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 Sharing at home care giving ideas - What works? 
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Sharing at home care giving ideas - What works?
Sharing ideas....

1) Dale's head sweats a lot. The suggestion that I put a small towel on his pillow has worked out well. It's easier to change (and wash) than a pillow slip.

2) Dale's catheter occasionally leaks a few drops. A small soft washcloth placed under it saves having to change the bed pad in the morning. A hairdryer used in the morning keeps that area dry.

3) Pat (Mockturtle) uses a spoon to offer pills. It's better than a dosing cup.

What else have you found that works? Let's learn from each other.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Dec 04, 2010 9:57 am
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Sharing at home care giving ideas - What works?
Great post Leone!
Something I find that keeps Ken from leaning is one of those little round pillows tucked in the crook of his neck when he is reclined far enough in the chair. I can't wait to read what others find helpful! 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 Dec 04, 2010 10:21 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
Post Re: Sharing at home care giving ideas - What works?
Those 29"X33" quilted cloth bed pads with the waterproof backing [I bought several at Walmart] are great for keeping the bed dry plus they are cheaper in long run and a lot 'greener' than disposables.

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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.


Sat Dec 04, 2010 10:55 am
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Sharing at home care giving ideas - What works?
Pat --- re bed pads.

After washing the bed pads hundreds of times, our bed pads are failing to lie flat on the bed. They are still quite useful but I wish they would stay flat.

Do the ones you have from Wal Mart lie flat on the bed after many washings?

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Dec 04, 2010 11:14 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
Post Re: Sharing at home care giving ideas - What works?
Leone, I have washed them many, many times--maybe not hundreds, as I rotate them, but they have held up really well.
they are white with a light green backing.

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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.


Sat Dec 04, 2010 11:58 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Sharing at home care giving ideas - What works?
Your bed pads, Pat, sound like what I bought online. You are right; they are much better than paper - especially for Dale since he is often allergic to paper. Ours has a cloth on each side that tucks under the mattress but since we still are in one bed, only one side is tucked.

I also bought a bed cane... but haven't installed it yet.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Dec 04, 2010 1:00 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Sharing at home care giving ideas - What works?
Ours don't have tuck-ins. Just pads but they stay put OK. He doesn't thrash around like he used to.

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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.


Sat Dec 04, 2010 4:41 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Sharing at home care giving ideas - What works?
Pat - How is that bed cane working out?
I'm actually hoping that it will eliminate my need to pull Dale up from the bed in the morning. He seems to do OK during the day - but he wants me to pull him early in the day. That's hard on my back.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Dec 04, 2010 4:48 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: Sharing at home care giving ideas - What works?
Leone,
You definitely shouldn't be pulling someone out of bed. Have you brought in a PT to show your husband how to safely get out of bed, and to show you how to safely help? I'm sure the PT will say that a bed cane or superpole is required.
Robin


Sat Dec 04, 2010 5:01 pm
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Post Re: Sharing at home care giving ideas - What works?
The bed cane is working fine. He is not able to get himself out of bed but can hold onto it with one hand while I get him to a sitting position, from which I pull him to his feet and onto his walker or into his wheelchair.

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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.


Sat Dec 04, 2010 5:20 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Sharing at home care giving ideas - What works?
Yes, Robin, we did go to physical therapy for several months about a year ago. We learned all the tricks. :lol:

That doesn't mean Dale doesn't sometimes act totally helpless. He is like a child. :twisted:

It isn't as if I'm carrying him; I just give him a little tug. It's really a sort of rocking motion to get him moving.

I thought the 'bed cane' would help. He gets up from his nap without assistance.


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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Dec 04, 2010 5:46 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Post Re: Sharing at home care giving ideas - What works?
Actually, Robin, I think we did gain a lot of helpful information from our sessions with the physical therapist. She showed us how Dale needed to sit on the bed first and then move into the sleep position. At the time, his hips were almost immobile.

That was strange because he has always done exercises. (He was a rep. for Nautilus - selling equipment to the army and designing fitness rooms.) Most of his body was working well - except for his hips.

He does better in that area now... but he still sort of falls to sit rather than lowering himself into a chair. I recently challenged him to see if he could still sit without using his hands on the arms of the chair... and he could. He just doesn't! It's almost as if the symptoms are by choice .... but I know that isn't true. :cry:

I've been tempted to get a chair with arms for the kitchen - but that's still the one place where he can practice sitting - using his thigh muscles - if he choses.

And, BTW, the advice of the therapist was the reason we did not buy a lift chair. She said she wanted Dale to continue to sit using his thigh muscles and a lift chair would defeat that.


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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Dec 04, 2010 6:16 pm
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Post Re: Sharing at home care giving ideas - What works?
A lift chair can really do harm if the person could still be mobile and get up without it. I think my dad could have possibly walked another 6 mo. to a year had he not weakened so many muscles by his insistence on using his lift chair for years when he didn't really need it. When he was living at home he eventually started leaving it mostly up, so he was kind of propped half-sitting, half standing which resulted in a pressure sore on the bottom of his foot that neither he nor anyone else even knew he had. My sister discovered it when he was in the ER last summer, so they started treating it then and after many months it finally went away.
One of the things that helped him in the past year was the toddlers' sippy cups I bought for him when he could no longer hold a glass. It saved a lot of wet shirts and pants. 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 Dec 04, 2010 6:34 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Sharing at home care giving ideas - What works?
Lynn: I'm amazed that you think that was the origin of the pressure sore. Where was it on his foot? Tell me more.

Dale's feet are a major concern for me. Because of an old basketball injury, he wears a different size on each foot. One foot is slowly forming a claw. He never wants to walk anywhere without shoes.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Dec 04, 2010 6:54 pm
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Joined: Sat Oct 06, 2007 4:28 pm
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Location: LA
Post Re: Sharing at home care giving ideas - What works?
When I hear "pull him from the chair or bed" I cringe as I remember seeing others "help" Mr Bobby from a sitting position. I have hesitated giving our method of having Mr Bobby stand but it worked for us for ten years with little or no strain on either of us. The therapists thought it was awful and told me so. Perhaps for others they are right. But we did it. Like we know every situation with LBD is different.

Here's the method [not recommended by anyone in the medical field] use with caution:

I approached Mr Bobby as if we were having a friendly hand shake but then moving my right hand up the inside of his right arm and coming to rest just above his elbow I grasped his arm [top of elbow] while he did the same to mine, then I leaned back as he stood on his feet. I helped him stand until the end. No strain. Never a fall.

I repeat, the Physical Therapists were horrified. The Occupational Therapists forbid it. I just did not listen. We've always done things our way. We were married 67 years so why not?

Dorthea

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"See this lady, she's 85, but she's nice"


Sat Dec 04, 2010 7:01 pm
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