Re: Lesline Update for Feb-Picks for Sally

[Guest guest]

Dear Sally,

My brother -in- law has picks disease. There seems to be a lot of

inappropriate

sexual behavior with his Pick's. Because of this behavior he was kicked out

of many care facilities as he would go after the women. Unfortunately they

have to dose him with drugs which leaves just a shell of a man.

You take care of yourself. I empathize with what you are going through.

later and hugs,

cindy

Lesline Update for Feb

> Dear Group

>

> I haven't been able to read or write much for some time now due to

> dealing with my mother and her latest escapades. She was only allowed

> to stay one month in the last nursing home I moved her to and I now have

> her settled into an Alzheimer's Unit which is locked tight. To say she

> has been difficult would be a gross understatement, to say the least.

>

> I have been spending time researching dementias as I have said all along

> I didn't feel she had Alzheimer's but I had no idea what it really was.

> My doctor suggested I try to match the symptoms with the different

> dementias and try to build a timeline of her progression to see if I

> could come up with something. He felt I would be able to make more

> sense out of it rather than to depend on brain scans and tests for now

> since nothing has been evident up to this point. The nursing home also

> agreed it wasn't Alzheimer's either but couldn't say much more than that

> other than she just didn't fit any pattern they had seen.

>

> She cut off her bracelets, learned the codes to the doors, set off the

> fire alarms, talked the pharmacist into letting her out, watched for

> maximum confusion times and off she would go. The top distance was 1

> mile from the nursing home in a very short period of time. She also

> made it to a construction site about half a mile away and almost had the

> people convinced to call the police before the head nurse could get her

> loaded back up. She went out every door in the building, locked or

> not!! Now you know why 1 month was enough for this nursing home and it

> is a well staffed home with people everywhere. Mother won the award for

> the most difficult patient to contain so you can imagine how hard it was

> for me to find another place willing to accept her. Most of them just

> looked at me and laughed. It's been a long hard week here in Kansas.

>

> My best guess now is that she has Pick's Disease or a Frontal-temporal

> lobe dementia which comes under the heading of Other Dementias listed

> under Alzheimer's. In my research I found that most of the neurological

> disorders more than over lap, which most of us already knew. What I

> didn't know was ALS and some of the disorders we deal with in MSA seem

> to keep popping up in conjunction with this. It looks like they are

> trying to pull several of these in under one name much like they have

> done with MSA.

>

> So, I continue my journey trying to see what else I can find. I am

> still looking for a researcher who will accept the brain donation. I

> haven't heard anything back from the Alzheimer Assoc and I can't seem to

> find anyone connected with KU Med that will give me a straight answer.

> I think I might try Omaha next. I know timing is vital in making the

> transfer when needed so I'm trying to work through it.

>

> Enough ramblings for now. Hope all of you are doing ok.

> >From the clear and starry skies of Kansas

> Sally

>

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[Guest guest]

Sally,

I know that this must be a very tough time for you and I sympathize with

you. I know that the going is tough. We are not there yet (but we are

close) with my husband. His mind is sharp as a tack, but he can do nothing

for himself physically except feed himself.

May I encourage you to understand that what ever is happening to your

mother, she probably has no control over it. We have been involved at the

social level with several people who were leaders in there community who

near the end of their life did some of the things you are describing. They

would have been so ashamed if they had only really understood what was

happening/what they were doing. Several of them also did that stuff of

figuring out many different ways to get out of the nursing home, etc.

Just observing my husband, I think that he is so miserable locked up in that

prison of a body that there will never be an escape, that he has to lash out

in other ways, just to keep his owm sanity.

I am trying to live by my words, but it is hard.

Marilyn in TN