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 End stages? 
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Joined: Fri Apr 03, 2009 9:55 am
Posts: 61
Post End stages?
I was wondering if anyone feels like my mom is at her end stages. In July I went to her house and the caregiver said she couldn't walk. To make a long story short she ended up in the hospital for a week and then to rehab for 6 weeks. They could find no reason for not walking except parkinsisom (SP?)The doctor put her on sinamet and after a few days could walk with the help of a walker and an aid. She is now in a private 24 hour care home. The sinamet had to be cut down because of halluncinations but she still can walk with help. She walks only on her tippy toes. She rarely makes sence when she talks, sleeps alot or is terribly aggitated. She use to have good days and bad but seem lately they are bad or worse. One of us go to see her everyday. somedays she just sleeps others she is so confused and gets angry with us for not understanding what she is trying to tell us. She will yell at us then just close her eyes. She mostly just sits in her chair, she doesn't want to do anything, watching tv is bad because she thinks everything is real, she can't get up on her own at all. We are all so heart broken. We found a wonderful place for her and thought after rehab she would improve but she seems worse everyday. She is 76 and was diag in 2008. I hate seeing her just sit and stare or be so agitated. I didn't mean to ramble on just need some support and insite as to if you think this could be the end comming.


Tue Nov 16, 2010 3:51 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: End stages?
From my limited experience, this stage may last several years. My mother passed away in September at 104. She was still living alone at age 100 but the next year, she was in a wheelchair and too weak to walk, almost blind, and suffering from severe dementia. We placed her in a home. She had delusions constantly and was often angry at the staff.

Obviously, we had the same questions you have. Like you, we had found a beautiful place for her to live. It was sad she could not enjoy it. We wondered how long this could last.

As long as she continued to eat regularly - with a good appetite, she stayed about the same. Our mother ate everything placed in front of her. However, if she didn't like something, she would spit it out. Sometimes, she would spit it at the caregiver... or whomever was feeding her. It was sad for all of us.

I'm so sorry your mother is at this stage. There is no way to know how long her life will be. However, when she stops eating, it may be a sign that the end is near. Our mother stopped eating ten days before her death, September 19th.

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


Tue Nov 16, 2010 4:34 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: End stages?
She sounds a lot like my husband has been for the past few years so, no, I wouldn't think she's in the end stage. But who knows? Walking, not walking, agitation, periods of sleeping all the time, periods of hardly sleeping at all, delusions, hallucinations, talking, not talking---it just sounds like Lewy to me. I'm sorry--it's such an awful--and variable--disease.

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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 Nov 16, 2010 4:37 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: End stages?
Funny, this question was just asked at a PD caregiver support group meeting I was at today where we were talking about making advance care directives now before you are in crisis mode.

Generally speaking, someone is in the final stages of life when they are sleeping 22+ hours a day.

Many people put themselves in the final stages of life when eating becomes a multiple-hour effort for each meal and includes lots of choking (and maybe the Heimlich maneuver) with little consumption.


Tue Nov 16, 2010 6:37 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: End stages?
You can look up the stages for Alzheimer's Disease. Even though LBD and AD are very different, the end stage of all kinds of dementia are pretty similar. As Robin pointed out, not eating, trouble swallowing, sleeping most of the time every day...

I should point out that the stage 4 for my husband noted in my signature does not correspond to the AD stage 4. It's from another source and is more like Stage 6 for AD.

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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 Nov 16, 2010 7:42 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: End stages?
Quote:
Generally speaking, someone is in the final stages of life when they are sleeping 22+ hours a day.


My brother in law died of cancer (multiple myeloma) in 2008. He was active - going out to lunch, etc. up to 24 hours before he died. My sister called me just before he died and she said, "He's been sleeping all day. He must be tired." Then, she called later and said, "It doesn't look like he is going to wake up. We've called hospice." He had just put himself to bed and that was it. The whole family was in shock. We had no idea that he was ready to die. The cancer was awful - but the death was easy.

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


Tue Nov 16, 2010 8:02 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: End stages?
Sadly the medications can be a real balancing act, what's good for one thing causes issues foir another, the type of end stage we went through was like Robin said sleeping many , many hours in a 24 hr period very little food maybe a few spoons of pudding in a day and not much drinking either and than that stops completely, the last few days were uncontrolable fevers which would not reduce with suppositories or anythng we did.

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Irene Selak


Tue Nov 16, 2010 8:19 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3402
Location: Vermont
Post Re: End stages?
From my experience with my dad, it sounds like he was like your mom about 18 months ago. He is now in end of life stage as of about 5 days ago. As everyone's said, it's so hard to tell, but unless she has some other health issue (heart disease, cancer, etc.) it doesn't sound like the end will be coming any time real soon, at least not from the dementia-related reasons. It is horrible to watch your LO go through this. Everyone here knows that and is here to support you. All the best and I hope you check back often. 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.


Tue Nov 16, 2010 10:06 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: End stages?
Diana -

It sounds like you are doing the best you can to ensure your mother is safe and well cared for.

I'm wondering if she's receiving any dementia medication? Has anything been tried to deal with the confusion? I see an old post of yours that indicates she was on Namenda and Aricept over 18 months ago. What about now?

Robin


Wed Nov 17, 2010 12:10 am
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Joined: Fri Apr 03, 2009 9:55 am
Posts: 61
Post Re: End stages?
Thank you all for your responses. I was afraid that is what you would say. I know that sounds terrible to some but as you all know this is such a terrible way to live. I hate seing her this way. Last night I was with her and she was so confused nothing she said made much sence. She was just like mockturtle said, it was lets walk, lets stop, take me home, where am I and so on. She hears everything people say and the thinks its about her. she told me she gave a man the wrong meds and he died and they are mad at her. (the caregivers were talking about a man there that they are changing his meds)
As far as her meds she is still on namenda, aricept and the doctor added sinemet. she only takes it 2 times a day because 3 times made her halluncinate more.
It's so sad to think she could live years like this. She is healthy in ever other aspect. She eats good most of the time and only seems to have trouble swallowing water.
Thank you again, I don't post often but do read alot and you all are a big help
Diana


Wed Nov 17, 2010 4:57 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: End stages?
Diana, it is sad to see our LOs live like this. I think it might be worse for us than for them. The best we can do, I think, is to put one foot in front of the other and live each day as it comes. All any of us really have is now. God bless you!! We're all in this mess together.

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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.


Wed Nov 17, 2010 5:20 pm
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Joined: Wed Aug 11, 2010 2:34 am
Posts: 54
Post Re: End stages?
After the beautiful visit dad had yesterday from old friends we were discussing the fact that dad is quite possibly going to be around for a couple of years as he is progressing slowly with his condition. As with many sufferers he keeps general good health and you wonder what will be the thing that is the cause of his passing? It is the great unknown.
Dad told these friends that I was his angel and he was glad that I was honest with him and talked to him about what he was experiencing and knowledge was power and I was always finding out something that helps him to understand and get through this experience. I don't take compliments well but my heart swelled when they told me this. They also agreed that the mum and dad situation may not be overcome until the end because they know how stubborn mum can be and more than likely mum is feeling a great deal of guilt and unfortunately won't or doesn't realize that she needs to talk to like minded people going through the same stuff, but they said this is dads time. It is time to look after dad like he always did for his family and I was so relieved that people who I had not seen or spoken to in ages also, from the outside looking in saw how dad allowed mum to look after the children all these years and share the house he built with all these families and even though he wanted to travel and go places mum never wanted to go anywhere and now it is too late for any of that and it is sad that we have all been dealt this card in life. We did all agree however that dad was best being where he is at the ALF where he can be in a quiet and caring environment. He even boasted about going to the mood room on a few occasions! And the staff confirmed this.


Wed Nov 17, 2010 7:44 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: End stages?
Kelli,
I'm sure you will cherish that comment forever from your father's wonderful friends. Obviously your father still has great insight!
Robin


Fri Nov 19, 2010 5:35 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3402
Location: Vermont
Post Re: End stages?
Bonbon- I'd highly recommend a small booklet that the hospice nurse gave me today called "Gone from my Sight - The Dying Experience" by Barbara Karnes. It's a very fast read - about 5 minutes. It sums up what to expect about 1 - 3 mo. prior to death, 1 - 2 weeks and 2 days to hours before death. I wish I'd had this a while ago but am glad she gave it to me today. I'd recommend it to anyone who doesn't know the signs and symptoms and I'm sure every hospice org. must have copies of it.
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.


Tue Nov 23, 2010 10:01 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3402
Location: Vermont
Post Re: End stages?
Today my dad said many times "I'm ready to go. I'm ready to leave. Why am I still here?" and the real kicker "I need somebody to get rid of me." I asked him if he was waiting for someone or something and he said no, he just couldn't go and didn't know why. My sister and I both talked to him and told him we loved him, we are all good and strong and that he can leave any time. I also told him that my mom, his mom and his best friends would all come for him, so he can go with them when he is ready. At one point he opened his eyes and said "That's baloney!" Eventually the morphine got him to sleep and just when we thought he was sleeping peacefully he started yelling "help, help" over and over. Then my sister talked with him and got him back to sleep. It seems to be taking a long time for him to die, and even HE thinks he's ready. Annie - if he could put his coat on and sit by the door like your mom, I think he'd be doing that right now! 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.


Wed Nov 24, 2010 4:44 pm
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