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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
Nan... I fully understand. I hate the idea of turning Dale over to 'final care.' It may come to that... but there are still a few times when he is still sweet company. Tonight, for instance, he is delusional (as usual) but he is insisting that I've made him proud. I'm not sure what I've done (in his delusions) - but he is obviously enjoying the role of spouse in some situation that features me. He said, "You made me so proud."

He has always been there for me... and I can't stand not being there for him. Does that make sense?

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


Sun Jan 30, 2011 11:09 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: It's too far to the toilet
Oh, yes it does, Leone. Our lives are so entangled with these men we love and have spent so many years with. I simply cannot imagine a house without him, although when I get so tired, I sometimes long for a house alone...just me and maybe the dog.

My daughter-in-law asked me if I would ever be interested in having a relationship with another man when Del is gone....and for a moment I couldn't figure out what she was asking me. Then I told her I would have to go sit at the widow's table at our local Senior Activity Center cause I realized I had spent the last 7 years flirting with all the old coots there and without Del, i would be in trouble. It would be the widow's table for me.

I have felt protected and consoled and loved and I can't stand the thought of losing that. I so can understand how you want to keep him near just for the times when there is a glimpse of the old Dale..or in my case, the old Del.

Crappy end to things, isn't it??? Sadly, Nan


Sun Jan 30, 2011 11:36 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: It's too far to the toilet
It's really hard sometimes to admit we can't do it all, especially we women. We are used to multi-tasking and doing all those nurturing things. But when we are trying to take care of another adult who can no longer even help with transfer it becomes a whole new ball game. You know you can't afford to hurt yourself, yet many keep on keepin' on until you do get hurt. These neuro degenerative diseases take both a mental AND physical toll on the CGs. Please don't push yourselves till you are hurt. Who will take care of your LO AND you when that happens, and it will happen unless you are way bigger and stronger than most. 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.


Mon Jan 31, 2011 12:39 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
Leone:

So often your posts mirror our situation, no more than tonight as I sit here bawling because I will take my husband tomorrow to "final care." It's a great place (I think) and he will probably do better as I can no longer help with even the basics. I will write more detail soon, but just had to respond. I didn't know it would be this hard!

Gail


Mon Jan 31, 2011 1:25 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: It's too far to the toilet
Oh, Gail. I think I am not far behind you. As you blaze the path that Pat just traveled, keep us informed. Your experience helps me to know what to expect and I do learn that if others can cross tht gulf then I can, too. And you all are helping me to learn how to do that. I hope you can literally feel your caring friends here as you do this very hard thing.

Hugs to you, Nan


Mon Jan 31, 2011 1:35 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, my heart aches for you because I know how awful you will feel at first. Things are much better for us now and I've become a lot more comfortable with Derek's placement. It helps that he doesn't know he's not home [so weird, but true]. I am there four to five hours a day in two visits and keep close tabs on his care. The first couple of weeks I was depressed to the point I could barely talk to anyone. Rest assured that you are doing what you have to do and that it's the right thing for both of you. God bless you! Hugs, Pat.

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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.


Mon Jan 31, 2011 1:49 am
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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
Dear Gail and Nan .... I keep going back and forth in my mind and I know the struggle you are facing, believe me. This morning, Dale is cheerful and agreeable. When he is this way, caring for him is so easy... It almost makes me forget the trauma of the past week. I can live with the delusions but can I live with the other behaviors?

Am I strong enough physically? So far, I am almost surprised at how good I feel physically. I have always known I was strong. Dale says I should have a big letter 'S' on my shirt.

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


Mon Jan 31, 2011 7:24 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: It's too far to the toilet
Gail - I'm sending you a giant hug of support. You know you have done all you can do at home, and don't feel guilty that you can't do it anymore. This disease is so traumatic for everyone. Sending you all good wishes today. 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.


Mon Jan 31, 2011 9:25 am
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: It's too far to the toilet
Gail, Each one of us will be facing the same decision. Fran is not quite at that point, but I see the writing on the wall. It is only a matter of time. My prayers are with you. Bernie


Mon Jan 31, 2011 7:00 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: It's too far to the toilet
Gail,
Just know each one of us that has posted here will keep you in our thoughts and Prayers as you go this very difficult step!

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Irene Selak


Mon Jan 31, 2011 7:21 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
Nan, Bernie, Leone:

My husband moved into the dementia ALF yesterday, so far everything is going swimmingly well, and I am very upbeat. Mainly because of the quality of the facility and the staff. Just wanted you to know that minimal trauma is at least possible.

Gail


Wed Feb 02, 2011 1:15 am
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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
Oh Gail, I certainly hope that continues for you! I'm very glad that the move went well.

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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


Wed Feb 02, 2011 1:24 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
Glad to hear it, Gail. The staff at my husband's SNF is excellent, too [with one or two exceptions] and I feel a lot more comfortable now with not being there all the time and preparing to go back to work at the end of the month. [These places don't come cheap!] So glad you found a good one.

_________________
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.


Wed Feb 02, 2011 1:41 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: It's too far to the toilet
So glad to hear the move has gone well so far. I hope his placement continues to be a good one for the both of you. It is nice to hear good things about some of these places. Peace of mind is something very valuable.

Take care and sleep well. Smiles, Nan


Wed Feb 02, 2011 2:21 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
Gail, I'm so pleased this placement went well, it's such a tough decision for a caregiver, financially, mentally and emotionally, it must seem like a large void when the evening comes and you're alone. The one positive thing is that you can mend physically.

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


Wed Feb 02, 2011 7:45 am
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