Families grieve the loss of a loved one at any time of the year; the holidays only add to the pain. Dealing with loss and grief are hard work for those struggling with dementia. One of my patients recently faced this triple impact. Her journey is a great illustration of the differences in that process.
When the senior was first diagnosed with dementia, she had arranged for her sibling to act as her agent under Durable Powers of Attorney for health care and finances. Years later, her sibling became terminally ill. The successor agent took over but that did not resonate with my patient. She continued to see or call her sibling; nothing changed for her. Eventually, the disease worsened and she and I were called to a final visit in the hospital. I and her sib tried to explain that this was the final visit. (I took a photo of the two of them together). On the return, my patient showed no signs of acknowledging her sib’s impending death.
When the death occurred, I visited to tell her in person. She did not seem to remember our final visit in the hospital until I showed her the photo. Upon seeing it, she looked as though she was going to cry but didn’t. She asked why the photo was taken in the hospital. Our conversation began with a re-explanation of the severe illness. She denied it’s seriousness at first. My patient mentioned medicines in a questioning tone. I re-explained that medicines could not cure this. Again her eyes got red; no tears. She had “adopted” many stuffed animals, now she held several in her arms. She pointed to a Christmas decoration and fiddled with her socks but kept hold of the stuffed animals. I expressed my sorrow for her loss. She looked at me with an expression of fear. I put my arms around her and told her that she would not be alone. I named all the people would still be there to take care of her. With those words, she cried.
Processing grief for those with dementia is like shoveling snow with soup spoon. One of the effects of dementia is loss of vocabulary. How hard is the grief work for us? How much harder is it when one is at a permanent loss for words? Therefore, it was as important for me to “read” the behavior as well as listen to my patient’s words. For example, on the return trip from the hospital I noticed that her behaviors appeared to ignore the visit. These behaviors did not match my patient’s red-rimmed eyes. I sensed that she was trying to absorb the experience. When my patient pointed out the tenth set of Christmas lights; I reached over and took her hand saying, “I’m here for you”. She didn’t mention Christmas decorations again.
Sometimes I responded to her behaviors as replies. By speaking to the behavior, she seemed to grasp that I was trying to understand her. I found it was not helpful to repeat things. It was more important to read her and give her openings to express herself in the medium of her choice. I also found that she could only stay on the subject for a short time.
Some staff at her facility wanted her to be sure that she knew her sibling was dead by repeating it. I’m not sure that tactic was helpful. My sense is that my patient did know on one level and was trying to absorb it on deeper levels.
In some ways, her methods of processing grief reminded me of the way small children process. When she looked at me with an expression of fear in her eyes, she reminded me of a small child learning a parent has died. My patient is aware that she can no longer take care of herself. I responded to her fear of being left alone (without care). Thus, her tears may have been a sign of relief as well as grief. When we experience loss as adults, our grief is not mingled with a sense that we are in danger of being without someone to care for us. Our grief resonates on another frequency. I found it was important to “tune” my ears to the frequency of grief processing in dementia.
In my experience, dementia patients know in some ways about a loss. They also process better when presented with concrete items like photos and a prayer card with a picture of the deceased.
It was her sib’s wish that my patient not attend the funeral. I could not imagine her dealing with so many people offering condolences. Instead, I took the prayer card to her the next day. After we discussed it, we took it to the nurses’ station together. There, several staff admired the card and offered my patient their condolences. Thus, my patient received acknowledgement on a scale that fit her abilities. She nodded her head to each staff member and seemed uplifted by this part of the process. I anticipate this topic may come up again. I will respond to her expressions when she wishes; be those in words or behaviors for short time periods.