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 Facing the (slow) end 
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Facing the (slow) end
I have not written for some time, as all spare minutes were swallowed by work and the geriatric world and trying to help my daughter and her family in between.

My mother was transferred to a special care unit (secure, dementia care) in January, same building where my dad is still in their assisted living apartment. We began hospice care a few weeks later. My dad, who is 97 and frail but relatively cognitively intact, visits her 3 or 4 times a day, trundling slowly over with his walker. I visit both of them every day, as they are less than 10 minutes from my office and from my home, and help feed her dinner, sit with her, and sit with my dad in the evening.

At first, she could still feed herself, sitting at the dining table with 4 or 5 other residents, and carry on a conversation, in between apologies for being "such a mess". Then she had a fall getting out of bed, and had back pain, and went on vicodin (gastrointestinal problems preclude her taking any of the usual non-steroidal pain meds, and acetaminophen was just not helping.) Last week she was diagnosed with shingles - at least with the pain meds on board, she has not been too uncomfortable. The doctor put her on antivirals right away and the lesions were pretty much gone by today - no more isolation/ infection control.

But over the last month, she has declined quite rapidly. She slept more and more - now it's virtually all the time, and when she is awake, she says she is terribly tired. She ate less and less, lost 11 lb. in a month, and in last few days has started to refuse everything except a little ice cream. She barely speaks, though she is coherent when she can summon the strength. Her memory is spared - she knows who has visited, and can say hello to my sister on the phone, and knows where she is. Her executive function has long been toast, and her visual perception also. At least the delusions and hallucinations have been well controlled by a low dose of seroquel.

My father is taking all this very hard. He keeps thinking there must be something we could do - that somehow, with all my dementia research background, I could find a way to bring her function back. He fears the very word "hospice" even though he knows that the lovely hospice folks are doing their best to make my mom happy and comfortable. It breaks his heart to go there and sit with her, and have her not say a word, though she always tells me later that he has been to visit and held her hand. She just cannot summon the energy to do much, and I think she finds his presence a comfort without any words. (I make her talk, at least a little, to see if there is anything she needs or that I can do for her - it tires her, but I can often make something a little easier.)

So we are watching her slip gently away. She might come back a little as she gets over the infection - who knows, LBD is so unpredictable. But my guess is that she is in her last weeks, if not days, and that only her physical stamina and her attachment to my dad and to me are holding her here now. She is coherent enough to have some sense of this, and sometimes a stray fear sneaks in - she told me last week that she hoped it wouldn't hurt too much when they put her to sleep.

I do my best to reassure her that she is safe and we will care for her, and to comfort my dad in his loneliness, and to keep other family members posted (my daughter has been unable to visit with the quarantine but came and waved outside the window, with her children, on Easter, and said hi on cell phone.) Luckily medical school faculty have family leave, and we are closing in on the time for me to take that, or the vacation time I never use.

It's tough. But all of you know that, I think - either from having been there already, or from knowing the time will come.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Thu Apr 04, 2013 12:15 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: Facing the (slow) end
Sending you a big cyber hug, Laurel. It is so hard seeing our LOs in their final days. If it's important for you to be with your mom at the end, it sounds like you are considering taking FMLA or whatever kind of sick days you are able to and maybe you should do that sooner rather than later. I missed being with my dad on his last day by about 2 days, and can't push the "reset button" for that. 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.


Thu Apr 04, 2013 2:38 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Facing the (slow) end
Laural,
It is sad reading your post, It does sound like you could be nearing the end but as we all know stranger things have happened and they come back but they almost never come back to where they were so I would say, take each day as it comes and , I feel so sad for your Dad this has to be so very hard on him. My thoughts are with you and your parents as they go through this.

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Irene Selak


Thu Apr 04, 2013 6:11 pm
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Joined: Thu Apr 21, 2011 9:07 pm
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Post Re: Facing the (slow) end
Thanks so much, Lynn and Irene - we can't be sure what happens next, but I'm trying to be prepared as best I can. The good news is that I'm only 10 minutes from them. I can drop anything here and be at her side very quickly. Meanwhile, I'm trying to get the last few urgent deadline things off the desk, some each day, and spend a few hours there each day after that.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Thu Apr 04, 2013 6:29 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Facing the (slow) end
Hugs and blessings, Laurel!

_________________
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.


Thu Apr 04, 2013 7:17 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Facing the (slow) end
In another demonstration of the utter unpredictability of this crazy disease, my mom is much better this evening.

I went to see her a little before dinner time and found her semi-awake, and with better color. Asked her how she was feeling, and she said, "I feel fine" - then asked me to help her as she wanted to go pee before dinner. She got out of bed with minimal help, trundled off to bath on her walker, peed (evidently having been able to wait until she got there), and then started out the door toward the dining room. I convinced her she could eat in bed, and got her resettled. They messed up and sent regular food, and she ate only a few bites of mashed potato and one bite of some mystery meat, and drank half a glass of milk to wash down the dinner. But she was quite enthusiastic about the ice cream and said, "This tastes very good."

It took about an hour to get through dinner, but she was semi-awake for at least some of the time, and fully awake for a bit, and relatively conversational compared to recent days. Before I left, she said she felt better than yesterday (no kidding) and that she thought she had really needed some more sleep. She said she was tired and wanted to sleep after dinner, but it wasn't that bone-weary, slurring her words, barely able to get them out, tired from last night.

So who knows... maybe part of her rapid decline was the onset of shingles and her weakened immune system, and perhaps the antiviral has cleared enough of the virus that she is improving. There have been case reports of association, and the nervous system is clearly involved in shingles flare-ups. Alternatively, there have been (very rare) case reports of delirium associated with the standard antiviral, acyclovir, and she just went off that today.

Whatever the cause, we are all breathing easier - for the moment...
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Thu Apr 04, 2013 11:40 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: Facing the (slow) end
Hi Laurel - time will tell if this is the "normal" LBD roller coaster or if your ideas about shingles and meds may be what's affected her. My dad had a major rally for a few hours before he died - clear thoughts, normal volume speech, speech with correct words, joking (he hadn't done this for almost 2 years) and 2 full meals (hadn't eaten more than a few bites a day for many months). He was no better as far as mobility, ability to move himself in bed, etc. but communication and eating were substantially improved that morning. So, you just never know with the ups and downs of this crazy disease.

It must have felt really good to see her improvement, even if it turns out to be a temporary thing. Hugs, 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.


Fri Apr 05, 2013 12:01 am
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Facing the (slow) end
Thanks, Lynn - yes, we are enjoying the improvement even if it is short-lived. She is back to walking out and eating in the little dining room, eating a little better, and more or less lucid though she still moans a lot at dinner. In other words, back to more or less the pre-shingles status quo.

It's more like a roller coaster in the dark. But we are hanging on.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Sat Apr 06, 2013 12:56 am
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Joined: Tue Feb 06, 2007 8:35 pm
Posts: 51
Location: Toronto, Canada
Post Re: Facing the (slow) end
Labeckett,

My mom had shingles just prior to being dx'd with LBD. What is your take on LBD being a prion disease and could varicella be a causative agent?

Thanks,
Dale

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Dale
[My dear, Mom, Beatrice, (born in 1929) was diagnosed with LBD in Dec 2006. She passed away peacefully on July 12, 2013 at Embassy Hall, Shannex, Quispamsis, N.B.]


Sun May 05, 2013 1:28 am
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Facing the (slow) end
Hi Dale,
Good questions! There is some evidence that the alpha synuclein pathology characteristic of Lewy bodies may involve misfolded proteins, and that those can be transmitted from one cell to another. This is sort of like prion behavior such as that found in Creutzfeld-Jakob disease and its variant, so-called mad cow disease. I don't know that I'd consider the evidence conclusive yet. There is a lot of active research around this topic.

I do not know of any evidence linking varicella to Lewy body dementia, but it's possible that this or any other infection could weaken the person and reveal an underlying progressive condition that had been masked while the person was healthy. Many of us have reported that our family members with LBD are noticeably worse when they are sick, such as with urinary tract infections, and may not recover back to prior baseline.

We are trying hard to figure out more about LBD, AD, and other dementias. Of course with the cuts to NIH funding and the idiotic sequester, a lot of research is on hold or uncertain about future funding - we just had a two hour meeting yesterday to discuss the funding crisis in AD research. We are facing cutting projects, cutting staff, and other hard choices. Pediatric cancer situation is even worse - 80 or 85% of kids with cancer are enrolled in clinical trials, mostly sponsored by NIH, an effort that's brought 5-year survival up from 20% to 80% or better. But the cuts mean stopping trials early and/or not starting new ones, so there will be kids who are not treated.

Sorry to get on my soapbox but I simply do not understand the priorities that could lead to this situation. I've worked in this field for 25 years and I have never felt so discouraged by the climate of ignorance and disrespect for science and medical research. Sigh.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Sun May 12, 2013 12:37 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: Facing the (slow) end
Laurel - somehow we seem to find money for wars, but saving lives, education, helping the elderly, etc. isn't given monetary priority. I'm joining you on your soapbox. 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 May 16, 2013 10:07 pm
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Joined: Tue Feb 06, 2007 8:35 pm
Posts: 51
Location: Toronto, Canada
Post Re: Facing the (slow) end
Thank you, Laurel. I only have a background in psych studies, but I can see so many areas for possible research study yet no real pioneering work into them; and, being Canadian, I wasn't seeing the whole American scenario. You've hit the nail on the head and certainly have enlightened me.

I was in NB over the Mother's Day weekend and fed mom (she's on blended foods now with no ability to feed herself). Nurses are hinting to my siblings that they will soon need to have a "round table" discussion because occasionally Mom has refused to eat when they tried to feed her. She was fine for me--what gives? So are they planning NG-tube feeding or simply letting her starve? Heaven forbid they would do the latter. She does have a really stubborn streak though, yet I hadn't thought feeding was an issue because she ate for me (not everything on the plate), but a good amount.

What to do?

Sigh.

_________________
Dale
[My dear, Mom, Beatrice, (born in 1929) was diagnosed with LBD in Dec 2006. She passed away peacefully on July 12, 2013 at Embassy Hall, Shannex, Quispamsis, N.B.]


Fri May 17, 2013 9:52 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Facing the (slow) end
My experience with feeding my husband is that some days he will eat and some days he simply won't. The staff at the nursing facility also see the variation. We have added ice cream to every meal because he likes it best. But there is no question that he has lost interest in food and is losing weight. A feeding tube is not an option, per his advanced directive. Part of the body's shutting-down process is a loss of appetite.

It is unlikely that an NG tube would be used for your mother. A nasogastric tube is very uncomfortable and can be easily dislodged, risking aspiration. Placement of a gastrostomy tube [a tube entering the stomach] would be the likely approach. Does your mother have any advanced directives regarding medical interventions?

_________________
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 May 17, 2013 10:26 am
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Joined: Tue Feb 06, 2007 8:35 pm
Posts: 51
Location: Toronto, Canada
Post Re: Facing the (slow) end
The family have put a DNR order on her chart, but there's no living will or such. So, I guess that's what they meant about "round table" discussion that they mentioned to my sister-in-law. Poor soul, she still can smile and even laugh, but her muscles are very contracted and it is getting very difficult to dress and move her to toilet. She has lost a lot of weight and at 5'6" is well under 100 lb. My heart aches for her and I wish I could be closer but job and family ties me to Toronto.

Thanks for your reply -- makes sense.

_________________
Dale
[My dear, Mom, Beatrice, (born in 1929) was diagnosed with LBD in Dec 2006. She passed away peacefully on July 12, 2013 at Embassy Hall, Shannex, Quispamsis, N.B.]


Fri May 17, 2013 10:39 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Facing the (slow) end
Dale, this a hard subject but you might want to do some reading about feeding issues in the end-of-life context. What you and I might thinking of "starving" is very different. This is obviously a personal decision but there is good scientific evidence that tube feeding someone at the end of life is not helpful and can even be harmful if the body has begun the long process of shutting down. Understanding how this works can make it easier on the family.

I am dealing with this issue for my own mother so I know how difficult it is. Best of luck with your dear mother.

Julianne


Fri May 17, 2013 12:00 pm
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