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 Not walking anymore 
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Joined: Tue Jun 09, 2009 11:11 pm
Posts: 117
Location: Tucson AZ
Post Not walking anymore
Hi everyone, it's me Lori R. I haven't been able to post because of my hubby getting worse. What I need to know now is what has been your experience with them not walking. He was walking with difficulty but now he can walk a little in the morning but not at night. It's EXTREMELY hard for me to lift him even to put him in the wheelchair and take care of his daily needs. When they don't walk much anymore or talk much have you found this as a sign the end is nearer than I think?
He leans to the right and has no strength at all. Had to call paramedics yesterday. Any thought appreciated.


Thu Aug 26, 2010 12:38 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Not walking anymore
I would say he is getting into the latter stages, but none of these is a predictor of imminent death. It may, however, be getting to a time when you will need to have help in-house in the evenings when he cannot help you make transfers, or you may need to look at placement.

I am sorry your LO is so ill. It is what I dread most for my LO, also who has greater abiloity in the mornings and much lessened ability in the evenings. Trying to lift a person whio weighs more than you do is not an easy task. Sometmes I think we compromise our health trying to be too heroic.

Nan


Thu Aug 26, 2010 12:50 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Not walking anymore
Someone in our local support group has lived with these same symptoms for 4 years or more.

The only symptom that seems to be a universal sign of end stages is sleeping 20+ hours/day.

You might speak with the MD about getting a referral for occupational therapy. And ask the OT about a patient lift. One brand is Hoyer. Another is Invacare.


Thu Aug 26, 2010 1:06 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3317
Location: Vermont
Post Re: Not walking anymore
Hi Lori - the various symptoms can be so different from one person to the other. My dad went from walking, shuffling slowly to completely unable to walk at all. After 3 weeks of intense therapy he was back to slowly shuffling. Then within a a few weeks no more walking at all. He hasn't walked in about a year.
He is now in under hospice care but the nurse says she doesn't think he's in the final stage of end of life. He's not well at all, can't perform any ADLs but he isn't sleeping 20 or more hours yet. So hard to predict when the end is likely to come.
Sending you good wishes during a very difficult time. 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.


Thu Aug 26, 2010 9:16 am
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Joined: Fri Jul 16, 2010 1:11 pm
Posts: 16
Location: Oakville, Ontario
Post Re: Not walking anymore
My experience with my father has been that he went from walking/shuffling; then having a very difficult time getting up and down from sitting; then impossible to do stairs and now he is hardly walking at all. He leans backward and to the side when standing (when we can get him up). He says he feels like he is leaning forward. This has all happened in a matter of weeks. He is in a LTC facility and they are managing with mobile chairs/walker/and pure muscle to get him transfered but a wheelchair will be handy (it is on order) so that I can take him for walks outside. It is hard to believe how fast this physical decline has been. My Dad is 6'5". Not easy to handle.

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Allison - caregiver to Donald (father) age 76 diagnosed with LBD July 09.


Thu Aug 26, 2010 4:36 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Not walking anymore
Lori,
My husband didn't walk for the last 18 months, none at all. I had to set my alarm at night for every few hours to turn him, I got him up everyday and dressed and he ate well, he had pureed food , I think thats a long time to last like that but I know others went longer in same condition, each one of them is so very different !

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Irene Selak


Thu Aug 26, 2010 5:32 pm
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Joined: Thu Jul 03, 2008 11:05 am
Posts: 150
Location: Raleigh, NC
Post Re: Not walking anymore
Lori,

My mother hasn't walked since she broke her hip two years ago. The hip healed just fine, but she seemed to forget how to walk during the month when we had to keep her off of that leg. For a while, she continued to help with transfers but probably hasn't attempted to stand in the past year. Now, because she spends so much time sitting, her legs no long straighten at all -- even when she's in bed.

Her ability to communicate is minimal. The few times she says anything intelligible -- a yes or no, by and large -- we can't be sure if she knows what she's responding to.

Yet she is in good shape as far as anything that would threaten her life goes. She eats everything she's offered, and she's still on solid food.

All that said, today I got a smile and laugh out of her (I'm not sure what she was laughing at, but who cares?), and she waved her fingers when I left. It was my best visit with her months. A good omen, I hope. We'll celebrate her 84th birthday on Sunday.

Garnet


Thu Aug 26, 2010 7:02 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Not walking anymore
Somebody please tell me I'm not the only one who does this. I find myself hoping this will all be over soon, telling myself I want that because it's too hard for Mom. But it's just as much for myself. I love Mom and will care for her as long as she is with me, whether still at home with me or in LTC. But I do find myself looking for signs that she might be in the end of life stage almost hopefully. I know it could still last a long time, but I still hope. I feel so guilty.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Thu Aug 26, 2010 10:20 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Not walking anymore
Listen Kate, you are not alone. I don't want this to continue for years. For my Mom and for myself. This is hard on everybody. She doesn't want to get to the point where she can't talk or becomes incontinent or be a huge burden. I want to live my own life freely and most of all travel. It looked like my Mom was dying earlier this year. We were evaluated for hospice twice. Now, all the signs are good and cognitively (when she is on exelon) she is much, much better. But her desire to die and not be a burden is still there. And I tell myself that she could get pneumonia or the flu this winter or who knows what and be gone in a week. There was a point made in the study that Robin just posted. It's hard on the caregivers who feel that they had not planned on taking care of someone at this point in middle age. We had other plans.

One point I have wanted to make for those who can't bear the thought of placing their LO's is that when they go to an AL or a Nursing Home or whatever it doesn't mean that you have to "abandon them". We visit three times a day. We are integral to my Mom's successfully living in an ALF. And yet, there are others who are able to transfer her and who put her to bed and shower her and dress her and prepare her meals. And when the time comes, they will put her in a wheelchair, etc. But we go and we read to her and at this point take her out and walk with her and put lotion on her legs and an icepack for her knee, and take her to doctors and make sure the meds are given correctly and listen to her stories and comfort her and flush the toilet for her, etc.

So, Kate, you are not alone. You're human and you're a good person and you do the best you can. And I, for one, think you are wonderful. Annie

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


Thu Aug 26, 2010 11:26 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Not walking anymore
At a support group I attended in AZ, there was a young [probably late thirties, early forties] woman who had been taking care of her mother who had dementia for several years and was nearly at the end of her rope. At one session, she reported that, earlier in the week, her mother had stopped eating, wouldn't get out of bed, stopped talking. She said, tears starting to flow, "I thought, I'm finally going to get my life back! And then, a few days later, she hopped out of bed and wanted something to eat." We all understood the pain and ambivalence she was feeling. Yes, she loved her mother dearly and had given her best to her. But she was tired and wanted it over. A few weeks later, her mother did pass and we silently rejoiced for both of them.

I'm sure we have all had similar thoughts and feelings because we are human and because we are tired. And, like David, inclined to ask, "How long, O LORD?"

_________________
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.


Fri Aug 27, 2010 12:45 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Not walking anymore
Kate,
Often when people tell me about this (and it is a very common feeling), I wonder if there are signs in the family member that are in fact signs of the end and the caregiver is picking up on that. When my own thoughts shifted about my father -- from wanting to fight tooth-and-nail at every symptom, to hoping that his suffering would end -- he had started suffering, and it was a bad situation that wasn't going to get better. Despite that, when he died, it was still a huge shock. And, three years later, I'm still sad to have lost him but I am comforted in knowing that he is no longer suffering.
Robin


Fri Aug 27, 2010 12:51 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Not walking anymore
This week Frank has had several good days and I think, this is ok, we can do this, but as you all know, this too shall pass. It's probably good that there are so many flucuations, because we have hope the bad times will improve. During the bad days when I have to follow him like a shadow, and he resists everything I try to do with him, I start to wonder, how long can we do this. Physically, he is very health, no issues, so we could have years. I know the average time span is 5-7 yrs, but can go 2-20yrs, that's the window I think we are probably in. We all do the very best we can, ignoring our own needs, so NEVER feel guilty.

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


Fri Aug 27, 2010 8:13 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3317
Location: Vermont
Post Re: Not walking anymore
Like everyone else has said, you are definitely not alone in your feelings Kate. My dad has had no quality of life for over a year. He went suddenly from independent living to being in diapers and being in bed most of the time. His cognition took a huge decline at the same time his immobility happened. It is like watching your LO being tortured, day in and day out. I will miss him when he dies, but I have been mourning the man he was, since that man has been gone for well over a year.
My own health has suffered, is still suffering, no matter what stress reduction things I try to do. Prior to Dec. I have never had to be on daily meds. and now I am looking at being on some things for the rest of my life.
Who expects to work their whole life, raise kids, have a husband and home to take care of too, and then have a parent that suddenly needs 100% care, just as you're retiring and looking forward to a fun life of traveling and doing what you want?
Even though my dad is in an ALF, that doesn't mean all the other stuff gets done for him and his house by someone else. That doesn't mean his medical care is being overseen and coordinated by anyone else.
I hope every night that I get a call in the morning saying my dad died peacefully in his sleep. I hope that for him and for me. Last Fri. when I was dealing with more dr. issues, I was so frustrated, so at the end of my rope, I felt my body go through some sort of shift. I can't explain it but I had this very weird feeling. I said to my husband that I just can't take any more of this trying to work with these drs. who have him on meds that probably aren't good for him but won't change them, etc. And I ended with "I feel like I'm going to end up in the hospital by the end of the weekend."
Sat. night I suddenly became very sick and have been in bed sick all week, heading back to the dr. this morning. I have been healthy as a horse my whole life. The stress just gets to me and my body bears the brunt. I don't want to spend my life like this much longer. It's not fair to me or my own family, yet here we are. And, it's not like my dad is content either. He's miserable.
OK. Enough whining. I'm off to the dr. 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.


Fri Aug 27, 2010 9:17 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Not walking anymore
Hope you are well on your way back to health, Lynn. Especially with your trip coming up!

I know that stress weakens to immune system. I've had a sinus problem lately and the glands in my neck are swollen and I feel all achy--no fever. No idea what it could be but I'm oh, so tired! Hope it's not lymphoma or something--how would we cope? Sorry to be so morbid. As an RN I guess I imagine the worst. Now I'LL quit whining! :lol:

To all you caregivers--in person or from afar--I send cyber-hugs and encouragement. God bless you for all you do. We surely need Him as well as each other!

_________________
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.


Fri Aug 27, 2010 9:38 am
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Joined: Fri Jul 16, 2010 1:11 pm
Posts: 16
Location: Oakville, Ontario
Post Re: Not walking anymore
What we all want is for them not too suffer anymore. My mind is boggled every day at how quickly this disease is taking my father from me and a grandfather from my children. I had no idea last year when he was diagnosed that we would have only 9 months together before I was unable to look after him anymore. I feel guilty that I can only visit with him once a day between work and kids and home obligations. I do go every day though and that is more visits than most of the residents get. There are days I wish I hadn't gone as it is so very hard but then (like yesterday) we will have a few chuckles over something and I see bits of my Dad that I don't see often anymore. He said a few months ago that he wished he had a bad heart and would just die of a heart attack instead of living through this illness and now I agree with him.
It is so sad.

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Allison - caregiver to Donald (father) age 76 diagnosed with LBD July 09.


Fri Aug 27, 2010 1:10 pm
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