A Letter to an Adult Child Dealing with His Mother's Dementia

The following is a letter I wrote to a friend of my cousin's who has been struggling with his mother's rapid decline from a suspected vascular dementia. It touched me deeply to see this man tortured by watching a horrific cognitive decline which he was helpless to control. This was my response to him.

Dear K,

          I asked my cousin to send me your address because I wanted to lend you some support as you deal with your mother's health problems. It would be tempting to offer you my social work advice but I feel it is more important to offer you kind words and encouragement as you grapple with the uncertainty of your mother's decline.

         As a adult child who lived through my parent's deaths, I have the greatest empathy for what you must be going through. Watching your parent age and live through the declining years conjures up deep internal struggles involving saying good bye to the way it was. When my mother had her massive stroke, it felt like my whole world crumbled leaving me with an excruciating sense of helplessness and emotional pain. There is no way to prepare for or grapple with the emotional wake of parental illness. There were times I would burst into tears unexpectedly after my mother had her massive stroke-and I'm not a crying kind of woman. I wanted so desperately to protect her from the suffering she was experiencing. To watch as a bystander to her struggles was unbearable at times, especially knowing I was powerless to stop it. Anxiety, sadness, and feeling overwhelmed unfortunately comes with this territory-it is also known as grieving. Saying good bye to the mother who has always been there for you is agonizing.  I've heard it said that grieving shared is grieving halved. I do know a loving shoulder to cry on will help vent the build up of emotion. May you be comforted and find peace during this ordeal.

         No matter what happens to your mother, I know you will do your best to see she has the highest quality of care. She is blessed by having you as such a staunch advocate and loving son. Because she is cognizant of her rapid decline, she is a both a prisoner and victim of the cruelty of her disease. Please know that whether she can recognize this or not, you are providing her with alternatives to keep her safe and functioning. Unfortunately, she is like a drowning woman who doesn't realize what the life preserver thrown to her does. 

        But my concern remains with you because you are a witness to this and are the main decision maker. Sometimes this means you are in a no-win situation. I was with my mother when she had her final cardiac arrest and had to tell the arrest team to stop. To this day, many of my family members have not forgiven me for that decision. But she had told me (and only me) a few weeks before her death she did not want ever to be resuscitated. I have no regrets about this. Please do not regret or ruminate about the decisions you make to provide her with appropriate care. You truly are doing the best you can.

       Familial politics tend to complicate this landscape further. For example, when I was feeling sad about my mom, my sisters would be angry and upset. This tends to make one feel stranded and alone. So you are not only dealing with a lovely mother who is disabled but a family trying to come to grips their issues in their own way. There is no template for the right way to deal with this.

       You are not alone. Your support system will be invaluable as you put one foot in front of another. Those of us who have been through this will know what you are dealing with and will offer our strength to you as cope with each step along the way. Remember to be kind to yourself, give yourself a break, allow yourself to grieve these changes, and ask for help when you need it. You can always count on me.