Caring for the Caregiver During the Pandemic

This article, written by Michele Grigaitis- Reyes DNP, FNP-BC CNRN, FAAN, was borrowed from the Beacon,  a newsletter from Phoenix's Banner Health. We've attended the LBD caregiver support group Michele facilitates there and can attest that she is very familiar with LBD and all its challenges.

Now in addition to you being the primary caregiver to your loved one, your activities are restricted. Your loved one may be seeming to decline as time goes on. You both are likely at high risk for complications if contracting the virus and likely your families and friends are telling you to “wear a mask and stay home”. Something as simple as going to the grocery is fraught with decisions- do you go in the store? Do you take your loved one? You no longer have the ability to access some of those respite activities that were so helpful to you. Even visiting with your family is limited. An already stressful role is now exponentially increased. So, what can you do?
1. Eat a healthy diet. Both you and your loved one will benefit from maintaining a typical diet. On occasion If possible, order takeout from that restaurant you both like, or go for a drive and get lunch from a drive thru
2. Neither you nor your loved one will benefit from adding or increasing alcohol. Limit your intake to no more than you did prior to pandemic. The National Institute of Aging recommends no more than 1 glass daily for women or 2 for men.
3. Get plenty of sleep. Lots of research shows sleep is an under recognized and under-treated problem in caregivers. We know that “role overload” is associated with poor sleep quality, and currently the restrictions of the pandemic would lead most, if not all, caregivers to overload.

• Stick to a sleep schedule, even on weekends. 
• Be sure your exercise is 4-5 hours before bedtime. 
• Keep the bedroom cool, and turn of that television, tablet, or cell phone! The lights associated with these are known to affect sleep. 
• Be sure to have bright light exposure during the day.

4. Regular exercise is very important. Perhaps you played golf, or pickleball, or went to the Silver Sneakers program. Or, maybe you didn’t really exercise at all. Now may be a good time to start. There are exercises you can do at home. Perhaps you and your loved one could take a walk every morning. You can do simple exercises with items you have at home. You can find a step by step plan, with pictures, at www.nia.nih.gov and type in exercise.
5. Establishing a routine is very important, and now more so both for you and your loved one. Eating meals at the same time and your sleep schedule at the same time nightly. Try to do some exercise 3-5 times a week. Try to include an enjoyable activity each day or week.
6. Take breaks from watching, reading, or listening to the news. Hearing about the pandemic non-stop is stressful for everyone. If television watching must occur, try to find channels that have pleasant or “happy” stories.
7. Use, or learn, relaxation techniques. Yoga, Tai Chi, Mindfulness meditation, and other methods, can do wonders for your stress level. Even taking deep breaths for a minute or two can be helpful. There are a myriad of resources online.
8. Connect with others. Reach out to families and friends. Call on the phone, or perhaps chat with the neighbor over the fence.
9. Connect with support groups. Most groups are being held using some type of technology platform such as Zoom or Skype. These programs allow you to see each other. If you don’t have access to the technology, that’s not a problem either. Most have the option to call in on the telephone. (You can find a list of online LBD support groups at LBDA.org.)

Thank you, Michele. Next week’s blog will be the start of a series about managing dementia-related behaviors.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.