My husband sees our doctor tomorrow (actually today) for his annual physical exam. He has shown increasing signs of Alzheimers/Dementia for several years, but always passes the test. I have discussed my husbands recent declines with the doctor, and I am pretty sure he will diagnose him today. How do I break the news to my husband. He is already very apprehensive, although he has no idea that the doctor and I have been discussing this subject. I don't want to alarm him. Any advice would be very appreciated.
Charlee46, chances are the news from the doctor may be harder on you than him just because you have the bigger picture as to what may be coming. When my husband was diagnosed I did not really spend time trying to,explain to him what it meant. I believe he knew it was terminal altho neither one of us could predict the enormous toll it would take on each of us. Even now that he has passed,I can hardly explain even to myself what had transpired. I just tried to keep life as normal as possible. As it progresses, both of you will need to adjust to the new normal and you will. Looking back in the beginning I spent a lot of,time educating myself on the disease. We were in an early stage support group together for 3 years which was really good. They treated him as "normal." In the beginning I saw a financial advisor who,helped me prepare for what was to come, which was a god send. I feel one of the best things I did was do the financial planning and paperwork POA etc early on while he was still functioning. I did not discuss any of this in great detail with him. I would keep big things in generalities when discussing things. That seemed to work. When he stopped driving I did not "discuss" this very much. After all what is to discuss. We think,that by discussing they will go along and agree with our assessment. That is rarely the case. I know in my situation if they are aware as my husband was until the very end, it,is very difficult making decisions for another person because with each decision you are taking away more and more of their life and adding more responsibility to,the caregiver. When he stopped driving was really when I started feeling the weight of the disease. I think by just taking each day as it comes you will keep his fears and apprehension to a minimum. Also check with your alz assoc and see if they offer an early stage group. It helped us a lot. God bless.
You have given great adivice on this subject. As you say, discussing this with them is not going to be helpful. My guy will storm if he isn't kept up to date but still denies that there is anything wrong. I didn't tell him the DX, the Doctor did. I don't talk about it anymore just suggest he talk to his Nurse or Doctor. He usually forget to ask when he sees them.
My husband's doctor gave him the diagnosis, not me. And in a way, I believe it was a relief for my DH to finally be told what was wrong with him - he knew something was wrong, and now he could put a name on it. And because of that relief, he actually began to enjoy life again, for awhile.
Like CO2*, I immediately began to educate myself on the disease and its ramifications, and started taking steps to protect myself financially while my DH could still agree to those decisions that needed to be made. You are already one step ahead, because you have found this website.
And as the disease progressed, I asked the doctor or some other health care professional, not me, to give him all the bad news related to the disease - stopping driving, not being able to do outside chores, not being able to go to the basement, using a walker. That way, I could remain the loving care giver, and not have to shoulder the blame for any decision that shrank his world further.
I can't really add to what everyone said so well above. Our experience when the neurologist told Larry that all signs indicated he had Alzheimers was: Larry said "It's a death sentence." But he said it in a really calm way, like he wasn't really processing it--he had lost a lot of insight and awareness. And then he forgot all about it--he thought he was just fine, until the day he slipped into a coma and died. (I had realized for a long time that he was slipping into a dementia...all the classic Alzheimers symptoms were there...the MD was just confirming what I already knew.)
It sounds like the one who will be breaking the news will be the doctor, since you won't know about the diagnosis until after the doctor administers the test. Kindness and tact go a long way in such situations. It's good that you are dealing with your husband's regular doctor, who might soften the blow with some encouraging words about the available meds (which are useful in that they provide false hope) or clinical trials, etc.
As far as helping your husband deal with the diagnosis in general, from that point on, I tried to act as calm, confident, and positive as humanly possible (the exact opposite of my normal personality and of what I was actually feeling) so as not to alarm him. I hid my fear and assured him that we would get through this, that I had a handle on everything, blah, blah, blah.
Many people on this site have said that the day they admitted their spouses to LTC was the worst day of their life. Not so for me. In fact, not even close. The worst day of my life was the day my husband was diagnosed.
I wish you both good luck with getting through this day.
Charlee....I can tell you how it was for me and my Helen. ' After the first signs of dementia, (April 2008) our primary care Dr. ordered a brain scan and said it was vascular dementia. No doubt about it. At that time neither Helen nor I knew what vascular dementia was, so it made little difference to her. He started her on Aricept.
We never saw any other Dr. or specialist. In fact over the eight years till my Dear Helen passed, we only saw the Dr. twice. Helen didn't like him..... Before the dementia, she would give him a hug every time she saw him and say "Have you hugged your Doctor today?"
I kept the doctor informed of her condition by sending him little notes, and after I found this website and all the support here, I would ask for the medications I thought best and he always complied with the prescriptions.
I guess it was a blessing that at the time she was diagnosed, she was so far into the disease, that knowing she had it made no difference. From the information that I picked up on this site, I thought it best to stay as far away from doctors and specialists as possible.
My husband was not surprised with the diagnosis. He has never hesitated to tell people although I notice he now tells people he has memory problems, not Alzheimer's. He thinks he knows the future but all he knows is it is terminal. Looking back maybe it was good that he was not near to watch his dad and sister go through the disease (3,200 miles away), so he really does not know the dirty part. Although he does know his dad was in diapers. He does not know how psychotic his sister got the 6 months before she died. I spared him the ugly details. He does know it puts a lot of stress on the spouse since his mom literally killed herself taking care of his dad (she refused help and died of a sudden heart attack).
Think twice if the doctor wants to put him on Aricept or galantamine. The support group I have started going to - the facilitator drives me crazy cause he tells people they need to get their loved one on the drugs to slow the disease down. None of the drugs have proven to slow it down. IF they work, which according to some is only 30%, it will allow them to remain cognitively functioning longer while the disease rages on. My husband was on galantamine for 7 years, then I took him off June 1. I have not seen any big difference. The losses I am seeing were going on before I took him off. I know his neurologist will not be happy when she find out, but I have until February to face that!
Dear charlotte, Thank you so much for sharing your experience with me. My husbands' doctor tested him today and he passed it (29 out of 30 correct). The doctor then went on to tell him that he didn't think he had either Alzheimers or dementia, but was suffering occasional "brain fog" and prescribed generic Aricept. I know the doctor was breaking it to my husband very gently so as not to alarm him. For that, I was extremely grateful.
As for the Aricept, I have read several posts discouraging it's use. However, I am going to give it to him anyway, because, even if it doesn't work (and I do have my doubts), it's always possible that my husband could be one of the 30% that it helps. I guess I am grasping at straws, but I will try anything if I think it will help even for just a little while.
Again, thank you so much for your caring and thoughtful insight.
If you read many of Joan's post you will see how her husband aced the MMSE test yet couldn't remember what he just did. It all depends on the area of the brain being affected and how they were before. We all know our spouses can appear normal for a while out in public,then when they get home we experience reality.
Has he been tested for other causes? There are so many that are treatable. Occasional 'brain fog' could have other causes. He needs a neuropsych workup which can be 4 hours to 3 days of testing, plus CT and MRI or PET (most insurance won't pay for it) to see more of what is going on.
On the Aricept - if you can afford it and he doesn't have bad side effects, then won't hurt to try it.
I have read some of Joans' posts, and much of it is so typical of my husbands' symptoms.
His doctor has already done tests that did not rule out Alzheimers. He did recommend an MRI some time in the future depending on how his symptoms increase. VA should cover most costs of the Aricept, but, as you say, MRI probably won't be covered by Medicare.
The VA did cover my husband having an MRI. We were in Pahrump, NV when we got the diagnosis. Went into Vegas for the MRI. The neurologist they had there with the VA knew very little about dementia so we came back to Vancouver where there is a dementia clinic in the Portland VA. We live 250 miles away but still have to go to Portland for the neurologist. All his medication cost us an $8 copay for 30 days, so since the VA sends 90 days at a time, that is $24. We have never used his Medicare - can't afford the deductibles so stick with the VA even though where we are now they are not the best.
My DH was one of the 30% that Aricept actually helped - he actually showed some improvement for at least 6 months, and no deterioration for a year.
I put very little faith in the memory test - his most recent test in February was 24/30. But overall, cognitively, he could have been placed in a home at that time. I finally had him placed in June.
So glad to get your experience with Aricept. My son is a pharmacist and he also says it can help some. Even if it doesn't, it can't hurt to try.
I am also a little skeptical about the memory test. I think the real test is his everyday life at home. There is where it really shows. I began seeing signs years ago, but was afraid to face the reality. Told myself it was just normal aging. That was about 8 years ago, and as it gradually worsened, I finally accepted that it was A/D, no doubt about it.
I am so sorry you had to place your husband in a home. I know it's only a matter of time before I have to come to that place, too.
After the diagnosis my wife would ask me, almost every night, what was wrong with her. I always told her the truth, but she didn't remember. As for telling others, we didn't hide it, but told others mainly on a need to know basis.
As for Aricept, all it did for her was make her vomit for the only time in the 70 years I knew her. The other drugs - exelon and namenda - didn't cause vomiting, but didn't change anything in her condition.
She saw a neurologist only for confirming the diagnosis. Then was followed entirely by her PCP.
Thanks for sharing with me. My husband only started Aricept last night. Half dose for three weeks, then full dose if no problems. I guess time will tell.
Be aware Aricept, Galantamine, Exelon causes them to produce more stomach acid and often diarrhea. My SIL could not tolerate the pills but did the Exelon patch but I don't think it helped. My FIL was not on anything until after my MIL died in 2001 and was placed at the VA facility where they put him on namenda - but he was further along by then but did last another 9 years. My husband was on galantamine (that is all the VA here covered) from 2008 until I took him off it in June to see if it was helping. If I had seen evidence I would have restarted it, but i didn't.
The neurologist who my husband saw made a snap diagnosis of FTD and declined to prescribe Aricept on the ground that it would not help that condition. It soon became clear that this diagnosis was not correct. After about a year, all of a sudden the neurologist decided to prescribe Aricept and when I questioned it on the basis of his earlier statement, he hemmed and hawed. I think he realized by that time that he had made a misdiagnosis but did not want to admit his mistake. I decided not to take my husband to him again and to just stay with the PCP, who continued to prescribe the drugs. After about 6 months, having read more about them, I asked the PCP if we should stop them and she agreed. I did not see any difference. I should have done what marsh did - use the neurologist only to confirm the diagnosis.
My hb only goes to the neurologist because the VA requires it. Weird I know. I have only met his PA here in Richland once but he said he was comfortable treating dementia. As he progresses we will see. I wish I could get a reasonably priced Medicare supplement that did not require big deductibles, but none are available in this area. :-(
charlee - if you ever want to email chat my address is in my profile.
charlee46, I don't think you are overreacting. I read all of Joan's early blogs when I was searching for answers, and it helped me understand that there was a problem, that it wasn't me, and that I needed to step up to the plate, so to speak. My husband's primary care doctor has been no help at all, most recently telling my husband "Don't believe what she tells you; you're fine." But, since that doctor and I have never seemed to be on the same page, I have never confided in him what I see at home, so how would he know? I think you will have shocks ahead when you suddenly realize that your husband is not capable in an area where you assumed him to be. You will need to take responsibility alone for things that were shared. Once I accepted that things had changed and that I had to be the one to adapt and when I stopped putting pressure on my husband to be what he no longer could, our relationship got better fast. Good Luck.