Today I went with DH for his physical. He wanted me to fill out the history so I did with my observations. So DH denies shortness of breath except when he exercises which is never. He gets short of breath going from the table to the kitchen sink. Then comes the review of meds..doc asks if he understands why he is on Exelon and Namenda. No not really, so it is then explained that it is for memory issues, that it is used for AD. To which DH says he has the usual age related memory hiccups but not dementia. No sir.
At present he is not argumentative about this but I know he thinks it is nuts and that I am nuts.
How has anyone managed this with a pt who is in denial ( I know he doesn't understand or remember the DX ) when you are with him/her at the doctor's? Any tips would be welcome.
Mimi, this is the point you take over his doctor's appointments...by this I mean you send or fax your observations to the doctor before the appointment and remind the nurse that you want the doctor to see your report before he sees your husband. This way you don't have to point out troublesome issues in front of your husband.
My position in the denial of the disease...who cares....if it brings him some comfort to believe he is okay...why not let him think whatever he wants.
That's what I do. I found a great MD with a great Staff. I went in there one day and explained the situation to the Nurse.I talked of his denial and cofabulation, and asked what to do. She suggested I call ahead and dictate a list of issues as I see them and they put it in the chart. Then my husband goes in alone. The MD listens to my AD spouse, and listens really well and with great sensitivity. He also privately reads my input. With both sets of input he's really good at finding the problem, making my husband happy, and addressing the problems that I see. If I have more questions I can call back. It seems to be working very well for us.
I do exactly what MsAbby and Sandi do. It used to make me upset when my husband denied any memory issues (he has FTD, they believe). I now believe it's okay if he doesn't believe it. Why make him upset every time we go to the doctor? I type up my report of how he had been in the previous 3 months or call the doctor and tell her. She's great about this. If I'm going to write a report, I prefer to give it to the person at the front desk and she puts it in his chart for the doctor to read. I'm afraid to fax it, fearing that it won't get to the doctor. But, there are times when he asks what his pills are for, then I tell him. He forgets all about it in a short time though.
Denial is a perfectly legitimate way for some people to get thru some things. Nothing worthwhile will be achieved if your LO says, 'Oh, now I understand. I have AD and I'm going to revert back to infancy.' He won't remember anything any better and, from my point of view, it's kinder if they forget what's happening. I always told DH that meds, etc were because he was having problems w/his memory & the doc was helping him with that. It was the truth and he felt something was being done to help him. And, yes, I also spoke to the doc sometimes on my own. It is a kindness to let him think you're nuts, that it's normal aging and the doc doesn't have to explain any more than that. It'll be OK, really.
I have done the present the doctor with a list of concerns at our last visit with the neuro. He had it in his hand and said " What's this? Are we keeping secrets?" I said no, I had this list of concerns I wanted to cover in this visit and last time I had a list but we didn't get to all the issues and if there is one more significant to you I want you to address it but at the same time know the other issues of concern and interest. He said fine..
Then today at the PCP this doctor gently asked how DH memory is and he said it is just fine..no problem. Then he asked if he knew what the meds Exelon and Namenda were for and DH said no some doctor thinks I need to be on it. So the doc gently explained it's use, that he needs to let me set up his med box and so forth. He was amenable to this.
It is funny how some doctors will work behind the scene with you as you all have suggested and others don't like that..they feel everything should be open and up front and in the open.
DH did give the PCP today the ok to discuss anything concerning his health with me..that is one issue out of the way. Next week the doctor told us he wants to discuss issues that we need to be concerned with when there is memory impairment. I think he is going to hit on the importance of POA and that sort of thing. I did stop into see him last week and while he would not discuss the health issues he said he would have us both in to discuss these other concerns.
I have made the cardiologist, pulmonologist and the endocrinologist aware of his condition and they already knew...
well I'm about to hear an explosion,someone from the area commission on ageing is going to be coming for an evaluation of LO an she isn't expecting it,she doesn't think she has any problems its all me an the people that come into the house an hide her purse an steal her money,this is going to be quite exciteing I would imagine,she claims the house is full of people most of the day,hides her purse all day long,can't remember the day of the week,or the month most times,I hope they ask her enough questions to really find out how bad she is,anyone else gone thru this?
I'll be eager to hear how it goes, 'ol don', during some of my searchings for facilities and even with the short duration of Home Instead, they were going to 'send someone out to evaluate DH". I warned against it because I can only imagine explosions here too. DH has NEVER agreed that anything wrong. Period. As mentioned previously about getting the dr. to help... we also finally have a dr. who encourages me to e-mail all concerns and progress reports before the appointments. It has been an enormous relief. Before that, I'd write a note and bring it along..try to slip it to the dr's nurse or the dr. and at some point during the office visit, the dr. would attempt to communicate with me while being careful to avoid speaking directly about the issues. It was difficult and DH was suspicious anyway. NOW, thanks to e-mail..things have been much easier. For a long time I was so frustrated that DH wouldn't work WITH US or HELP US by cooperatinggg..I finally realized that because he lacks awareness of whats actually going on, it is probably a blessing. We don't talk about it.. We just work around behind the scenes and do the best we can for him.
I sometimes think that it depends on how the disease affects them. It sounds like some have an idea that they have memory problems and others (like my DH) didn't see that they were any different. I did create lists when I felt it was necessary, sometimes I talked about what I was seeing in front of him. One of the things I saw as he progressed was that unless you made sure you had his attention, he was not following conversations and even if you got his attention, he did not always follow what was going on. His children were at one appointment with us (the doctor liked to get the whole family involved if she could). It was awful. They walked out of that appointment thinking that things were going to be totally different from what he had been adamant about all along. I didn't realize it at the time, but he could no longer stand up for and speak for himself in a group of people. I was so shocked as I realized it during the appointment that I didn't handle that appointment well at all.
My children came with us to the first two appts. It was good they did because the testing showed what we suspected all along. But, they haven't been able to join us for the last few appts. so didn't see the way he acted with the doctors. I wish they had because it would have given them new insight as to how he acts with me at home. When he's with the family lately, he has been very good, interacting well with everyone, but, every so often, if I'm not walking on eggshells that day, he goes into a stage of shouting, which they have never seen. He was extremely angry with the doctors, asking them why he even had to see them. "Everything is okay with me," he said. But, for the most part, I've been able to "turn the other cheek," so to speak, and not let things escalate, which, I find, is very difficult to do. Sometimes I feel the way Joan says she feels in her Thursday blog.
My DH has never ask what is wrong with me. We have never discussed Alz. He never liked to talk about anyone being sick. At the doctors' he sits smiling while we discuss problems that we are having. He can not follow the conversation and when we leave he comments on how good Dr. _______ is. We have come to a new stage and even I know it is downward but he is so much easier to handle. No more constant mumbling, questions over and over, getting me up and down all night and he has made peace with the man in the mirror. He is even napping in the daytime which he never did before. I had been checking out NHs' but I can handle this stage. Home Health Care is coming to bathe him twice a week and he does give them some problems but nothing they can't handle. I just have a Baby Ruth ready and he gets over being mad. I am now having 5 hours out on Tuesdays to run errands which is very much appreciated. Just maybe I can find me when this journey is over, I am 82 now and I wonder who I will be when I grow up. LOL
Bama, my sister who had the stroke and surgery to follow in February keeps saying that when she grows up she is going to live to be an old lady!! (she just turned 71).
Just keep thinking young and that you haven't grown up yet! :-)
Oh, yeah, Bettyhere...I'm going to get some pom poms, learn to shoot pool, get out the poodle skirt and bobby socks, and I may get a tattoo. And yes, ol don, I am going to yell Roll Tide (that I never stopped)
Bama, I ran into an old friend at the hardware store today. We hadn't seen each other for a good 10-12 years. She was a doctor, but I knew her through Brown; I was never her patient. But the instant I called her name, and re-introduced myself, she said, you know I was thinking about you the other day and wondered how you were.. and we talked about old friends etc and agreed to lunch, etc. She was buying some new lawn furniture, but didn't want to have to tote them home herself. She's 90, a lifelong single career woman, and obviously looking to the future!
Bama....get your tattoo. I did. Finally. I've always admonished our kids for marring their beautiful bodies with stuff they'll later regret, but at 55 I decided on what I wanted. A "badge" of sorts, in my mind. It's a blue white diamond surrounded by whisps of fire. Symbolic. A gem forged from heat and pressure! I'm surprised that it wasn't something "horsey". No one but my mother has ever seen it!! I actually fell asleep on the table while the guy was working on it! Two hours! DO IT! We're old enough to do what we want, now!! I might even take up playing pool again ( I used to earn some cash doing that when in school! ).
I know in the earlier years, Foster heard the diagnosis, but he never wanted to talk about it. I couldn't think of a single reason why I had to keep reminding him "YOU HAVE ALZHEIMER"S DISEASE". I'm sure - when he could remember, he knew. 'nuff said. Again, I see no reason to pound this into their heads. When asked what specific pills were for, I'd say, "to help you remember better". That would suffice. My goal was to do all I could to allow him to maintain his dignity and pride, which sustained him.