Ask Miriam – November 2020
Dear Miriam,
My husband and I have been married for almost 50 years. Two years ago, he was diagnosed with dementia and I feel like I have been losing him slowly. Now, with the coronavirus, we are almost always at home together but he doesn’t want to talk or do anything other than sit in front of the tv. I miss him so much and I feel so lonely. Are there any activities that the two of us could do together? The holidays are coming up, too, and I know we are going to be alone. Our children and grandchildren live in different states and our family will not be getting together due to COVID-19. I know they want to keep us safe from the virus but I’m so sad that I will not get to be with them this year.
—Sad & Lonely
Dear Sad,
I’m so sorry that you are going through this right now. The coronavirus has intensified the emotions and experiences we are going through and your sadness and loneliness are natural. Your husband’s withdrawal may be part of the dementia but that doesn’t make it any easier for you. As dementia progresses, the part of the brain that makes plans and carries them out no longer functions, so you as the caregiver will have to be the one to initiate and guide any activities the two of you take part in. Think about what he used to like to do: was he handy around the home? Perhaps there are some practical tasks that you can do together, such as you sweep the floor and he can hold the dustpan. Did he like to read? Perhaps you can both listen to an audiobook together. Did he enjoy art? There are a number of programs now online which can take you both on a virtual museum tour or even to “visit” a different country. In addition, it is often helpful to NOT ask the person with dementia if they want to do a particular activity. So often, the answer is an automatic no, perhaps because the person is fearful of being put in a situation where they do not feel competent. Try to match the activities you choose to your husband’s abilities, simplifying steps and providing lots of reassurance and praise.
Regarding the holidays, think about what traditions you want to keep and how you can alter them so that they are manageable for both you and your husband. Don’t forget that you can keep in touch with family members by phone and by computer platforms such as Zoom. For example, you may be able to bake cookies together on Zoom with your children or grandchildren, while they are making cookies in their own home at the same time. Give your husband appropriate tasks such as mixing the batter or measuring ingredients. While it is important to maintain a positive and encouraging mindset with your husband, it is also essential to get support for yourself. A friend, relative, or other person can listen to your sadness. At Alzheimer’s Los Angeles, we have support groups in which caregivers can share the feelings that come up for them. Be gentle with yourself and don’t be afraid to reach out.
For more information and support, including a schedule of activities available to people with Alzheimer’s or dementia, please contact our Helpline at 844-435-7259 or e-mail Miriam at askmiriam@alzla.org.