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Joined: Tue Sep 26, 2006 5:13 pm
Posts: 18
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I stayed away a while this seemed to be a painful sight for me. I still am not sure I am ready to believe (nor is my mother apparently) that she has something as horrible as LBD seems to be. I am also finding myself a bit fried and at times overwhelmed with the responsibility of taking care of her and working more than 50-60 hours a week.
My mom did have a pet scan done and medicare and her AARP policies have paid it in full!! She will go to boston next week on the 17th.
I have given up on the scooter idea, she can't even navigate corners on her walker with any consistancy.
Anybody have any good experience with figuring out a way to get medicare to help with inhome care? My mom doesn't have a "skilled nursing need" so she really doesn't have the need for Home Health services. She did go to a day program once and unfortunately it isn't going to work for a couple of reason, first they require me to bring her and pick her up.....problem because I work. second, there are half a dozen "clients" of whom most sit in wheel chairs and look out the window drooling.
I feel like the community really needs a program for LBD and other adults with dementia to stimulate them, not simply a baby sitting service! These guys need to keep moving and enjoy the life they have not sit on a couch and stare at a puzzle. :(
Anyway, I have read over some of the postings and note the one family who had good results with a scooter and all I can say at this point is life is short do whatever makes you happy and keeps you safe!
Maureen


Mon Jan 08, 2007 1:37 pm
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Joined: Fri Jul 21, 2006 1:05 pm
Posts: 51
Location: Houston, TX
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Maureen,
My mother's primary care physician ordered a Home health nurse and occupational / speech therapist to visit her regularly. She does not need any help with Daily Living Activities either. Medicare and her AARP policy picks up the entire cost. Maybe you could ask her primary Dr. to order her an evaluation through a local home health care facility. That would be a place to start seeing what Medicare will or will not pay for.
Good Luck,
Jennifer


Tue Jan 09, 2007 1:43 pm
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Joined: Fri Oct 27, 2006 8:07 pm
Posts: 54
Location: New Hampshire
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Hi Maureen - I know how you feel about the site bringing pain, it is very hard to read what people are going through and what you may too. Remember though every LBD patient is different and your Mom would not necessarily have the same symptoms as my Mom.

Speak with her primary care dr. I know this sounds painful but because LBD is a progressive terminal illness your Mom may qualify for Hospice services. In Mass/NH, they are under the understanding that it would be difficult to say 6 months is all you have with LBD, sometimes its shorter and sometimes much longer. My Mom's wishes quite a few years ago was that she would not want to be kept alive with machines, feeding tubes etc., if her brain was not functioning, and she was just sitting around like the people you see in the daycare. She has been on Hospice services since June. They are a wonderful organization, and give quite a bit of support. I have a nurse that will come 2x's a week, more if needed, I can call them 24 hrs a day with questions or concerns, I have received equipment, medications and a home health aide to shower Mom 5 days a week. They also have a wonderful volunteer program. It may only be a couple of hours a week, but any break is wonderful.

I hear what you say regarding Medicare, they pay for crap. It stinks that more services are not available to the elderly, what they have paid into medicare while they worked, and the high cost of their insurance premiums, they should have round the clock care available. We are slowly going through my Mom's savings, because we had to hire a shift in the morning 8-11, and 7pm to 7am, so I can run errands, groceries, etc, and so I can sleep. I take care of mom the rest of the time (had to quit my job), most people can't afford to do that. I know how tired I am by 7pm so I can only guess how tired you are working full-time and coming home to your Mom with LBD.

If you know your mothers wishes consider what I have said regarding hospice its not for everyone but it may be something to think about.
Good luck and let us know how you are doing.
Shelley


Tue Jan 09, 2007 6:38 pm
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Hi Ladies,
I second the idea of Hospice, they are wonderful and there is no such thing as 6 months, they just come in and recertify every 6 months, as you have said they can not deterimine how long a person will live.
I used Hospice and they were great I had an aide 5 days a week and the nurse came 2 x's a week and just knowing you have someone to call in the event you need to is wonderful.They pay for many things that are needed ie: Hospital bed, most handicap items that might help and some meds, you have nothing to lose in just trying and if the person is denied you can try again down the road.


Tue Jan 09, 2007 9:23 pm

Joined: Tue Sep 26, 2006 5:13 pm
Posts: 18
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:D thank you so much for your responses. As luck would have it (and my frustrated calls to her doctor) the very nice folks at Androscoggin Home Health and Hospice have sent a social worker out to my house. She went when I was working but next week she will come when I am there. I found her to be very nice on the phone.
She seem to understand my worries and connects quite well to my mom. I am very hopeful she may be able to hook my mom up with services that are appropriate for her level.
The problem with this blasted disease it that one day she is totally fine and the next ......
I have got her the walker with the seat so she can sit frequently but notice when she uses it she is bent at the waist with arms stretched out wide in front of her. Do you guys see that too? She complains her arms hurt (after 15-20 minutes) but other than duck taping her closer to the walker, I am at a loss as to how she can keep the walker closer to her. I keep reminding her to hold it closer and less than 30 seconds later out the arms go!
She is now off her medication (cinemet) so the folks in boston can see her in full form. Of course she fell flat on her face today trying to get out of a chair! I am thankful her bones are strong. :!:


Fri Jan 12, 2007 9:02 pm
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Hi Maureen,
I am glad you contacted Hospice, I hope they can offer help. I know what you mean one day Mom is great and the nest no so great I hope you can exlain that the disease fluctuates agreat deal. Onthe subject with the walker it might be sghe can't use walker with wheels, we had this problem too and we switched to the one you have to slightly life to move forward, I hope this helps also might want to think about a Physical therapist helping with the one she has but to be honest with you your Mom will not remember much of what they show them! :?


Sat Jan 13, 2007 12:03 am
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