressed.  She has been in the home about a month now and we are all trying to come to terms with it and do what we can to help her.  In the meantime, she SEEMS to be accepting things, and is certainly much calmer than she was before.

Unlike reener's family, none of us is in the medical field and we really have no family history of dementia, so I look forward to this thread to get some advice and ideas; as well as to share some of the heartbreak we're all going through right now. 

Thanks so much for a place like this to vent.

[neutralname]

Thanks for the comments Ms P and Frog.  My mother's had mental health issues all her life, and she has been seen by lots of mental health experts.  Her main problem/symptom is alcohol use, which is of course a depressant.  She won't stop that unless she is in a locked ward.  It is the alcohol use that has probably caused the dementia.

I think with her there's a sort of magical thinking or wishing for the impossible going on.  She doesn't actually want to move in with either of her children, and that wouldn't be an option, because she is too difficult to be around.  What she wants is a husband to look after her, but her husband died several years ago. 

It's all complicated by the fact that she was never very nurturing or considerate when we were kids  -- indeed she was much of the time pretty unconcerned.  Neither of us have much sense that we now have the opportunity to support her as she supported us. 

[frogfactory]

That is tough, neutralname.  I can imagine finding myself in a similar situation when my own mother gets older - alcohol: check, mental health problems: check (though no contact with professionals because she's convinced they're all in league with my father), not widowed, but separated with a view to divorce, not a very nurturing or interested mother.

You have my sympathy, and I hope your mother doesn't neglect or harm herself.

[jossi66]

We got through the first major holiday with my sister in the nursing home.  All of the people that came to visit the residents as well as unusual staff members made her rather agitated, but she seemed to like the stuff we brought her and wanted us to stay awhile.

We went outside of her ward brieflyand she wanted to go back there quickly.  I took that as a good thing, I guess -- she went back rather than toward the doors outside.

I've been trying to decide if I should risk taking her outside of the home (on a drive maybe) now that she's been there a month and a half.  She might enjoy the outing, but I fear that either she will get agitated outside/in the car or that we will have to fight with her to get her back to her ward afterwards.   

Has anyone had any experience with this and any advice to offer? 

[barred_owl]

Jossi, could you check with the caregivers or nursing director to see what they might think of taking your sister out once in a while?  They might be able to give you some tips about how to respond if your sister becomes agitated or combative while you're off-site from the facility, or perhaps recommend anti-anxiety medication to help keep her calmer.  They might also be able to gauge how well your sister is making the transition to life at the facility and whether or not an off-site trip would be advisable just yet.  Some people need more time to adjust, others less; the folks who see your sister day-to-day would likely be able to tell how well she's adjusting and could advise you accordingly.  Good luck--and I'm glad the first big holiday experience went fairly well, considering.

[jossi66]

Thanks, barred_owl -- that is one idea.  I did bring it up with one of the social workers there and she did allow that they can handle issues where someone does not want to go back -- I just don't want to put her through a trauma, and one thing I've found is that it's so hard to know where she is --- she has little language left, so it's very hard to get any information from her.  But I will talk to the head nurse in her ward for some ideas.
Much appreciate the input!

[mntwins]

My father suffered from Alzheimer's and spent the last three years of his life in a nursing home.  We would take him out for lunch at nearby fast food restaurants.  He was fine with the transitions.

It's a tough disease to deal with.  You learn to treasure and celebrate the little things.

[jossi66]

Thanks, mntwins!  As I said upthread, no one in my family has ever had any condition like this before, so we all have a lot to learn.  It's good to know that it worked out all right with your father.  I need to get another person or two to help out and give it a try, I think, atleast in the next few weeks.

Yeah -- very tough disease!

[questor]

About them getting combative, in my grandmother's case when they took her out of the "home" for a drive she got anxious and kept asking "Can we go back, can we go back?" So obviously what her adult children thought was a treat was anything but. Have to look at it from the elder's point of view.

[msparticularity]

Thanks, barred_owl -- that is one idea.  I did bring it up with one of the social workers there and she did allow that they can handle issues where someone does not want to go back -- I just don't want to put her through a trauma, and one thing I've found is that it's so hard to know where she is --- she has little language left, so it's very hard to get any information from her.  But I will talk to the head nurse in her ward for some ideas.
Much appreciate the input!

The thing that strikes me is your comment that she has little language left. I tend to wonder if that might make taking her out more difficult--for you and for her. Clearly it would be beneficial to her to have pleasant experiences, but I also wonder if there might be things you could bring to her--perhaps favorite foods, or music, or clothing or blankets or something that would be soft, or anything else that would be sensory/aesthetic, but where the verbal difficulties wouldn't get in the way.

That said, when my grandfather was in a nursing home with Alzheimer's, I used to go pick him up and take him out for the middle part of the day with no problem. Like many others with the condition, he reliably had 5-6 hours in the middle of the day when he was quite lucid and his verbal skills were fine. His combative behavior and confusion were usually associated with the nighttime hours.

[jossi66]

Good thoughts, MsP, and certainly something I am wondering about myself.  It's hard to know what her reaction will be, but I hate to deny her a potential treat if she would be amenable. 

Her condition is not Alzheimer's but frontal lobe dementia -- a rather rare condition called primary progressive aphasia.  I'm no brain expert, but apparently it involves atrophy and deterioration of the frontal and temporal lobes.  She lost her language skills early -- writing, then speaking.  I believe she can still read a little, but not sure how much sense she gets out of it.  This is quite early onset, which is all the more difficult for the family -- she is not yet 60.

That nighttime combatativeness is sundowning -- typical of Alzheimer's -- but she does show signs of it, too, as do most of the residents in her ward.

Been quite an education, to say the least.