Dementia First Responders

Family Caregiving during the Pandemic

“Caring for my wife during the Pandemic is like being put in detention.” A comment from one of my clients.  He no longer has a day care program to rely on and home care companies rarely will do short shifts, and the option of assisted living would limit visiting his wife. He is not alone; thousands of families had the support of day care or short hour shifts prior to the pandemic. They might have even had support from volunteers, family or friends. But, Covid-19 has shut the door on most in person support, leaving caregivers at their wit’s end, burned out, tired and feeling guilty because this person is loved at the same time as being a great burden. 

This “dilemma of love” is often the most painful journey for a spouse wanting to be supportive, because their care is often received with resistance, anger and/or apathy from the individual with the progressive dementia. Often extended families are unaware of the burden of stress on the primary caregiver, sometimes because the spouse isn’t asking for help and sometimes because they just don’t see what that “first responder” caregiver is experiencing.

Bird with speech bubble that says a little hope. Text below reads together we will get through this.

My client said, “Caregiving doesn’t get easier during a rocky, declining trajectory. The past decade has left me as a caretaker parent with worries (and joys) in reverse. It is as if starting with a freshman away in college, moving slowly through life’s stages backwards, to now caring for a toddler at home.” If you are not a caregiver, this is a wonderful visceral picture of what it is like being a primary caregiver to someone with a disease like Alzheimer’s dementia. These primary caregivers that are spouses are often the same age with age related challenges of their own. 

When researching, “caregiving during the pandemic”, you can find lots of information on the safety protocols that all of us are so familiar with, but not much information on how to keep masks on your family member. Remember, children under two don’t need to wear a mask because they don’t understand and might have their breathing compromised. Caring for someone with an advanced dementia is much like having a two year old.  We can easily get them to wash hands or maybe rub hand sanitizers on, but the mask is a challenge. My recommendation is to try masks with the band around the head.  Cloth masks that are pretty appeal to some women, but many times you are going to get resistance which will limit your outdoor activities. Once you have your mask on, then it is easier to put theirs on. They might just go along, but remember that it is you first.     

Lovely granddaughter walking with senior woman in park and wearing face mas against covid-19. Smiling old grandmother with happy caregiver in park relaxing after quarantine due to coronavirus.

Recognizing burnout is important because this is your “red-flag” that you need an intervention in order to keep being a “first responder” to your family member. If you are feeling anxious or hopeless, deprived of sleep or having difficulty with your usual activities of daily living, you need to wave that flag and get help.

To stay healthy and continue your role, these are the “musts”:

  • Eat a healthy diet – look into heart healthy, Mediterranean and reduced inflammation diets.
  • Sleep – 7 to 8 hours a night.  If the impaired family member is disturbing your sleep you might look to family volunteers to take a night staying in your home or hire sleep-over caregivers.
  • Exercise – daily for at least 30 minutes.  This is often a walk with your family member but if you can, find a sitter and get out for an hour a day. Maybe a neighbor could sit for you while your family member is napping (still keeping a distance, masked, and hand washing). That way you can find peace during your exercise. You can always do a Zoom class or find a CD to guide you.

Mental Health

  • Focus on what you can do, not what you hoped to have accomplished in any given day.
  • Stay connected with friends and family on Face Time, Alexia Show, Zoom, etc.
  • Find mindfulness activities to do daily – meditation, prayer, walks, sitting in the garden.
  • If you are feeling depressed or hopeless, reach out for help. Find a support group or therapist.
  • Just like our heroes the “First Responders” taking care of those with Covid-19, you family caregivers are also heroes. Caring for someone 24/7 can take a toll. Don’t let it take you too. In order for your family member to have the highest quality of life, they will always need you to be their advocate even when in Memory Care or Skilled Nursing.  Remember, self-care is a must for both of you.