Over the past two months, I have become increasingly aware and concerned about caregivers through this pandemic. If caregiving for someone with dementia is one of the most stressful things a human can endure, (and it is) then what does that look like in the midst of a pandemic, also one of the most stressful of human experiences? Those who do not find themselves in the role of caregiver are certainly having a difficult time, so how would we expect our caregivers to be fairing? In fact, I would postulate they are struggling more than the average citizen; perhaps even to a staggering degree.
Increased social isolation – Caregiving for someone with dementia naturally causes increased isolation as the caregiver’s world revolves more and more around the needs of their loved one. Their contact and engagement with others slowly decreases as the needs of their loved one increase. Now superimpose a pandemic where some places are literally on orders to not leave the house with few exceptions and the entire country is practicing social distancing!
They are often among our most vulnerable – Many, if not most, of our caregivers are among the most vulnerable to this particular virus. Fear is not an uncommon emotion. Even having groceries delivered to the front door may cause some to worry for fear of what may be on the plastic sack or items they’ve ordered. Heaven forbid the caregiver becomes ill with COVID-19 or other virus’ that are still circulating such as Influenza; then who takes care of their loved one? Who wants to come in and knowingly expose themselves? This sets up a whole host of concerns and issues that we need to think about and have contingency plans for.
Village? What village? – In my book, “I Love Someone with Dementia…So Why Am I Losing My Mind?” I emphasize the importance of assembling a village to get through the caregiving experience. Never in my wildest imagination did I anticipate that a global pandemic would all but eliminate the ‘village’ experience that is so important for our caregivers. Yes, phone calls are nice and perhaps you even FaceTime and the like, but let’s be honest for a moment, WHERE IS YOUR BREAK?!? Many of you may need a time out and chance to escape in order to recharge your batteries and for the love of all that is good in the world, you cannot even go to a freaking coffee shop!!! Perhaps you have a private caregiver who comes in to assist a couple times a week, but where on earth are you going to go, to your closet? Sadly, I have no good answers today.
Professional in-home caregivers – God love these wonderful people who are still putting their clients before their own selves and continuing to go out into our community and care for those who need it; although not without risks to themselves and those they care for. When a caregiver comes into your home, you are automatically exposed to everyone they have been in contact with; and everyone with whom their family may have been in contact with. It’s not without risks, but I also urge you to consider that being alone with your loved one for an extended period of time with no relief is also not without risks.
Consider respite – During this extraordinary time, it is important that you know your limits. While we would all like to think that we are immune to such extreme emotions, if we are being honest with ourselves, we all know we are not. Not all, but some of our memory care communities are taking very carefully screened admissions at this time. It may be that the most loving thing you can do right now is to have your loved one live somewhere else. Perhaps when this crisis fades, you can bring them back home. However, in addition to thinking about our loved ones, we must also think about ourselves. While this option is also not without risks, only in caring for ourselves can we truly, wholeheartedly, care for our loved ones.
We are all doing the very best we can right now. That looks different for each and every person. These are unprecedented and uncharted waters. Most of us are looking for a compass or a map by which to plot a course to get through this, but there are none.
This is hard.
Caregiving is hard.
Know your limits.
Reach out for help. Myself and many others are here for you.