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 My first post - Is it time to move Mom to care unit? 
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Joined: Sun Feb 28, 2010 9:48 pm
Posts: 12
Post My first post - Is it time to move Mom to care unit?
My 83 year old mother has LBD, just diagnosed in Nov 09, although I suspected alzheimers for about a year before that. We went to 2 different neurologists, it was the second, Dr Sandy Auerbach from Boston University Medical Center, who immediately came up with LBD, and there's no doubt in my mind he's correct.

She lives with my 83 year old father, and he has been providing all of the care. About 3 weeks ago she fell 4 times in one week, ended up in the hospital for a few days and they determined her blood pressure wasn't regulating correctly when she stood up, causing her to black out and fall. We seem to have that mostly under control now with medidrine, although she did fall in the middle of the night a couple nights ago.

But since that time we've seen a rapid decline. Maybe hitting her head falling has caused that? The confusion is worse, the rigidity is worse, she is incontinent every morning during the act of getting out of bed, but ok the rest of the day. I've been going there every morning to help her dress and launder the wet bedclothes, and have just hired someone to start coming in and doing that every morning starting next week.

My father has been stating he doesn't need anyone to come in, although he accepts my help. But I'm now worried about him. He's strong and healthy for 83, but he can't handle this. He spent an hour and a half the other night trying to get her up after she fell.

We have a new memory care unit opening April 1 near us, run by a senior living group that has an excellent reputation at other assisted living centers. I think she needs to go there, it's killing him to put her there. She still knows us and where she is, so that's what's holding me back a little, she'll know she's not home any more.

Anyone have similar experience they want to share?

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Cindy


Fri Mar 05, 2010 1:49 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Cindy,

Sorry you've had to join us here but welcome.

Orthostatic hypotension (low BP upon standing) is very common in LBD. It occurs in something like 40% of LBDers. Even with midodrine, your mother may have to be closely escorted when she walks to prevent falls.

If you've seen a rapid decline in the confusion, you might look for physical causes such as a UTI.

Rigidity is common in LBD. And having urine drain out upon standing is very common in the elderly. (I don't know if this qualifies as incontinence.)

Definitely ramp up in the in-home care and monitor your father closely. It is exhausting being a 7x24 caregiver for someone. Can he get respite?

You may have to consider placing your mother in a facility for your father's health. (You can read many posts here by others who have had to do the same thing.) Maybe you can place your mother in the new facility for 2 weeks to give your father a respite, and then decide what to do thereafter.

Please request that the MD provide an RX for home health. A PT needs to come to show your father how to get your mother up off the floor in a safe manner (safe for both of them). Or calling 911 is an option.

Robin


Fri Mar 05, 2010 3:41 pm
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Joined: Fri Jun 26, 2009 9:39 pm
Posts: 92
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Hi Cindy,
Sorry you have to go through all this. It's very hard. My husband is on hospice and doesn't get out of bed any more, but he still knows everyone. I'm not sure LBD patients really lose that memory like Alzheimer's patients do. Not much help, I know, but waiting for her to forget people probably won't happen. I wish you God's blessings,
Judy


Fri Mar 05, 2010 3:55 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Does your father drive? Would he be able to visit her every day? When my husband was in a dementia care unit, a female resident's husband stayed at the facility all day every day with her, having all his meals there for a small charge. It worked for both of them.


Fri Mar 05, 2010 4:32 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Cindy,
Welcome, I too am sorry for your need of seeking out the forums, you have some tough decisions coming in the future, I would like to menetion that your Mom go to bed with a pull up to help with the night time accidents, that also should help her moral, I am sure it bothers her too!
Your concerns for your Dad are very real and I think you are dealing with them eventho he says they don't need the help you are seeing that they do and explain to him that you understand how this can wear him down overtime and to take the help. Honestly it is not unheard of caregivers dieing before the person who is ill, There are things you can look into such as day care that would take some of the pressure off him, often churches can offer some light respite for a few hours and if Mom falls and Dad needs help by all means call 911 and have him say non emergency and they will send someone to help and I found with the many falls we dealt with if I let him lie there a few minutes he was able to help more with getting up himself!

Good Luck come back often as things come up and it is always helpful to post in areas that most fit your question, concern or comment!

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Irene Selak


Fri Mar 05, 2010 4:53 pm
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Joined: Sun Feb 28, 2010 9:48 pm
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thank you for the quick responses. My father does drive, and the facility is 10-15 min away for both of us. They even take the dog as a visitor. It sounds like it's going to be very nice. I was thinking the same thing - he could visit all day. And the visiting nurse just told him today to call 911 the next time she falls for assistance lifting her, so that is good advice. As for the pull-ups, we're having trouble getting her to wear them. Does anyone know if one brand is more comfortable or better absorbant than the others? I just bought the store brand, but maybe they are uncomfortable.

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Cindy


Fri Mar 05, 2010 5:20 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
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I find the TENA brand the best for my husband [the men's pull-ups--they make women's, too] but people are all shaped differently. They are more expensive than other brands but are cheapest at Walmart and you can get a free sample from their website. Also you can download coupons.


Fri Mar 05, 2010 5:43 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
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Welcome Cindy - sorry you have to be here. If you read the forum, especially the Intros, you'll see lots of us with very similar situations to you. My dad had a HUGE decline last summer, no infection, nothing anyone was able to attribute to his decline, but then many of the posts you'll read here talk about these huge declines in cognition and/or physical abilities. My dad experienced both. He has absolutely no problem recognizing friends and relatives, yet he can do absolutely nothing for himself - he can't even answer the phone anymore. He was living alone as recently as last June (and driving!).
Your dad does need to take care of himself, because chances are he will wear himself out before something happens to your mom. This seems to happen pretty often, as Irene pointed out.
Good luck. Don't be afraid to ask for help. This is a great place and so is the chat. Lynn


Fri Mar 05, 2010 8:38 pm
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Joined: Thu Jan 28, 2010 4:42 pm
Posts: 59
Location: Florida
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Hi Cindy,

My mom uses Tena & I find it's the most absorbent pull-up. We've used both Depends and Walmart's brand but find Tena to be the best. My mom is 82 and has had LBD for a few years so my heart goes out to you as this is such a strange & progressive disease. This forum is a great place to learn more about this LBD, what kinds of meds others use, & what others are going through. Mom was able to live at home with her husband (my step-father) for a few years but required 'round the clock caregivers as he was too unsteady to help her. (She now lives with me as she requires total help now.) We were just fortunate enough to be able to do that. Her husband would never have been able to care for her and it sounds as if your dad will struggle too much to try it too. So, may God bless you with His wisdom and His strength as you seek to make the best decision for all 3 of you. Remember, safety is an issue for all involved. My mom experience many falls and one occurred while we had no one there but her husband, and he wasn't able to get her up--had to call outside help in.


Mon Mar 08, 2010 4:01 pm
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