I have a dilemma. My husband is in the early stages of AD, maybe stage 4. He has several other medical issues also going on. When he goes to see another doc, they are not aware of the AD. We are all well aware of how they can pull it all together at times and seem normal. However when they talk to him about possible treatments, meds, or just what is going on he simply agrees with everything they say but doesn't understand a thing. He is unable to understand that he has dementia because it has struck the part of his brain that allows for insight and reasoning. I try to go with him but he doesn't want me to say anything about AD. Yet he gets agitated with the front reception people because he may not understand what they want him to do. Do I call the office and tell them about the AD ahead of time, give them a note? I don't know what to do. He is a very intimidating man because of his height (6'3"), and very used to getting his way because of his corporate background as Chairman of his company. He has been DX with prostrate cancer, we have another appointment next week to set up another biopsy, I would appreciate any input into this problem. He also doesn't believe he has cancer so it gets a little dicey at times trying to get done what needs to be done. Thanks for any suggestions.
By all means, let the doctor know about the AD and any meds he is taking for it. This is important in deciding on any other meds they may want to order, as well as anesthesia for the biopsy. I would suggest that you call the office well ahead of time and ask if they want a written note. You might also get a card made up saying something like: "My (husband/wife) has Alzheimer's Disease. Please by patient. Thanks, (your name)". I made some up on my computer and printed them on business card stock. You can also get some from the Alzheimer Association. You can then hand the card to anyone dealing with him - office receptionist, waiters, technician doing x-ray, etc.
This reminds me of an appointment of my husband's last year. He started a fight and wouldn't let me go. He went by himself. Later, after he had calmed down, I asked him when he needed more blood work, when he needed to see the doctor again, etc. He told me that I better call the nurse because he didn't remember what the doctor had told him. This was probably 1 to 1/12 years ago. It has never happened again.
We can barely talk about there even being a problem so, obviously, he hasn't been to the doctor about this yet. Denial about 95% ofthe time. Every so often, he will bring up to me that there might be something wrong. I can only listen and I can discuss or he gets mad and quits talking about it. I'm pretty sure that he has Frontal Lobe problems of some kind. I finally figured out what was going on with him about 4 months ago through this site. Thinking back, I'll bet this has been going on for 6 to 8 years, may be even longer. Right now, he is having the problems with being tired all the time. And when he gets tired, everything seems to bother him more.
It will only complicate things further to have his other drs not knowing of the AD dx. they may would alter the plan of treatment if they have knowledge of the diagnosis. some drugs could very well make the AD worse and progress faster. plus if he is on any AD meds they have to know that anyway it could make for certain medical interactions if they arent disclosed. its always a better policy to be upfront and honest with each dr so they can make a diagnosis /treatment plan including ALL his illnesses and medications and work together as a team for his health needs. i would definately call ALL his drs nurses directly and tell them asap before any treatments begin. you can tell them he is unable to comprehend the AD diagnosis and you think its imperative they know upfront. and let them know not to let on you disclosed the info when the dr asks about it next visit. divvi
Call ahead and let them know that he has been diagnosed with AD - you can even refer them to the doctor that did that diagnosis. I found that as I told my husband's various other doctors about the AD they were very helpful in helping me get things set up correctly for him. They also included me or talked to me outside of his appointments with them.
My husband used to go to all of his doctor's appointments by himself. When AD reared its ugly head, I had to go to them with him - that was a very interesting learning experience. It was usually up to me to decide how much to include him in the decision process.
There are a lot of tight ropes to walk with this disease starting with letting them do as much as they can for as long as they can, respecting their rights to make appropriate decsisons as long as they can and treating them as the adults they are for throughtout. There were times I failed at all of those. You never know what the disease will throw to you on any given day.
Denial is a big part of the disease, they truly don't see that they have changed. There are several threads that talk about this.
My husband was a take charge kind of person who had 160 people working for him. He was used to giving orders and having them followed. I often used the team approach with him and going to doctors and working through the curve balls that we got. This worked very well with him many times.
Thanks for your comments and suggestions. He won't take any meds for AD, (after all he doesn't have any disease so why take a drug for it) so I knew that a history of Aricept wouldn't tip the new docs off.
divvi, that is what I was worried about, that they would say something to him that I told them. He would be furious with me. I guess I will just have to trust they will remember to keep mum about how they found out. This is very tricky navigating all the things that need to be done and still maintain sanity.
therrja, sometimes it feels like the rope is getting thinner with less room to maneuver. The frustrating part is he isn't in denial, his neuro explained to me he truly doesn't know he has the disease, it's not denial. At first I was so frustrated because I thought it was denial. He has no insight or reasoning ability. This disease hits different parts of the brain at different times in different people, unfortunately for my husband it hit the insight reasoning section first.
be SURE to specify to the nurses that your DH is in 'denial' and or his judgement is lacking at this point and you know he could become aggressive to you if he found out, that you want the dr to NOT divulge where he gained the info. if the dr is clever he will come up with a way of bringing it out without you being implied. and i would repeat it to the nurse before entering the room at appt time! divvi
I didn'y realize just bad my DH with FTD was. He insisted on going alone for a pre-op work up. He was still driving better than I do. His regular doctor called me to find out what was going on. My DH went into a full blown rage when some poor soul showed him where to sign a paper (he didn't need to be told). Admitting told our family doc that they had never seen a person as nasty as DH. Said they felt sorry for the wife (so did I).
This is a job for your family doctor. He needs to be the clearance center for all the other doctors. He needs to tell the neurologist about the cardiologist, and the oncologist, and any other doctors your husband goes to. And the cardiologist and oncologist need to know about each other and the neurologist. He needs to share diagnoses all around.
Frankly, your husband may not be a candidate for any kind of surgery, but if he is, it will be because the various doctors know about each other.
So we're back around to the question of surgery. ASY, prepare yourself: look up the connections between AZ and surgery. Many people come out MUCH WORSE mentally than they went in. I don't know how old your husband is - ask the doctor if any problems will be slow developing.
Starling, Ideally that would be the case; his internist would co ordinate it all. However that just doesn't happen here . Just getting records all transferred is a challenge and all his physicians are in the same health complex. He is a great internist, we are at a major health institution but they don't all share everything. All of the docs are here at the same institution however some of the information doesn't get where it needs to be. You are right he may not be a candidate for any kind of Tx. I know also anesthesia is not a good mix with AZ. I am just trying to hold things together here, I am confronted with a situation that is a flash point with my husband. He wants nothing said to anyone because he doesn't see the problem. I am beginning to think his neurologist is not holding up his end by disseminating the information. He tends to be very reserved and just listens to what my husband tells him. I don't know the stress of all the health issues and a neurologist who doesn't really seem to want to grasp the situation. Maybe time for a new neurologist. This one put DX as early (mild AZ0 stage on his report last month and this week reverted back to a MCI Dx and had my husbands age one year younger. Yikes I am at my wits end.