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 Ken is home 
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Ken is home
A while back I posted a query of others who had gone through the decision of whether or not to bring their LO home from a stay at an ALF and I appreciate all the responses I got from you. I brought Ken home today and even though the challenge is ahead of us I feel really good about this decision. He is still tippy-toe walking, but can be 'led' with a gate belt as long as he's not tired. I have a baby monitor w/camera set up so I can watch him wherever I go in the house and have a hospital bed in the room formerly known as the living room. I'll be sleeping next to him in the recliner tonight and am having a caregiver come starting tomorrow to help for a few hours each day. Wish us luck! Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Thu Oct 14, 2010 10:39 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Ken is home
I do wish you well! In some respects, having them at home is less stressful than having them in a facility. Hope it works out. :-)

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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.


Thu Oct 14, 2010 11:04 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Ken is home
Good luck!


Fri Oct 15, 2010 2:02 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Ken is home
Sher,
I am glad you brought him home and I do wish you luck with all of it, there won't be anything easy about it that's for sure!

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Irene Selak


Fri Oct 15, 2010 4:04 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3378
Location: Vermont
Post Re: Ken is home
Sher - I hope things go well for you and am glad you have someone coming in to help you. You'll need to get out and do things with peace of mind that he is being looked after. 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.


Sat Oct 16, 2010 8:09 am
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 118
Location: Dumfries Va
Post Re: Ken is home
Sher, Good Luck. I was told by the VA that I could put my loved one in a home and there is no way. The Guilt I would have would drive me to the grave. 46 years with myLO and there is no way I can put her in a home unless I was right next to her. It's hard but worth it to have the good moments


Sat Oct 16, 2010 9:45 am
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: Ken is home
No doubt about it. You did what is right for you and your LO at this time. I have my MIL living with me and am spending a fortune on caregivers, but I couldn't have it any other way. God Bless all of you who are caring for your LO's at home. It ain't easy.

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Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Sat Oct 16, 2010 2:39 pm
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Ken is home
Mariesmac,
I know in the logical part of my mind that there should have been no guilt involved when Ken was in the ALF for a month; he had 24 hour care, good caregivers, safety, etc. BUT every moment I was away from him I did feel guilt: was he calling for me? did he get the right meds? did they give him food he wouldn't choke on? is he too hot? have they changed him often enough today? is he wondering why he isn't home...
I visited several hours a day but always felt guilty leaving.
Since he has been home I have spent most of my time preparing his food and meds, dealing in many dirty 'briefs' (I try not to use the "D" word), wet bedding, challenging showers, etc. However, I feel content again being the one to do that for him, even if he doesn't know that I'm helping him some of the time, I know I am and it is where I should be. My biggest challenge is that he is no longer walking so it makes moving him just from the bed to a nearby chair an exhausting endeavor. Also, he came home sick, fever and diarrhea, so I'm hoping when he is better he will be strong enough to help me a bit more. I have hired caregivers to come in, but when they are not here I try to not put myself and Ken in a situation that will end in a fall. One day at a time! Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Sat Oct 16, 2010 10:34 pm
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Joined: Thu Jan 28, 2010 4:42 pm
Posts: 59
Location: Florida
Post Re: Ken is home
Sher,

I've been caring for my mom who has LBD in my home for the past couple of years. She has gone from being able to use a walker to being unable to stand or walk and is now bedfast. During that time, it was extremely difficult to move her, even though she only weighed 100 pounds. When she qualified for hospice last year, they brought me a hoyer lift as I wanted to let her sit in her recliner in the living room with the family. Before hospice, her primary care dr had written a script for the lift and her insurance was going to cover it. However, she had a major decline so we called in hospice (which is working beautifully). Not sure what your insurance situation is or if Ken could qualify for hospice, but the lift is a wonderful tool.


Sun Oct 17, 2010 9:14 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Ken is home
In my opinion it is never too early to call in Hospice , the worst that could happen is your person won't qualify but will still be in the system when they do finally meet the qualifications !

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Irene Selak


Tue Oct 19, 2010 10:43 am
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Ken is home
Our insurance is a catch 22! I talked to Elizabeth Hospice 2 months ago (just a few days before his fall) but since Ken wasn't old enough for Medicare they would have to go thru Kaiser who said he didn't qualify. Since his fall, however, he is not walking and needs assistance with all 6 ADLs so he may qualify for Kaiser now, I haven't checked. Also his Medicare kicks in on 11/1 so that might make a difference if EH can go beyond Kaiser and collect from Medicare for their services. Does anyone have any experience with Kaiser and hospice? Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Tue Oct 19, 2010 1:10 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Ken is home
Like most hospice organizations, there are people with good things to say about Kaiser and people with bad things to say about Kaiser. Some Kaiser Hospice groups have been tapped out, so Kaiser farms out some patients to other hospice agencies.

Is your husband going off Kaiser when he gets on Medicare? Or will Kaiser pick up his Medicare benefits? The answer will determine where you'll go for hospice benefits.


Tue Oct 19, 2010 6:18 pm
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