By: Darrelle M. Volwiler, Ph.D.
I don’t know about you, but when I said my wedding vows, I didn’t really understand what I meant when I repeated “in sickness and in health”. What I really meant was, “I intend for both of us to stay perfectly healthy until we peacefully die in our sleep simultaneously”. Okay – I suppose I expected the occasional cold or flu – maybe an infected tooth or some unexplained pain that everyone experiences with age. But, who expects Alzheimer’s or any other form of dementia when they are basking in the glow of their wedding day?
So far, I have been fortunate and my husband is healthy. In my work as a Psychologist, however, I have seen hundreds of women and men who have been and are experiencing being married to a person who develops dementia. These caregivers I have worked with may sound a lot like you.
Your spouse was once a perfectly healthy, functioning person, who you depended on to perform certain duties within your marital relationship. These duties included but were not limited to household chores, helping to raise children, managing finances, providing emotional support and being your best friend. When you married, your expectation was that you would share these responsibilities throughout your life and you would walk side by side, taking care of each other.
Guess what? For many of you, it didn’t work out that way. So, as a married person, you are now faced with a spouse who is changing and becoming more and more dependent on you. So what are the issues that you may be facing in your marriage as your spouse progresses with dementia? The following are some common things that happen in a marriage and what you may be able to do to cope.
¨A change in roles –
If you are like me, there are certain things that have become my husband’s responsibility, and I haven’t had to do them for many years. For instance, it is his job to take out the trash on Tuesdays. It’s not like I don’t know how to take out the trash, but if he suddenly stopped remembering to do it, it would be one more thing I would have to remember. Most couples divide up responsibilities in some fashion, and we grow accustomed to only handling so many tasks. With dementia, your spouse will not only forget to do the task, but will also get to a point where they are no longer able to complete these tasks. You were once partners in your marriage, and with dementia, you gradually become more like a parent to your own spouse. These changes in roles can leave you feeling overwhelmed, burdened, angry and frustrated.
¨Physical and emotional intimacy-
Losing your spouse to dementia is often a slow, emotionally painful process. One reason we choose a partner in life is to have a best friend with whom we can share our deepest thoughts. In addition, as human beings we have physical needs including both sexual and non-sexual. When I am having a difficult day, a long hug from my husband can make everything seem okay again. When your spouse has dementia, they may have a decrease in desire for any physical contact or they may be very inappropriate with their physical and sexual demands. This creates a huge change in the dynamic of your relationship and can cause uncomfortable feelings such as guilt, grief, anxiety and depressed mood.
We all realize when we get married that we may lose our spouse at some point in our life together. However, we expect it to be late in life, and we generally don’t expect dementia. Therefore, when it happens, a grief process occurs which often includes denial that your spouse is ill. Denial is a natural reaction to this terrible disease, however, it can cause a lot of problems. If you deny that there is a problem, your spouse may suffer by not getting appropriate treatments and you suffer by postponing getting help and support from others. There are other stages of grief including anger, guilt, physical symptoms and acceptance – although each person grieves differently. And yes, this is a real grief process, because the Alzheimer’s is gradually taking your spouse’s life – and as they change you are losing the person you married so many years ago. You grow to expect certain behaviors and personality traits from your spouse and these things change as the dementia progresses.
So What Do I Do?
These days there are so many places to get help in dealing with your spouse having dementia. I am not going to list resources here, because you can call the Alzheimer’s Association anytime you like to get the resources you need. I would like to mention a few strategies to help you cope with the changes in your marriage.
¨Be prepared for the role reversal
Although emotionally we can never be totally prepared, do what you can to get financial and legal documents in order as soon as you know there is a problem. Talking to an elder law attorney is one quick way of getting things in order.
Regarding intimacy, expect your feelings and needs to change as your spouse changes. Continue giving physical affection as much as possible, but realize that your sexual relationship will be different.
Don’t be afraid to ask family, friends and professionals for help with getting everything done at home. It is best for your spouse if you are not overburdened because you will be more patient and emotionally present.
¨Address denial and take care of yourself
Ask friends and family to give you feedback if they think you are avoiding dealing with things. Let them help you by providing emotional support and physical help with tasks. Communication with family really is key. If you don’t, you may slow down your own grieving process as well as that of the rest of the family.
Do your best to keep a daily routine that includes time for exercise and something you enjoy. Too often, I see depressed caregivers in my office who haven’t done anything fun for years and have given up all of their hobbies. This is not healthy for you or for your spouse.
I’d like to close by saying, no matter how much help you get, it is painful and awful to lose your spouse to Alzheimer’s or any form of dementia. This is not part of the deal we thought we were making when we got married, and there is nothing easy about it. The good news is, it is now common knowledge that caregivers need help and resources. Please call the Alzheimer’s Association or look them up online at www.alz.org for resources that might benefit you and utilize the many support groups offered in your community, as this is where you will find people who really understand what you are going through. Finally, do not hesitate to talk to a Psychologist or Mental Health Counselor if you find yourself struggling with feeling overly anxious or depressed. There is no reason to suffer unnecessarily when so much help is available. After all, if it were me, I would want to preserve that feeling of standing at the alter gazing in my husband’s eyes as long as possible – even if he has Alzheimer’s.