View unanswered posts | View active topics It is currently Mon Nov 24, 2014 2:58 am



Reply to topic  [ 9 posts ] 
 Thanks for reading 
Author Message

Joined: Fri Apr 06, 2012 10:13 pm
Posts: 17
Post Thanks for reading
Hi Everyone,

I have been reading the forum for a while and I am so grateful to find a place with others that know about LBD. In fact, before I found this forum and subsequently read the Whitworths’ book about LBD, I had not known anyone, including doctors, who knew anything about this dreadful disease.

Just a little background - my mom was diagnosed with Lewy Body and with cancer last year (yes, a double whammy). Not knowing anything about Lewy Body, and the fact that my mom still acted "normal" mentally, we focused more on the cancer than the impending dementia.

Unfortunately, we should have prepared ourselves more for what was to come with the dementia. Hindsight is 20/20, of course, but now that I am learning more about LBD, I am amazed at how similar others' experiences are, and how "typically" she has progressed in a disease that has so many variables.

My mom is currently in a skilled nursing facility receiving therapy for a broken arm. She is only there temporarily and they are already pushing us (her
caregivers - my brother and me) to be ready for her discharge.

We have looked into another long term facility. Mom doesn't want to be in any facility, but she doesn't understand why we don't feel safe with her at home.

Previously, she lived alone in a small apartment while my brother lived in the apartment above her. Almost like living with her, but not quite.

Until a few months ago, she was still pretty independent. But now she has short-term memory loss, a lack of sense of time and place, some hallucinations
and delusions. At least the paranoia seems to have lessened. When we first hospitalized her, she was so anxious and paranoid that she was barricading her
doors, hiding knives in the apartment, and accusing the neighbors of breaking in.

To complicate matters, I live 3000 miles away and I am trying as much as I can to help my brother in her care. He is the on site guy, and I am trying to do
research and financial stuff from afar.

I joked with my brother recently that I have gone through four of the five stages of grief in about a week. Oh, and a lifetime's worth of guilt.

I have learned A LOT and I am grateful for that, but of course I still have questions.

I wonder if we got her medications under control, could she ever have a possibility of living at home again, with help of course? I wonder if not, will
she ever accept living in a memory care facility? I wonder what stage she is in - early, mid, late?

I wonder if anyone out there can give me advice or resources for neurologists, facilities, respite or day care options in the California Bay Area?


Anyway, thank you all for reading.

Melissa

_________________
Melissa, caring long distance for her mom (70) diagnosed with LBD in 2011, symptoms arrived with a bang in 2012, currently living in memory care facility.


Sat Apr 07, 2012 5:52 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Thanks for reading
Hi Melissa,

We've already touched base on the Bay Area resources and support question.

I wanted to encourage you to find Dr. Brad Boeve's 2004 "Continuum" paper on lbda.org. It offers one LBD expert's medication regimen. It can be challenging reading but probably with a couple of passes through it, you'll become an expert too!

Robin


Sat Apr 07, 2012 6:31 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Thanks for reading
Melissa,
Welcome to the LBDA forums. Safety can become such an important issue with people that have LBD and I am thinking if it was a problem before it will be in the future. I do hope you can find the answers for your mom care !

_________________
Irene Selak


Sat Apr 07, 2012 10:13 pm
Profile WWW

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: Thanks for reading
Welcome, Melissa and I'm so sorry for what your family is going through. Reading through this forum may help you get a sense of how others have dealt with situations similar to yours. I'd also recommend a new resource to help families, caregivers, coordinate health care providers and agencies, etc. - www.trustdots.com It is exactly what I could have used when my dad was failing, then had a huge decline and I was 500 mi. away and was the primary CG.
Come back here often. This is a great place for support from people who know just what you are experiencing. 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.


Sun Apr 08, 2012 10:52 am
Profile

Joined: Fri Apr 06, 2012 10:13 pm
Posts: 17
Post Re: Thanks for reading
Hi Everyone,

As I said in my title, thanks for reading. It's so refreshing to hear from people who "understand". I will continue to read the threads and post updates as I can.

Irene, I agree that safety will probably continue to be an issue, which is why my mom is placed now, and will probably (most likely) move to another facility soon. It's just the guilt talking - we promised mom we'd never put her in a home! How many children have said that??? Also, I have to leave the final decision to my brother because I am not there. It might be different if I were, but he has to take primary responsibility and I have to respect his decision.

Lynn and Robin, thank you also for providing me with more resources. I will definitely check them out.

Thanks again,

Melissa

_________________
Melissa, caring long distance for her mom (70) diagnosed with LBD in 2011, symptoms arrived with a bang in 2012, currently living in memory care facility.


Mon Apr 09, 2012 2:35 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: Thanks for reading
The self-guilt-tripping thing can really bring you down, so try to get beyond the guilt. You'll need the energy for more important things! If there's something I'm glad my parents never did, it was say "promise me you'll never put me in an ALF or NH." That does create a tremendous burden for people doing caregiving, whether we are siblings, spouses, parents, children or friends. There is no way of predicting the future.
You do the best you can do, and you need to stay healthy yourself, so sometimes we have to place our LOs no matter how much we don't want to. In the end, it is what makes the most sense given your LOs situation and given your own health, work, family, home and other important life factors.
Hang in there. It's hard, but we are all here for you. It's amazing how many of us there are who are going through or have gone through caring for a LO with neurological disease(s). 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.


Mon Apr 09, 2012 3:50 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Thanks for reading
Melissa,
I didn't have to make decisions for a parent as many others here have and I will leave that to them to help in that area, my LBD days were with my husband. I did want to say I was glad to read that you are agreeing with your brother and that you understand that he is the one there actually "doing" it, so many times I read or speak to someone who is at a distance and wants to be in charge unless you are a person like Lynn here as she did most of the contact having to do with her Dad's care !

Good luck again !

_________________
Irene Selak


Tue Apr 10, 2012 9:43 pm
Profile WWW

Joined: Fri Apr 06, 2012 10:13 pm
Posts: 17
Post Re: Thanks for reading
I am so lucky to be in such good communication with my brother! I am so grateful to him for being the on site person, more than he will ever know (also a bit guilty about that, but I'm working on it). I think we complement each other - he has insights that I don't and vice versa. Also, I am a take charge, list making type and he is more emotional (in a good way - compassionate). I could not imagine doing this alone!

***Another good thing about this forum - a good way for me to stop feeling sorry for myself. I think my mom's too young? So many others have young spouses or parents suffering... I think it's so hard doing this? I read about someone doing it alone... I think my mom's behavior is off the wall? Well, par for the course, I read...

_________________
Melissa, caring long distance for her mom (70) diagnosed with LBD in 2011, symptoms arrived with a bang in 2012, currently living in memory care facility.


Tue Apr 10, 2012 9:55 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: Thanks for reading
How old is your mom, if you don't mind asking? There are some people on here whose LOs are only in their 40s. Very scary and heartbreaking. I have a friend whose dad just died last summer from LBD and he was only in his early 60s but had had to quit his job in his early 50s. He had appeared very healthy physically the whole time until a week or two before he died. Suddenly all his vitals went crazy, the dr. told the family he had maybe a month or two left, he was moved to hospice and died within a couple of days. You never know how this will play out - everyone's story seems so different. Hugs, 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.


Tue Apr 10, 2012 10:31 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 9 posts ] 

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr