*sigh*Sometimes, I just get tired...

skimps46 · 06-06-2008, 12:33 AM

Hello all!
It's been a few days since I have posted, as dad has been simply spectacular - for him, anyways. And being who I am, hope springs eternal as I take him for little walks, he accompanies me to Walmart (!), and he knew I was his daughter. And of course...it can't last.

This morning, he stayed in bed. Uh oh. He is never in bed at 9am. Just tired, with one of his frequent headaches. His normal blood pressure of 110/70 was up to 150/90, but he was in no distress, and wanted to just rest. He did get up and eat his daily beloved fried egg sandwich (the one thing he will eat all gone, every time) but back to bed till 4. Then, he got up for supper, and told me that he wants to move (the prevailing request of the past 6 month) back home - Nebraska. We live n Colorado. So I took a cue from y'all and said, "Really!" and changed the subject. I noticed that all the curtains are methodically safety pinned shut (paranoia?), he is "picking" at his food again (except for the fried egg sandwich), can barely walk...

So here's my question: I know this disease ebbs and flows. Peaks and valleys. But does it seem to you that the valleys get deeper and the peaks never rise as high again? Once he comes off his "high" period, he seems to sink lower than before, and never again regain the function he had before he took a dip. Make sense? I think a lot of his "valleys" are caused by TIAs as he will be all incapable and tired, then 6 hours later - VIOLA! He is up and dressed.

And - Does anyone have a good website with perhaps a checklist I can use to figure out exactly where dad "is"? Seems like the doctor is good for every 3 mo or so, 15 minutes. It would be super helpful for me to see clinically where his cognitive impairment falls - I am so close to the situation that I can't tell if dad is really as bad as I think he is (no idea of month, year, president, denies having any children <uh, helLO!>, dresses self and feeds self, can run washing machine but not any clue how to run microwave, does NOT wander, lets dog out and forgets he HAS a dog...etc), or maybe I am imagining it all. I doubt my own perceptions.

And - I have been noticing that he obsessively rubs his bald little head all the time. Rub rub rub. Is that standard? He says it doesn't hurt...he just rubs his head all the time.

And (I know. Shut up, right?) how do I get an in home care evaluation? Doesn't the doctor have to order it? I know Medicare will pay for some home health care.

Ok. That's it for now. I will save the rest of my questions for later.

You all save my life. You know that? My LIFE!
...deb

DGabriel10 · 06-06-2008, 01:24 AM

Your observation is right. There are peaks and valleys but each down turn is a little lower and each up swing is not quite so high as the one before. What you end up with when you plot the wavey line is a decline. Your Dad may be having TIA's or he may just be responding to which little synaps are closed off. It still amazes me what they retain and what they lose, but when you realize each memory is stored in it's own little area of the brain it makes sense. It all depends on which little area of the brain is crowded with the tangles and plaque and which neurons are still functioning. You also have to consider the concentration and energy it takes for them to function. We don't have to think about how we do simple things. For them it is like learning a new task without the ability to remember what we have done.

I smiled when you talked about your Dad rubbing his head. My dad picks at anything irregular on his skin and there is enough there after spending a lifetime in the sunshine for him to stay busy for whatever time he had left. Every little rough spot "need to come off"!! So he sits and scratches and scrapes and picks until it bleeds. I wish he would rub his head!!!

I doubt you are imagining. If you truly want to know where he is you need to have cognitive testing done. That is probalby the only sure way to know. I haven't seen a web site that determins cognitive level with questions and answers as you described. Even when we had Mom's cognitive test they could only tell us that she had moderate to sever dementia consistent with ALZ and then give us her specific impairments such as she processes visual stimuli much better than audio stimuli. Each tested element had a rating which came together with the above diagnosis. I'm not sure what a number tells you anyway. You know your Dad. There's not hard and fast rule about how long they will be at a level or exactly what that level will be like. There are only guide lines and each patient progresses at their own pace in their own way. The rest of us just deal with whatever happens in the moment

Hang in there skimps..... your vacation is getting closer and closer

Love, deb

Janie5301 · 06-06-2008, 07:22 AM

Hey Skimps,
I agree with Deb. Each patient is different and may not really "follow" a list of characteristics anyway. When my DH was diagnosed with Pick's, I went online and read the list of characteristics and he really didn't follow it too closely. There are certain things that our loved ones all do, but for the most part, I just stopped reading because it all scared me too much. I just decided to live each day and deal with whatever came my way.

I know I did that late in my DH's life and was surprised that he was as far along as he was. I guess living and caring for him everyday I just got used to his behavior and of course didn't want to believe he was that far along. My DH used to carry silver dollars in his pocket and he called them "cha ching". He would pull them out and count them, make piles with them etc. so I think it's just something all dementia patients do. I found one the other day under the sofa....and it brought a smile to my face.

Love you all,
Janie

Martha H · 06-06-2008, 07:36 AM

"the valleys get deeper and the peaks never rise as high again."

What a beautiful, poetic way of stating the bare awful fact of this disease. You have expressed the whole pain and sorrow of dementia in a few well written words.

That is exactly the way Mom's disease progressed.

Hang in there, the tiredness is entirely normal. Eventually you will have to find the kind of care that gives you enough rest.

Love,

Martha

ibake&pray · 06-06-2008, 12:43 PM

deb,

You're right. It's much likw sliding down a hill. When you go to climb back up, you can't get back up as high. so you only go up a little ways...then down you go again, only farther...and the hill gets slipry-er(new word here) as you try to climb back up. Just like their memorier-they just slip away from them. My dad used dto say that he could see the memories in his head but they jsut kep slipping away from him...

Hang in there and count the days to your vacation. Teach your neighbor to make the egg sandwiches for your dad. Set up a time to call him twice a day when you are gone so you won't feel so guilty....leave all the emergency numbers in a prominent place. Type up a daily schedule for her to follow for him....make sure he had enough meds. Put them in pill a day boxes for her...are you tired yet? I am!

enjoy your dad as he is now. You will notice a change in him when you return.I always did when I had been away from Mom..