An update on dad - Alzheimer's Disease & Dementia Message Board

LuvMyLilDoggie · 09-01-2006, 06:49 PM

Dad is now on Nemanda as well as Aricept (FINALLY!).

Brief history for those who don't know. Dad was tested for AD about 3 years ago and started on Aricept. He's been declining more rapidly lately although he still his good days. He was tested again earlier this year for the specific purpose of getting enough evidence for the VA to approve the Nemanda prescription for him. He did very well on that test so the VA turned down the request for Nemanda saying that it's very expensive and is only approved when a patient has a substantial decline in memory and cognitive skills. Fortunately, he has a doctor who was determined to see this thru. He was again tested recently and my sister said it was a very bad day for him. He failed the test miserably. I never thought I would say that was good news but at least now he has the medication he's needed for so long.

AND HE DOESN"T WANT TO COME HOME!!! (((insert "jumping for joy" smiley face here)))

My hours at work just keep expanding. Lots of OT which I cannot get out of even if I tried. It comes with the package. Oh well...I can pay my bills...

Love, Barb

Martha H · 09-01-2006, 07:15 PM

Dear Barb,

I'm glad for your dad and I do hope the Namenda helps him. Don't work so hard that you get sick again! I know it's good to earn money - but not at the expense of your health.

That's good that he doesn't want to come home .. you don't need that extra responsibility!

love,

Martha

LuvMyLilDoggie · 09-04-2006, 02:38 PM

Oh believe me, Martha, my job is so cooshy it's unreal!

I have almost 3 hours a day where I have absolutely nothing to do and I get paid for it! I can actually fall asleep if I wanted to. I don't though because you know how uncomfortable school bus seats are! LOL!!!

So really I'm just working about 7 of the 10 hours each day. The rest of the time I read, do circle the word puzzles or sit on a grassy hill next to my bus in a park near the school and enjoy nature. I have lots of thinking time on my hands...

I just worry that dad will want to come home and all that peaceful time will be full of worry again...

Martha, I was looking back on some of my old posts and saw one particular reply to me that sticks in my head. It was a couple of days after my sister came to take my dad home with her. I was worried that he wouldn't stay long before he wanted to come back. You said "Tell her you'll take him back Christmas 2006!"...That was in June, 2005. When you posted that, I thought "Yeah, that sounds good." And it did. But Christmas 2006 will be here soon so could we PLEASE move that to 2007????

Love, Barb

Martha H · 09-04-2006, 03:31 PM

It's too icy and cold to move him in December .. so make it June 2008!

June 05 is when I left NY for Indiana, Mom went to live with Bill, and I started my new life here, which turned out to be all I had hoped for and more. I can't even believe I took care of Mom for so long.

In spite of all her handicaps, she is going strong. The NH took the whole unit out on a bus trip to eat at an Italian restaurant last Thursday. Mom loved it. They have a wheelchair lift on their bus.They do this from time to time and it costs extra, but is worth it. Mom said on the phone recenty,' Life is too short. I am enjoying it so much." She will be 98 in October!

Enjoy your good job. I'm happy for you!

love,

Martha

LuvMyLilDoggie · 09-04-2006, 05:25 PM

We regained our freedom just within a couple of weeks of each other. We're proof that there is life after caregiving even when our loved ones are still kicking.

I know it may sound cruel to some but if I had stayed in the situation I was in, I would have been incredibly sick myself by now and not much help to dad or my family. I wouldn't have the job I love now because I couldn't be away from dad this long every day.

I didn't want to let go of dad. I struggled with the guilt for a long time. I still long to see him and would love for him to live with me-IF it were possible for both of us and we were BOTH happy with it. I know in my heart he belongs with my sister. He's more happy there than he is here and it shows.

Now my sister is on nerve pills instead of me. I used to take them but don't have to anymore. In my book, that says a LOT about what caregiving does to our bodies and minds.

Love, Barb