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 The reality of LTC 
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Joined: Fri Jul 16, 2010 1:11 pm
Posts: 16
Location: Oakville, Ontario
Post The reality of LTC
Hi all,

Yesterday I moved my Father to a LTC facility. It was proving to be too much to have him at home - (I am single, work full time and have two children). His health had declined in the past four months to a point where he needed 24 hour a day supervision/care.
One day in and I can't stop crying. They are having a hard time keeping up with all his Lewy needs. The wandering at night, the confusion, the need to get up and walk even when he really shouldn't be, is all frustrating to them. The care workers don't know what to do and there are not enough of them to care for all the people on the floor properly. When I was there tonight I just wanted to pack him into my car and bring him home. This is not the life I want for my Father but I can't provide the care he needs. I am heartbroken and so sorry and I feel I have failed him.

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Allison - caregiver to Donald (father) age 76 diagnosed with LBD July 09.


Fri Aug 13, 2010 9:44 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: The reality of LTC
I'm so sorry for what you are going through! Our experience is that they need a unit designed specifically for dementia. My husband was in a very good one last summer while I moved us and they seemed to know how to handle these illnesses. I had to get on a waiting list months before, including putting down a deposit, because they are so much in demand. But compared to a SNF he was in earlier, it was 100 per cent better. [He was ousted from the SNF because of his 'behavior issues']. I hope you can find a suitable place.

My neighbor's husband has FTD [fronto-temporal dementia], another difficult type of dementia, and he is in an adult family home and has done quite well there. A few issues with anger, etc. but they were resolved. Some adult family homes have staff that are trained in dementia care and are secured facilities. They are also a lot less expensive and might be worth a look. I wish you well in finding a good place for your dad! God bless you!!

_________________
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 Aug 14, 2010 12:41 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: The reality of LTC
Sorry to hear about this stressful situation. Is your father receiving proper medication for his dementia symptoms? Is this a dementia-care facility?


Sat Aug 14, 2010 1:11 am
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Joined: Fri Jul 16, 2010 1:11 pm
Posts: 16
Location: Oakville, Ontario
Post Re: The reality of LTC
Unfortunately no, it is not a dementia care facility. I have loaned them my copy of "riding the roller coaster of lewy body dementia" in an effort to educate the staff. Not sure how much that will help. I guess it really depends on how much they care about the care they are providing.
We are still on the waiting list for our prefered facility(s). This home was offered and the way the system works here if you don't take what is offered you go back to the bottom of the list (something I could not afford to have happen). So we have to make the best of it and I will have to advocate and educate on my Dad's behalf so that he is treated properly until such a time as room comes up at a better place. I sincerely hope that after he settles in a bit and the staff get to know him that the days will be better.

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Allison - caregiver to Donald (father) age 76 diagnosed with LBD July 09.


Sat Aug 14, 2010 8:19 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: The reality of LTC
You're wise to know your limits and have made the difficult decision to keep your dad safe. I hope your dad settles in and the staff gives him the care he needs and takes time to understand this horrible disease. Hang in there and take care of yourself.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sat Aug 14, 2010 9:10 am
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: The reality of LTC
At my LO's ALF I have probably seen 20 people come in as new residents. The first few weeks are the hardest for everybody. In almost all cases that I've seen it gets easier after a couple of weeks when the caregivers figure out someone's natural schedule and the resident figures out where the dining room, the door to their room is, etc. All the facilities we have been in have a "care plan" which is a useful tool for the family caregiver to use to describe the many needs that their special, individual LO has. The caregivers should be reading the "care plan" and familiarizing themselves with the resident. We also talk directly to the caregivers if there is something they haven't picked up on. And we repeat ourselves because the caregivers change with the shifts and turnover.

One thing I have realized with my LO is that she must be in a home with room to walk. The last two ALFs have been in a square shape and she will burn off anxiety energy by pacing that square. She does this daily. There are others at the ALF that do the same thing night and day, around and around, everybody carefully meeting each other as they pace. My husband and I have assumed from close observation that the ones who pace have LBD or something like it.

Good luck to you and your father.

_________________
Annie, daughter of brave Marie, dx 2007 and in ALF


Sat Aug 14, 2010 9:21 am
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Joined: Fri Jul 16, 2010 1:11 pm
Posts: 16
Location: Oakville, Ontario
Post Re: The reality of LTC
Everyone keeps telling me to let him settle in and give him time to adjust. It is an adjustment for all of us I guess. I keep getting conflicting advice on visting him. Some say to see him as much as possible and keep the caregivers under watch and others say back off and let him and the caregivers adjust to each other. I don't know what the right thing to do is. I have to let them do their job and I know they have more than just my father to tend to. It is hard to give up control after looking after his every need for so long. I know him better than anyone and I want to make sure he is treated with respect and compassion.
Allison

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Allison - caregiver to Donald (father) age 76 diagnosed with LBD July 09.


Sat Aug 14, 2010 10:00 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: The reality of LTC
Allison, they say [those in the LTC field, anyway] that you should visit infrequently for the first couple of weeks to give your LO a chance to adjust to the community of cargegivers and other residents. I do understand your misgivings--especially as they don't seem to have a handle on his behavior but it might be worth a try.

_________________
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 Aug 14, 2010 4:09 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: The reality of LTC
Allison - you can only do what you can do, and providing full time care for your dad doesn't sound feasible. You just have to do the best you can, given very difficult circumstances, and don't beat yourself up for what you CAN'T do. You are working and raising a family yourself, and your dad's needs will continue to escalate. So, even if you were able to take care of him now he will become more and more dependent, and the declines can happen very rapidly. He may never adjust well to the ALF, and then again, maybe he will. My dad has never adjusted in 13 mo. of being there, but there really isn't another choice. He doesn't have the money to have 24 hr. care in his own home, which would be his preference, but we just are doing the best we can. I remind myself that he is in a very nice place, it's expensive, but very nice and he gets good care there. We could not lift him and provide all the other things he needs, so I am glad he can be in a facility where he gets the help he needs. You aren't a failure, you're just a daughter and mom doing the best you can do. It is a very hard road as a CG. 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 Aug 14, 2010 5:03 pm
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Joined: Fri Jul 16, 2010 1:11 pm
Posts: 16
Location: Oakville, Ontario
Post Re: The reality of LTC
Took the kids to visit Dad yesterday afternoon and I am happy to report that he was having a better day. We sat in the garden area and he had his favourite root beer. He tired quickly after an hour visit and he wanted to go back to "his room" for a nap. I hope he has another "good day" today as this will help him get his bearings and adjust.
The kids miss having him home as do I but I am happy to get some sleep at night and I am a better mom and daughter for it.
Thank you all for your support, encouragement and kind words. It helps a lot.
Allison

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Allison - caregiver to Donald (father) age 76 diagnosed with LBD July 09.


Sun Aug 15, 2010 8:42 am
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