This rotten disease is enough to make you think you are crazy. I hear all the time how good my hubby seems to other people. Here I sit with him yelling out from the bedroom......"who is out there with you....I heard him go upstairs."

I am happy though that the family is stepping up and giving you some time away.........make sure you take them up on it.

Sometimes I think the doctors have so many patients they can't possibly remember how they were on their last visit. My hubby's neurologist asked me last visit how he ended up in a wheelchair. He has been treating him since 2001 seeing him a couple of times a year. My hubby's previous neurologist told us that he had never seen a case like his in his many years of practice. One would think that something that unusual could be remembered by his present neurologist. The caregiver knows much better what is going on that a doctor that spends 10 or 15 minutes once or twice a year. My heart goes out to you Deb. This journey really stinks......hugs & prayers......Jeanmarie

Deb,

I hear you...I feel that way often...how much longer can I hang on.

And yes, there is this weirdness where certain people do NOT see
what is going on. For one thing, we bring them to the docs usually during the part of the day that is better time, not at the worst times of the day, afternoon or evening. And then only a few focused minutes there....

Also, maybe the docs are in denial like some family and friends can be....I was really surprised at how 'concerned/upset' my husband's usually zen neurologist was last two visits. I think this disease upsets the docs a great deal....they don't like to feel THIS helpless....

would it help to print out parts of your journal or to keep a log to take to the doc?

It was my husband's geriatric psychiatrist specialist (who I complained that NO ONE would give me even a BALLPARK estimate of time left, even though I PROMSED not to sue anyone if they were wrong), who was kind enough to tell me ...'..I just don't see with him like this how it could be more than two years' While I think I can't last two more minutes it has been a help. I say to myself...I can last two years....(not so sure)

The good is your family stepping up. That is VERY good. Use EVERY second to refresh, rest, play visit, sleep, whatever YOU need....



s

So glad to hear more offers of help....God knows you need it (as we all do).

we go next week to Robs neurologist.....I think there is a big difference since JULY ..we'll see what he says. I agree its almost impossible for them to tell anything in 15 minutes!

I sure hear you about being tired...I am with you. hang on dear friend, thats all we can do :)

Start marking on your calendar the day to day subtle changes. When you go to the Dr next time you can take a recap of things like...
he stopped using a spoon-
refused a favorite food -
Couldn't put his sock on -

You know what I mean.

Just sitting all dolled up in the Dr's office - is no gauge.

One of the ladies in my face to face group has her 90 yr old mother in her home. She says her mother can still muster up some social graces .. and lights up around men. But at home an entirely different story.
I always thought Ron presented well at the Dr.s until the last year.. He was good looking, had good manners and it was just hard to think there was much wrong.
Glad you will be getting some more time off.

Judy

You know I really understand what you are feeling right now. It seems every time I get Ken out socially or to an appointment he is at his best. He has always had a quick wit about him and he is able to fake his behavior by being funny. But the children and I see him for the way he really is.

Judy is so right when she said that we need to write down the changes. We are the only ones who see them on a daily basis. I know Ken is different today than he was 6 months ago. He has lost his appetite, he cries more, he looks different, he sleeps more. He still knows who I am and he is still not incontinent, but I think that is right around the corner.

Did they do the Mini Mental test on Rollie yesterday to compare how he did the last time he was tested? Dr Zamrini did do the test on Ken last month and was quite surprised to see how many more questions he failed from last time. By the answers Ken gave, Dr. Zamrini downgraded or is it upgraded, Ken from mild to moderate moving to severe.

Deborah, I am choosing to not worrying about meals if Ken says he is not hungry. I am also letting him lie on the bed as much as he wants, all day if necessary. I am choosing to just let his body determine his fate. Also, I am not going to be taking him to a doctor if he should get a cold, sore throat, or anything else that may come along. I think pneumonia would be a much better way to go and with their bodies already in a weakened state, it could happen. They have no better options. Theirs is a living "HELL" and therefore so are ours.

I think your doctor saw Rollie at his best, not at his worse. I know that Rollie is much different from your posts in July to now. I feel that you are moving toward the end.

I sure wish we could get together for a weekend. I am trying to get away for a couple of days each month.

Maybe we could meet up in Las Vegas or somewhere where it is warm. Do you think you could pull something like that off. How far of a drive is it for you?

Sharon, let me check it out, I know that LV is a short plane ride but a long car ride. I'll check with the family.

Well finally something I can talk intelligently about...I feel so proud lmao.

I've been seeing a neurologist monthly for just about a year now for nerve issues related to spine surgery and a car accident. So I know exactly what it is like to see a doctor who doesnt see me. I go to my appointments well dressed and with a clear plan. SO to my doctor I look good. He asks how I feel and it seems odd to spew a list of complaints but I do.

I have to keep a log of what is happening because I can't remember what I was like this morning let alone a few days or weeks or months ago. And my doctor doesn't either. He is a really sweet man but he is frustrated that there is no fix for me. He does his tests and writes his notes and suggests another medication that might work. Then he sends me on my way. We talk almost every week inbetween appointments but I swear he has no memory of what is wrong with me.

Keeping a daily journal is critical. It's one of the things I will be setting up for my mom when I see them next month. I'm also planning to setup some other record/paperwork keeping systems for her. She is still pretty good with paperwork but it is getting harder and more tiring. ANd I imagine it will only get worse.

Another thought would be to take some pictures in between appointments. It might help to give the doctor a better picture of everyday life. Also voice recordings if speech is a concern.

On a personal note my dad saw his GP today. She told him that he could not drive on the highways anymore. YEAH!!! Fortunately he still believes in authority so while he is upset he will listen.