My husband has early onset Alzheimer's, should I discuss it with him?

A fellow caregiver asked...

My husband was diagnosed with early onset Alzheimer's at 58 years. He does not surf the internet nor ask questions about what life will be like as his disease progresses. Is it best not to discuss this with him? I fear the more he knows, the more likely he will become depressed. He is in the early moderate stage, still independent as far as personal care, still drives but only with me in the car with him and is rarely by himself. Physically he is in great shape, can run/jog 10 miles or ride his bike 20-25 miles with a friend. He did all the right things, plenty of exercise, non-smoker, very limited alcohol intake and gets Alzheimer's. Any suggestions on how much to discuss of what the future holds?

Expert Answer

Ron Kauffman is a certified senior advisor (CSA), senior lifestyle radio host, syndicated newspaper columnist, and the author of Caring for a Loved One With Alzheimer's Disease. In addition, Kauffman is also the primary caregiver for his mother, who has Alzheimer's.

I am so sorry to read that your husband has been diagnosed with early onset Alzheimer's disease. I'm sure that has been devastating to you both.

Your question as to how much information should you give your husband about the future course of his disease is difficult. The fact that even though he is able to do so, he has chosen not to seek out additional information on his own, may be an indication of his denial of the disease. I say this because you indicate that he is still quite able to do virtually everything he has always done, at least physically, in the past.

Some good news is that your husband's level of physical fitness may help slow the progression of the symptoms of Alzheimer's disease. Eventually however, just as he had shown the indications of cognitive decline that led you to seek medical assistance that provided the diagnosis, he will begin to lose more of his memory and other aspects of his activities of daily living, and his decline will become more noticeable.

One comment you made tends to concern me more than others, and that is that he, ""¦still drives but only with me in the car with him"¦." That may be one of the first "battles" that you will have to engage in as his perception, reaction times and judgment begin to almost imperceptibly take a toll on his driving abilities. That will lead to issues regarding his safety as driver, yours as a passenger, and that of others on the roads.

That leads me to the direct answer to your question as to how much to tell him about his future as an Alzheimer's patient. Early onset AD patients usually progress fairly rapidly through the stages of the disease. To try to explain this to him, I suggest that you call your husband's neurologist and ask that at the next appointment to have the neurologist take the time to have a serious discussion with your husband. During that discussion it is imperative that you also be in the room at the time of the talk.

The doctor can make some predictions and inform your husband as to what will most likely happen over the course of the disease, but not when the problems will begin to occur. In fact, you, as his caregiver will most likely be the first person to notice any major changes or decline in his memory, skills and abilities. Over time, you will more than likely find yourself having to repeat to your husband what the doctor told him, because he may forget or deny having been told anything like that by the doctor.

In addition to having the doctor help your husband to understand some of the problems he may be facing in the future, I also suggest that you take immediate action to take control of all finances. Begin paying the bills, balancing the checkbook, controlling the credit and debit cards. Become very familiar with any critical financial functions that your husband had been doing previously in which you've had no active participation.

I also suggest that you look at how your husband has structured any investments, how stocks, bonds and bank accounts are legally held, meaning, in whose name are they listed as owner(s) or trustee. Your name must be on everything that he currently has so as the need for you to fully control those accounts arrives, you will have the legal authority to do so.

If you've not already done so, please be sure that your husband and you both have your Advance Directives in place, your wills up to date, and a Power of Attorney named as part of that process.

I'd be less concerned about how much or little your husband wants to know about his illness than about the question of am I, as the spouse and caregiver, fully prepared for every eventuality that may come our way as his disease progresses.

It may be a good idea for you to talk with an elder law attorney, and based on your current and acquired knowledge of your husband's disease, establish an all-encompassing care plan that assures you that there are no loose ends or major surprises ahead for you as his condition inevitably changes.

These are hard facts to accept, but the knowledge that you continue to acquire about your husband's disease and the steps that you must put in place are actually paramount to informing your husband about his condition and future. Over time, he won't recall why he's doing or not doing certain things or why things are happening to him. At that time, you cannot afford the luxury of not having control of every aspect of your life as it relates to his care and your future.

On the brighter side, your husband is still quite active, and it seems as though the two of you are still able to do many of the things that bring joy and fulfillment to your relationship. I strongly suggest that you take each day as it comes and make the best of it. Do the things that the two of you have always done together. Realize that these are the best of times for him and therefore for you as a couple. It may be years until the disease runs its course, so bask in the enjoyment of the moment.

So while the more serious things that I discussed are necessary steps to take, so too is the need to live and share every day of your husband's good health to the fullest. The question cannot be why did a man, my husband, who has taken such good care of himself get Alzheimer's? The question really should be, now that we know what we're dealing with, how much living can we put into our lives while we both still have the time to do so and build fond memories that I can hold onto in the future?

I wish you strength, patience and luck as you travel what will become a very difficult road for both you and your husband.