by Kris Andres
The symptoms are not obvious when they begin. They are convenient to overlook and easy to ignore. It's even easier to find excuses when it's your spouse.
Changes in the pattern of your life after decades of marriage can cause extreme stress and may be met with denial. When a husband has always been in complete control of every aspect of your coexistence, taking over all of the responsibilities can be overwhelming.
Because I had experienced the progress of dementia in my mother-in-law over the last eight years, the changes in my father became obvious to me long before my four brothers recognized them. Everyone noticed that he was starting to repeat things. Who doesn't do that once in awhile? No one really noticed, however, that he was no longer reading his beloved books or forwarding silly jokes and stories through his email.
And after years of my father doing most of the cooking, I noticed that my parents' meals had become a rotation of pizza, KFC, McDonald's and Boston Market. Anything that could be picked up. I also noticed that at restaurants he would always order whatever Mom was having — even though he didn't care for it.
In the years following his retirement, my Dad had taken over everything. In addition to doing all of the cooking, he paid all of the bills and even did the laundry. That sounds ideal, but Mom basically forgot how to do those things. She became totally and happily dependent on him for everything.
For several months, I discussed all these changes with my brothers. On a visit to their home, one of my brothers found delinquent bills and thousands of unopened emails. After a few close calls, we were all suddenly worried about our father's driving. Our parents always loved to travel, even driving across country from California to Tennessee several times a year. Because my parents ignored all of our attempts to discourage this, we sent a letter to their doctor of 25 years asking him to evaluate Dad with hopes he would restrict my father's driving to local areas.
But the doctor did more than that! After a thorough series of examinations, he determined that my father had dementia. He subsequently sent a letter to the California DMV which resulted in Dad's driver's license being revoked. This was a huge relief to us. Dad seemed to accept it; Mom, however, could not. The doctor had not discussed his diagnosis with Mom and the letter from the DMV blindsided her. She began hating her friendly family doctor immediately, and couldn't understand how he could do such a thing to them. In retrospect, all of us children were guilty of not talking to her about our concerns, even though we had been discussing it with each other for several months.
Very suddenly, Mom's whole world was turned upside down! One day she was happily planning a car trip from California to upstate Washington and the next day her husband's driver's license was revoked. The revocation of my father's license signified that one era was over, and another was just beginning. It was a wake-up call for my mother, but she has never fully awakened. It gradually began to sink in that she would have to assume the responsibility of paying the bills, driving, cooking. and everything else. The stress caused her to lose 35 pounds in just a few months. She became very frightened and very tearful. Her nearest child lived 2 states away. She felt very alone and overwhelmed.
Within a few months, we were able to move them from California to Tennessee. It took the whole family to manage it. Changes cause great confusion and agitation in someone with dementia, and Mom was the target of all my father's anger. Fortunately, and for the time being, our parents are still able to live in their own new home and function well now that they have help from the family.
I have found, however, that helping with their daily lives — paying bills, rides to the grocery store and helping with their chores — is the easy part. Helping Mom deal with and accept the changes in Dad has been the hardest. She gets frightened every time Dad says that they are moving back to California. She thinks that a different doctor would tell him that it's okay to drive. Helping her to realize that it's okay if Dad says he wants to move back to their previous home, and to understand that he really doesn't remember things he just heard, and that it really was time for him to stop driving have become the greatest ways I can help her right now. She is receptive to everything I say, but I know that her deepest desire is to have everything just the way it was before.
It's not just the increase in caregiving that affects the spouse. It's the changes in all the familiar patterns of a shared lifetime that can be the hardest to accept.