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 Decision time re dementia care placement; thoughts? 
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Joined: Thu Apr 21, 2011 9:07 pm
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Post Decision time re dementia care placement; thoughts?
My parents have been in their assisted living apartment just two months now. More help, three meals a day provided, CNA's come several times a day and give my mom her meds, pick out her clothes for the day, and make sure that she takes a shower. But it seems that it may not be enough help for my dad. I've talked with the head nurse, a smart and compassionate person, several times in the last couple of days. Today, she left me a message that she wants to talk about whether it is time to move my mother to dementia care unit. (All in the same facility, but this would be a locked unit.) She is worried about my dad, and he is saying he can't cope any more.

My mother is probably in moderate stage. Her executive function is poor, but she can manage her basic self care reasonably well, especially if prompted. She is in depends in case of accidents but generally goes to the toilet on own initiative, just fine (and the CNA's deal with it on rare occasions when, say, sheets need to be changed despite the pad.) She feeds herself, brushes teeth, and so on. Her language is excellent, though her hearing is poor and she tends not to initiate conversations, but she will respond articulately. Her short-term memory is relatively though not completely spared. Visual perception is quite distorted, so she can no longer really read or watch TV, mostly sits in her chair and dozes.

One big problem for my dad are her restlessness and his feeling that he can never safely leave her alone. She will leave the apartment, but always for one of three places: the big dining room, the small one for assisted living, or the deli. (She gets confused on time, though if i'm there and prompt her to look at the very nice digital clock I got with HUGE numbers, she knows it isn't time for a meal yet.) Then my dad panics and sends everyone to look for her, though the obvious thing is to check the same 3 places as that's where she goes, never outside or away, she just gets hungry I guess, despite food in the apartment.

Her delusions have been well controlled by seroquel (25 mg 2x per day), provided it actually gets into her - when my dad was giving her meds, though, she would occasionally drop one and no one would notice, because it was the smallest of the pills. The last episode was a week ago - she told him she couldn't use the bathroom because there was a dead body on the floor and there had to be a police investigation. He freaked out. I looked for (and found) the dropped seroquel, when I heard about it. So now the CNA's have taken over, and we should be safe from dead bodies.

He's 96 and she will be 96 next month, but she is in better physical health - they both get around well with walkers, but she's faster and he is starting to get wobbly. He is also starting to show some very mild cognitive impairment himself, though generally he's pretty good. He is clinically depressed but declines to take medication. So we can expect issues to arise.

We are lucky that they have great nursing care on call, and the option of dementia care, even part time if needed. The real question, though, is whether this is the time. If it were left to me, I'd try more respite care - daycare? (we have a good program available 5 days/wk) - some overnight breaks? - but I'm really torn. Full dementia care in a locked unit would be like going to prison for my mother, who is still physically reasonably capable, articulate, in tune with what's going on in the world to a large extent, and suffering already from the sense of being a burden and cut off. But my dad, never a particularly skilled or interested caregiver, though he is loyal and tries hard, is suffering, too, and I can see him becoming more frail each day.

In the end, the decision is my dad's, but the staff involve me heavily as I live and work just a few minutes away, come every day, work in dementia research, and have all the various medical and legal POA stuff.

Thoughts from those of you who have been there? Wisdom? Advice? What to think about?
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Sat Jul 14, 2012 12:44 am
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Post Re: Decision time re dementia care placement; thoughts?
Although I have not experienced your dilemma exactly, it seems to me that such a change might make both their situations worse. It does depend a lot on the dementia facility. Some have little more to offer than a secure unit. Derek was in one for about three months in 2009 [during our move] and the staff was less competent to deal with dementia than is that at the SNF where he is now.

I recall that one of the forum members hired extra help for her mother when she was in an ALF. And maybe, with your mother's medications being better monitored, her behavior might be better controlled and your father less anxious.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jul 14, 2012 1:03 am
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Post Re: Decision time re dementia care placement; thoughts?
Laurel,

Maybe it would be enough if your dad just had some respite in the form of daycare for your mother so he was not responsible for her constantly. Seems like a locked ward for your mother is a rather extreme step.

Julianne


Sat Jul 14, 2012 9:18 am
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Post Re: Decision time re dementia care placement; thoughts?
Laurel,
I like Pat haven't dealt with the dementia with a parent but I guess if it were me I think I would want to look into more Day programs but I do have concerns for your Dad for the nights with the worrying , Maybe the AFL can explain more why they think a locked dementia care would be best fo your mom, I often think that facilities want to do whats best for them not always whats best fo the resident.

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Irene Selak


Sat Jul 14, 2012 10:01 am
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Post Re: Decision time re dementia care placement; thoughts?
Heres another factor: If a dementia unit is part of a tiered care facility, there is financial incentive to move patients to the higher care level.

Irene, I'm sure many facilities are as you state but there are those that do put the resident first. The Eden Alternative SNF Derek is in has that philosophy. While it is far from perfect, I have observed that residents' wishes and well-being are their prime concern, without exception.

Here's an article about Eden Alternative: http://www.edenalt.org/

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jul 14, 2012 10:26 am
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Post Re: Decision time re dementia care placement; thoughts?
Pat,
I know you did your homework when it came to Dereks placement and I am not saying all facilities are out for their own rewards but it is for sure something to be careful with and honestly I think even more so when it is a child looking for placement than a spouse. We put way to much trust in people when it coms to our LO's, just my .02 worth and I think before big decisions are made it really should be carefully investigated as you mentioned earlier what would be the effects of such a move and seperation for 2 people in their mid 90's.

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Irene Selak


Sat Jul 14, 2012 11:58 am
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Post Re: Decision time re dementia care placement; thoughts?
Pat and Irene,

You surely are not imagining things. Friends and clients of mine have had experiences with their LOs in tiered facilities where they had to fight the facilities' efforts to shift their LOs to higher levels of care than were necessary, and the facilities' financial ambitions appeared to be the issue. In any case, regardless of the type of facility, it is so important to keep tabs on what is going on, even in a quality facility, though it can be exhausting.

Julianne


Sat Jul 14, 2012 12:31 pm
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Post Re: Decision time re dementia care placement; thoughts?
IMHO, the the places that treat the residents well are a lot like Walmart: The customer is king but the staff gets the shaft. That's the biggest issue I have with Derek's place. The staff are, by and large, wonderful, caring people and are underpaid and overworked. I guess the overall state of the economy and their limit of options make it necessary for them to stay--for which I am grateful--but I advocate for them, as well as my husband, whenever I can.

I agree about the doubtful wisdom of moving people in their 90's. A close friend moved her mother of 92 last month into an ALF and she died a week later. Not my friend's fault--there were good reasons she had to move her--but the change was a traumatic event for her mother and she did not have dementia.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jul 14, 2012 12:36 pm
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Post Re: Decision time re dementia care placement; thoughts?
Pat,
I agree 100% about the workers, many do get the shaft and they have to follow protocol, I was one of those workers for the state many yrs ago and there wasn't a day that went by where I felt I didn't do enough or should have done more for the people not the facility, we were no allowed to stay past our reg hours and if we did we were trouble.

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Irene Selak


Sat Jul 14, 2012 1:07 pm
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Post Re: Decision time re dementia care placement; thoughts?
Irene, it is sad that the facility employees must follow protocol and you couldn't stay as long as you felt necessary, but of course the facility had wage and hour laws to follow and probably couldn't afford to pay you overtime as likely was required if it ran into overtime.

I am continually impressed with the dedication of the employees at my mother's SNF. I doubt I would last more than a day doing their jobs.

Julianne


Sat Jul 14, 2012 1:20 pm
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Post Re: Decision time re dementia care placement; thoughts?
Julianne,
It is indeed a hard job ! So many don't have families that visit on a reg basis and for so many residents the workers are often their only contact with the outside world. :cry:

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Irene Selak


Sat Jul 14, 2012 3:39 pm
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Post Re: Decision time re dementia care placement; thoughts?
Irene,

That's true here, too. The DON has told me that some residents never have visitors. Fortunately, the staff is very kind so maybe they become sort of like family.

Julianne


Sat Jul 14, 2012 4:16 pm
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Post Re: Decision time re dementia care placement; thoughts?
In Derek's SNF, residents are never left alone in their rooms if they can possibly come out [although the residents are never forced to do anything]. There are several common areas where they are 'parked' so they can be a part, even passively, of what's going on. It's good for them and helpful for the staff to keep an eye on them. There is very little communication among the residents, though. I've often wondered why this is. Those who are 'short stay' residents, who don't have dementia, often visit with their roommates and others but most, I've observed, might talk with the staff but seldom with the other residents.

I'm sure this is different in an ALF, where the residents are less debilitated.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jul 14, 2012 4:29 pm
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Post Re: Decision time re dementia care placement; thoughts?
Pat, in my mother's SNF, I have noticed a similar stratification, if you will, among residents of different cognitive conditions. The short-term, non-dementia residents and early dementia residents converse among themselves, with visitors or with staff, but not with the more progressed dementia patients. And there is no conversation among the more progressed dementia patients.

When my mother was first there, of course she was much more capable of conversing but she would have nothing to do with any of the other residents. She was happy to chat but only with staff, and she particularly avoided like the plague anyone in a wheelchair. She also refused to participate in the activities. I almost got the feeling that she felt like interacting with the more progressed dementia residents or wheelchair-bound residents meant that she was "one of them," and she was clearly terrified of that. She missed out on a lot, and now she is beyond the ability to do those things. It's very sad.

Julianne


Sat Jul 14, 2012 4:41 pm
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Post Re: Decision time re dementia care placement; thoughts?
I think there is something to that, Julianne. I know Derek does not, even now, see himself as one of 'them'.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jul 14, 2012 5:21 pm
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