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 Time to place him in an ALF? 
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Time to place him in an ALF?
I went to my MD re some troublesome symptoms I was having. After questioning me a bit about my hub's current condition, she told me if I didn't place him in dementia care she would probably be admitting me to the hospital in six months. so I took stock of what I do for him, and realized how big a physical and mental impact caregiving isI never get unbroken sleep anymore, I'm constantly working around a 250 lb person who requires lifts out of the chairs and repositioning in bed. My back and knees are starting to hurt despite the best lifting practices.he's always unhappy and it's always my fault. I think she's right! It is no help to my dear husband if I ruin my own health and then have to institutionalize him. So I'm asking all my cyber friends, how do you choose a nursing home? I have a list his doctor made out and I'm going to visit. What questions did you ask, what did you wish you'd asked?
We live in a large city.
Thanks for your help!


Sun Apr 01, 2012 6:48 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Time to place him in an ALF?
I found the following website handy for locating facilities: http://www.snapforseniors.com/. Make a list then tour the facilities of interest. Proximity is desirable because you will need to be very involved in your LO's day to day care. One important question is: What behaviors or physical decline might require him to be moved to a nursing facility? In a progressive illness like LBD, you'll want a facility that will keep him through the terminus of the disease. Find out if they take Medicaid because, unless you are very wealthy, you will probably eventually need it [Medicare does not pay for long-term care]. Long-term care insurance pays for some types of facilities.

At the facility itself, observe how the staff speaks to the residents. Patience and an attitude of respect are important. Observe general cleanliness and smell. Look for the range of activities offered for every level of ability.

I have friends whose husbands are in Adult Family Homes, which can be a smaller, more economical alternative with a more intimate setting. If your husband requires a two-person transfer, make sure there are always two staff available.

No facility is perfect and you must maintain constant vigilance, asking questions and staying on top of your LOs care. Hope you find a nice setting. It's a hard decision to make but you know when you just can't do it any more, as my back still reminds me.

_________________
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.


Sun Apr 01, 2012 8:21 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Time to place him in an ALF?
Pat's already given you some great advice, and the 1 other thing think I can think of that would be helpful is to get a notebook, write down questions that you need answers to, and ask those same questions at each facility where you meet with an administrator. Then you can review the pros and cons when you are at home and get a sense of which one meets the greatest number of your criteria.

Sometimes just walking into the place will give you immediate feedback of "no" before you ever even speak with someone! BTDT at one NH/Rehab facility between my dad's hospitalization and moving him to the ALF.

Consider yourself very lucky if you have several choices. Many of us whose LOs live in rural areas have little or no choice intheir locale, so take a little time and visit the places that perhaps friends have recommended and look at their on-line ratings. Good luck. It takes some work but will be well worth placing your LO in the facility with the best fit. 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.


Sun Apr 01, 2012 9:08 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Time to place him in an ALF?
Great idea, Lynn, about the notebook. I used one, too. Still have all my notes. One other thing: I would be a little concerned if a facility has too many managers. These are often the ones that spend less on their floor staff and pay themselves high salaries. Just my observation. Oh, and don't be put off by someone repeatedly yelling 'help, help'. There's usually one in every facility. ;-)

_________________
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.


Sun Apr 01, 2012 11:49 am
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Joined: Tue Aug 24, 2010 1:45 pm
Posts: 35
Post Re: Time to place him in an ALF?
Hello Challenged,
I recently went through this process in deciding to place my Tom in a care facility in January--I could not bear to let him go before the holidays, but after seeing his decline(and mine) the family and the doctor were adamant. It was truly the saddest and most difficult decision I've ever had to make!! I'm still learning to deal with it. We, too, are in a fairly large metro area with seemingly many choices. However, once you start looking, you may find there aren't that many. After scanning the online lists (which feature health ratings, recommendations, etc.) I started making calls about availability. Most highly rated facilities were continuing care communities which don't take outsiders. The others were full or had waiting lists. In all, I found two--a dementia care facility very nearby and a NH/rehab about 30mins drive. The NH was beautiful, highly rated and provided great facilities for mobile ALF patients, but did not segregate the dementia care patients from those with extremely debilitating conditions or those on life support, which "I" found depressing since most dementia patients remained in their rooms.
I selected the dementia care facility which is literally 5mins. away. The choice was quite a story in itself.
Needless to say, the dementia care facility has it's own set of issues. It is much more inclusive. Patients are routinely moved from their rooms to the community areas (Tv/family room, craft room, dining rooms, secure outdoor patios, etc.) which gives the facility a more homelike atmosphere. However, since everyone there has dementia in some form and in various stages the atmosphere sometimes becomes volitile. While the staff does it's best to monitor the situation(this is when selecting a facility with a high (trained)staff to patient ratio is optimal)I have more than once been glad I was there for Tom when a bad situation occured. Also, I don't know the age of your husband, but Tom just turned 64 and is the youngest resident there. Most of the folks are in their 80s and 90s which is sometimes hard for him. Plus, most of the residents are placed by their children not spouses and their visits are sporadic. This creates another strange dynamic since I try to visit everyday at various times to get to know the staff.
I can't agree more with other's advice to fully investigate ALL costs. The baseline cost for placement does NOT include extra care like two-person assist which is calculated "individually" for each need like, dressing, bathing, eating, and rapidly adds up. Also, depends, bathing and grooming needs, haircuts, mani/pedi (unless you can do it), meds., Dr. visits, etc. Tom's total care has quickly escalated to well over $8K per month!!! And, beware entering Hospice too soon. That cost me $5,500... but that's another post.
For me, I still can't believe how difficult and yes, dangerous, my caring for Tom had become. And yet, I still felt like "I" could handle it. But, it really wasn't about me. Thank God nothing terrible happened. And now that I see the calm, gentle way multiple caregivers are able to help Tom so easily, I realize the 24hr. stress we were under was not "healthy" for either of us. This is such a complicated and heart rending decision you really should consider your LOs and trusted others objective observations concerning both of you.
PS You don't know how bad you REALLY feel until you feel better! Wishing you the best, Kathy

_________________
Kathy, 63, wife & caregiver of Tom, 64 dx 2007 (later stage) lives in dementia care facility in Durham,NC


Sun Apr 01, 2012 1:32 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Time to place him in an ALF?
Kathy,

Thanks for your interesting post. I look forward to learning more about how hospice can cost the family something.

I think the add-ons that you experienced are specific to some assisted living facilities. You don't see these sorts of add-ons in a nursing home, where it is assumed everyone is a two-person assist. In fact, in some states if you are a two-person assist you must live in a nursing home, not assisted living.

Robin


Sun Apr 01, 2012 3:13 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Time to place him in an ALF?
If you are placing a LO in an ALF, DO ask about the extra costs. I had no idea that we would be charged additionally for things like : Depends, disposable waterproof pads, bandaids and dressing changes. The first couple of months we had literally hundreds of dollars each month charged just for the Depends. We started buying Walmart or Costco brands which were much, much cheaper AND telling the CGs not to change them when they were perfectly clean. (dad would insist he be changed about every 1/2 hour for a while so they were tossing perfectly good Depends until we found out why the cost was so high and what was going on)
Also, you may need to ask about your LO receiving supplements like Ensure if/when your LO cuts way back on eating and drinking and has subsequent untintended weight loss.
There are many, many things to think about, but it's important to not get overwhelmed in the beginning when you have a lot to deal with. And, you can come back here any time and ask more questions as the need arises. 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.


Sun Apr 01, 2012 4:06 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Time to place him in an ALF?
While a SNF [skilled nursing facility] like my husband's doesn't add costs for extra care, we were charged for every glove, bandaid, etc. Since his catheter supplies were so expensive, I bought them online. Now that he's on Medicaid, they pay for the supplies. Our out of pocket costs--not counting medications--was $8k/month for over a year. But he needed the extra care and I reasoned that, at least, a SNF would have to keep him when he went on Medicaid. I didn't want to have to move him. As others have pointed out, ALFs will sometimes even charge extra if the resident spills food on the floor or gets their clothes dirty often. I'm not kidding. Some of the biggest ripoffs I've encountered have been big, fancy ALFs--usually part of a chain. So beware.

_________________
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.


Sun Apr 01, 2012 4:39 pm
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Joined: Tue Aug 24, 2010 1:45 pm
Posts: 35
Post Re: Time to place him in an ALF?
Robin,
With regard to Hospice and the $5500...within a few weeks after Tom was placed, he developed a painful sore on his rear which was determined to have been caused by sitting too long in an ill-fitting loner wheelchair and lack of adequate bath care by the staff(which was undergoing a supervisory change.) Needless to say, I was furious. And following the suggestion of Tom's Dr. and other friends, I quickly enrollled Tom in Hospice to ensure increased individual care and more eyes on the situation. Unbeknownst to me, at that time the facility had requisitioned a custom wheelchair for Tom and made arrangements with our insurance to cover it. I learned later that by going with Hospice when I did the custom wheelchair would not be covered (not even partially)-and that even though Hospice promised to supply a wheelchair, it would only be a basic one. My choice was whether to opt out of Hospice-even though they were providing Excellent (needed and paid for) additional care-then hope that Tom could re-qualify quickly so I could try to re-order the wheelchair through insurance coverage (which could take months) OR keep Hospice and pay for the custom chair. The new wheelchair arrived this week and Tom's sore appears to be healing nicely. My point was merely to carefully explore all the healthcare system red tape and still expect the un-expected. Kathy

_________________
Kathy, 63, wife & caregiver of Tom, 64 dx 2007 (later stage) lives in dementia care facility in Durham,NC


Sun Apr 01, 2012 5:15 pm
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: Time to place him in an ALF?
Thanks to everyone for your very helpful replies! One thing I've learned is that I'm not even sure I'm asking for the appropriate kind of care. My doctor has recommended three places nearby which have memory units. From your posts it sounds like I will be looking at skilled nursing facilities, not ALFs. My hb will be a two- person assist. He feeds himself but no longer recognizes edible vs non edible items (one of the reasons my doctor points out he needs to be in a more secure environment). He needs help getting up and down but is still somewhat ambulatory. He no longer makes sense when he talks. He is incontinent as to bladder. In short, he is probably midway through this descent into darkness called Lewy body dementia.
I welcome any further advice, and will be back to post once I see what is available to us. I suspect lewy is going to make this decision for us, but we'll see. I bought some very good long term health insurance fifteen years ago. I will have all my premiums back in the form of payments to nurses in two more months.


Sun Apr 01, 2012 10:30 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Time to place him in an ALF?
Challenged,
Ask at the memory care facilities your MD has recommended if they would accept a two-person assist resident.
Robin


Sun Apr 01, 2012 11:37 pm
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: Time to place him in an ALF?
Hi - We are in our third Assisted Living Facility. My mother's behavior has gotten her asked to leave the first two. She is now at a Memory Care Facility. We have not found a facility yet in which there aren't issues, but what I would say is that for us the biggest issue has been her getting her medications at the right time. The facilities in both MI and IN allow for medications to be given an hour before or after the stated time. This is a big deal for my mother since her parkinson's medications are timed such that she has wear off if they don't give them at the exact time. The frequently do not or cannot given the fact that she is not the only person at the facility. We have also had to get her a lot of home health care despite the fact that she is at a facility. We found that having the facility bathe or do certain add on services were a poor way of doing things since the staff often do not take the time needed to make her feel treated with respect during these activities. Hiring home health care from outside worked out better for that than in the facility. I think that staff burn out is high in these facilities and people with DLB are frequently difficult. I think a facility with as high as you can get staff to patient ratios is also important. It is the worst to have an angry nurse and an overworked aid be the only folks in the facility on weekends or evenings.

My own experience has been that the ALF that we have spoken to have no experience with DLB (even the memory care facilities). They assume all dementia is alzheimer's. We found that the nursing home facilities that we have spoken with are more understanding of what my mother is going through, but they are less "home like" and my mother is not yet ready for them. Good luck. You will probably have a sense of what fits when you interview them. Try to be as honest about the issues that you see with your husband as you can. They want your business (and they love insurance money) so don't settle for something that doesn't feel right to you.

Good Luck - Liz


Wed Apr 04, 2012 1:08 am
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: Time to place him in an ALF?
Again, thanks to all of you. I found the perfect place, staff to patient ratio of 1.5-1, small facility, all dementia patients and they specifically target dlb. But it appears at least two of our children won't even consider a placement. They think I'm exaggerating, they don't believe some of the things I've told them have happened, they're sure with all the help they give it just can't be beyond me. I'm in shock, I feel like my health and well-being are not important to them. Or maybe they just think I don't need much Tlc, I didnt get much when I was in chemo and radiation either. It would be beyond sad to have an estrangement over this, I'm at my wits end what to do.


Tue Apr 10, 2012 1:50 am
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Time to place him in an ALF?
Oh dear! The decision to place is wrenching enough without resistance from your kids, of all things! How very sad.

You need to do what is best for your husband and for you. That is your first responsibility. I hope you can manage to do that without causing a rift in the family -- you certainly deserve support now, not aggravation. But regardless of the kids' attitudes, you have to do what is sensible and right.

Is there a family friend who could talk to the ones who are resisting, and give them an outside objective perspective? Have they talked directly to your doctor? How about a family consultation with her? I certainly hope they come around.

I wonder if the kids are in denial about your health problems? They eventually had to accept Dad's impairments (although maybe there is still some denial there, too) but certainly Mom, Superwoman, Indestructable Mom, who has always held everything together, certainly she can't have a serious health problem. Maybe their behavior is self-protection rather than a lack of caring for you. But whatever is behind it, don't let it bully you into decisions that aren't best for you.

I'm so glad you found a good place. Let us know how this emotional complication works out. And hugs to you!

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


Tue Apr 10, 2012 2:55 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Time to place him in an ALF?
Challenged, I second everything Jeanne just said. And, I might add, if you invited your children to come give you some respite for 1/2 a day, a couple of days, whatever, they would gain great insight into what's really happening! You know you need to take care of you also. You cannot do it all at the stage/state your LO is now in, and it only becomes more demanding. Do what you need to do for both of you! Don't feel guilty, don't look back. 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.


Tue Apr 10, 2012 7:51 am
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