Lewy Body Dementia Association, Inc.

[Perry]

I meant to add one more item.

There is no recreation of any kind for her. No TV, no music, no discussion of other subjects, no nothing. She only discusses her condition over and over and over again. Occasionally she will obsess about related subjects --- such as "we have no money because Steven can't work, how will we eat?", etc. --- but for the most part, responding to her is repeating the same answers to the same questions.

So the suggestion to get her involved in other things, which again sounds right, doesn't work here.

Thanks.

[Dianne C.]

Perry- I think you identified the situation...she is afraid. Afraid of being left alone in her condition, afraid your brother will leave...just afraid. Some of these things are so magnified in their minds it becomes obsessive. The only thing I can think of to offer is perhaps getting someone part time. Have Steven and her take mom for a little walk...together...everyday. Look at pictures...together. Form a quasi friendship if that is possible. Once trust is established she may be open to a short time alone with that person..start with 5 minutes...so she knows Steven is coming back...and you are too. But Steven needs to be a part of this too. He cannot be her enabler. He has to understand that if something should happen to him...then what? Is Steven aware that 60% of caregivers don't outlast the patient? Sometimes we have to do what is in the best interests of the patient. He needs to work with you on this together. Only my 2 cents. My wishes of good luck to you, I know it can be exasperating. You have done your best...thats all you can do.
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Dianne C.

[Perry]

Thanks, Dianne. I think you are right. A very, very gradual approach to a caregiver is the only possibility. My brother has to agree.

But there is no "looking at pictures" as you suggest in your letter. Our mother can do and enjoy nothing. The only relief is when her anxiety level subsides for a time, for whatever reason. This is what makes everything so tough. It is hard to experience her abject suffering and then do something that will add to it.

I wonder if anyone out there has a situation like this --- a loved one who is always overwhelmed with incredible anxiety and who can do nothing, enjoy nothing, and feel nothing except pain.

Thanks.

[nsalvadore]

I am sure this is not the reply your brother wants but....my husband is in a facility and actually does better than he did when I used to bring him home on weekends. No matter how crazy things are in the TV room it seems to distract him...he watches everyone and everything going on...cannot watch TV, read or carry on a conversation...but for some reason he does not get into his delusions or hallucinations when watching the other residents. When it was just the two of us in the house he used to get very agitated, delusional, hallucinated constantly. I go every day and some days does not recognize me is just sitting there watching the craziness.

[Dianne C.]

Perry- had another thought. Is your mom on any anti anxiety medication to help alleviate all of this anxiousness? Also..perhaps if brother was going through some albums or boxes of pictures..looking at them and making small comments...it may just peak her interest and she may start taking a look with him.
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Dianne C.

[Perry]

Dianne,

Yes, my mother has been on many anti-anxiety medications, all of which did nothing. I think that there may be some as yet untried. As I've said, we have not been super happy with any of our doctors.

As for pictures, it is a good suggestion. But it won't work here. There is no interest in anything --- just panic, hysteria, terror, crying out, and suffering. No one would believe it.

Again, I wonder if anyone else has faced this. I have never read any description of individuals with this or any other disease that act in this manner.

Perry

[raffcons]

Klonopin (generic is klonazepam) has worked wonders for us with anxiety. It comes in a dissolveable or wafer form which just goes on or under the tongue and dissolves quickly -- no need to swallow.
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Renata (and Jerome)

[Perry]

Raffcons,

Thank you.

We give several Ativans a day and have done so for years. They have minimal effect at this point. But we don't give a lot, only about 3 1/2 mg pills per day.

Can you describe the degree of anxiety in your LO prior to use of klonopin and the result after starting to use? How much do you give per day and what mgs per pill? Do you vary the amount based on the condition each day?

I suppose we could ramp up and give a lot more ativan and make her calmer but then she would be almost comatose. Does this happen to your LO with klonopin?

Thanks. Really appreciate your input.

[judy73]

Perry,
You are right about the Ativan being minimal. I use it also with Johnny, in 1/2 mg. increments. It can be increased. I give him about 4 1/2 mg. tablets in a day, and the Dr. still considers that minimal. Worth a try?
Bless you for your patience. It's not easy. The terrors are the worst for us, too. I hate for him to be so frightened. The thing with us is that Johnny can't talk much, voice just doesn't seem to work all the time, especially when he's frightened. I can just see it on his face. Or if it's nighttime, he grabs my arm, won't let me help him. We just stay quiet mostly. However the other night he awoke and grabbed me and said, "Judy, wake up. Wake up!" "I'm awake." "No you're not!" Hallucinating? Who knows. And some nights he just kicks at me and tells me to get out of the bed.
Thank God for the forum!
Judy

[JaneGrace]

Perry,

I am waiting for a more definitive diagnosis on my husband, but he also had behavior issues similiar to what you describe with your mom: He had 2 rounds of ECT's that only helped minimally to treat his psychosis. He has had the whole gamut of emotions - from depression to mania, hallucinations, delusions, very psychotic behavior that did not respond to the typical meds. He was being treated for Bipolar Disorder and had been given Haldol - which had a terrible adverse reaction in him (and is what makes me wonder if he has DLB).

We are still in the process of getting answers. I have some doctors who are entertaining the thought that he could have a form of DLB (although he does not have the Parkinsonian features that seem to be prevalent with Lewy). I have also had doctors who think he just has a "mood disorder" that is causing the severe cognitive decline. I think it is hard to determine a diagnosis because he is only 47 - he was 45 when this all began.

While I understand that your brother does not want to consider this as an option, I eventually had to place my husband in a nursing home. I am only 46 and still working full time and he required constant supervision. I do not work set hours (I am an RN and my hours are varied and I work weekends). It was actually more cost-efficient to have him there than to pay for a private caregiver (he qualifies for medicaid and I pay a portion of the bill each month too). It has been hard for both of us, but at the same time, probably saved my sanity. I tried caring for him at home and it was difficult because he didn't always sleep well - he'd be up wandering in the night and then I couldn't sleep, yet I'd have to get up and go to work. Another option is adult day care. Don't know if there is something like that in your neck of the woods, but I did use that as well before he had to go to a nursing home. It was a good place for him, but it conflicted with my work hours certain days. Even if your brother could have her there a day or two a week it would give him some breathing room. Caregivers get very exhausted.

Take care, and good luck.
Jane Grace

[Perry]

Robin,

After all this time, think I might have pulled the wrong "Continuum" paper than the one you indicated. Mine is also from Continuum, but is written by Douglas Galasko and dated 2007 rather than 2004. It does, however, seem to include virtually the same pharmacological chart as Boeve's paper.

I'll read Dr. Boeve's paper, but wonder if you are familiar with Galasko's article and think that it is more or less the same thing.

Thanks.

Perry

[robin]

Hi Perry,
I haven't taken the time to read Glasko's "Continuum" paper. Boeve is an LBD expert (and a member of the LBDA SAC) so that's why I've chosen to concentrate on his approach rather than someone else's.
Robin

[raffcons]

Perry --
Sorry I never answered your last questions about klonopin/klonazepam (that was the day Jerome died).

Jerome would get anxious, afraid, or start snapping at me. He could tell me he felt jittery or anxious. Over five years, he started on .25 mg., then after a few years, moved up to .50 mg, and in the last year, as the effect of that seemed to lessen, doctor bumped it to .75 mg.

Would give it to him once a day if and when it was needed -- some days not at all. Or if he was having a hard time falling asleep and the melatonin wasn't doing it, I gave it to him to help fall asleep.

It did not knock him out or make him dopey or drugged. It really just took the layer of anxiety off, and relaxed him a little.

Ask your doctor to prescribe the dissolvable tablets or wafers -- the ones that go on or under the tongue and dissolve. They get right into the blood stream and work quickly. The regular pills that you take with water take a lot more time to kick in.

Hope that info helps. I was very pleased with how klonazepam improved Jerome's (and by extension, my) quality of life.

Good luck!
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Renata (and Jerome)

[pward]

My husband Ray is in a Nursing Home one month this week. You may recall I wrote about the difficulties we had with the decision, and how he was so good and agreed to go, although it was very hard for the first couple of weeks and he was so sad. He does come home some afternoons, and we are lucky in that some member of the family or one of his friends are with him most days.
Ray had very hard times at home, halluciantions, panic attacks, anxiety, really terrible times.
Since he has settled in to the Nursing Home, the one thing I notice is that fear has gone from his face, that fearful frown has gone. He is more relaxed, calmer and very little agitation.
I am convinced that we do not fully understand what is going on in that LBD mind. I believe from what I observe that with this condition, the person needs to feel secure, needs routine, needs not to feel challenged to behave "normally" I am convinced of this, as Ray has improved enormously since going into the Nursing Home. I can tell you I did not feel this after the first week, as there were some teething problems, but it is remarkable how well he is now. When he comes home, he will often say to us around 5.30pm, I'd like to go back now. If you asked me one month ago could this happen I would have said absolutly no.
the time we spend together is much better now, I am not stressed, and I have a life back, everyone is commenting on how more relaxed I look. I am very confident that the correct decision was taken, it took a long time, but I had great support in making the decision, I in fact was the last one to give in. I did a lot of research to find the right place, and I am satisfied with the whole setup there, good people, they took on board all his likes and dislikes, and were anxious to learn from me what his particular needs were, they understood that each LBD patient is different. They even make a fresh sandwich for him each night,as we did at home.He often gets hungry about 2am in the morning, by the way that is a great way of settling them back to sleep, if you have not already tried it, it works a treat. I can only say I feel sad now, that Ray is no longer is his home, but I do not feel guilt, I know we did everything possilble, myself, the children and Ray's sister, we all walked the walk night and day, there was nothing more we could do.
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Polly

[dorthea]

Polly, this report about Ray causes me to feel a certain amount of satisfaction. I am so proud of you for facing up to what needed to be done and then doing it. This is evidently the correct placement for him. Keep us posted.

Dorthea