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 Bringing FIL to our house 
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Joined: Sun Dec 02, 2012 9:01 pm
Posts: 6
Post Bringing FIL to our house
My FIL currently lives about a mile from us; he is in a short-term rehab following a fall that fractured his knee above his joint replacement for PT and OT. His progress has been slow, but he is gaining strength and now that he's walking again (with his walker), he's focused on transfers so he can safely get in and out of bed and to and from chairs.

Back story - we didn't know of his LDB diagnosis until very recently. My MIL knew but didn't tell us with specificity and she died earlier this year. My DH and I just learned of his diagnosis since I've been taking him to his doctors appointments since he and I have DPOA for him that he gave us over a year ago. At this point in time, I take care of his finances, make sure he has 24/7 caregivers at home (and now the rehab since we don't want to lose the team, so we're paying for them to be there too) and help him, with a caregiver, get to his doctors appointments.

In our last appointment - last week - his primary care doctor really stressed him out when he said that FIL needs to go to a SNF permanently, that he's beyond going home. Even I can honestly say that his primary is saying this without seeing how well FIL is doing at the rehab with PT and OT and FIL's PT/OT therapists were shocked when they learned that his doc told him that, they don't feel he should be in SNF yet either. Needless to say, we now have an appointment for a family meeting with his primary doctor today to discuss FIL's situation and I've been scrambling to learn as much as possible to be able to discuss this intellectually and practically.

FIL is a very independent man and in the past decided he did not want to live with us following MIL's death, and he's been doing well at home with 24/7 caregivers. We're fairly certain the doctor isn't going to agree to discharge to his home - despite it being well laid out for his needs and fully handicap access for in-out and bathrooms - so we're now to the point where FIL said he'll live with us and we're prepared to have him come here. He'll still retain his 24/7 care and we'll need to remodel our bathroom and bedroom to accommodate his needs. We have a large house, so plenty of room for us to move to one of our guest rooms and retain our privacy too.

Oh, did I mention we have two small children? Two boys, 8 and almost 2.....they were the main reason FIL wasn't sure he wanted to live with us previously since they are - and I totally admit - a handful and distracting to him. So we'll be modifying our daily routine too so the kids aren't too distracting for him.

I'm posting for practical tips - not only for modifications to our home, but for the kids too.....

In addition to the bathroom and bedroom being reworked, anything else I need to consider?

What does our longer term outlook look like? FIL is very cognizant still and while he's physically challenged, he is still up and about with assistance....he doesn't want to do a wheelchair until he's totally unable to walk with his walker on his own. He is also scared by the idea of a SNF and doesn't want to go to one if at all possible.

What is going to happen if the doctor will not agree to discharge him to our house? Right now he's still making the necessary progress to remain in rehab short-term and I don't anticipate him hitting a wall with that for at least another few weeks or so, what next?

Thanks for your help!


Mon Dec 03, 2012 9:35 am
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Joined: Sun Dec 02, 2012 9:01 pm
Posts: 6
Post Re: Bringing FIL to our house
To help give you an idea of where FIL is physically....

MIL hired private caregivers a little over a year ago, when she got sick and taking care of FIL was too much for her phsyically. Since then, he's had a team of people helping him with things each day and in the overnight.

He needs to be cathed each night, so his caregivers do that.
He needs assistance getting in and out of bed, especially and mostly, in the overnight when he has to go to the bathroom.
He is continent still, but has urges to go a lot overnight.
He is very rigid physically, but able to walk with a walker and/or someone assisting next to him without a walker (we're now to always walker for safety)
He tires easily, so naps midday; goes to bed daily between 7-9 PM.
He eats really well and can feed himself - we or caregivers cut up meat though; while he feeds himself, it's slow, but steady.
He is cognizant and knows what's going on around him, he engages with us - his cognition is lower when he's really tired though.

We think having him here would then have two adults (me or DH + a caregiver) around to help as needed so his fall risk will be reduced, sicne it's now obvious he's at a greater risk for falls than he was a year ago.


Mon Dec 03, 2012 9:44 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Bringing FIL to our house
As I mentioned earlier in a welcome to a new member I always think it a good idea to search older posts as there are so many tips in them. Having your FIL in your home will have to be a decision only you and your husband can make but if you are informed the better the choice you make will be !

I was able to keep my husband home for the entire time, if I had to do over again I am not sure I would have done it the way I did , but I didn't have a lot of help either a few hours here and there and I am sure that would make a difference too !

Good Luck !

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Irene Selak


Mon Dec 03, 2012 7:54 pm
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Joined: Sun Dec 02, 2012 9:01 pm
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Post Re: Bringing FIL to our house
DH and I are both pretty firm on the idea of bringing FIL to our home....we asked his parents to move closer (they were on the east coast and we're in the midwest) a few years ago since DH can't take time off if they need help there, so they came here, with little time to spare before health issues, that we feared might come in their older age, cropped up. Three months after moving here FIL had an aortic dissection that he somehow survived and it was during his recovery that his LBD was apparently diagnosed. And now that we know, so much makes sense with regard to his declines over the years and his frailty. I know MIL didn't tell us because she didn't want us to go googling what LBD was - but now we know and we understand, somewhat, that his longer term care needs are likely to be different than we'd anticipated last year when MIL got sick.

Now we have a ringer in things - when FIL fell, he fractured his bone connecting his knee replacement; he refused to go to the hospital post-fall, but three days later it was hot, inflammed and he wasn't feeling well, so DH took him to the ER worried about an infection. Sure enough, it wasn't just an infection - he'd been harboring MSRA apparently since his knee replacement (or heart surgery - we cannot ever be sure) and the fall messed with the balance his body had maintained to keep it in check.....so he was admitted and treated - knee surgery to debride the knee replacement (with anesthesia, that is bad or LBD) and intravenous vancomycin. He'll be done with the antibiotics in a week.

Now going today to his primary to have a family meeting was interesting - we thought his primary doc's concern was his LBD - turns out its now that, but a relapse of MSRA post treatment that is worrisome. After treatment with intravenous antibiotics, FIL will be on oral antibiotics for life with their own host of potential problems, including they don't work and his systemic MSRA comes back, with a vengeance. O.O

We were assured it wasn't the LBD as the main concern and were given a bunch of information we'll need to take care of him at home with the MSRA issue - his LBD wasn't even part of the discussion since his doc feels we already have that covered with the 24/7 care FIL has been with for the last year.

This does put a wrench in things - I have to do some reading to see how antibiotics may hinder someone with LBD - any ideas? I'm off to search the forums to see what others have posted.

Thanks again!


Mon Dec 03, 2012 9:41 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Bringing FIL to our house
I am fairly certain most antibotics are tolorated but I am sure you have learned or read that LBD patients react differently with many drugs , no two LBD'ers react the same either. Just for the record many with LBD have very poor balance and have many falls, sometimes my husband would fall several times in a day.

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Irene Selak


Mon Dec 03, 2012 11:24 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Bringing FIL to our house
Since you have young children at home and in my experience kids tend to pick up LOTS of germs, you might ask their pediatrician for his/her opinion about a person with MRSA potentially living in your home and the likely effect on the kids.

Another thing people have to consider is the financial situation:

- having 24/7 care at home is generally really expensive.
- remodeling a home can cost a lot of money, and if he declines to the point where he becomes a 2 - 3 person assist, most people would need to place their LO in a facility because now the cost is double or triple what it was, AND you've spent the money to remodel.

Just a few thoughts I had while reading your post. There's a lot to think about and balance, especially when you have a young family that you are raising as well as taking care of a LO. All the best in making some difficult decisions, 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 Dec 04, 2012 6:44 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Bringing FIL to our house
Lynn,
Lots of good points and one that comes to mind for me is the invasion of one's privacy with so many caregivers even more so with a family involved, if it is just a spouse that isn't as hard !

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Irene Selak


Tue Dec 04, 2012 6:54 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Bringing FIL to our house
Yes, Irene, I have known several people who have had CGs come in 24/7 to help with their LOs and it can be a huge adjustment for everyone, so it is a really important issue to think about.

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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 Dec 04, 2012 10:00 pm
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Joined: Sun Dec 02, 2012 9:01 pm
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Post Re: Bringing FIL to our house
Good points indeed.

The modifications to our bathroom are, thankfully, minor to make it accessible, and we should be able to have it completed within two weeks from start date. My MIL dropped something like $35K on her bathroom when she had it remodeled and FIL won't see it back when we sell his house. Here we can keep costs down significantly since all we need to do is make the room with the toilet and double shower into a wet room and remove half a wall so it has no door to hinder FIL access in and out, walking solo, with walker or chair. Basically just taking out the tiles we now have and the shower pan, reline the whole room floor for water, then retile....oh and put the toilet on a pedestal so it's taller. Everything else (tub, sinks, etc.) can stay without any changes.

The issue of MRSA transmission to my kids or us - yikes! - I hadn't thought about that, I need to look into the possibility that such could happen and if there is anything we can do to prevent that from happening.

Invasion of privacy is going to be an issue; the only saving grace is that the team of caregivers he has were hired by MIL, FIL and us and each is really now part of the family - but that still doesn't mean I want them in my home everyday - it's an adjustment I'm going to have to get used to.....no more walking around in my PJ's to get my coffee in the morning!


Wed Dec 05, 2012 5:58 pm
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