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 It's too far to the toilet 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3423
Location: Vermont
Post Re: It's too far to the toilet
Gail - I sure hope things continue to go well. It won't be perfect, but I'm glad you've found a place where you feel comfortable leaving him and knowing he's well cared for. Overall I was very pleased with the ALF where my dad was. All the best to you, 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.


Wed Feb 02, 2011 9:02 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: It's too far to the toilet
Thanks for the good wishes from all of you. When I catch my breath, I will comment on the essentials of our situation and experiences in this life crisis. Still going very well.

Gail


Thu Feb 03, 2011 2:04 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: It's too far to the toilet
Gail,
I am glad the move went well and so far so good !
Keep us posted !

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Irene Selak


Fri Feb 04, 2011 1:35 pm
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Joined: Tue Jun 22, 2010 4:17 pm
Posts: 18
Location: Connecticut
Post Re: It's too far to the toilet
Hi all,

I posted something about a cat litter technique which I learned of through SOME board. It was suggested that you put clumping cat litter into a large plastic tub and let the LO urinate directly nito the tub, which would be kept right close to the bed. Then the urine can be cleaned out easily with a strainer for the clumping litter. I thought this was a good idea, so I tried it with my husband, but he just couldn't get the idea, no matter how many times I tried. I still think it is a good idea if you can get the message through to urinate directly into the tub.

Marcia


Sat Feb 05, 2011 7:06 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: It's too far to the toilet
The decision to place my husband Charlie wasn't the hard part--it was the only option--no guilt there. Just hard to actually do. He isn't nearly as far along as some of your LO's and I don't know how you can keep them at home. Other than a shower, the need to help with basic living tasks is 24/7, so what good is it to hire someone for less than that? 24/7 paid help is way too expensive. So we never got to the complicated stuff. If not for the dementia, he wouldn't be overly disabled, but the dementia causes lack of cooperaton or no longer knowing how to do things, which limits my (sole caregiver) ability to help.

One factor is his not knowing where he is or who I am most of the time, so it is cruel to place him in the RIGHT facility?

Do I miss his company here? Maybe I shouldn't admit it, but not really. The real Charlie is gone and the remaining shreds are difficult to communicate with. Here, I was horribly cranky and crabby all of the time and wa not providing him with a pleasant and loving environment. That was/is a source of guilt. I'm much nicer to him now.

He is bored but ok at the new facility. The facility is brand new and is civilized--you want a glass of wine with dinner? Got it. I can eat with him (and have a glass of wine) at no extra cost. The staff eats their meals at the same time and sit with the residents. Charlie wakes up occasionally at 4 am--they cook him some bacon and eggs. He goes back to bed and gets to eat breakfast again.

So far it is a nice place for me to visit--I don't have to do stressful things. And no, this is not some high-cost place, they just try to provide a homelike and not institutional environment.
Alarms have been mentioned elsewhere. They have a pressure mat which the resident steps on if he gets out of bed and which quietly blips on the receiver that the aids carry. No noise to disturb that or other residents.


Thu Feb 10, 2011 11:16 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: It's too far to the toilet
Gail, I can relate to so much of what you say! Derek does seem to know I am his wife [he didn't when he was home] but doesn't know my name. While I missed his presence terribly at first I am now content to be alone with the dog. I still wake up two or three times in the night, thinking I hear him. Maybe that will stop in time, too. The peaceful evenings are pure heaven! :P

I visit twice a day for about two hours each time and take part in his care as much as possible. The staff is very pleasant and patient [with him and me :lol:] and I'm grateful for that. He is sometimes combative with them [and with me] and often uncooperative and they handle it well. They only shower him twice a week and he missed that a few times because he resisted. It didn't kill him. He eats pretty well, walks with his walker once a day with the therapist and aide holding his gait belt and me behind him with his wheelchair.

Significantly, he doesn't know he is not home! He will sometimes ask where my bed is and why I'm not eating but since he imagined there were swarms of caregivers at home, he just assumes these are the same caregivers. [One of them actually was his cg at home two mornings a week. He works the night shift, but not on Derek's unit, and pops in to see him from time to time].

As you say, it had to be done. There was no choice, therefore no guilt. I would have preferred to keep him home and felt like a failure--especially as I am an RN--that I was unable to do that and was terrified at first that his care would be substandard but have become satisfied with the care he receives, overlooking the non-critical lapses and contributing as much as I can to his well-being. Being there a lot and developing a good relationship with the staff has made a big difference, I think.

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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 Feb 10, 2011 11:54 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3423
Location: Vermont
Post Re: It's too far to the toilet
I'm glad you two are having good experiences and not beating yourselves up over having to place your LO in a facility. You do need to have a life for yourselves too and you have a responsibility to yourselves to be healthy. I think your comments will be helpful to people going through the process of knowing when it's time to have a LO move to a place where they can get the level of care they now require. 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.


Thu Feb 10, 2011 12:44 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: It's too far to the toilet
I am glad you both are satisfied with the care that your husband's are getting, it does make things easier in the guilt dept, but there should be no guilt as what you both did was out of concern for your husbands getting the right care! And you both know your jobs arte long from over!!

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Irene Selak


Thu Feb 10, 2011 4:39 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: It's too far to the toilet
It really is too far to the toilet. Has anyone ever tried switching their elderly LO from using the toilet at night to peeing in an adult diaper? While she is not incontinent, my LO is in danger of falling every time (at least 3-4 times) a night when she gets up to pee in the toilet. In fact she did fall and we are dealing with a broken collarbone right now. During the day she understands the danger and is willing to use a Tena brief, but at night she cannot make herself go in the brief at bed. We've tried a commode and she can't figure out how to use it. The goal is for her to use the brief in bed with two nightly changes by the CGs at her ALF so that I don't have to have someone stay with her every night. Any experience with this or suggestions as to whom to talk to? OT? Thanks. AnnieN

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


Mon Feb 14, 2011 1:00 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: It's too far to the toilet
For those of you struggling with the issue of whether you should place your LO in a facility, why not just try it temporarily, like respite care? No big deal psychologically because it's just a trial run and you can take them home any time.

Some of your LO's at home seemed more advanced than my husband, but it is working ok.

When the weather gets better and the days longer, I plan to take him home for the day to see how that goes. I think it will be a disaster.

Have any of you done that, when the LO has been in a facility for a couple of months or more?


Tue Feb 15, 2011 12:08 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: It's too far to the toilet
Gail, from what I've heard from friends, it's not a good idea.

_________________
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.


Tue Feb 15, 2011 1:20 am
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: It's too far to the toilet
I'm sure temporary placement comes with lots of hassle and negatives. But it still seems to be to be better than waiting too long because of the fear that it isn't best for the LO. Human nature is to continue the "normal" and assume that placing the LO is automatically a negative in itself.

How have other respite placements worked out?


Tue Feb 15, 2011 12:13 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: It's too far to the toilet
Gail, I put Derek into the SNF for a week's respite and realized while he was in there that, if it takes two aides or an aide and a PT to transfer him, it was no wonder I'd been hurting myself. I had even ordered a sit-to-stand device to use at home but saw that, in the morning and at night, it took two aides just to get him into the harness and realized that, realistically, I would not be able to take him home.

_________________
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.


Tue Feb 15, 2011 12:55 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: It's too far to the toilet
Gail, my husband has been hospitalized twice since his LBD diagnosis. The first time he was discharged to the memory unit of a TCU. I think that he was there about 10 days. It was an absolutely hideous experience for both of us. It strengthened my resolve to keep him at home as long as it was humanly possible. After the second hospitalization I said no thanks to the TCU and brought Coy home to recuperate. It was hard, but not as hard as having him in the TCU had been. I know that the day may come when it isn't humanly possible for Coy to remain at home, and that I am only human. When that time comes I doubt that we'll need a "trial," and I don't think I'd take comfort in viewing it that way, but that is pretty hypothetical. I don't know how I'll feel until I'm in the situation.

(My 90YO mom, with MCI, has been in TCUs twice. My sisters and I decided that one of them -- the fancier, newer building -- had as much chance of having Ma placed there as the Vikings have to win a superbowl. The other one -- more modest building, more caring staff -- is on our "acceptable" list if placement is needed in the future.)

If the facility you intend to use offers respite care, then using it for respite ahead of placement need might help resolve any questions about the appropriateness of that choice and help familiarize you and the LO with the staff and routines. I suppose it could be used to try out the idea that it might be time for placement. That is how it worked out for Pat, although I don't know if that was her intention at the start.

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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 Feb 15, 2011 1:39 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: It's too far to the toilet
Jeanne, sorry for the ignorance, but what is a TCU?

Julianne


Tue Feb 15, 2011 1:43 pm
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