My husband has early-onset dementia, and he's refusing to deal with it.

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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.

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7 Comments So Far. Add Your Wisdom.

Anonymous said 7 months ago

Umm....wherever I go I see the same advice. Take care of yourself. Yeh - sure. With what energy that's left? What energy? Find/accept help. Right. Been there, tried that. What help? Talk to family friends. yeh -sure. They are more in denial than he is! One blogger said words to the effect "Don't expect family and friends to be lining up at the door to help, cos they won't. More likely they will run a mile." 'Tis true. I don't even get replies to e-mails. The only question is..... who is this going to kill first? Him or me? Anyone want to bet? LOL. He's not even 60 yet .


7 months ago

My mother was in her early 60's when she was diagnosed with early on set Alzheimer's. Dad had already retired and they were traveling quite a bit. They continued to travel for several years until it was just too confusing for mom to be away from home. We encouraged dad to continue taking trips, but he always felt guilty leaving her with us. He missed her and wanted her with him. The Alzheimer's patiet usually gets VERY dependent on the main caregiver and is upset when they are not around. Mom forgot they were married and refused to sleep in the same bed with him since she did not want the neighbors to think she was "living in sin", but she still missed him when he was away. Caregivers need a break so they can complete this long journey.


8 months ago

I have been going through the same thing with Jimmy, and trying to "suck it up" and now I realize that I do not have to do that anymore, and I have started going to school online which is something I have wanted to do for six years.


8 months ago

Without a doubt, being a caregiver is one of the most heartfelt jobs in the world. We are beginning to see more statistics on the emotional and financial impact of being a caregiver; it is very important to not let your health slip as a caregiver. Your sense of well-being is more important than ever, so take the time to engage in a support or community group to learn more about dementia or condition specific topics to prepare for what is around the corner. Caregivers often become subject matter experts at the expense of their own health, so block off time for yourself. Helpguide.org is another helpful resource for caregivers. http://helpguide.org/elder/caring_for_caregivers.htm Steven East, CEO and President Caring People Home Healthcare Agency Servicing New York, New Jersey and Florida http://www.caringpeopleinc.com


8 months ago

I'm also an RN but retiring due to overwhelming healthcare challenges, my own!!! Sure wish those around me would take me for small walks (I'm bedbound but can transfer to my wheelchair) just even 15 minutes outside. I know it's hard given we have to take my oxygen too & positioning me just right takes some effort. I do forget a lot so each little trip seems like a new adventure to me. God made me a wonderfully loving, caring nurse. Why can't those around me do that for just the few minutes a day??

Hugs Barefoot


Anonymous said 8 months ago

There's a lot of wise advice in this article. My long-time dream was to visit Norway. Each year as I saw my husband's memory deteriorating I wondered if we'd ever make the trip. We finally had the finances this year and spent 3 weeks in that beautiful country. My husband enjoys being with me, whatever we're doing, and he did great on the trip. I had to constantly answer his "where are we?" question and he had no recollection of the trip by the time we were on the plane heading home. I've made photo books from the trip and he looks through them frequently. My worst fears about how he would act on the trip were never realized. I had fore-warned the people we'd be visiting about hubby's memory issues, and they were all very understanding.


8 months ago

As a nurse, I often see Caregivers who do not take time to take care of themselves. It is always my advice that you have to remember to take time to take care of you. After all, if you don't take care of you, how do you expect to be able to take care of someone else?


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