I invite you to read Friday's (7/25/08) Blog about our visit to the doctor. The idea was to advise him of Sid's depression and rage over the driving loss. As expected, when asked how he was doing, Sid wasn't what you would call forthcoming.
Please read the blog and post here if any of you had experiences like this. Thank you.
Joan, when I knew my DH had AD, I made an appointment for his "annual physical" for him and went with him, and he would tell the doctor he was fine, and then I described my DH's behavior to his doctor. The doctor ended up at the end of that appointment giving him the mini test, which my DH passed with flying colors, and I looked like the hysterical woman who didn't know what she was talking about. The doctor believed him and not me.
The next year, for his "physical" I had a five page, single spaced, typewritten detailed examples of his behavior, personality changes, forgetfulness, etc. that I passed to the nurse for the doctor to read prior to seeing us. Once again, the doctor asked him what was going on, and he said "fine"!~!!! Not only that, he denied he got lost, was forgetful, etc.!! Due to my letter, the doctor scheduled an MRI and made an appointment with the neurologist, which led to the AD diagnoses two weeks later.
There is just something in some AD people that they don't want to tell others that anything is wrong - plus they have already forgotten the scenes!!!! It is SO frustrating!
I'm with you in spirit during this period you are going through right now!
In 2002 when M's AD was about to be diagnosed, I noticed that she was not filling out paper work that the doctor had given her. I had never sat in the exam room with her and her doctor, as she wanted a bit of privacy. I went in with her on her next doctor's visit and was horrified to witness her saying "I'm fine," when I knew she had been having night time hallucinations, etc.
From then on, I was with her in every doctor's visit and I carried with me a short summary of her symptoms and problems relevant to that visit and I talked for her to the doctor. The doctor's all appreciated my presence and prescribed for her accordingly.
I sadly realized that she had no idea of her problems and couldn't remember what happened even a minute earlier. She was once an airplane pilot. Somehow I remain upbeat, cheerful and not depressed by AD.
C, how do you remain "upbeat, cheerful and not depressed by AD"? I try, but there are times it just doesn't work.
Regarding doctor's visits, I go in with DW every time. When the doctor asks her how she is doing, she just replies "Ask him, he knows everything". Fortunately, the doctors have accepted my explanation of her condition right from the start. (and that's not because I am a doctor. The original neurologist did not know me or anything about me)
Joan, My husbands Alz hasn't advanced too far but I think the "I'm fine" is an automatic response even with someone who doesn't have AD. I know when someone asks me how I'm doing I give the same answer. This post is probaly of no use to you or anyone else but it crossed my mind when I read your blog. Maybe the doctors should ask "How are thing with you?" As for driving...my husband never did like driving that much so he doesn't have a problem with me driving. We had to go renew my military I.D. card yesterday, it is a 2 hour drive to the base and 2hours back... for some reason I was absolutley worn out when we got home. I did better driving to Ohio earlier this year! I hope the next appointments go well and Sid gets some help.
Marsh, I try to think about things that I do have control over. Perhaps I will go outside and do some yard work. Trimming dead tree branches with my chainsaw is stress relieving. Maybe I will work on my seemingly endless online photo album concerning me, M, son, grandchildren and ancestors that I write in native .html and Javascript code. Maybe I will drive to the local pistol range and shoot a few targets. I manage a web site for a local civic group. Sometimes I just close my eyes and try to not think about anything for a few minutes. I am presently waiting for the washing machine to finish so I can put the clothes in the dryer. I don't drink anything stronger than orange juice at breakfast.
It doesn't always work though. Several weeks ago she became quite ill and I had to call 911. She spent several days in the hospital with a severe urinary tract infection. That prompted me to purchase "preneed" services at the local funeral home. I did shed a few tears during those terrible days. Now that she is home again and enrolled in the Visiting Nurses Association's "bridge to hospice," I feel OK again.
C, thanks for sharing your story. I, too, was able to make it thru the whole AD journey with my husband without having problems with depression and feelings of despair. I took time for myself by arranging care for him and eventually taking him to day care. He was not always happy about my "choices", but I realized that somehow I had to survive his illness. I owed it to myself, my children and most of all, him.
I always kept an upbeat attitude and tried to find the humor in the awfulness that surrounded me. I couldn't do a darn thing to fix anything so I kept trying to look for the "silver lining". Now don't get me wrong, it wasn't always easy and there were days when I thought I would lose my mind, but I was determined to make it.....and I did. Now that he is gone, I have no regrets, I do not cry as I grieved for his loss many years ago. By the time AD did its work, my husband was no longer there....I had lost him a long time ago.
Regarding the doctor...Joan, just give the doctor a short summary of what is going on....this is the only way the doctor can really know what is actually happening. You are in the rough part, it is so hard since sometime I know that he seems "normal" and you want to let him be who he was. Just remember, one day at a time....one day at a time.....
I've been going in to the doctor's office with DH for years. long before he had Ad, he knew that he didn't remember what the doctor told him, so he wanted me there. As for the driving issue. I'm not crazy about driving, and my DH used to love to drive. We drove to Alaska from the East coast with our RV, we used to drive to Florida several times a year, "nothing is far if you're in the car" was our motto. Now that I have to do all the driving, I don't agree so much with our motto. Anyway, getting back to I'm fine, We were at the doctor's recently, (it was a clinic where they are doing research at the VA), and he was of course fine. It was a 2 hour mini-maxi mental, and I am very anxious to see how he did. I was there, and I could see the problems he was having in problem solving. So interesting. I did find out a few things though. For instance, I told the technician about him sleeping all the time, and that Alz org says it's not a sign of AD, well, she told me that so many of the caregivers she interviews complain about the same thing. That actually made me feel better, knowing that it's a part of what to expect. Getting back to I'm fine, I agree with Jean21. yesterday, I had to go to the dentist because my new bridge was hurting, and of course, when asked said, "I'm fine". then I went on to tell him why I wasn't fine. That's where our ADLO's stop. They don't go on to explain all the other stuff.
Joan, my husband truly is not aware of his problems. It makes no sense to expect him to discuss his status with his doctors. They ask him questions, then glance at me to see if I agree. (Rarely.)
I'm ALWAYS with him, even if it's something as simple as going to the lab to give a blood or urine sample. I found out the hard way that he won't remember what he's told, or won't understand what they want. I'd taken him to the lab for some testing, and when it was his turn, asked him if he wanted me to go along. (This was a couple of years ago, and he was doing quite well, and it seemed silly to hover THAT much.) He said he wanted to go in by himself. After a while, he came out with a small brown bag. I asked what it was ... he couldn't tell me, so I opened it and found a container for collecting a urine specimen. I explained what it was, and he said they'd told him to collect the specimen at home since he didn't feel the "urge" right then, and bring it back the following day. Fine. So we're going to go home, but as I tried to guide him down the corridor, he balked near a restroom -- he desperately needed to go. I told him that was great, he could collect the specimen right then, but he insisted it had to be done at home. I finally had to go back to the lab and talk with them to confirm that of COURSE they wanted it then and there, but that he'd insisted he couldn't "go", before he gratefully went off to relieve himself, specimen cup in hand.
Visiting nurse came yesterday for an assessment visit. Everything was "fine." He really performed beautifully for her. Of course, when she left he was more confused, and had more aches and pains than ever!
Do all your spouses moan and groan? Mine has a bad leg, granted, with arthritis in it. And arthritis in a shoulder. So all movement occasions moaning and groaning - here at home! Not in the hospital, though. He felt "fine". When do *I* get to moan and groan?
and he's started holding on to things that are low instead of at shoulder height, walking around the bed leaning over, with his FISTS on the bed. I tell him he looks like a chimpanzee!
My DH started out somewhat aware he had "problems" but he couldn't explain them well, and he also, being "proud" would not discuss them with the doc anyway.
This was an issue over a few years. My Dad has AD, and particularly while my Dad lived with or near us our daughter would complain to DH that he has memory problems and he should go to the doctor. She was only 10 years old then. DH of course would snap at anyone who implied he was "getting just like Grandpa."
After 3-4 years he was significantly worse and even got lost trying to find me on the freeway. We only have one freeway near our house (rural), and I called because I had a flat tire. My Dad, who has AD was in the car with me so I would not get out of the car to change it myself. Son was with DH telling him to turn onto the onramp, and DH went back and forth on the frontage road 6-7 times, each time passing up the onramp, insisting he already was on the freeway. He adamantly denied this incident, and others.
It took 4 years, and an abrupt change post anesthesia before DH could no longer buy a pass to the next visit by using the "I'm Fine" card.
My husband used to say "I'm fine". He doesn't anymore. He now just says "ask her, I have no idea why I'm here". He has reached a point where he doesn't seem to know which doctor we are going to, even if we discuss it in the car on the way there. Apparently it is all becoming to confusing to him now.
I also feel they just don't remember what they have been confused about or angry about. My husband did the same thing and "I" finally got it!!!He really doesn't remember things from one minute to the next, how was I expecting him to tell the doctor anything from one minute ago to a week ago..It is more about the caregiver remembering that they just don't remember and they can't help it.
My wife M not only doesn't remember what happened a minute ago, she doesn't understand much of the English language any more. When the doctor and I chat about her condition right there in front of her, she sits and stares blankly, not understanding. It's like she is listening to an unknown foreign language. We talk about placing her in a nursing home, medications, hospice and her death and she doesn't even blink. Years ago even the suggestion of such talk would have brought her straight out of her chair with lots to say.