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Joined: Sun Mar 21, 2010 7:01 pm
Posts: 5
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Hi there - I'm so glad to find the LBDA forum - I've used the Alzheimers forum before but my dad was finally diagnosed with LBDA and I found this site. The hardest part for me is keeping up with the groups and people and staying online. Life gets busy. I am 35 years old, newly married (3 weeks!) with a almost 4 year old son. I am the primary caregiver for my 67 year old father with LBD. He has had this going on 6 years now and is in the advanced stages. I have been doing this for over 3 years now, I live with Dad, and am about out of my mind. I just can't do this anymore, honestly. We almost lost him in Dec., he couldn't swallow and stopped eating and drinking - when we stopped his meds he slowly got better. We suspect that maybe the Zyprexa was the problem as it stated it could cause swallowing problems. Dad also has post-polio syndrome, which doesn't help. He had a trach as a child. He is currently on Seroquel and Trazedone and the Exelon patch (just started). Occasionally we have to give him Ativan. The meds just really aren't helping at this point.

The biggest thing going on right now is that the second he opens his eyes in the morning he starts asking "is anyone coming?" "what am i supposed to be doing?" and this goes on ALL DAY LONG. It's tiring. We used to have someone who came every night for 12 hours a night but we can't afford it anymore - now my brother and sister help out a bit. You can't even leave him for one second - literally. If you go to the bathroom he will start screaming "hello, hello, hello!". He wants someone to hold his hand all day long and it's just not possible. I can't do it. I have a husband, a child, 3 jobs, a house to keep up - I think by having the hired help he got so accustomed to someone being right next to him. Even they can't leave for one second anymore. Last night (we have someone 3 days a week for 6 hours at night) she was trying to do dishes and he was just freaking out.

His ability to speak has deteriorated - its mumbo jumbo most of the time and it aggravates him because he can't say what he wants. He hallucinates most of the day "can these people come out of here?" and he is pointing to a wood beam - he is restless and anxious - freaks out in the car, tries to wander off all the time and lately has - he was never a wanderer before. Last week he was in the middle of the street - on a blind curve windy road, in the middle of the street. Scared me to death!

He falls without notice, he can't do anything by himself, restroom or otherwise - he doesn't know where he is half the time - I could go on and on.

I feel horrible that I don't want to do this anymore. I can't do this anymore. The sound of his voice drives me insane ... I feel like a bad person.

My sister is looking in to maybe placing him - I never wanted to do that but my criteria was always, if he doesn't know who we are or where he is then ...

For those of you that have LBD loved ones placed, does it help? They have people around them like them? Some sort of routines and activities?

I just don't know what to do anymore - he is so much work.

Looking forward to connecting with people here and your responses.

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DawnnaT - caretaker/daughter of 67 yr. old LBD patient - late stage.


Sun Mar 28, 2010 2:45 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3378
Location: Vermont
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Hi Dawnna - so sorry for what you are going through. When caretaking gets to the point that it is having such a negative impact on your own life, it's probably a good time to start looking for a place for your dad. You can't get so overstressed and overtired that your own health is compromised - you have a child and husband to think about too, as well as yourself. If taking care of your own self and your family means your dad has to go to a facility, that's ok, not easy, but it's ok. Don't guilt trip yourself. If he has no money Medicare or Medicaid should cover his care. He has to have less than $2,000 "in the bank". A primary residence doesn't count towards the $2,000.
My dad is in the final stages too. It's very upsetting to see him in the state he's in, but he gets great care in the ALF where he is. He is not happy, but he's not going to be happy anywhere. He could not stay in his own home - he can't afford 24/7 care, and now that he cannot move at all on his own, he wouldn't be able to get to the bathroom for showers and toilet because the wheelchair won't fit.
If he were still mobile, he might wander, and the wandering is something you have to be careful of now. At a facility that is good, they will be able to take care of his current needs and anticipate what's going to happen when things get worse, like when he loses his mobility, which is probably the next thing that is likely to happen.
You've found a great forum for support, so I hope you will keep posting here and also consider getting on the chat. They have both been a great help to me - I've met several wonderful people whom I consider friends now. There's nothing like being able to vent or ask questions of people who know what you are going through. Catch you later. Lynn


Sun Mar 28, 2010 3:48 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Welcome to the forum. We're all in this nightmare together and you will find much support and information here. Your father sounds a lot like where my husband is right now and I am his caregiver. I cannot imagine also taking care of a child at the same time! I understand your reluctance to place him but he probably doesn't know where he is, anyway [my husband doesn't]. If he lacks the funds to pay for a SNF, he can get Medicaid assistance. Don't wait! Things are not going to get any better, only worse. God bless you for being such a wonderful daughter! --Pat


Sun Mar 28, 2010 3:50 pm
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Joined: Sun Mar 21, 2010 7:01 pm
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Thank you mockturtle - we are in the unfortunate situation that my dad is Canadian and does not have citizenship (my mom never took care of it) and therefore everything we pay for is out of pocket.

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DawnnaT - caretaker/daughter of 67 yr. old LBD patient - late stage.


Sun Mar 28, 2010 4:23 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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I don't think you need to be a citizen to get Medicaid [not Medicare]. As an RN, I've certainly had plenty of Medicaid patients who were not. If he is a legal resident he would probably qualify.


Sun Mar 28, 2010 4:28 pm
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Joined: Sun Mar 21, 2010 7:01 pm
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Not a legal resident either ...

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DawnnaT - caretaker/daughter of 67 yr. old LBD patient - late stage.


Sun Mar 28, 2010 4:35 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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DawnnaT,

Sorry to hear about your father.

Absolutely place your father for the sake of your health and your family's wellbeing.

In the meantime, there are some non-profit hospice organizations that would likely take on your father though he isn't a legal resident. This would give you and your family a few more eyes and hands on the case. You might be able to have the hospice organization pay for placing your father in a care facility so you can get a week or two of respite.

If the meds aren't helping, why give them to him?

Can you address the wandering problem with alarms or locks?

Robin


Sun Mar 28, 2010 5:20 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Contact a social service agency of some kind, e.g., state, county, Catholic Community Services. There should be some way for you obtain care for your father.


Sun Mar 28, 2010 6:16 pm
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Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
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Dear Dawnna ~ I just want to say that my heart goes out to you and your family. Like you, I am not up to the Lewy Body challenge although you are doing it! My husband is still able to shower and feed himself among a few other things, and so far I do not notice any delusions/halluciations. However, I already feel buried alive by this disease and we have not even begun to scratch the surface...yet. I have written before that it is crushing, profoundly frustrating, beyond frightening, crazy-making and ultimately heart-breaking for all involved... I cannot think of a greater challenge for any of us. Your dad didn't ask for this disease but neither did you... It is not fair for anyone to have to deal with it, especially one so young as you... Please try not to beat yourself up and feel free to email me directly.
With Hugs & Blessings,
Roxanne [63] wife of Jack [68 dx'd in 2006]


Tue Mar 30, 2010 1:28 pm
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