Dear Family Advisor

My Husband Has Early-Onset Dementia, and He's Refusing to Deal With It.

Last updated:

September 20, 2011
foggy morning

We're both devastated by my husband's recent dementia diagnosis -- he's only 59, and all our retirement plans just went up in smoke. I feel like I'm grieving for my husband and for our life together. On top of that, he doesn't want me to tell a soul. He expects life to go on "as is" and says we'll just deal with whatever comes our way.

That sounds gallant, I know, but I'm the one who will be expected to make the excuses, cover up odd behavior, handle his work e-mails and other paperwork, run the house, and hand him his medications, as well as manage our medical and financial issues -- all of which I already do. How did I get myself into this? He's fine with me doing the lion's share of the work, and meanwhile I have to put up with his hard-headedness. I certainly didn't get this kind of support or watch him completely alter his life when I went through two bouts of breast cancer.

So far, caregiving stinks! Is this all I have to look forward to?

It's not unusual that, as a wife, you're expected to just "deal with it" on the family/caregiving front. But just because it's expected doesn't make it right!

You feel resentful about managing it all while having to keep mum and not receive the family support and understanding you need and deserve. Perhaps you feel hurt and resentful that you didn't get the support you felt you needed when you had cancer. For your own sake, I hope you find a way to express that hurt and find a certain amount of healing and closure before you move forward.

Now, as to that moving forward: First, make a list of all that you feel you're giving up. Write it all down -- from the vacations you thought you'd have to the way you thought daily life would be. List all the things you were looking forward to, straight down the page, and number them. Feel these losses. Grieve them. Get mad at the disease.

In a few days' time, revisit the list. This time, write an alternative beside each loss. Is it really true that you can't take a trip to the beach -- he's probably still in the mild stage of the disease, and don't other people with dementia travel? Could you be the driver instead of him? In other words, see if there's a way to still do many of the items on your list, with slight alterations.

Life isn't over for you or for him. And just because he has dementia doesn't mean you do. It isn't cold or mean-spirited for you to go on with some of the plans and goals you have for yourself. In fact, you need to. If you don't, the resentment will overtake you. It's good for you and for your marriage to have different interests and do different things. It even makes you a better caregiver.

You really can't try to constantly please your husband. Trying to make someone else happy -- especially someone with dementia -- is all but impossible, and it's not good for you, either. He has a disease that alters his cognitive abilities, and he's undoubtedly frustrated and disappointed with what's happened. You can comfort him, care for him, find ways to connect and still enjoy life, but sometimes none of this will work, and it's healthy to mentally and even physically separate yourself from your spouse, at least a little. If he were his best self -- physically, emotionally, and mentally -- wouldn't he want you to continue to have a full and meaningful life? That's what love wants. Even if he isn't that type of person, you need to love yourself enough to want it for yourself.

At some point you'll need to tell people. Decide when and how is best for you, your husband, and the person you're telling. Being a caregiver means taking in the big picture and doing what's best for everyone. When you come to that crossroad, take a deep breath and do what you truly feel in your heart is the right thing to do. Don't argue about it or defend yourself. You need support, and you don't need to live a life of avoidance and secrets. Surround yourself with helpful family and friends. Reach out to other caregivers so you realize you're not alone. Ask questions. Get advice. Go online and learn about the disease and how to tackle caregiving issues.

And do something other than caregiving -- dust off an old dream and take real steps toward building a life you feel really good about. Start small: Go to the website of a subject or hobby you love and join an online group, or order a book about it. Consider going to a meeting just once a month. It's easy to believe that caregiving takes all of your time -- and it most certainly can -- but carving out just a small amount of time for yourself can make a huge difference in how you feel about your life.