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 What to say? 
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Joined: Sun Aug 29, 2010 5:46 pm
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Post What to say?
Yesterday, I took my mother to the dentist for a repair involving her lower partial plate. She knew why she was going and that the dentist would need to have the partial on hand. I took her in and then told the receptionist I was going to run some errands and come back. When I returned, my mother was already back in the waiting room and the receptionist looked perplexed, so I went over and spoke to her. They were unable to do anything because my mother had forgotten her partial. So I rescheduled and we left.

As soon as we got in the car, my mother said, "My mind must really be gone," and started weeping. Then she told me she had absolutely no memory of where her partial was, when she had last worn it or what she had done with it. She was extremely distraught. She said she didn't understand how she could have no memory. It was as if for a few moments she could think clearly enough to realize how badly off she is.

The only thing I knew to do was to reassure her that it was her disease that caused her memory not to work, and it wasn't her fault. She also seemed to be quite concerned about losing face--doing things that made it obvious to others that she was making mistakes, forgetting and being confused. I told her everyone understood and she should not be embarrassed.

Honestly, it was really draining. I don't feel as if I am qualified to deal with a meltdown like that, and I wonder if I said and did the right things. I know that probably she will have forgotten all about it by today (the flip side of forgetfulness is that sort of blessing) but in the moment it was overwhelming. Is there anything better I could have said or done?

(In fact, when I got her back to her room, I suggested she look in her denture container, and there was her partial. She gave a little cackle of satisfaction, and all of her earlier concerns seemed to evaporate. And the nursed said she told them that the partial was already at the dentist's being repaired. Rest assured I will look in her mouth before taking her back to the dentist!)

Julianne


Wed Feb 02, 2011 10:19 am
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Location: Minnesota
Post Re: What to say?
Oh Julianne, this is indeed a very painful part of the disease! Of course you are not qualified to deal with meltdowns -- few of us had training or role models for that job! This is strictly ojt, and you are doing just fine.

In the beginning Coy showed much more advanced symptoms than he does now. He was "out of it" much of the time. But he kept having short periods of perfect clarity, when he perceived exactly what was happening to him. That was heart-wrenching. It did give him an opportunity to participate in decisions about his care. For example, he spent a lot of that clear time telling me about his wishes for end-of-life care. So it had its uses, but it was very hard on both of us.

I did then (and still do, now that he is with it most of the time) what you did: offer reassurance that these impairments are not the real Coy. ("You have a great brain and a wonderful memory. But the disease you have just won't let them work all the time now.") And I also assured him that he was safe and that people who love him will take over for the things the disease won't let him do for himself anymore.

It is very draining, isn't it? Hang in there! It sounds like you are dealing successfully with these sudden challenges.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Feb 02, 2011 10:47 am
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Post Re: What to say?
Thanks for the encouragement, Jeanne. OJT is right. In my mother's case, the blessing is that she forgets most things so quickly, and even traumatic moments are forgotten or blunted. But I still feel overwhelmed by her emotions from time to time. It must be very frightening to realize that one's mind is failing so dramatically.

Julianne


Wed Feb 02, 2011 11:22 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Post Re: What to say?
Julianne - I went through this with my dad for 1 1/2 years. I think you did everything you could possibly do right. I know how heart-wrenching and draining it is. After 6 months of terrible physical and mental decline my dad had gotten to the "la la land" state where he really didn't know how bad off he was. Then, without our knowledge, his psychiatrist put him on Namenda and Aricept, which made his thinking clearer sometimes but also made him aware of how bad off he was. I requested, cajoled, and finally argued with his drs. and CNP to take him off those drugs so he would be more emotionally comfortable. No one would do it, I was threatened with a lawsuit even though I had medical POA any my dad's atty. knew what was going on. From Feb. till Oct. he was left on those drugs no matter what I did. They finally took him off one in Oct., and took him off the other 4 days before he died! I was not willing to put myself through going to court over it - there was enough stress, angst and other duties that I just couldn't take that on too.
This is a really awful part of dealing with this disease. When he was lucid enough to know how bad off he was he'd cry, become very anxious and they'd put him on meds for that but NOT take him off the drugs causing him to be more aware. It really was horrible, and you and others have my total empathy. I think this is why I felt so relieved when he died - he was no longer suffering the indignities of this terrible disease. Big hug, 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 Feb 02, 2011 11:39 am
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Post Re: What to say?
Lynn, I remember reading your posts during that period and being horrified. But I can understand why you had to pick your battles and not sue them on top of everything else you were going through with your dad.

My mother has been on Namenda for three or four years, which was prescribed by her GP well before the LBD diagnosis. When she was having trouble with dehydration during that period, she was seen in urgent care and the doc told me to take her off the Namenda because it could contribute. I did, and could see quickly that it had been helping, so with her GP's approval I restarted it. At the time, she was still living at home alone, so she needed all the cognitive function she could manaqe. Aricept was added by the neurologist who diagnosed LBD. So I suppose she is in the same boat as your dad, except the SNF refuses to administer the anti-anxiety meds prescribed by her doctor. The DON says they are too much of a risk for falling!

I wonder what her doctor would say if I proposed discontinuing Namenda and Aricept. Probably the DON would object because my mother would be more confused and hence more work for the staff!

Julianne


Wed Feb 02, 2011 11:49 am
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Post Re: What to say?
Sounds like you handled the meltdown perfectly. It sounds like you'll need to stay with your mother for all future appointments.


Wed Feb 02, 2011 6:08 pm
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Post Re: What to say?
You are right, Robin, and I usually stay with her for appointments but it is kind of crowded around the dentist's chair so there usually I just stay in the waiting room. The dentist knows what is going on with her and handles her well, and he always comes out to talk with me after he is done to let me know what is going on.

Just this one time, I had to get something delivered so I did it while she was in there, and I was back well before the appointment should have ended--if there could have been an appointment. Actually, it would not have made much difference if I had been there, because she had left her partial plate back at the NH and nothing could be done! Going back to get it would have taken too long. It never occurred to me to look in her mouth to see if it was there before I took her, but you'd better believe I will check next time. It was a waste of a morning.

She called my sister after I left her back at the NH, and my sister said she was remarkably lucid. I had noticed the same thing, AFTER she had the shock about her memory--I dropped her off as confused as always and she was clear in her head when I picked her up, although upset and weeping. It was very strange, almost as if the shock of forgetting the partial had jolted her back to normal for a while.

It is pitiful--she is so concerned about saving face, and second to the shock of having totally forgotten everything about her partial, her next biggest concern was having looked "dumb." With everything else that is going to pot in her life, it amazes me that one of her biggest concerns is looking foolish and what people think of her.

Thanks,

Julianne


Wed Feb 02, 2011 6:53 pm
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Post Re: What to say?
Julianne, my Mom is constantly trying to "save face" and keep her dignity even though her capabilities are decidedly slipping. She would rather not eat than have someone feed her in front of the other residents. She has occasionally let slip that she must be "a dummy". I am almost positive that in her childhood her brothers and sister must have called her stupid and a dummy. They didn't like her much. It's a long story. Anyway, she is much above average in intelligence and was always an "A" student. But now, she worries about being a dummy and it gnaws on her. She thinks she is in competition with one of the residents at her ALF who is obviously intelligent and in the earlier stages of her dementia. Often I tell my Mom that she is a smart person and that it is the brain disease that is affecting her. She is aware of her dementia and has told me to repeat this to her as it helps. My heart breaks for the skinny, long-legged, knock-kneed girl in the photos who was told that she was a dummy.

By the way, from what I've been reading I think you are saying the things that I would if it were my Mom. As an analytical person I have found that the hardest thing is accepting the feelings that come along with caregiving. I'm much more emotional than I used to be. But I'm a better balanced person than I used to be because I allow my feelings now. I consider that one of the gifts of caregiving. Hang in there. AnnieN

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Annie, daughter of brave Marie, dx 2007 and in ALF


Wed Feb 02, 2011 9:53 pm
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Post Re: What to say?
We call the disease Lewy and we've kind of personalized him as the bad guy, or at least the unreliable guy. Tonight Coy picked up his dinner tray, complete with a full tall glass, and hot food and starting to carry it. I said, "Let me carry the tray. You are a good tray carrier, but we can't trust Lewy not to get mischievous."

I try to remind him often that his accomplishments and skills are still a part of who he is, even if he can’t apply them well now.

Coy is in early stage, with pretty good cognition at this point. I can imagine that blaming Lewy might backfire with someone who is usually delusional or paranoid. (One size truly does not fit all in this caregiving business!) But with Coy it is a small subtle face-saver.

Just as we caregivers often go through mourning at each loss we encounter (I know that I have), I wonder if our LOs need to do some of that too? Maybe Mom needs to cry over the losses in her life. Maybe Dad needs to express anger over his condition. Perhaps Hubby has to go through some denial about his decline. I don’t know. I’m just posing the thought for consideration.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Feb 02, 2011 10:20 pm
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Post Re: What to say?
Juilanne,
I think you handled the situstion the best that anyone could have, its a real eye opener, isn't it ? It also shows how your Mom needs someone with her for her appointments to try and help with future issues like this!

Glad she found them, because that would have been a whole other issue !

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Irene Selak


Fri Feb 04, 2011 12:52 pm
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Post Re: What to say?
I do go to appointments with my mother, but as I explained to Robin, in this case the whole issue wasn't whether I was there but rather that she didn't remember to bring her partial plate and the appointment could not proceed. This is the first time she has gone anywhere without her teeth (upper denture, lower partial) but you can bet I will be looking in her mouth next Friday when we try it again!

It is so easy to be blindsided by her sudden deteriorations in cognitive ability, maybe more so because she is in the SNF and I don't see her every day. This problem is compounded by the fact that my mother desperately tries to save face and hide her mistakes from me as well as the staff. Often I don't know that she is having trouble with something until it becomes a bigger problem than it would have been if she had told me.

I never know what to expect. On Monday, she suddenly reported to me that her eyeglasses that disappeared a couple of weeks ago were in her drawer. The nurses had looked all over for the glasses when they disappeared. So when she said she had them, I tried asking where she had put them and how she had found them, but she became defensive and tearful, so I gave up. Of course, the answer is that she didn't know because she had no memory of the events, but it is hard to get used to the fact that she will do something deliberate and have no recollection of having done it.

Julianne


Fri Feb 04, 2011 1:04 pm
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Post Re: What to say?
[quote="Julianne"] This problem is compounded by the fact that my mother desperately tries to save face and hide her mistakes from me as well as the staff.

Sadly Julianne,
This is often the case with many LBD'ers, their awareness of their losses is so great,its the part that hurts the most ! I know how hard my husband tried to keep up. Going to appointments was not only intended for you but to others who are going through similar situations who would be reading the posts here !

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Irene Selak


Fri Feb 04, 2011 1:31 pm
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Post Re: What to say?
Yes, I understand, Irene--just reiterating my frustration at taking an entire morning away from work to no avail, I guess! It is very true that being there for appointments is crucial.

I started going in with my mother for all her appointments about four years before her LBD diagnosis, because that's when she began failing to be able to tell me what the doctors said. Just one of the things that, in hindsight, was the beginning of her decline into dementia. At the time, I was so focused on each individual issue that I didn't step back and see the larger trend. Her doctor started her on Namenda three or four years before her LBD diagnosis because her word finding problem was getting so bad, in addition to overall forgetfulness. At that time, the doctor (a GP) just called it "early dementia." Wow, if I had known then what I know now! On the other hand, maybe ignorance was bliss......

Julianne


Fri Feb 04, 2011 1:53 pm
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