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 Decision time re dementia care placement; thoughts? 
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: Decision time re dementia care placement; thoughts?
Yes, and it understandable that they want to be their old normal selves!

Julianne


Sat Jul 14, 2012 5:24 pm
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Post Re: Decision time re dementia care placement; thoughts?
Hi friends,
This has been a really helpful discussion! They are indeed in a tiered facility, and I think there may be some incentive at the management level to keep the higher-revenue positions filled (and my parents have a very nice 2-bedroom AL unit, for which there was some demand - maybe they think they could downsize my dad to one-bedroom, get the revenue from that and the special care unit.) But I don't think at the nursing level that this is the primary motivator. I live here in town, see my parents every day, and know most of the nursing staff by now (they have lived in the facility 8 years now, independent living until 2 months ago but with a couple of stays in SNF following hospitalization, so I had a chance to observe.)

Their dementia care unit is actually pretty good, well staffed, lots of activities, and patients are well cared for, from what I can see, and from reports from a local med school colleague of mine who is a very senior social work person and has been brought in to do workshops with staff. There are occasional glitches, usually around either weekend coverage or staff turnover, though the people I know best have been here a long time.

The real concern is that I don't think my mother needs that level of care, nor would it be good for retaining what function she has. The daycare idea, that several of you have echoed, makes a lot of sense to me. By a happy chance, one of the staff from the local adult care center, which has a very good dementia program as well as mild cognitive impairment and also a group for those who just need more physical care, was at the weekend program today. She has observed my mom over the last year (2 Saturdays a month) and was happy to give me some feedback, and also to pay very close attention during the day and comment on how my mom did. She thinks it is really way too soon for dementia care, and feels the daycare would be a very good option. In fact she told me that three of the women my mom knows from the Saturday program go there during the week. The weekday program has more therapy activities than the Saturday, which is mostly a respite for family, with games, a walk, some music, lunch and a couple of snacks during the 5 hours.

So my plan now is to talk to the head of nursing and find out her thoughts, but to recommend that we get my mom enrolled in the weekday care, as many days as my dad thinks useful and my mom can tolerate. They even provide transportation!

I also had a chance to probe my dad's thoughts, when I took him by himself to his beloved Dollar Store while my mom was in respite care. I asked about his talk with Jean, and noted that she had said they had discussed dementia care unit, and asked what his thoughts were. He volunteered that he thought it would be a disaster for my mom at this point. So even though he is very worn, and does need respite, that doesn't seem to be his preferred option. He was open (much more than last time) to the daycare idea, so I will try to move forward. At least we can give it a try... Nights are less of a problem now, since the increase in seroquel to 25 mg, and going on Namenda (not fully titrated up there, but getting there.)

Thanks for all the good advice!! It sure helps to hear from folks who have been there, whether as children or parents. I want to understand my dad's perspective, too...
Laurel

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


Sat Jul 14, 2012 7:45 pm
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Post Re: Decision time re dementia care placement; thoughts?
Actually I think the day care is a better idea because if it doesn't work you could do something different but if you moved her to a dementia unit that might be harder to undo, I am glad you spoke wth your dad and he seems to be on board with having to do something in the way of respite.

Good Luck with all of this, lots of tough decisions!

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Irene Selak


Sat Jul 14, 2012 10:02 pm
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Post Re: Decision time re dementia care placement; thoughts?
I agree with all of you, that from the sounds of it, moving your mom to a memory care unit at this point does not seem very wise at all. Maybe in the future, but maybe not then, and a day program is a great opportunity if there is one nearby with reliable transportation for getting her there.
Even at my dad's worst, when the decision was made that he had to eat his meals in the memory care unit, his depression and frustration increased a lot, and this is also when he would shift himself out of his wheelchair to fall on the floor so they'd take him back to his room. He was miserable even eating there because he was so much higher functioning that the rest of the folks there, he knew it, and it was so awful to have to explain why he even needed to have his meals there. Thank goodness the nurses fought hard to keep him in his own room except for meals. It was extremely depressing to even be with him during a meal and it was obvious that he just didn't fit in except for the fact that he needed so much help with eating AND he had become disruptive in the regular dining hall.
I hope the day program works out well for everyone. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Jul 17, 2012 11:51 am
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Joined: Thu Apr 21, 2011 9:07 pm
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Post Re: Decision time re dementia care placement; thoughts?
Progress here: I have had a good meeting with the AL head nurse, who is very bright and very compassionate. She has arranged for my dad to have respite available at night if my mom has an extremely difficult night (restless, refusing to sleep, trying to go out of apartment in nightgown and wander around.) Unfortunately the first night that he tried to call for help, a few days ago, he got a staff person who did not know about this plan and told him there were no beds available in the supervised areas. But that has now been fixed. Of course all this would happen when I was in DC for a couple of days for an NIH meeting. And my dad had to go to the doctor for some sort of ear problem that turned out just to be the world's largest concatenation of earwax, probably museum-quality, but my daughter dropped everything and came to stay with my mom for an hour, bringing the 3 and 8 year old kids along.

We are also in the process of arranging for daycare (it takes a while to set up the visit/ evaluation, and a schedule, but it will happen.) I think it will help that my mom knows 3 women who go there, and one of the more experienced and senior staff.

Meanwhile, the nursing staff has taken over giving her meds, and that is a big help and relief for my dad, and even for me - I will no longer have to worry about keeping things ordered - I didn't mind doing that, but now I can devote more of my visit time each day to caring for them and reassuring them and listening to concerns.

So for the time being, my mom is safe from the confines of the dementia care unit, my dad is getting more help, and I'm watching, warily...
Laurel

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


Thu Jul 19, 2012 10:26 pm
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Post Re: Decision time re dementia care placement; thoughts?
Laurel,

Sounds like progress has been made, there is always a glitch or two when trying new things but I am sure it will all work out, Glad your Dad is getting a tab bit of help! Help with meds is a great help in itself, I would be worried sick if it were me with my 90 something parents! I know you are doing everything you can to help them, your a good daughter and I am sure they know that too !

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Irene Selak


Thu Jul 19, 2012 10:33 pm
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Post Re: Decision time re dementia care placement; thoughts?
Wow, Laurel! That sounds like a plan! :P Hope the day care goes well!

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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.


Thu Jul 19, 2012 11:15 pm
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Post Re: Decision time re dementia care placement; thoughts?
Back on line finally - we have been cuckoo busy!

The day after my dad told me that my mom needed to go to dementia care, he told me he had been up all night, and he now thought it was a really bad idea, and he wanted to see what alternatives we could find. I worked with my neurologist colleagues to tweak her meds, and with the AL people to get more help for my dad, and things have settled down again.

My mom is doing somewhat better, sleeping better and not wandering off in search of food. I think the combination of titrating up on namenda and getting the seroquel at the right dosage 2x per day has done the trick, at least for now. We finally scheduled evaluations for day care, as a respite option, over my father's objection that it will be "too complicated". Once that's set up, she can go - or not - as seems to work out best to help them.

My dad is also making more use of the Assisted Living resources - he calls for help sometimes, and he has gotten to know their usual care people and really likes them. He still grumbles about occasional glitches in the schedule, but he's accepted the idea that he just can't do it all. I go over most days around dinner time, and take them to dinner and get my mom settled and get her food. That way they can eat in the regular dining hall, which they enjoy - more selection - and they eat breakfast and lunch at the AL dining or sometimes in the deli.

Interestingly, he told me a couple of days ago that he knows 4 or 5 people who are really struggling, either with their own disabilities or with caregiving. "I don't know," he mused, "why they don't move to assisted living - that would help them so much!" (As our Latin teacher used to say, mirabile auditu.)

So our up-and-down trajectory is up a little, at least for the moment...
Laurel

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


Tue Aug 14, 2012 10:45 pm
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Post Re: Decision time re dementia care placement; thoughts?
Laurel, I'm so glad to hear things are settling down with your parents! :P

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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.


Tue Aug 14, 2012 11:50 pm
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Joined: Sun Jun 24, 2007 5:35 pm
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Post Re: Decision time re dementia care placement; thoughts?
This is good news, Laurel. Sounds like your team efforts are paying off for both your parents and for you!
Hats off to you!
Pat

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Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Tue Aug 14, 2012 11:58 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Decision time re dementia care placement; thoughts?
Laurel,

I am glad things are a bit better for all concerned ! I hope it keeps up and everyone falls into their own routine !

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Irene Selak


Wed Aug 15, 2012 12:56 pm
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Post Re: Decision time re dementia care placement; thoughts?
Sounds like lots of positive things going on Laurel. Great job! Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Aug 17, 2012 7:41 pm
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