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 Helo I am new! 
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Joined: Thu Oct 23, 2008 4:25 pm
Posts: 2
Post Helo I am new!
My mom was diagnosed with Lewy Body Disease approximately 2 1/2 years ago, after she had fallen and broke her arm.

She fell less than two weeks ago and fractured her hip, had surgery and stayed in the hospital for 8 days. During her hospital stay she was hallucinating, had 2 blood transfusions due to low hemoglobin, and her white cell count went way down along with her neutrophils. She developed pnemonia. The hospital staff never heard of Lewy body Dementia or Disease. She was given demerol for her pain. And finally I spoke to the Doc and requested they get her off the stuff, as it was adding more to her confusion, and hallucinations.

She was transferred to a skilled nursing facility, and it really leaves a lot to be desired. Now, she has possible rib fractures, due to them transferring her with a gait belt. She had x-rays today.

I am at my wit's end, my father is 82 years old, and he is thinking of taking her out, and bringing her home, and he will take care of her.

I go everyday for about 6 hours, and encourage her to eat, and drink fluids. I even have to instruct the staff on how to transfer her. It is really quite pathetic! Today her call light was on for 20 minutes before anyone came into her room! I am beyond frustration. My siblings live too far away to be of any support or help!

So, Hi to everybody.....My mom was my best friend in the whole world, and I am so sad, depressed to see her like this! At this point I do not know what to do!


Thu Oct 23, 2008 5:17 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Katrina,

Sorry to hear about your mother's situation. I've never heard of gait-belt transfers causing rib fractures but I suppose if your mother's bones are brittle that this is a problem. I'm not sure that you can blame the SNF for your mother's rib fractures. I would immediately get with the patient care coordinator to understand how they can transfer your mother going forward. Even a Hoyer lift can cause a bone fracture in an elderly person with brittle bones.

I think someone needs to assume responsibility for managing the facility -- whether it be your father or you. If it's you, perhaps your father needs to sign a statement saying that you are acting on his behalf.

You've got to have regular meetings with the patient care coordinator (this is usually an RN at a SNF), you need to make a list of all the RNs and CNAs, you need to have a checklist of topics to address and mark off the names as you've discussed the topics with them, you need to post signs around as to instructions, etc. (You need to meet the people on every shift.) You need to document poor performance on their part, and email/fax them with what you've observed and your concerns. In my opinion, this is the only way to ensure that the SNF performs to your standards.

Robin


Thu Oct 23, 2008 7:08 pm
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Katrina,
Welcome to the LBDA forums, sorry for the reason for you to be here. Sadly what you have stated is more common that you think and the first plan of action is providing the SNF information of LBD and seeing that is followed. Work with them as best as you can. Fractures are common to many LBD'ers, mostly due to balance issues and that is a problem just getting them in a wheelchair for transfers, many also just get suddenly weak and just drop. I hope you can get her to the point of taking her home if possible but is your 82 yr old Father going to be able to care for her with her many needs? Please visit the LBDA for articles to print and provide the facility,the link is below my name!
Good Luck!


Fri Oct 24, 2008 10:38 am

Joined: Sat Nov 01, 2008 8:22 am
Posts: 3
Location: North Carolina
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Dear Katrina:
I was so sorry to read your post. I have four siblings; all of them live in different states all over the country and I, too, am the only one who lives in the same city as my parents. Sometimes the stress is overwhelming ... as is the constant need for my intervention and assisting at doctors' appointments, etc.
As for the current facility your mother is in ... do you have time to look for other places? They are certainly not all alike. Would you have enough extra $$ to hire a caregiver/ home helper to either come into your father's home and assist him in helping your mom ... or for the caregiver to spend time at the facility helping to look after your mom while she's there?
It's sad to say, but it has been my limited experience that even at very nice places, you still need to keep following up on every little aspect of care. You need to be the advocate all the time. I know this can be exhausting. It does help to make a list of concerns and to meet with the wellness coordinator (if there is one), and the director.
I hope the situation improves.
Kind regards,
nean


Sat Nov 01, 2008 11:15 am
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