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 It's too far to the toilet 
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: It's too far to the toilet
Dale keeps wanting to stand to have a BM. He seems to think it is easier to make his bowels work if he is standing. He has done that just once so far... and I know what you mean by mess.


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


Mon Jan 17, 2011 1:58 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: It's too far to the toilet - but not today
This morning, Dale had a little more mobility so I took him to the toilet rather than use the urinal. Once there, he decided it was more important to take care of his hard on than to pee. :roll: Same equipment; different job.

After that was done, he decided he needed to sit and did a good job of that too. In all, a satisfactory - but very long - trip to the toilet.

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


Tue Jan 18, 2011 11:55 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: It's too far to the toilet
Leone, I had to re-read, and then had a good laugh. I know exactly what you're saying. I now try to shower and dress while Frank's sleeping, it's much safer and faster that way.

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


Tue Jan 18, 2011 12:31 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: It's too far to the toilet - Gerry
I'm glad you're on the same wave length with me today. Thanks, Gerry. :P The more confused he gets, the more horney he is. Yesterday, when I held the urinal for him, he suggested that it would work better if I took off my blouse.

I guess I need to follow your advice!

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


Tue Jan 18, 2011 3:26 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: It's too far to the toilet
Oh Leone! How funny was that? I hope you can laugh at those things since there is so much stress otherwise. Maybe that should be an instruction printed on the urinal! LOL

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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 Jan 18, 2011 4:25 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: It's too far to the toilet
Wow, this thread is quite an education. How remarkable. I suppose there is a considerable reduction in the usual inhibitions....

Julianne


Tue Jan 18, 2011 6:40 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
It's always been a great stress-reducer for me--that indwelling catheter has been a problem, though... :lol:

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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.


Tue Jan 18, 2011 8:09 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: It's too far to the toilet
This past week has been a nightmare. Not only is it now too far to the toilet but we tried to get there twice this week and he passed out before we made it both times. I won't try that again. In fact, he can no longer stand on his own ... so I'm in the midst of a learning curve. I've watched the videos about adult diaper changing, bed changing, and what to do with messy diapers. I'm determined to get this right.

Even though I've been giving him bed baths, he seemed to want to take a shower a couple of days ago so we attempted that ... but I was sorry we tried. He gripped one of the safety bars so aggressively that it came away from the wall.

Next week, I will arrange for a hospital bed. I've also made some calls regarding home nursing help. We're into this one step at a time.

I will not try to transfer him from the bed to the wheelchair again. I can't get him back to the bed from the chair. I'm also feeding him in bed and crushing his pills - because he has started choking on his food.

In the midst of all this, he has been talking a mile a minute about total nonsense. It makes life interesting.

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


Sun Jan 30, 2011 6:27 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: It's too far to the toilet
I hate to say this, but it might be time to ask for a hospice evaluation. If hospice takes him on they will provide all the DME you need and all kinds of other valuable services. I think you and I are both burning the candle at both ends. My MRI came back with severe osteoarthritis, numerous bone spurs and cervical and lubar stenosis. It hurts constantly and Del is still able to help me with transfers.

I think about you a lot, Leone, and wish there were more to do than offer a shoulder. You have taken such good care of Dale. I am afraid you have left yourself behind.

Why is it always easier to see someone elses predicament and not see your own. That's me in a nutshell. I have always been a take charge kind of person....and here I am, still tring to take charge when in truth, Lewy is in charge. I think you are that kind of person, too.

I think Lewy has gotten the best of me.

Smiles, nan


Sun Jan 30, 2011 7:09 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: It's too far to the toilet
Thanks, Nan. Actually, when I called the insurance company for advice, they made the same recommendation. One of the local hospice organizations is connected with home nursing care ... so perhaps I will get both. I'll keep you posted. Dale's primary care doctor had already suggested involving them in 'in home therapy' which apparently means that someone will come and rub Dale's legs. That sort of care is included in our insurance. I'll know more this week.

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


Sun Jan 30, 2011 8:17 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
Rub his legs? It must be massage therapy rather than physical therapy.

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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.


Sun Jan 30, 2011 8:21 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: It's too far to the toilet
Dale went for a whole series of regular 'physical therapy' in 2008 at the local hospital and we were very pleased with all that we learned. That was before the diagnosis and we both still thought he had Parkinson's.

When the doctor suggested it recently, I assumed he meant the same thing... and I said, "We've already done that."

He said, "That's not what I had in mind." He then told me that this would be more making him comfortable in bed.... rubbing his legs, etc.

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


Sun Jan 30, 2011 8:44 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
Sounds good! :P

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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.


Sun Jan 30, 2011 8:55 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: It's too far to the toilet
Leone, It seems every couple days when I read your posts, Dale has declined. In the fall I thought you and Dale were so fortunate" to be able to have a somewhat "normal" life. I'm so sorry to hear Dale has had such a decline. I hope hospice will give you the help you need. Take care of yourself.

Nan, It seems that it would be impossible for you to do the caregiving without full time help. Please, pay attention to your health, you and Del will be in deep do-do if you end up in bed.

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


Sun Jan 30, 2011 9:07 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: It's too far to the toilet
Thanks, Jerry. I have not wanted to face placement although his PCP and his Pain Management Physician have all talked to me about placement. And the last time he was in the ER the Social Worker gave me a lot of material about placement. I threw it away. It just seems to me that I would be abandoning him to send him out like that.

I guess I am stubborn...too stubborn, I guess. Smiles, Nan


Sun Jan 30, 2011 10:57 pm
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