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 New to Lewy body 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: New to Lewy body
It IS hard on everyone, for each of us in our own way. I tried to be cheerful, upbeat, helpful, positive, etc. in front of my dad, especially after he was in the hospital, rehab and then the ALF. It must be really terrible for our LOs who are suffering with this awful disease, and it is really hard on friends, family, CGs, etc. to see our LO becoming more and more debilitated and not being able to do much of anything that will help. So, focusing on the little things you can do in a hour, in a day to help our LO is about as good as it gets. Being there as much as we can for them, being an advocate with their CGs, medical people, etc. at least makes us feel like we are helping, and that is important. And, as others have said, taking care of our own selves is crucial. It doesn't do anyone any good if we get sick or debilitated. Have a good night all, Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Mar 25, 2013 7:13 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: New to Lewy body
Welcome, Ray.

Everyone has given you such sound advice.

Please do not worry about being maudlin with this group. We all get it. And we are here for the purpose of supporting each other in our journey through LBD caregiving.

Do not hesitate to ask about what abbreviations mean---that used to drive me crazy, too!

You are wise to focus on the positives wherever you can. That attitude will help you in caregiving. And planning ahead will also yield benefits for both of you.

You may want to also join the forum for LBD_caringspouses. It is a yahoo group and keys in on the spousal caregiving issues in a gentle and helpful way. I go to that forum every day for support.

Take care,
Pat Snyder

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Tue May 14, 2013 9:16 pm
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Joined: Sat Jun 15, 2013 1:26 pm
Posts: 6
Post Re: New to Lewy body
I am in a unique situation... and hope that maybe there are others in a similar situation.

My ex-husband has been diagnosed with LBD. We have 3 children, 1 of whom lives at home with me. While we are divorced, we have always remained on good terms and so it was me who intervened and got him to the Doctor when his behaviour and cognitive issues became pronounced enough that we could no longer dismiss them as "John being eccentric". He is 61 and has clearly had this for 2 years, although I suspect it began before that and he hid it.

Although he has 2 sisters, they live out of town a bit, and he resists their being involved in "his business" - He doesn't completely trust them, which is a bit of the paranoia evident. It has fallen to me (and one of our 22 year old sons) to assist him. He is living alone in an apartment although we are not sure how long this can continue. He has some good days - even a good 2 week period recently... but then he deteriorates again. He does not have friends, and I am the only one (besides the Doc) who he talks honestly to. I take care of his banking and the chores around his place are shared between my son and I. But we also have to be careful not to do too much all at once because John gets overwhelmed.

We will hear the results of the neuro-psychological testing this week. I know it won't be good and am very anxious about how John will react. I would be interested in knowing how much "truth" others conveyed to their loved one about their disease. Any tips on how to get them to agree to be in a care facility? What do you say when they ask you point blank "what's my prognosis"?

Ruth


Mon Jun 17, 2013 12:56 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: New to Lewy body
Hi Ruth, welcome to the forum. Your ex-husband is fortunate to be on good terms with you so that he has someone to help him.

You mentioned taking care of his banking business, but do you have financial and health care powers of attorney from him? If not, getting him to go to an attorney and have them done could help you significantly. Sooner rather than later is important, as past a certain point he will not be competent to sign them. Also, the health care power of attorney can convey to his agent the authority to admit him to a nursing home or other long term care facility, if he is willing to grant that power. And even if you have signatory authority on his checking account, other things could come up later that you might not be able to handle for him without a financial power of attorney, so that is an important tool.

As far as what to say about the diagnosis, of course everyone is different, but I think it is important not to overwhelm a LO. With my mother, I gave her a very basic idea that she had a neurological condition that was progressive. She asked if it would get worse and I said yes. She asked if she would know it and I said no. That's all she asked and we never discussed it again. I think it's important not to bombard a LO will lots of information and details about the progression of the illness as it is easy to overwhelm the LO.

Best of luck,

Julianne


Mon Jun 17, 2013 3:07 pm
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Joined: Sat Jun 15, 2013 1:26 pm
Posts: 6
Post Re: New to Lewy body
Thanks Julianne!

I have PoA - he never changed it when we divorced. But we are going to update all his papers at the beginning of July. He still wants me with the Power of Attorney and is discussing with his kids about the Health Power of Decision... the kids all want it to be me... I'm the only one he seems to completely trust (which is a blessing and a curse :) )

There are so many little things to take care of right now while he is still able to participate in the decision-making. It can feel overwhelming to me, so I imagine it is a lot for him!


Mon Jun 17, 2013 3:58 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New to Lewy body
Dear Ruth,
As mentioned before, your husband is very lucky to have someone like you to oversee many things for him, as to telling him about his illness, just see how it goes when you both get the results of the testing and that should indicate to you how he will handle it and another go thing to have is an e-mail contact for his doctor so you can discuss things with the doctor prior to appointments such as will he advise when it is time for a place for him to live in a facility because that could turn ugly for both of you since you are not a couple anymore. You must be a really good person to do what you are doing for him !

Also I want to welcome you to the LBDA forums, I hope it becomes a place of comfort for you and I know it is packed with great information that will be so helpful along the Lewy journey!

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Irene Selak


Mon Jun 17, 2013 8:05 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 230
Post Re: New to Lewy body
Hi Ruth,
I would definitely get all the paper work sorted out while you can. It makes things much easier later. For my mother, we told her what the diagnosis was - she came to all the doctor appointments with us - and she would listen, but I don't think she ever believed that any of the doctors knew what they were talking about. She did talk the meds (most of the time) but telling her didn't really seem to phase her one way or the other. It may be because she wasn't diagnosed until later on in the progression of the disease.
Welcome to the forum!

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Tue Jun 18, 2013 12:06 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: New to Lewy body
Ruth, wow, I am humbled by your devotion to your ex-husband. What unconditional love you have to make this commitment to help and care for him at such a time as this. Your children are very blessed to have a mother who is leaving such a legacy for them!

Have you considered having one of the children included as an alternate agent on his POA in case you run into some problems in the future? You could be listed as the primary agent and one of them could be listed to serve as agent if for any reason you could not serve. Just a thought. (I was a paralegal in my pre-caregiver life and we had these issues in our office all the time to help families sort through. It is often very difficult to predict how things might change in such a situation, so we found it best to cover as many potential bases as possible in one inexpensive document.)

Hats off to you!
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Tue Jun 18, 2013 2:03 pm
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Joined: Sat Jun 15, 2013 1:26 pm
Posts: 6
Post Re: New to Lewy body
Pat... what a great suggestion! We will definitely ask the lawyer about having an alternate designated (not sure if the Canadian laws allow it). I do worry about what might happen if he suddenly stops trusting me.

Tomorrow is the feedback with the neuro-psychologist. I am dreading it. Although perhaps it will help him accept his situation. I'm using humour with him to not stress him out. I've said it feels like a "parent-teacher interview" to discuss test results... and made him laugh when I said I might have to take away his tv privileges for a week.

Right now he is resisting getting once a week health care visit to help with a few things, but i've planted a few seeds for him to think about, primarily to think about why his family thinks this is a good thing, and what it might do to relieve them of worry etc. For some reason, this approach works for him. (it was what got him to stop driving and give up his car - worrying not about his driving, but that he might be putting others in danger).

The neuro-psychologist has already warned me that she thinks he needs to be in a residence, and that she will raise that issue with him. Perhaps that's why i'm all anxious today... When we first met with her, I was worried that he would be on his best behaviour and she wouldn't see his issues. She reassured me that it was very apparent. I was worried because sometimes he does have those "show times" and I start to think people will think I'm crazy, that he's fine. But they don't see him stand 3 feet from the concession stand at the theatre and mumble his order... or call me at 630 in the morning all anxious because he thinks he's missed his doctor's appointment.

It does help to read the Forum posts... to see that you are not imagining stuff and that others are going through similar things.


Tue Jun 18, 2013 4:55 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: New to Lewy body
I'll chime in too, and say it's best not to overwhelm the person with too much detail. It is too depressing for them, and also too much detail seems to overtax people's brains when they are dealing with this disease. The first dr. appt. I took my dad to, where his PC physician told me he thought my dad had Parkinson's, I noticed my dad just tuned him out and acted like he couldn't hear. Subsequent appts. with a psychiatrist he did the same thing and then put on a grand "show time". When he'd ask me, after we left the dr., "what is wrong with me?" I'd just say "there's something going on in your brain that's not right and I am working very hard with all of your drs. to help you." That seemed to satisfy him. I think he was in denial, but it did seem to calm him down and that was what was important. If I'd told him the details of what was going to happen I don't know how he would have dealt with it since he was already pretty depressed and anxious.

As several have already said, your ex is lucky that you are willing to do what you are doing for him. I am wondering why, exactly, his dr. thinks he needs to be in a care facility now. Do you think he or others are in an unsafe situation if he remains at his house for a while longer? I'd probably want to encourage him to stay there as long as is practical for all concerned. If he wanders out into the street, into other people's houses, is at risk for setting things on fire in the kitchen, etc. then it probably is time to move him. Does he have incontinence and the inability to clean himself? That would be an other reason to move him to a facility. But, if he's pretty safe and hygiene isn't an issue where he is, why move him now?

Good luck to you, and I hope you are doing things to take good care of yourself. Also, getting more help from the kids will be important to you and your ex as his abilities decline. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Jun 18, 2013 9:24 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 230
Post Re: New to Lewy body
Hi Ruth,
I was just reading another posting and found this link that Irene had posted for another member. It's a summary of LBD. She gave it to her husband so he could read about the diagnosis...

http://www.lbda.org/sites/default/files ... eet-ec.pdf

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Thu Jun 20, 2013 12:13 am
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Joined: Sun Jun 02, 2013 5:24 pm
Posts: 3
Post Re: New to Lewy body
I have been trying to answer my husband's questions as he asks me because I have found that he doesn't seem to want a great deal of info. One thing that I didn't realize was that after our neurologist told us that it was important that we take care of various legal matters like POA, etc., as soon as possible, my husband thought that he was going to die soon. He didn't say anything to me until several days later, and I felt so bad he went through those days believing that he might die at any time.

Susie


Sun Jul 07, 2013 12:23 am
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Joined: Sat May 25, 2013 3:53 pm
Posts: 230
Post Re: New to Lewy body
Hi Susie, Answering questions can be so difficult! I always found that there were times when Mom was right there and she would ask something and I would answer her honestly. Other times I'd go back to the distraction technique when I knew she wasn't really in comprehension mode! One miscommunication we had was when we looked at a long term care facility (which she never did move into). We went on a tour and they showed the laundry facilities and the mounds of laundry that had to be done. I found out later why she didn't like the place - she didn't want to have to do all that laundry! :)

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Sun Jul 07, 2013 1:30 am
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