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 Mom's recent diagnosis 
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Joined: Sun Feb 06, 2011 10:56 pm
Posts: 6
Post Mom's recent diagnosis
My 78 year old mom was recently diagnosed with Parkinson's and LBD. (However, now after researching the disease, I believe she was exhibiting symptoms for a few years.) She was in a rehab. facility for a few weeks and when she wasn't improving the decision was made to keep her in the NF for now. It breaks my heart to see her there. I visit her Monday through Friday from 10-2 (took leave of absence from work) and my sisters go on the weekends. I want to bring her home but she needs 24/7 care and it's very expensive. I've had her here with me for about 1 month prior to the diagnosis and it was exhausting caring for her. I am torn with what my sisters and I should do. She was also diagnosed with "failure to thrive" while in the hospital for a short stay. I know the disease will worsen over time and it might be impossible for me to take care of her. Any suggestions? Thanks to all who respond. Ellen


Mon Feb 07, 2011 4:08 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Mom's recent diagnosis
Ellen,

Sorry you've had to join us here.

It sounds like your mother is in the right place, and you and your sisters are doing all you can to bring some quality to her life.

As she has "failure to thrive," have you considered getting hospice care for her?

Robin


Mon Feb 07, 2011 4:15 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Mom's recent diagnosis
First of all, Ellen, welcome! You've come to the right place for information and support. I'm only sorry you have to be here. If your mother has been diagnosed with 'failure to thrive', she may be eligible for Hospice. Has her doctor mentioned that possibility? Of course, she would still require an in-home caregiver [or an in-patient Hospice] although she could even be on Hospice in the care facility. It might help with some of her expenses but not the cost of the nursing home rates. I'm sure others will be able to share their similar experiences with you and help you with your really difficult decisions. I'll be praying for you!

_________________
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.


Mon Feb 07, 2011 4:20 pm
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Joined: Sun Feb 06, 2011 10:56 pm
Posts: 6
Post Re: Mom's recent diagnosis
Thank you for your responses. Yes, I did contact hospice and she does meet their criteria so they will be visiting my mom at the NF. Several times a week my mom will speak in garble usually when she wakes up from a nap, when very tired, or anxious. Is this a symptom of the disease or from the meds? There are also many days where she is fairly lucid and others when she's making no sense. She is unable to walk w/o assistance (most of the time she's in a wheel chair) and needs help with most ADL's. What else can we expect? I wish we knew if we were looking at 6 months or 5 years. My heart breaks for everyone going through this but I am so very grateful to have a forum and organization like this to turn to. Thank you.


Mon Feb 07, 2011 4:37 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Mom's recent diagnosis
Ellen,
Welcome to the LBDA forums and I like others is sorry for your need to be here with us, I think you are doing the best that you can for your Mom, this illness just gets more demanding as time goes on and if it was difficult just for a month it will be much harder over a long period of time, its is very hard when you have other demands on you such as a job, family to be able to devote the care because it does become 24/7.

Visit us often and I welcome you to read as much as you can about this illness, it will help you as you advocate for your mom in her care !

Good Luck !

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Irene Selak


Mon Feb 07, 2011 6:43 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's recent diagnosis
Ellen,

Garbled speech can either be due to fatigue, medication, or neurodegenerative decline. The fluctuating cognition is part of LBD, and can be exacerbated by fatigue.

No one can know if your mother has 6 months or 5 years but, as she was eligible for hospice, at least one MD thinks it could be 6 months. Indeed, hospice may be the best judge of "how long?" One key component in survival is the ability to swallow. Once dysphagia kicks in, bad things can start happening (weight loss, pneumonia). If she's already experiencing dysphagia, how long ago did it begin?

Robin


Mon Feb 07, 2011 7:28 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Mom's recent diagnosis
The 'how long' question haunts most of us, I think. If I thought my husband had only six months I wouldn't be going back to work at the end of the month but would be spending most of my time with him at the SNF, as I do now. But I don't know and the only way we can make our resources last more than a year is by my working full time. Such heartbreaking decisions we all have to make with this awful disease!

_________________
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.


Mon Feb 07, 2011 7:59 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Mom's recent diagnosis
That is helpful information, Robin.

Even dysphagia can have ups and downs and isn't always predictive of end stage (though it is apparently a good indicator when taken with other symptoms and behaviors, such as sleeping most of the time.)

Coy was hospitalized with a bleeding ulcer three months after he was diagnosed with LBD. He had swallowing tests in the hosptial and a feeding tube was recommended. He declined. He was discharged with a dysphagsia diet. He followed that for a few months. As he recovered his strength in general, his swallowing also improved. He resumed a regular diet, which he still follows, several years later.

I just want to emphasize that you said "Once dysphagia kicks in, bad things can start happening." They can. But it also possible, in some situations, for the dysphagia to improve.

Are there any absolutes in Lewy Body? :shock:

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Feb 07, 2011 8:47 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Mom's recent diagnosis
Hi Ellen - so sorry for your need to be here. It might be really helpful to you to read through the topics here that are most important to you right now and read others as you get a chance to do so. You can also do a "search" (upper righthand corner of page) with specific words or phrases.
My dad became "failure to thrive" last summer. By then he had already lost over 100 lb., but he finally met hospice criteria at that point. He never did have swallowing problems. He just didn't want to eat, and then almost everything he ate the last 2 months or so tasted horrible to him, even his most favorite foods.
I wish you the best. This is a horrible disease which effects everyone connected to the person who has it. Take care of yourself and come back here often for info. and support. 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 Feb 07, 2011 10:33 pm
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Joined: Sun Feb 06, 2011 10:56 pm
Posts: 6
Post Re: Mom's recent diagnosis
Thank you to everyone who has shared their stories and the information has been very helpful and the support is a blessing. I am so grateful for everyone's sincere heartfelt support as my mom, and my sisters and I face this challenging time.


Tue Feb 08, 2011 9:16 am
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