Re: Helene

[Guest guest]

Hi Helene-

My heart was warmed by your post. Never in a million years would I have thought

I would have cared for my dad. Almost feels like life has come full circle

doesn't it! We are chosen as caregivers and find we have more strength and

courage than we could have ever imagined.

Thank you for sharing your visit with your mom. I miss those visits and truly

enjoy reading when others have time with their loved ones.

What you explained about the change in your mom's memory takes me to this being

a moment by moment disease. Maybe the next time your mom will remember where to

throw the TP yet won't remember how to hold her sleeves. It is an odd disease

for sure. I can only imagine how frustrating this must be to our loved ones

knowing they are able to accomplish tasks one moment then struggle through the

next.

Best of luck with the dentist. I know what a struggle it can be getting a loved

one to the dentist. When reading of the dentist need for your mom I was taken

to a memory of my dad. He lived in an apartment by himself and I had a social

worker and nurse checking on dad daily along with meals on wheels (plus the many

times a day I was there). Anyhow, dad swore someone came into his apartment and

pulled one of his teeth. To this day, 6 years after his death, I am still

unsure if this really happened. I am inclined to think it didn't, however, his

story was very believable. Hmmmm

Happy Monday. Sending along hugs-

Sandie

Des Moines, IA - where the high is supposed to be 76 today

dad, Merle, passed from LBD 9-20-02, at age 65

-- " Helene GM " wrote:

Dear Sandie,

I tell my Mom the same thing you told your Dad... that we are here

for the long haul for her. She always apologizes when I have to help

her in the bathroom, or dressing/undressing.... and I tell her that

she would do the same for me in a heartbeat, and in fact did when I

was a kid... and helped me with my own kids... and she smiles and

laughs. I had a lovely visit with her today.... she was so lucid,

and seemed a bit stronger. She ate well, and engaged us in

conversation. This disease is the damndest thing.... she can forget

where to throw her toilet paper, but instinctively remembers to hold

on to the edges of the sleeves of her nightgown when I put a fleece

over her, so the sleeves don't roll up inside the jacket sleeves.

Amazing....

I either have to find a dentist that can come to the house, or help

my aunt get her to my uncle's dentist in the Bronx - she has a bridge

in front that is coming loose.... Monday's task.... Hope to get

that resolved by the end of the week..

Hugs to you,

Helene

> Hello to all.............after reading Ron's post, I'm not sure if

I should be a member of this group or not. If I could help caregivers

in any little way, then perhaps it is.

>

> I am a 59 yr old forensic psychiatrist. I was diagnosed with Lewy

Body Disease 1 year ago. My life has changed totally. I practiced in

CA but had to take medical disability and have voluntarily

surrendered my medical license. That was a big blow after all the

years of work to obtain it. Fortunately, I caused no harm to

patients.

>

> My wife and I had to sell our home in CA and have moved back to PA

to our 'roots' where we have family and friends for support.

>

> I am now on Namenda and Aricept and notice many positive results. I

just had another SPECT scan which showed severe neurogenerative

changes. It becomes more difficult to remain in denial especially

when I look at the scans. I guess I've always been able to justify

all my gradual deterioration over the years with other 'things.'

>

> I could go on and on but nothing I say is new to anyone. I'm still

trying to find a new 'me' and an identity other than being a

physician. I hope to be help to help others as a victim of this

disease. I'm not sure just how to do that yet.

> When I trained, we didn't have SPECT scans. So I'm no expert on

interpreting them. Other than having them done to check for

plateauing out versus looking at progressive changes, they help me

the most to have to accept that I do have a disease and that I must

accept it and deal with it on a daily basis. Fortunately, I am still

cognizant enought to be able to verbalize just how frustrating it is

not to be able to remember little things, to find difficulty finding

words when I speak, to feel the shame and embarrassment when I forget

where I am and get people mixed up in my mind.

>

> So, to all caregivers. Thanks for being patient with us and for

just being nice to us and making us still feel important in life. To

me, this is the major battle I currently have. I still need to feel

important to others and to society. I don't feel that anymore. It is

a loss.

>

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