Quarantined With Alzheimer’s

This is an unprecedented time. We have never experienced this type of fear, anxiety, and isolation before. If you are caring for a loved one with Alzheimer’s disease or other dementia, your life was already stressful. Adding this new layer of extreme unease is really hard!

I wrote yesterday that I have been doing some thought experiments, placing myself and Harvey in the scenes that are occurring now. I’ve viewed this mainly as a way to try to connect with the reality of caregivers and their loved ones at this time. It’s been painful and upsetting to imagine what our lives would have been like had this virus appeared while Harvey was experiencing dementia.

I have a few ideas that might be helpful. Stick to a routine, modifying as necessary. Mealtimes, naps, and bedtime routines should continue. I know you won’t be able to take your loved one to adult day care or respite care, so maybe you could incorporate some activities that your loved one enjoys there into your day. I think I would have tried to play some variation of balloon volleyball whenever possible.

It is impossible for caregivers to practice social distancing with their loved ones, but it is imperative that others in your social sphere maintain the six foot distance if allowed to visit at all.

Continue self-care. If you have paid or volunteer caregivers willing to continue care, I recommend that you, as primary caregiver, get out of the house for a walk or a drive. You might not be able to shop or meet a friend for lunch, but you can still stay in touch with friends and family via the telephone, email, or video-chatting. Don’t wait for someone to reach out to you, make the calls yourself. If you are in a support group, maybe you could have a virtual group meeting. Continue to exercise, perhaps with an online class. Keep doing the things that bring you joy. It will relieve some of your stress.

Ask for help. During a time of crisis, people genuinely want to be of service. Consider asking a friend to bring a meal to you, or to do your grocery or pharmacy shopping, leaving the items on your porch. Have a restaurant deliver a meal for a special treat.

To prevent isolation of your loved one with dementia, try to include him or her on some telephone or video calls. Ask friends to send greeting cards.

And it’s OK to increase time in front of the television, or have more naps. Caregiving now cannot and will not be the same as it was before the coronavirus entered your lives. Give yourself permission to do the best you can.

Some activities to try with your loved one include: taking walks, singing and dancing to favorite songs, taking a drive, working appropriate level jigsaw puzzles, looking through photo albums, cooking a meal together, and other daily chores.

If your loved one is in a memory care unit, consider visiting with loved ones through windows, and if that’s not possible, ask the staff for their recommendations for staying in touch. Telephone and video calls might be possible.

And this is hard. Consider what would happen if your loved one develops a serious illness, the coronavirus or something else. Not that I want you to panic and worry right now, but it always helped me to have a solid, logical plan, before anything actually happened. Alzheimer’s disease is a fatal disease, so how far are you willing for medical care to go? Questions you might consider asking, if the need arises: What treatments might be available for in-home care, so that hospitalization might be avoided? Are paid professional caregivers allowed to stay with your loved one if they are hospitalized?

We will get through this. It will be best if we get through this together, supporting each other. And perhaps some of the coping strategies you are now developing  will serve you going forward.