Q. How do I keep love and affection for my mother alive as I am losing her and our relationship to dementia?
A.The loss of relationship is one of the greatest challenges of caring for a person with Alzheimer’s or another dementia-related disease. It is excruciatingly difficult to watch as a loved one’s mind deteriorates as a result of a degenerative and progressive disease.
When someone close to us dies, we experience Grief, which is a difficult process that can eventually help us heal.
Preparatory Grief is what we experience when we are loosing someone we care about over an extended period of time. This is especially difficult, as it requires continual adjustments to ongoing changes. Simultaneously we grieve the losses we have already experienced; we grieve the loss of what we expected to have in the present, and we grieve the losses we anticipate are still ahead in the future.
Nothing will make this process easy or painless, but here are three suggestions that might help you manage your feelings of frustration:
1. Separate the disease from the person. Understand that when your mother is exhibiting challenging behaviors that it is not her; it’s the disease. Try gluing a picture of her on a piece of paper, then glue a picture of a brain over her head. This could help remind you that it’s the dementia that is causing the change in her. She is not choosing to be difficult.
2. Focus on a happy memory and the feelings you experienced with that particular event. Four years after my dad’s stroke, my mother was feeling repulsed by his appearance and many of his behaviors. One day instead of fixating on all of the things he did that irritated and upset her, she decided to spend her time recalling one particular day that conjured up especially happy memories. This is what she wrote:
“I think when a person has a sick husband or wife, it can feel as if you’ve been alone for the same number of years that person was sick. I have said many times that my husband died on October 30, 1993. We just haven’t gotten around to burying him yet.
Since he’s still here, I’m trying to concentrate on happier times, like Valentine’s Day, 1993 when we were on vacation in Port Richy, Florida. We were on our way to meet my sister and Frank and another couple at a very elegant country club. On the way, we stopped at a grocery store to see if we could find an inexpensive floral gift for Jean and her friend.
We were about to give up when the clerk showed us an orchid mounted in a small white wicker basket. We selected two. I must have been looking wistful, because Quentin asked if I would like to have one. I said I sure would! It was so pretty that I didn’t want to mess up the corsage by wearing it, so I kept it in the basket.
Our meal was delicious. There was free champagne and a flower for each lady. As we drove around that day I had the most joyous awareness of how much I loved my husband of fifty-one years. That flower lasted three weeks. This is another experience I’ll never be able to duplicate, but I’m so glad I have the memory.”
3. Meet your mother where she is right now. This can be a challenge, but Dorothy Tucker, a dear friend of mine who worked in memory care communities for many years said that when she went to work every day she believed in all her heart that she was a nurse in a nursing home and her job was caring for persons with Alzheimer’s.
However, the residents functioned in a very different reality, and it was not unusual for her to be seen as 15 or more different people on any given day. Sometimes a resident saw her as a mama or an aunt. Some days she was a close friend from school or the neighbor from across the street. When the residents viewed her as someone they knew and liked they would get along just fine. She would “join them” wherever they were. She saw the checkered tablecloths on their picnic tables. She smelled the roses in their gardens, and she heard their babies crying in their cribs.
Occasionally residents recognized her as the bully from school or the hussy who flirted with her husband at the dance. When that happened, Dorothy learned to go away for a while until their reality shifted and she was once again someone they liked and wanted to be with.
Dorothy told me that this was one of the biggest differences between family caregivers and professional caregivers. As a nurse she could love her residents for who they were right now, instead of grieving the loss of who they had been ten or twenty years ago.
This third step can be a challenge, but if you can allow yourself to step out of your own reality and into your mother’s reality – whatever and whatever that is at any given moment, the two of you could experience some new and interesting adventures together.
