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 memory care unit vs assisted living + when? 
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Joined: Sat Jun 18, 2011 9:53 pm
Posts: 17
Location: Costa Mesa, CA
Post memory care unit vs assisted living + when?
Hi - I'm new. I've been reading and reading prior to posting. My 74 y/o Dad has been diagnosed with PD and LBD (tho I am not positive on the order of the initial symptoms). Been diagnosed with PD for 2 years but clearly (in hindsight) had symptoms for a few years prior - and LBD was diagnosed last week but he has not been 'right' for at least 5 years.

This may be a little scattered since I am pretty overwhelmed....

We are approaching a crossroads regarding his ideal care/living situation. I moved him down near me about 2 years ago due to his deterioration - he is living in a senior community where meals and linen service are provided. Dad just had a neuro-pych exam and performed fairly poorly but he does not see/acknowledge any cognitive discrepancies (or his right hand tremor!). Dad also just got diagnosed with cataracts and that will be treated after radiation treatments for his prostate cancer within the next month or two.

Sadly, it is not ideal to bring dad home to live with my husband and I but I feel he is understimulated and nearing the point where he needs more daily 'assistance'. It is difficult for him to change clothes (esp. his Depends multiple times per day) and he hardly grooms so I have hired help for showers and pill dispensing. I see dad daily for 1-3 hours but that is often used up in transit to/from appointments vs quality visiting time.

I'm trying to figure out the next step. I fear the cancer radiation may trigger a downswing and even read here about that happening following cataracts surgery.... Dad is totally apathetic and does not attempt to socialize where he lives and takes all meals via room service. I feel he is/has to be under stimulated but I work full time (tho for myself so my time is fairly flexible - but to a point) and can't be the social/activity director that I wish I could be. I would like to see him in a more stimulating environment but I'm not sure if he is ready to be plopped into a memory care unit just yet. I am interviewing (way in advance) two local memory care facilities and a 5-bed board and care next week just to get a feel for what they are all about but I'm sure Dad would resist such a change right away.

Dad is a fall risk and is nearly wheelchair-bound. He sleeps a lot during the day and has the constant runny nose. He occasionally sees insects and people sitting on the couch but they are not disturbing hallucinations. (He is one who had a bad reaction to clonazapam).

I'm starting to have near-panic attacks when the phone rings...... I also feel significant guilt about not moving him in here but my situation is not ideal with the layout of our house, our home business, our dog and the fact that my husband is also in his 70s (and very driven and they have some mild mutual animosity) - and I don't feel I have it in me to be a full time responsible caregiver but I am pretty decent at 2nd tier support.

I guess I'm trying to figure out what would be best thing to help dad thrive (as much as is possible). I could hire a more-encompassing nurse/care giver and try to keep him where he is as long as possible.... I think Dad would balk at moving to a memory care unit (I'm not even sure he has properly digested that he has LBD :( ) - he did fall the other day and was stuck on the floor for at least 45 mins so a more communal environment may be better - but how do I know when to make any changes?

I just got POA and medical PO/directive notarized yesterday - that is a relief to have that done and on hand.

I've just ordered 2 LBD books tho I have read nearly every page on this forum and also joined the Yahoo group in addition to PD support sites/groups. I'll attend my first LBD support meeting at UCI (irvine, ca) next Wednesday. This is all really sad....................... -jenna

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Jenna - daughter of Dad diagnosed in 2010 with PD and in 2011 with probable LBD. Symptoms were present for a few years prior. Dad is 74.


Fri Jul 01, 2011 8:31 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3369
Location: Vermont
Post Re: memory care unit vs assisted living + when?
Jenna - I think you are on the right track looking into additional care. It can never be too soon, as some of our LOs have suffered huge and irreversible declines literally overnight.
Not socializing as much as they used to is one of the characteristics, from what I have observed, of people with cognitive disorders. For a while they know that they don't communicate as well, may not recognize people they should, can't find the right words, etc. and they are embarrassed about it. So, they pull back from social situations so they don't get frustrated and/or embarrassed.
Even when they are are in wonderful ALFs with lots of activities, like my dad was, they may choose to do few or no activities. My dad used to be Mr. Sociability. About a year before his big decline I noticed he was way less social than he had always been. By the time he moved into the ALF (3 weeks after the big decline) he wanted little to nothing to do with other residents or activities there. He was happy to see his relatives and old friends, but refused to visit even former friends who lived in the ALF. It was shocking to us.
If you are already noticing more frequent falls and lots more day time sleeping, he may need additional care very soon. A memory care center that meets your criteria may be just what he needs some time soon. Once their mobility, ability to transfer, and more frequent falls occur, more care is necessary. I think you'll be glad you came up with reasonable alternatives before it becomes mandatory. If you have several choices in your community, visiting them all and getting your questions answered will give you more peace of mind, I think. Good luck, 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.


Fri Jul 01, 2011 9:00 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: memory care unit vs assisted living + when?
My two cents worth: The best value, in my opinion, is an Adult Family Home [that's what they are called here in WA--there may be other names for them]. Typically, they are limited to six residents. The advantages are that there is more individual attention and the costs are more affordable. The disadvantage is that they usually don't take Medicaid, so when you run out of money you will have to move him. Dementia care units vary a lot and some will not take residents who are not ambulatory and will often raise the monthly cost every time there is more assistance needed. In this respect, they are like Assisted Living Facilities. Some dementia facilities take Medicaid and some do not. My husband was in one for a few months when I was selling the house and moving. He was walking then. If the residents were unable to get around independently, on foot or by wheelchair and independently transfer, they must be moved to a skilled nursing facility. My husband is in a SNF because he requires more medical intervention than the other facilities can provide. He also gets daily restorative therapy services there. I found the following site very helpful in sorting out the various options in your area and listing their requirements and payer systems: 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.


Fri Jul 01, 2011 9:14 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: memory care unit vs assisted living + when?
Another factor I forgot to mention is behavior. My husband had/has behavioral issues which many of the local AFH facilities would not accept. He was kicked out of another nursing home for 'behavioral issues'. So it's important to know what criteria must be met. After all, they have the safety of their staff and the other residents to consider. Where he is now, there is a large staff to intervene.

_________________
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.


Fri Jul 01, 2011 9:24 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: memory care unit vs assisted living + when?
Jenna,
Welcome to the forums, sad that you need them. There is a much to be sad about in this illness but there are still some good things to enjoy, small but they are there if you look hard enough. You are doing great with reading up on the illness, attending a support group , these are things that will help you along this very rough road !

Good Luck!

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Irene Selak


Fri Jul 01, 2011 9:25 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: memory care unit vs assisted living + when?
Chances are good that your dad will never properly digest that he has Lewy Body Dementia.

What about moving him to an assisted living facility that has a memory care unit attached such that if he needs to move again (due to symptoms that are disruptive to others) the move won't be so traumatic?


Sun Jul 03, 2011 11:45 am
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Joined: Sat Jun 18, 2011 9:53 pm
Posts: 17
Location: Costa Mesa, CA
Post Re: memory care unit vs assisted living + when?
So ... I am now slightly more educated after touring several places larger and smaller over the past few weeks.

First I thought we wanted/needed a larger, more-inclusive place - then people mentioned board and care houses. I visited a b&c that I liked nearby and put my name on the wait list THINKING it would be months...but the day or next after that tour, they had a sudden change and it is now available (I have to call her back today). I called my mom-divorced from dad for 35 years- (as my husband was staying neutral), and she thought the idea of a shared bathroom was undignified since my dad is incontinent and gets the seat dirty every time since he can't reach his hiney) nor did she like the idea that he would be confined to a bedroom if not competing for a tv channel choice in the living room. So I had decided to look more seriously at a studio at the larger place I liked (= across street from Dad's neuro, dentist AND GP) as of last nite.

HOW DO I DETERMINE WHICH TYPE OF PLACE WOULD BEST SUIT MY DAD based on the above details and that he will likely stay in his room most of the time anyway????? Dad does not yet need lock-down memory care but assisted living and more structure would be good.

I need to back off and take more time - not going to use respite care after all for my trip if I mentioned it in this thread since Dad seems to be doing better on Exelon --- altho I 'could' use the larger place I like for the respite care as a trial run.... I need someone to tell me what to do and that person does not exist, dangit.

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Jenna - daughter of Dad diagnosed in 2010 with PD and in 2011 with probable LBD. Symptoms were present for a few years prior. Dad is 74.


Wed Aug 03, 2011 6:00 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: memory care unit vs assisted living + when?
You know, I think being incontinent is undgnified no matter where you are. Presumably the staff at any place you are considering deal with it matter-of-factly, and bathrooms are kept scrupulously clean. Or so I would assume. Is your dad likely to enjoy walking around a larger building, participating in group activities, doing a jigsaw puzzle in the atrium, etc? Or is he likely to stay in his room most of the time? You probably know him better at this point than your mother does. Does the small setting have a nice yard, patio, porch, etc?

Which setting would you rather spend time in? Why? Think of how your dad is like you and different from you. Would your reasons likely match his?

I am so sorry you are needing to make this difficult decision.

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


Wed Aug 03, 2011 10:06 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3369
Location: Vermont
Post Re: memory care unit vs assisted living + when?
Jenna - I think if you make a list of the criteria you think are important, put them in rank order, and figure out which are "absolutes" and which are "optionals" you will come up with your own decision about what to do. Your list can include everything from: "It must be safe and clean", "the staff must be well trained" to "it's nearer my house" or "it's more affordable so if my LO lives for several more years we can pay for it", etc. Really, you need to write down what are the most important things and go from there.
If you have the option of visiting several facilities, you should do so. They can really vary and some just simply "feel" better than others intuitively. Also, look up the ratings of the places you are considering the most.
Good luck! 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.


Wed Aug 03, 2011 10:10 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: memory care unit vs assisted living + when?
ive not gotten there yet and i appreciate you sharing what you are going thru... is it possible that the b and c will have another opening soon?? the idea of using the other for a respite.. sounds like a great idea... that way you are not feeling rushed to leave and at the same time rushed to make a decision that youre not comfortable with yet... and have to move your dad again because its not the right one.. this way you will have some breathing room and also a little time away to sleep in it.. with having your dad in the respite you might be able to get abetter idea which one is best, after seeing how he does..

good luck
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Wed Aug 03, 2011 11:28 pm
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Joined: Sat Jun 18, 2011 9:53 pm
Posts: 17
Location: Costa Mesa, CA
Post Re: memory care unit vs assisted living + when?
This has been eating me up.... I awoke at 2 am last nite and was up all nite worrying about what to do and when... <ugh> Also, Dad got upset after dinner and called me over in a panic but there was really no 'real' crisis when I got there - that sort of set the stage that I wanted to do something sooner or later - so I emailed the home manager at 2am and asked a few more questions and when she called back this morning, I committed to the board and care. Currently there is another PD man close to Dad's age, 2 women that seemed pretty advanced in their illnesses and another woman who I was told was 'alert'....

I feel so relieved to have a direction and hopefully it will be some structure for my dad which he has been totally lacking.... Dad would NOT go do a puzzle in the atrium or venture out to socialize at tea time but I do believe/(hope) he will bond with a small group of people. The staff has been trained by the local Alzheimers Assoc (thru whom I attend support group meetings) and the owner's father had/has Parkinsons!!

_________________
Jenna - daughter of Dad diagnosed in 2010 with PD and in 2011 with probable LBD. Symptoms were present for a few years prior. Dad is 74.


Thu Aug 04, 2011 1:31 pm
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Joined: Mon Jul 11, 2011 11:46 pm
Posts: 17
Post Re: memory care unit vs assisted living + when?
Happy Puppy,
Glad to see someone out there with a very similar situation as mine. My mom is 72 and was diagnosed in summer 2010 with PD and March of 2011 with LBD. However now that I understand LBD I realize there were strong symptoms of it over 2 years ago. Mom is in assisted living in a really nice senior living community now, 20 min. from me. She is still in what I would call an early stage but in the last few weeks her confusion is getting a bit worse. She is fine with all her ADLs so can take care of herself pretty well. I see her 1-3 times a week depending on how busy my work week is. I've been worrying lately about what will happen when she is in kind of a "middle" stage...not socializing anymore, confused a lot, but not ready for the memory care unit (which is in the same building.) My husband works from home so if we moved mom to our house he would end up being the caregiver during the day which he really does not want to do by himself. I work full time and am bringing home most of the bacon right now - ha - so cannot see quitting my job.

Reading your post has convinced me that I need a tour of the memory care unit at her place ASAP to find out what it's like and find out when people usually move in there from assisted living.

When you have time give me an update; would love to hear how your dad is doing.


Fri Nov 18, 2011 5:14 pm
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: memory care unit vs assisted living + when?
The details associated with this disease are overwhelming. I'm glad you've finalized your dad's living arrangements.
I'd like to bring up something else to think about: You may wish to consult with his oncologist, radiologist, and neurologist about the radiation treatments. I've been through chemo and radiation, and found radiation the more challenging treatment. It leaves you progressively more tired every day, and causes painful burns on your skin which might be frightening to a Lewy patient. Consider the advisability of proceeding with this treatment carefully. It might be very hard on a Lewy patient. I hate to add to the list of things to think about, but we all must make decisions for our LOs, and the more info, the better the decisions.
I also urge you to consult with your own doctor about ways to ease your stress. You can't help your dad if you yourself collapse from lack of sleep and other products of stress.


Fri Nov 25, 2011 3:08 am
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