Dad is devastated after his Alzheimer's diagnosis. How can the family help?


Q: My father was just diagnosed with Alzheimer's. He's devastated. What can we as a family do to help?

A: Alzheimer's is indeed a devastating diagnosis for anyone to deal with. Much fear is associated with it, as there is, unfortunately no cure as yet. You can encourage your father to talk about how it feels among your family members. You can offer to accompany him to an Alzheimer's support group. You can offer your reassurance to him that you'll be with him on this journey in his life, and that you will see to it that he is safe.

I suggest that you encourage him to update all legal documents he needs and make them available to the family, for his peace of mind and yours. It can also be helpful for everyone in the family to educate yourselves about Alzheimer's disease, using your local community resources and the Alzheimer's Association, which is a very good source of information for all of you.

Finally, it is wise to spend as much time together as you can, enjoying the things that your father and your family like to do. The stages of Alzheimer's disease will cause a progressive loss of memory. It is important for the family to enjoy the moment, and to have as many positive experiences as you can with your father for as long as he is able to participate. Even if he forgets what happened a short time later, one needs to practice living for right now when you are with him. Remember that now is the time to plan for the future needs of your father with your family, don't wait for a medical crisis.

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It sounds crude, but does he have a "Bucket List"? Joining him in activities he has always wanted to do will offer him and you the opportunity to fulfill emotional needs that are often left unsaid or recognized. If he has the opportunity to be helpful to others, spend time with those he loves, and has loving support from family he is a lucky man. Sometimes just being there with someone if they're not ready to express themself is a gift, and may ease the hurt so he can speak about it.
I can only say: better the devil you know than the devil you do not know! By that I mean that it would be cruel to withhold a diagnosis of Alzheimer's from the person who has the disease. Yes, it will be upsetting but you can assure the person (parent, sibling, spouse, whomever) that you will always be there to help. My POA sister's orders were that our mother must never know about her Alzheimer's diagnosis. Well - I did research and asked specialists and not one person said that it is better to withhold the diagnosis. When Mother said she was "off her head," it reassured her to know she had a disease. (Yes - I defied my sister's orders and it almost led to the destruction of our relationship but I know I did the right thing!)
I know how hard this is. My grandmother had Alzheimer's and Parkinson's and I cared for her. There have been other cases of it in my family and now a friend in her 50's has early onset Alzheimer's.

Remember, nothing is going to happen today, tommorrow or even the day after. This is a progressive disease. Of course Dad is scared and upset but reassure him that it is not going to be an overnight process.

Try to handle the legalities first. While he still has most of his mind intact, Dad needs to make tough decisions. Remind him that his wishes will be carried out if he makes them known now but that later on, he would not be deemed competent. It can be a relief to just get it all out there. This means he needs to make a final will, choose someone to give a durable power of attorney and medical power of attorney to and get all of his affairs in order. I would suggest to that he sell his car now so that there will not be an issue of him trying to get in it and drive.

In my case with my grandmother, I had her move in with me. He should make the decision, along with your mom, about where they will live. If you have all of these plans in place , it will go much easier.

Now is the time to make memories. What things do Mom and Dad enjoy? They need to do them NOW. My grandmother, for example, loved opera, symphony, travel, and art so we saw a lot of opera, visited the symphony and museums, and traveled to Europe. Take lots of photos now. Before my dad died, I "interviewed" him on tape for months letting him talk about childhood memories, his family, his time in the military in WW 2, funny stories, his good times with mom, my childhood, etc. I learned a lot of stuff I never knew!

Spend a LOT of time with him and not just now. As it gets worse, it is hard to watch and while he might not seem to know you, there can be a sudden recognition triggered by something. Remember, you are in the world because of your parents. You will never regret the time spent with them. Offer mom emotional support.
Cry, talk with your other family members, come here and talk- you need to take care of yourselves. My heart is with your family.