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Joined: Sat May 05, 2012 1:25 pm
Posts: 14
Post discouraged
hello all,
new to forum

expected to post something less desperate since i joined, but troubles mount.

dad is probably severe on the lbd scale. cannot dress, shave, or answer phone w/o help.

i brought him home to my home in march, neurologist orders, he had forgotten his meds, ended up in hosp. with bad halluciinations, attended to by docs who had no clue about LBD, so was put on anti psychotics which made him SO much worse.

fixed hospital med mistakes by going to his neurologist.

after several months with me, dad now thinks he is FINE and can go back home...

obviously, no way. lbd for more than 4 years.

i have contacted 24/7 nursing, reputable company, recommended by his neurologist.

He must have 24/7 help if he is to go home...but his girlfriend does not get it or is unwilling to accept, so huge amounts of pressure from her, for him to come home w/ her as caregiver. Plus, she is financially dependent on Dad due to his generosity and sympathy.

So, mega problems there.

Plan to call her and explain reality of his situation, but she is fighting it.

but what is most disturbing is that HE thinks he is okay.

He cannot dress on own, take pills on own, attend to hygiene on own,,,and he is encouraged by his gf telling him all will be be well when he "gets home"

she is creating huge amounts of pressure...
asking repeatedly when he is coming home

so am worrying about going back for his doc appts. because of pressure from those who don't get it and want to influence dad to stay near them.

she is elderly and in ill health w/ cancer and can no longer work, yet thinks she can takeover my caretaker role...

I keep flying west cause he keeps going into hosp.

dad not able to make decisions. so subject to her influence and her financial problems, to some extent.

Have POA so can assure Dad safe in assisted living or whatever, but still worried.
anyone have experience in such a situation?

daughter of father with LBD, age 84
present stage described by neurologist as moderately severe
presently receiving several hours of professional care in home

Mon Jun 18, 2012 5:27 am

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: discouraged
As a visiting nurse, I saw a situation very similar to yours. My patient had Alzheimers and her boyfriend, with whom she shared a small home, seemed very confused, as well. They were constantly buying food and hiding it away in odd places. The weekly housekeeper would find spoiled food all over the house.

She didn't take her medications properly, even after I tried an 'alarm' pill box that played a loud tune when it was time to take her medications. Her boyfriend was hopeless as a caregiver, although it was clear he was very fond of her. Though clearly impaired, she was a delightful, upbeat person. I really enjoyed my visits, frustrating though they were.

Their daughter lived in another state and I was in almost daily contact with her. She finally just picked up her mother and her personal effects and placed her in an assisted living facility near her home. She did the only thing that could sensibly be done. It was sad that her mother had to be separated from her boyfriend but there was really no choice.

If you are really certain that your father's girlfriend cannot take care of him, you may have to take similar steps. Ideally, she would be able to visit him.

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 Jun 18, 2012 9:55 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: discouraged
We have seen posts of others here in similar circumstances.

You may have to go to court to apply for guardianship of your father. A POA won't give you the right to tell him what to do and where to live.

I'm sorry but I'm confused as to where people are. Can the neurologist who knows about LBD and got your dad to go home with you be of assistance at this time??

Are there any other family members or friends your dad will trust?

Mon Jun 18, 2012 2:03 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: discouraged
Welcome to the forums, sorry for your need to be here. This is a story that I have heard several times and I certainly don't have the answers but for me the one thing I always follow is my instinct. Legal services are indeed in order here.
Good Luck !

Irene Selak

Tue Jun 19, 2012 1:53 pm
Profile WWW

Joined: Sun May 13, 2012 4:43 pm
Posts: 1
Post Re: discouraged
I know how you feel. I'm in a similar situation, new to this forum, and I guess I should send in an intro too soon. But having spoken to a lawyer, it sounds like a lot depends on the state you live in and the policies/philosophy the individual assisted living/nursing home has. Some states have a third option, sort of a middle ground between POA and guardianship, requiring a doctor's assessment and signature, but doesn't require the ongoing paperwork, etc. of a guardianship. You should start with a brief, relatively inexpensive consultation with a lawyer in your state and then also be very clear about the situation when you go to talk to the assisted living coordinator and see how they react. One nursing home I dealt with really wanted me to get guardianship, "just to be on the safe side." But it's an expensive procedure that requires ongoing paperwork and money. The current nursing home where my dad is living, on the other hand, felt that a POA for health was sufficient to have him admitted, given his level of confusion and the potentially dangerous home situation. Good luck to you!

Wed Jun 20, 2012 3:02 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: discouraged
Hi Jo,
Welcome, I look forward to you intro !

Irene Selak

Thu Jun 21, 2012 5:05 pm
Profile WWW

Joined: Sat May 05, 2012 1:25 pm
Posts: 14
Post Re: discouraged
First, thank you to everyone who has replied to my post. Your words of support and advice mean so much to me.
This forum has made me feel so much better, and much less alone in this journey through LBD.

To Robin, to clarify, I am on the east coast, and my Dad's home is on the West Coast, but he is here on east coast with me now.

The latest is that last week my Dad told me he wanted to talk. So we sat down together on a sunny day in my backyard and he told me that he needed to make plans to go home. I was scared to say anything contrary to his thoughts, but decided to be frank and honest with him. I am glad I did. I told him straight that no, you cannot go home without help. Normally this kind of statement is something I avoid making. It tends to meet with resistance. But this time it didn't. I think he must have been frustrated by needing more help from me lately, which he has, and maybe remembering some of these incidences, and been troubled by them. He has been needing lots of help but I thought he was unaware of it.

At any rate, he replied that he realizes that he needs help. I do not know why, but he was very lucid on this day, and we had a deep and productive conversation. We were taking, something clicked, and it was good. I am thankful. I thought the disease had progressed beyond this kind of conversation. I was amazed that we could converse in this way, after so many times when we could not.

He asked what I thought and I asked him to tell me what he thought. It went back and forth, and I wanted to know what he felt without pressure from me. He insisted that I tell him what I thought, so I told him I have some ideas. We discussed assisted living as a possibility, and I did tell him that I would like him to be close to family on east coast. He said he understood, and agreed that would be allright with him.

So, with his permission, last week we visited one assisted living facility very close to my home, and there is at least one other that has sent us information, and which we plan to visit this week.

I will update soon!

Also, my big concern, was pressure from his friend/friends back home. But despite past pressure from West Coast, the latest is this. Dad has told me that relationships on west coast do not take precedence over family...
and stated that he will abide by what the family wants,.. a happy thing to hear!

It is a funny thing. I am sometimes afraid to have "the conversation" for fear he will not understand.
Life is so unpredictable with LBD.
But this was a good conversation.
I guess the moral of this is keep on trying to talk, and keep hoping for a good day...if disease has not gone too far. Think I got really lucky.

No one knows what future will bring, of course but am very thankful and happy that, at least for now, we are communicating despite this terrible disease.

Again, thank you. I am so glad that I joined this forum...and I will be seeking legal advice tomorrow on this situation. Thank you all,
until next update...
Best to all...

daughter of father with LBD, age 84
present stage described by neurologist as moderately severe
presently receiving several hours of professional care in home

Tue Jun 26, 2012 2:57 am

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 349
Post Re: discouraged
Deborah, welcome. I am so glad you had that conversation with your dad and it went so well.
I hope you will remember it if he backtracks on another day and realize that this good conversation was your dad at his best and cling to what happened in it. I have had to learn with my husband that he can change from time to time in his answers, so I hang on to the answer when he was most lucid and most reasonable and just make my choices based on that.
Glad you are talking to a lawyer to get more understanding of the rules of the road in your state.
Take care,

Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url][/url]

Tue Jun 26, 2012 9:17 am

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: discouraged
Deborah, I think Pat makes a good point. Be prepared to circle back to these topics, and remember the lucid responses. I've had that sort of conversation with my mother many times. Even though she is now very delusional and totally dependent for ADLs, periodically she has more lucid days and still needs to have it explained why she is in the NH, why she cannot live independently, where her money went, how her needs are paid for now, etc. The conversations seem lucid at the time but do not "stick." And in between, she can be quite convinced that she should be able to leave, go back to her home, etc. It takes patience.


Tue Jun 26, 2012 9:28 am

Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: discouraged
I might also suggest that, while your dad has fluctuated back to this lucid state, it would be a good idea and save time, trouble, and money, if you can get him to assign some sort of guardianship to you in a legal document. The elder law atty will help you there. As you can see from numerous posts, caregivers are continually struggling with this issue as the disease progresses.
I'm so sorry you have had to join us on this forum, but I hope you find the comfort I have found, being able to get advice and air frustrations among those who are walking the same path we are.

Thu Jun 28, 2012 11:35 pm
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