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 Finding an assisted living/nursing home 
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Joined: Fri Jan 13, 2012 11:59 am
Posts: 2
Post Finding an assisted living/nursing home
My father has advanced Lewy Body. He lives in Minnesota. He is generally confused but calm. He is typically medicated. However, on occasion he gets agitated. He was in an assisted living place and after a couple of incidents (they would call 911 and have him sent to an emergency room), they told us he had to leave. We found a new place - 2 hours away - and now we're seeing the same pattern emerge - he's generally calm but then gets agitated and they end up calling 911. We're worried this new place is going to ask him to leave. We're running out of options. Are there any good places that are familiar with Lewy Body and know how to handle disruptive behavior? Ideally, we'd find a place in Minnesota - but CT, Vt or NH are also options. There has to be some nursing home/assisted living place that has Lewy Body expertise? Thanks for any suggestions.


Sat Jan 14, 2012 8:17 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Finding an assisted living/nursing home
There are several good places in the Burlington - Shelburne, VT area. But first, have you exhausted all pharmacological choices? I live between the 2 and did a lot of research about moving my dad here 2 years ago. Lynn

_________________
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.


Sat Jan 14, 2012 9:10 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Finding an assisted living/nursing home
The answer for my husband was Seroquel. You might ask your father's neurologist about starting with a very low dose, if he isn't already on it. If he is, he may need an increase during the time he usually gets agitated. Not everyone can take it but my husband's neuro says it's the best-tolerated neuroleptic for LBD.

_________________
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 Jan 14, 2012 10:18 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Finding an assisted living/nursing home
If you are thinking about places in this area, let me know and I can send you the names of several facilities who have cared for the LOs of friends of mine. Lynn

_________________
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.


Sat Jan 14, 2012 2:58 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Finding an assisted living/nursing home
I suggest you call the Alzheimer's Association (get the local chapter info from alz.org) and ask for dementia care facilities that they recommend. It has to be a facility that is capable of dealing with someone with dementia.


Sat Jan 14, 2012 5:27 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Finding an assisted living/nursing home
Is your father in the Twin City area? That is where the most opportunities would be. And from listening to the caregivers in my local support group, the range of ability/willingness to deal with Lewy Body is all over the map. I don't think it is a case of there not being suitable places available -- it is more a matter of finding them.

I think Robin's idea is a great starting place.

Are you yourself in Minnesota? Joining a Lewy Body Caregivers' support group is another good option.

Good luck to you with this very challenging task.

PS -- trying to reduce or eliminate the troubling behavior with drug therapy also makes a lot of sense.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Jan 14, 2012 5:37 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Finding an assisted living/nursing home
I guess I should have spelled it out clearly that my friends' LOs who were in facilities that were very good were dx'd with LBD, PSP, CBD, FTD and AD. We also have a good memory center & palliative care org. who can be of great assistance in this journey, and the Dartmouth Hitchcock Memory Center is also about 90 min. from here. (in good weather, not today it's a little rugged driving today!) Lynn

_________________
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.


Sat Jan 14, 2012 5:45 pm
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Joined: Fri Jan 13, 2012 11:59 am
Posts: 2
Post Re: Finding an assisted living/nursing home
Thank you for the helpful responses. My father has had thorough treatment at the Mayo Clinic in Rochester, MN. He is on seroguel and other meds to control behaviors. The challenge has been finding a facility that provides enough supervision and awareness of triggers so that meds are used appropriately. Ideally, we would like to find a place near Rochester, MN as this is where Mayo is and his wife is. Our second options would be in Hanover, NH area or New Haven, CT where two of his children live.
It is becoming clear to me that we need to find a place that provides adequate supervision ( low resident: staff ratio) and skilled nursing care to administer medicines effectively. Also, we need him to be near family so we can be available to advocate for his care.
We are in a pattern where he is sent to the E.R. because of behaviors, is hospitalized and does better with increased supervision and good nursing care, sent back to memory care unit, supervision and nursing care decrease, behaviors occur, sent to E.R., repeat...

Any insights would be appreciated.

Kate (Charles' sister)


Mon Jan 16, 2012 8:56 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Finding an assisted living/nursing home
It seems that what he needs is a skilled nursing facility [SNF]. My husband is in a very good one and, though I continue to monitor his care and advocate when necessary, I am satisfied overall. Assisted living facilities [ALFs] and memory care facilities [usually just secured ALFs] don't provide enough hands-on care. I found this site to be very helpful: http://www.snapforseniors.com/.

_________________
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.


Mon Jan 16, 2012 10:52 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Finding an assisted living/nursing home
I believe there is a good memory care ALF/SNF in or near Hanover but I don't remmber the name. You can do an internet search and then see if you can find family members of LOs who are there and have similar issues and needs. Lynn

_________________
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.


Mon Jan 16, 2012 11:21 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Finding an assisted living/nursing home
Did you contact the Alzheimer's Association chapter near you? Many of the local chapters have websites that list "Community Resources" such as care facilities.


Mon Jan 16, 2012 12:45 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Finding an assisted living/nursing home
Also, contact the social worker in the neurology department at Mayo Rochester. Mayo certainly has a list of recommended local facilities.

Is that the ER your dad has been going to? If so, I'm surprised that the ER and neurology departments haven't communicated about this situation.


Mon Jan 16, 2012 12:48 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Finding an assisted living/nursing home
Oh Kate. Definitely contact the Mayo doctor who treats your father for advice on local care facilities!

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Jan 16, 2012 2:43 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Finding an assisted living/nursing home
Kate,

I'm in Minneapolis and have my mom in a dementia unit. I've learned a lot. Start with Medicare.gov for their grading system based on inspections that they do. Mom's in one that has one of the best places that I know of, but our budget has been limited by Medicaid.

Send me a private email at knapp@umn.edu and I'll send you my phone number. We can have a personal chat about what you need and what is available.

Another Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Wed Jan 18, 2012 2:22 pm
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: Finding an assisted living/nursing home
Kate:

I totally sympathize with what you are dealing with. We have had the same problem. My mother was asked to leave the last facility because she was having behavioral problems due to lucid dreaming (and yes she takes seroquel - lots of it in fact). She is in a memory care facility now in MI near my sister and my sister has had to hire nearly constant home health care in addition to the assisted living. My mother still causes problems and we still get non-stop calls. I have not yet had her in a facility that seems to know much about DLB. All the facilities that I have found that seem to have DLB experience are for folks who are much further along than my mother in the disease progression (my mother can be a mess in the morning, perfectly normal in the afternoon, and a mess again later in the day - she cycles like crazy and she is always demanding that people take care of her - nearly every minute is a crisis). The folks at her current facility have so far put up with her, but my sister and I intervene constantly, take them information on DLB (which they don't seem to believe all of the time), and hire the extra help. It has been really hard because we also can't find the right fit. I think it is important to be as frank as possible with folks at these facilities before the person goes in. It is my own sense that ALFs are balancing the needs of patients with the needs of keeping their costs down so that they maximize profits for their investors. They are often (even the best ones) minimally staffed (especially at night) and frequently the folks who work at them are burned out, tired, and overworked for really not much in pay. If my mother's nursing home insurance didn't cover her care at ALF or nursing homes only, I might just set her up in an apartment with 24 hr. a day home health care. I think that these facilities are not really set up to handle behavior problems that come with this form of dementia. I keep thinking that if I had investment money, I would start my own facility. Good luck.

Liz


Fri Jan 20, 2012 1:21 am
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