Ask Miriam – September 2020
Dear Miriam,
I have been taking care of my grandmother (my father’s mother) for the past 10 years. I have always been very close to her and now she has Alzheimer’s.. She’s 87 years old and getting more frail as the dementia progresses. I also have a caregiver that comes in every morning to help. Until COVID-19 she went to an adult day care center three times a week. I feel like in many ways I am used to being a caregiver and to dealing with someone with dementia. But the hard part is that my father was recently also diagnosed with Alzheimer’s. He is only 60. I’ve adjusted to the idea that my grandmother doesn’t really know who I am anymore, but I can’t bear the thought that one day my father will look at me in confusion and no longer know my name. It just doesn’t seem fair. How can I get through this?
—Unfair
Dear Unfair,
You’re right, Alzheimer’s is a very unfair disease that can strike people we love and slowly rob them of their everyday abilities to remember, to think clearly, and to take care of themselves. There are so many losses that go along with the disease, and one of the biggest ones is the loss of the relationship between you and a person you love. The name for what you are feeling is called “ambiguous loss” – when you are grieving for the person with dementia while they are still alive.
Watching the loss of the person’s ability to care for themselves can be painful. But it is important to remember that even if the specific memories are gone, the feelings are still there. The person with dementia can experience love, joy, comfort, sadness, anger, etc. And there is still a connection between the two of you, although it is a different one. The difficulty, though, is in caring for someone who is present…but not – the very core of ambiguous loss.
Recognize and acknowledge that this may be what you are feeling and that it is part of the disease. Try to cultivate the skill of being able to hold two opposing thoughts in your head at one time, such as: he is here AND he is not here; I love him AND I am angry at the disease; or I hate not being able to share what we used to have together AND we can have good moments in the present. Don’t forget to stay connected to friends and family. Joining a support group allows you to share with people who are also experiencing ambiguous loss.
Remember that it is just as important for you to take care of your needs as it is to care for both your grandmother’s and your father’s. If you are feeling overwhelmed with anger, guilt, or grief, talking to a professional can be very helpful. Hold on to the hope – hope for the moments that you can create between the two of you: a laugh, a touch, a shared appreciation of music, and more. Grieve that which has been lost but know that the love is still there.
Alzheimer’s Los Angeles is available to help – call us at 844-435-7259 or visit us at alzheimersla.org. If you have questions you would like Ask Miriam to respond to, e-mail askmiriam@alzla.org.