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 Stuck and unstuck 
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Stuck and unstuck - Pat - re wheelchair
I've asked Dale if he would use a wheelchair .... and he said he would gladly use 'any of those.' He is quite familiar with airport 'wheelchairs' at this point. I think a 'transfer chair' may be our first acquisition since he is still walking at home.

(This afternoon, he is talking about playgrounds, garden ponds, and grandchildren.

He regularly starts talking in the middle of a thought with "They....." I always ask, "Who?" [dumb me]

And then, somewhat annoyed, he says, "I don't know who 'they' are." I really love these conversations that assume I know what is in his mind..... :cry: )

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


Sun Dec 12, 2010 7:01 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Stuck and unstuck
Yep, we're supposed to be mind readers. And reading his mind is like reading Proust in Swahili.

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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 Dec 12, 2010 7:10 pm
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Joined: Sun Aug 26, 2007 9:44 pm
Posts: 118
Location: Nashville, Tn
Post Re: Stuck and unstuck
Mockturtle.... I have to say things like "BIG STEPS".... OR BACK BIG STEPS>>>> or something like that... anything else is too much for him to handle.... Cheryl ps sometimes I tell him to take JOHN WAYNE STEPS... silly... but sometimes works. Cheryl


Mon Dec 13, 2010 1:37 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Stuck and unstuck
The coaching used to work but no longer. His poor leg will just quiver with the effort but will remain stuck, as in mud. We use the wheelchair more now, which is a shame, but inevitable, I guess. :cry:

_________________
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 Dec 13, 2010 9:06 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Stuck and unstuck
Unbelievably, Dale is completely back to 'his normal' today. I took him to the lab for blood work this morning. He is a little unsteady .... but I would have taken him to church yesterday if he had been this mobile. The feet are working just fine.

Gads... I hate the unpredictability of this disease!

Other than a bit of delusional thinking that we had been robbed during the night, even his conversation is more reasonable than delusional today. It's going to be a good day... :P


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


Mon Dec 13, 2010 11:27 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Stuck and unstuck
I am happy for you, Leone. Cherish the good days. They are all the sweeter because you know they will not be forever. Smiles, Nan


Mon Dec 13, 2010 12:38 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Stuck and unstuck - Nan
That is so very true, Nan. I'm trying to make this day special for him. It's as if he has come back from the grave. Yesterday was such a huge crushing downer.

We came back from the lab this morning and I got out some boxes of very special Christmas decor which we've been collecting for 25 years. (Most of the items are frogs dressed in holiday hats - since we collect frogs.) He sat and watched while I unpacked them and we listened to Christmas music CDs.

He said he was hoping that he could be married to me in heaven. He said he was going to try to work that out. (Somehow that particular delusional thinking isn't so bad, is it?)

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


Mon Dec 13, 2010 2:27 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3315
Location: Vermont
Post Re: Stuck and unstuck
Yes, enjoy a good day, or good moment. They get fewer and fewer but I'll bet you remember every one of them! 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 Dec 13, 2010 3:38 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Stuck and unstuck
Leone, I tell Del he can't get away from me. It has been a joke throughout our marriage that I changed the vows on him. It's a story he likes to tell people and he chuckles each time he does it. He says, "You know the vows that say til death do us part? Well, she went and changed them to 'for all eternity.'" And then I say. "Yep...he's not getting away from me even in death." And in a sense, I do mean that. We have pre-paid cremation plans and our children have been told that when the first of us dies, the survivor gets the ashes. When the remaining spouse dies our ashes are to be stirred together....cause, remember, he's not getting away from me even in death...and then sprinkled on the Washington coastline or in some meadow toward Mt. Rainier. That way, as our kids drive by in I-5 they can look up at the mountain and maybe think of us.

So, tell Dale from me, that the marriage will last into eternity because he wills it so. I think what he said was so special.

Smiles, Nan


Mon Dec 13, 2010 6:11 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Stuck and unstuck
Nan, we're doing the same! Haven't picked a 'sprinkle' site yet but I'd like Mt. Rainier, I think. The summit would be good but I don't know of anyone willing to pack them up there, although Derek's son, Paul, has climbed it quite a few times--maybe he would. :lol:
PS: How much do ashes weight, anyway?

_________________
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 Dec 13, 2010 6:20 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Stuck and unstuck
Maybe a couple of pounds. We already have our Urns. They are sitting under our hearth. Some people find it quite morbid but I don't. It's a nice little wooden box and the also provide you with a smaller box that a person can pt a few ashes in and a place for a picture on the outside. Don't think we'll use that but you never know. Nan


Mon Dec 13, 2010 6:37 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Stuck and unstuck
I wonder if you put them in a ziplock bag they could be packed up to the summit of Mt. Rainier. Do you think just one person's ashes weigh two pounds? Four pounds would be rather a lot, although it is just a day climb--most of the time, anyway.

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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 Dec 13, 2010 6:53 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Stuck and unstuck
Wow, was I wrong. The weight of cremains is between 4 and 8 pounds according to a site I Googled. Wikipedia said 5.2 pounds, I think.

I don't want to be all the way at the top pf the mountain...too cold there and when you're standing on a mountain, everything looks kind of flattened. I think I wnat to do a meadow with a good view of the mountain, or maybe Kalaloch beach. That was one of my favorite camping sites because until we got too big to camp there, we could always get a site where we could sit and have a meal in the unit and watch the waves come in.

The kids can pick the place. As long as Del and I are stirred together I'm okay...but I don't want to be kept in a box on the closet shelf. I want my cremains to go back into the earth so the minerals can nourish something else.

Smiles, Nan


Mon Dec 13, 2010 7:27 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Stuck and unstuck
I'm glad you looked that up.... I thought it was heavier than two pounds. Dale's son died in prison almost two years ago and I know how surprisingly heavy the bag was. His wife divided the ashes into smaller urns and gave each member of the family one. We were planning to scatter the ashes in our yard... but never have.

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


Mon Dec 13, 2010 7:49 pm
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Joined: Sat Jul 19, 2008 10:29 am
Posts: 126
Location: Italy and Toronto (Canada)
Post Re: Stuck and unstuck
Regarding the legs freezing in place: my Dad started having this problem more than a year ago. At that time, he was being walked 3 times a day using a walker and with the help of a caregiver (to make sure he wouldn't lose his balance and fall). One day, when I was present, we were (all 3 of us) in the elevator of the nursing home, taking Dad down to the garden area for his walk. When the elevator doors opened, he just couldn't move his feet and his gaze was fixed on the ceiling of the elevator. His whole body was totally immobile and frozen in place. I couldn't even get him to lower his head.
Cut a long story short, the elevator door closed and we were going up and down in the elevator for 10 minutes! No matter how we coached him or coaxed him to move, he just couldn't! Finally I bent down and physically lifted one of his feet and put it forward and then the other one. Then he suddently un-froze, moved his head and started walking and we managed to get out of the elevator.
However, this problem occured more and more frequently. His Sinemet was already at its maximum dose and nothing else could be done. We got to the point that due to his freezing problem and his serious lack of balance and OH, it became so dangerous (and almost impossible) to get him to walk, that we all decided that it would be best to stop walking him to avoid serious injuries.
Of course, all this happened when Dad's disease was already in the final stages and not earlier on in the course of the disease.


Tue Dec 14, 2010 4:56 am
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