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 Depression and Denial? 
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Joined: Wed Jan 08, 2014 11:33 am
Posts: 3
Location: Palm Springs, CA
Post Depression and Denial?
Hi, all. I've posted on here about my mother who has LBD but is high-functioning and keeps wanting to move. It seems that she fixates on a pet issue, such as being in a locked facility and having her freedom reduced (or eliminated, as she thinks) and talks about little else. I'm having a hard time with her accusing me of being wrong to have her in a memory care facility because she is in fact more high functioning than almost all of the others in there. I've discovered that there would be legal issues involved with her moving to a non-locked facility, so as POA, I am not giving consent to that possibility. She is aiming, therefore, to remove my POA status, which I doubt she will be able to do...

What I'm wondering is, is this depression which might benefit from treatment? Do any of you have experience with anti-depressants with your LOs? Or is it just a necessary stage of LBD (including denial, as she is convinced her diagnosis is wrong) and something she just has to get through? Also, how have you dealt with the denial issue with your LO? Thanks! Joel

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46 y.o. son of 81 y.o woman with LBD, diagnosed summer of 2013


Fri Feb 28, 2014 3:23 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 310
Post Re: Depression and Denial?
Hi, I think that's one of the trickiest parts of LBD is the fluctuating ability level. I know at one point my Mom just wanted us to rent her a room somewhere so she could have her own place. And she kept on that for a long time. At one point, when things were too tough to keep her at home even with a nanny, we were looking into moving Mom into a memory care ward. After visiting most every facility I could see that even at this late stage of LBD, my Mom would be much higher functioning than most people in the memory care wards. We had decided though, that we couldn't handle everything at home, so would have to make the move and then supplement with extra care and our visits at the facility. As it turned out, Mom never made it there but that was the plan.

I think fixating on one issue or another is common with LBD. Maybe looking to control something when everything else is out of control? You could definitely talk to the doctor about any meds that might help but as you'll read through out this forum anyone with LBD is especially sensitive to any change in medication and some meds specifically.

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


Mon Mar 03, 2014 4:44 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Depression and Denial?
My dad was on anti-depressants and anti-anxiety meds and it was hard to know if they were helping or not. How much worse (or better) might he have been without them? Hard to know. If you just try to reassure her that you are on her side and working with her drs. to get her the help she needs, hopefully she will calm down and trust that you are doing the right thing. Maybe that will work… If not, anti-anxiety meds may be what she needs, or needs more of. I told my dad over and over when he was angry for being in an ALF or whatever his latest anger issue was, that I was working as hard as I could with his drs. to find something that would help him. It often calmed in him down, but not always. Some days there was just no settling him down and I'd have to remove myself. Good luck, 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.


Thu Mar 20, 2014 4:44 pm
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Joined: Sun Apr 13, 2014 9:32 pm
Posts: 6
Post Re: Depression and Denial?
Hi all,
In my experience denial is a huge issue and a huge problem for me because my husband doesn't think anything is wrong...the falling, the inappropriate remarks (sexual), the fluctuating cognition. The denial is the worst for me because it makes me feel like Henny Penny running around saying the sky is falling--especially when others don't see the worst and think he is "ok" or will get better...
Elizabeth


Tue Apr 22, 2014 7:17 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 310
Post Re: Depression and Denial?
Elizabeth - that is Lewy - you see it but it takes you a while to realize it's there and your LO never sees it and then when you try to explain the symptoms to a doctor or anyone else your LO appears fine and you start to think you're loosing it... But you're not, that's just Lewy. Hang in there!

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


Fri Apr 25, 2014 12:51 am
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Joined: Sun Apr 13, 2014 9:32 pm
Posts: 6
Post Re: Depression and Denial?
I am having a really hard time dealing with my husband's denial...and his clingy behavior...I have a fulltime caregiver hired so that I can have some peace, but even then he denies he has any limitations and is often angry with me for not ''doing enough'' or spending enough time with him...literally driving me crazy at times.


Wed May 14, 2014 8:22 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Depression and Denial?
Elizabeth - it is really hard, I know, but try to remind yourself that this is the disease talking, not your husband. He has no control over thoughts, speech, etc. because his brain has these foreign bodies which are changing everything he does, thinks, says, etc. You cannot reason with people who have dementia because their reality is not the same as our reality. Try to take a deep breath, relax and do what needs to be done as best you can. Arguing with someone who is not in touch with reality is just going to make you both angry and anxious. It isn't easy, and I've never been a spouse CG, which has to be a very difficult place to be. It did take me a while to get accustomed to the role reversal with my dad. I had to become the parent when he was acting childlike or making irrational decisions. That wasn't easy either, but eventually we fell into our new roles and he became totally dependent on me as he was becoming more childlike. Big hug, hang in there, and come back as often as you need for support. 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.


Wed May 14, 2014 8:45 pm
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Joined: Fri Nov 21, 2014 12:46 pm
Posts: 5
Post Re: Depression and Denial?
I'm new to this site, but already it has helped me so much. Denial, depression ... I've known there was progressive dementia for about 12 years now, but it's really burgeoned this year. My husband, 83, can do all the old familiar things like taking care of himself -- and as an artist, he's happy working all day, and his talents has not diminished. But all the rest of a normal life he can no longer cope with -- I have to do more and more. Serious conversation is not really possible. He attributes everything to his hearing loss, which is very real, but certainly not the main problem. All symptoms point to LBD. I'm making small adjustments -- have someone in once a month to clean thoroughly, and am getting more and more ready-made meals at some great take out restaurants in the area. We live in a wonderful condo in the middle of a lovely small town -- so he can still go out on walks, or to the store (often coming home with the wrong item.) I'm worried about the next step -- can't imagine having a caregiver come in, and yet I'm feeling more and more overwhelmed. I will soon insist that he sees a physician, but from what I've read, there's no magic bullet. WHAT HAPPENS NEXT? Being able to vent on this site and read similar stories is a huge relief!


Thu Nov 27, 2014 12:07 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 770
Location: LA
Post Re: Depression and Denial?
Rory, What happens next? Tomorrow happens. It could be a better day, who knows.

My husband and I did get doctors opinions, they decided to treat the symptoms instead of 'an illness'. I think that was about the best we could do at the time. I'll address the hearing loss. You say it is real. I don't doubt that but also added to what ever hearing loss he has there seems to be something else that goes with the hearing of our lewy body loved ones. That is a time lapse between when the spoken word is said and the amount of time required for it to be processed in his brain. See if you think that is happening. It takes patience to speak and then wait for an answer or maybe slowly ask the same question using different words for him to better understand the thought, but it may help ease some of the tension.

Serious conversation? That is what i hear from many of the wives on this forum. I know I missed that more than I would admit but it is real and so hurtful.

It sounds helpful that he is interested in his art and can still function well with that. I would encourage that as long as he can do it.

You speak of getting him to a doctor. Sometime that is extremely difficult but it will happen, even though unplanned, at some time. In the meanwhile I would like to know that you are preparing yourself for the visit as if you knew the time and place. Journal for documentation is job #1. If you have not been to the front pages of this Lewy Body Dementia for browsing, I would suggest you look up the list of helpful medications and what they are for. The first one may not help so maybe with a prescription in hand you could have the pharmacist fill just a ten day supply and there are others which will work if the first choice does not. Start medication one at a time until you see if he tolerates it alright, starting low dose and it can be increased gradually. More standards have been reached than when I first started needing help in the year 2000. You still must do your homework and be ready to help, to be part of the team. You will not be able to leave it entirely up to the doctors. You may be surprised that they will be thankful for your assistance.

In case of an unexpected visit for him to see the doctor, everyone is anxious to help and usually the first doctor may think the best way is with Haldol. It is used on others with success. Not so if this is Lewy Body. It could do great harm . Don't let them take a chance! NO HALDOL. I, and many other have learned the hard way.

That's enough for me to start you with. Others are standing by to assist as you get further into this. Try not to be frightened. Take it one day at a time. Ask specific questions or tell about your good days or days that you feel at your wit's end. The people on this forum are the best. They will walk with you and understand.

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"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Sat Nov 29, 2014 12:10 am
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Joined: Fri Nov 21, 2014 12:46 pm
Posts: 5
Post Re: Depression and Denial?
Thanks, Dorthea, all very helpful. I have, indeed, kept a journal since I first suspected symptoms in 2002 (when my husband did not recognize that the green arrow traffic signal meant turn left now!) And I have a list of symptoms and info for the doctor when/if I can get him there. I've spoken with his internist who is also a friend and neighbor, and told him I'd e-mail my concerns to him before the next visit, and he is fine with that.

However, one friend whose husband has dementia, found that his doctor would not discuss her husband's illness with her because of patient confidentiality! And, of course, the husband couldn't remember what the doctor had told him. I wonder if this is common -- will my husband have to sign a release? I feel it's somewhat intrusive to go with him into the examining room.


Tue Dec 02, 2014 11:28 am
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Joined: Fri Nov 21, 2014 12:46 pm
Posts: 5
Post Re: Depression and Denial?
Thanks, Dorthea ... all very helpful (Sorry if this is a duplication of my previous reply which seems to have disappeared before I submitted it.)
I have been keeping a journal since 2002 when I first noted symptoms, and have a memo of my concerns waiting to send to the doctor when (if) my husband ever goes for a physical or a complaint. I've alerted his internist who is also a friend, and he is okay with this.
I'm concerned, however, about the possibility that -- as happened with a friend of mine -- a specialist will not discuss my husband's illness with me on grounds of "patient confidentiality" Is it normal for a patient to sign a release? Is it acceptable for me to sit in on the examination/consultation? Obviously, the patient is not going to understand or remember enough to share with his wife!


Tue Dec 02, 2014 11:45 am
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Joined: Wed Oct 01, 2014 1:49 pm
Posts: 57
Post Re: Depression and Denial?
Rory181,welcome, You may have to be his power of attorney to talk with his doctors,but you are his wife and you take care of him so I would try that before or ask his drs.about it.Or call his doctors nurse and ask.LOOK on the forum board there is a forum on legal matters. THis can be a sensitive subject for the pts.You will need to do this in the long run. goodluck,PaulaL


Tue Dec 02, 2014 2:04 pm
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Joined: Fri Nov 21, 2014 12:46 pm
Posts: 5
Post Re: Depression and Denial?
Thanks, Paula. I do have POA, so that's a start ...


Tue Dec 02, 2014 2:13 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 770
Location: LA
Post Re: Depression and Denial?
My husband, Mr B., and I always had the same "family doctor" so there was never a problem with me being there. Later with the specialists, they were more than glad to have me there, just as when I went to the doctors with my children, it was expected of me. I would offer to leave the room and my doctor would say I did not need to go. Mr B wanted me there. Yes, I can remember a few times when I did leave but it was on a "case by case" basis. The doctors wanted to help him and they knew it had to be through his caregiver.

Having said that,POA is also important. You will need it.

_________________
"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Tue Dec 02, 2014 3:15 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 770
Location: LA
Post Re: Depression and Denial?
Quote:
"I feel it's somewhat intrusive to go with him into the examining room."


You sound just like me [at the beginning] Smile. Try to relax and know that this is a new beginning to a different phase in life. You will need to learn a different set of behavior patterns in your marriage relation. When the time comes for you to be with him where you have always considered his personal privacy, if he needs you, you can do it.

_________________
"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Tue Dec 02, 2014 4:15 pm
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