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 Mom in late stages of LBD 
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Joined: Mon Mar 14, 2011 12:23 am
Posts: 15
Post Mom in late stages of LBD
I have been reading articles and posts on this site since I was lucky enough to come across it and am now taking the plunge of posting my introduction. This site has saved my sanity many times as new developments came along in my Mom's disease and I couldn't figure out what to do next. We noticed about two years ago that she was no longer able to function well at home on her own - we hired a caregiver to assist her with things at home several hours a day - I remember when even that amount of care was hard on her pride ( she is now totally dependent for all ADLs). I went to see her every week-I live an hour and a half away. On one visit she asked me to come look at her shirts, she said something was wrong with them -it turned out she couldn't figure out how to put them on - the first heartbreak for both of us in what has been a long series of loss of abilities. What was first thought to be dementia then Parkinson's now seems to clearly be LBD. Through many Dr. visits Mom has received good care -started on Aricept, Namenda, an anti depressant-citalopram , then as things progressed Carbidopa-levadopa-which brought on hallucinations in doses that she needed for good movement - we reduced it and time it out at 1 pill every 3 hours. Finally now even with a reduction in the C - levadopa the agitation and hallucinations brought on the need for Seroquel - I really hate having to go to such a strong medication (she now sleeps most of the time and when she is awake there is a glazed look to her eyes) but seeing her in the agony of the agitation was awful! I have been lucky enough to have a brother who lives near Mom and we split the burden -he does the finances and home repair-I schedule the caregivers now 24 hours a day, buy groceries and supplies, do research and 3 shifts each week. So many of the things I have read on others posts have also been our experience. Mom has had three bouts of Cellulitis (skin infection) in the last two years and each time her movement and mental abilities take a rapid downturn. At each step down in the disease we grieve, adjust care giving and expectations, and relax for a moment only to have the next downturn hit. Several times I have thought we just can't do this anymore then we find our way through and keep going. Mom is a homebody and so wanted to remain at home. She has had one on one loving caregivers -she currently has 8 working a total of 90 shifts a month. We took out a reverse mortgage to pay for this last year of care giving and this summer will have to move her to a nursing home as that money runs out. I wish things were different and she could stay at home until the end but we are out of options. I am glad Mom got to experience, accept and enjoy for a time being cared for. I dread the step of moving her out of her home. I have talked with the nursing home ombudsman in her town and consulted the Mn State rating guide for nursing homes _ now just have to make myself go visit them. Long ago Mom expressed wanting to go to a certain nursing home when the time came and she went with us to visit it two years ago. They supposedly put us on a waiting list -when I never heard from them I called back and was told they don't take names for a waiting list. So its on to the others or possibly through a hospitalization Mom's choice home might have an opening if the cards fall that way. This has been hard- really hard and the support of this site has been a blessing -I so need to know others experience the same things - so thank you all for sharing your experiences!


Thu Mar 17, 2011 12:12 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Mom in late stages of LBD
Cara,

That fine balance between movement and psychosis is impossible to find in some. I'm sorry to know it's that way in your mom.

You and your brother are doing your best. That's all any parent could ask. I'm sure your mother is very proud of you both.

Please consider making arrangements to donate your mother's brain for confirmation of the diagnosis and so it can help medical researchers find answers to these diseases.

Robin


Thu Mar 17, 2011 1:24 am
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Joined: Mon Mar 14, 2011 12:23 am
Posts: 15
Post Re: Mom in late stages of LBD
Thanks Robin -I don't know much about the donation process -where do I find out about it?


Thu Mar 17, 2011 2:04 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Mom in late stages of LBD
Welcome, Cara. Glad for your introduction and God bless you for your role in caring for your mother! When placement is inevitable [and it usually is, at some point] it's important to start looking early, as you have done. Don't worry too much about what your mother will think about the move. She may not even be much aware of it. I spend much of the day with my husband at his NH and he thinks we both live there. :P

_________________
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 Mar 17, 2011 10:01 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Mom in late stages of LBD
Cara,
There's quite a bit of info in this thread on brain donation:
viewtopic.php?f=14&t=1290
Robin


Thu Mar 17, 2011 10:57 am
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Mom in late stages of LBD
Robin:

With your commitment to brain donations, you have single-handedly made a significant contribution to research. It wouldn't even occur to most of us if you hadn't talked about it on this forum.


Thu Mar 17, 2011 12:55 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: Mom in late stages of LBD
Welcome Cara, and I'm glad you've already found this site to be helpful. I can relate to everything you've said. It is very difficult to move our LOs to care facilities, but between the cost of home care, and needing 2 or more CGs 24/7 (which my dad required his last 15 mo. or so) we just don't have choices at some point. You are doing the best you can, and it sounds like your brother is too. You are very lucky that you have a sibling sharing the responsibilities - this is a luxury that many of us did not have but tried to have/wish we'd had. Take care of you too, 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 Mar 17, 2011 9:54 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: Mom in late stages of LBD
Gail,
Thank you. I do feel it's important work. I hope it will make a difference.
Robin


Fri Mar 18, 2011 12:06 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Mom in late stages of LBD
Dear Cara,
I also extend a welcome here and it seems like you and the family are doing the very best you can and I am sure your Mom knows it too ! I am glad the forums has been helpful to you on this journey with your Mom.
Your Mom has some great kids, something she certainly can be proud of !

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Irene Selak


Fri Mar 18, 2011 10:40 am
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Joined: Mon Mar 14, 2011 12:23 am
Posts: 15
Post Re: Mom in late stages of LBD
Thank you all for your replies. I did go to Mom's yesterday and made myself stop on the way and look at my second nursing home choice. I was pleasantly surprised. While it is one of the older nursing homes in town- the inside was pleasant and welcoming and the emphasis seemed to be on the residents. Each room had a large window to the outside -bird feeders are encouraged - one of mom's pleasures is watching the birds. They have other residents with LBD and seemed familiar with their special requirements. So I left relieved that when the time comes this feels like a good fit for Mom. Mom was having a tough time -still the Seroquel doesn't seemed to be doing much more than making her sleep and when she is awake she is agitated. She is on a low dose 1/2 of 25 mg in the morning and afternoon and night. I had written to her Dr. describing how things were going ( as our next appointment isn't for three weeks) and got a call back today listing possible options that we can try next. Mom was in tears this afternoon trying to tell me and her caregiver how hard all this is for her and how depressed she is - so at least we got to connect even though it was sad -I think she felt better after getting some of it out. She has been house bound this winter except for trips to the Dr. (because her infection and the difficultly of transporting her ) It has been a long winter in MN. Next week there should be warmer weather -even a trip around the block would help some I think too. So on it goes.


Sat Mar 19, 2011 1:17 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Mom in late stages of LBD
Cara,
I am glad you at least stopped and looked no harm in that and as you found it was surprising good in the sense it seemed to meet her needs better. LBD is an illness that all involved must partner in order for things to work best for the LBD'er !
Good Luck!

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Irene Selak


Sat Mar 19, 2011 8:25 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Mom in late stages of LBD
Cara, my dad started on the very same dosage of seroquel, and eventually his body adjusted, and he didn't sleep as much. He is now on higher doses and it has made a huge difference. There are still some bad days, but at least there are good days now also. I know it may be different for you mother, but trial and error are what will eventually find what works for her. God Bless

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cared for Dad who passed away on January 28th 2013 R.I.P.


Sat Mar 19, 2011 10:20 am
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Joined: Wed Mar 09, 2011 12:22 am
Posts: 75
Post Re: Mom in late stages of LBD
Welcome Cara, I know this is a difficult time in your mother's disease process. The hard things will make us stronger, but boy does some growth hurt. :x

This bulletin board is a great sounding board and research resource for all the LBD caregivers. I don't know what I would have done if I had not found this place.

Sorry to have you here with us...so glad you found us!

_________________
~~Debra, 52, wife to Chris, 64 DX Vascular Dementia 9/10; Alz 10 or 11/2010; Pseudo Dementia 01/11; LBD in 03/11..Was at home until 4/29, 2011, now in a Alz fac./dementia unit.
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Sat Mar 19, 2011 12:05 pm
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Joined: Mon Mar 14, 2011 12:23 am
Posts: 15
Post Re: Mom in late stages of LBD
You know when this disease seems so hard to deal with, I look at all your posts and says to myself here are all these people dealing with it, and it gives me strength to keep going. Irene, Ger and Deb thank you for your encouragement - Ger it is helpful to know your experience with the Seroquel -we are now charting mom's moods hourly so we can know how this is shaking out - your post will help us hang in there to see just if this can be helpful. I note you are caring for both your Mom and Dad what a huge task! My Dad passed last Oct. after three years of struggling with dementia and epilepsy. I miss him but am glad he is at peace. Deb I noted how young you and your LO are to be dealing with all this -thank you for sharing.


Sat Mar 19, 2011 12:20 pm
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