Lesline Update for Feb

[Guest guest]

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