My time as a caregiver came to an abrupt, but not unexpected, end late in the evening on July 18, 2020. I haven’t really posted on this aspect of my life for a while now, since I’m not a full time caregiver any more. Perhaps it’s time for a follow up post to share that I’ve reengaged life, and that I’ve rediscovered who I am and what I want to do with my life
When you’re a live-in caregiver for a patient with complex and variable needs, you’re on call 24 hours in each day. Sleep is something that you learn to cherish, and even brief moments of peace can have a huge impact on your overall state of mind. You learn to put aside so very much, your preferences, your plans, and even your dreams – it all slips into sort of a holding pattern. You learn to set priorities that revolve around another person, and your own requirements become second priority. For me, it meant that all the things I had been working towards and dreaming of were placed on hold, indefinitely.
A Complicated Loss
When a family caregiver loses their patient, the loss includes not only the loss of a loved one, but the loss of the structure that surrounded daily requirements for caring for them. When my mother passed, I not only lost her, I lost a governing set of rules for daily life. In addition to the grief I experienced from the loss of my mother, I continued to feel this weird sense of “ok, what now?”
When I woke up, I no longer started my day by checking the baby monitor to ensure she was still in bed. I didn’t have to listen for her waking during my morning meditation, and I didn’t have to get her cleaned, groomed and dressed, then ensure she was properly situated and fed before my work requirements started. I didn’t need to continuously check on her throughout the day to see if she was hungry or thirsty, if she needed to move to the couch or back to the chair, if she needed to use the bathroom, or if she needed the channel changed on the television. As the day came to a close, I didn’t need to see to putting mother to bed before heading to bed myself.
I no longer had a structured day with key rules and requirements in place to guide my activity from waking to sleep. I suddenly found myself without restrictions in place for when I could go somewhere, without the likelihood for unplanned occurrences each day requiring my immediate response.
Yes, when we lose our family member, there is grief and pain… but when we lose a clearly defined set of rules for daily living, we experience a different kind of loss. A loss of structure, a loss of direction, and a loss of clarity in our lives regarding our why’s and when’s.
The Adjustment Period
Family caregivers, and any full-time caregiver who is emotionally connected to the one they care for, always undergo an adjustment period after losing our “patient”. It’s important to grieve properly and to understand that for family caregivers, studies show that symptoms of depression and grief can decline rapidly and that we often reach a point of normalcy within a year of the death. It is thought that the reasons for this include that we have had time to prepare for the impending death and life afterwards, the relief of the burden of caregiving, an end to the suffering of our loved one, and an absence of guilt over having done the work of caregiving(1). It’s also worth noting that caregivers for terminal patients who use hospice services tend to have measurably better outcomes.
The other significant aspect of this loss that we have to come to deal with is rediscovering ourselves. We suddenly have days that are our own, with no mandatory requirements superseding the possibility for us to participate in activities that we enjoy. For some, social circles may have dwindled considerably. For me, working from home and being a full-time, live-in caregiver, meant I only got to see Marcie on weekends, but not much more.
Without the requirement of caring for my mother, I felt much like one who has been locked in a room for a very long time and someone opened the door to the outside. Yes, I immediately started to look out to see what I could see, but stepping out of where I’d been for so long felt more than a little intimidating. And of course, in my case, I was stepping out into a world struck by a pandemic.
My Own Path
I was blessed to have Marcie by my side. She did much to help me reengage the world. She would suggest activities, and surprisingly (to both of us), I was a little resistant in the beginning. It wasn’t because I didn’t want to do things with her. I think it was because I had been a homebody for far too long, and returning to a more normal lifestyle felt a little overwhelming to me.
Marcie’s patience and insistence really helped my progression back to a life where I was no longer a caregiver. And according to studies, reconnecting with those you care about, taking vacations, and being in natural outdoor settings can have a positive impact on our recovery process(2). And these are exactly the activities that Marcie gently guided me towards.
So here I am, 9 months later, and everything has changed. I’m happily married, we’re remodeling the house, we’re making plans for the future, we’ve established a lifestyle based on healthy choices, and I am enjoying each day of this life. Yes, I still think of my mother; I still feel the loss of her passing, but that’s now a much smaller part of my life than it once was.
In Closing
Today’s post was motivated mostly by my wish to share with all caregivers that when our time as a caregiver comes to a close, we can reconnect with life in a different way. First, we need to reach out to our family, our friends, and others we care about to reestablish our social life. We need to reengage the world, meeting with family and friends for fun events. We need to share time, whether it’s meeting for coffee or lunch, or attending church, sports events, clubs, or fellowships. It’s important that you make it a point to spend time outdoors, reconnecting with nature and appreciating the beauty of this world. Nature immersion is known to be a powerful healing mechanism against depression and anxiety, it enhances mood and sense of well-being, and even improves sleep(3). Do the things that bring you joy and do them with people you care about. It will help.
“Go confidently in the direction of your dreams. Live the life you have imagined.”
– Henry David Thoreau
References
- Richard Schulz, PhD, Randy Hebert, MD, MPH, and Kathrin Boerner, (2009), Bereavement after Caregiving
- Sarah T. Stahl, PhD, and Richard Schulz, PhD, (2019), Restorative Activities Among Bereaved Caregivers of Nursing Home Patients
- Pei Yi Lim, Denise Dillon, and Peter K. H. Chew, 2020, A Guide to Nature Immersion: Psychological and Physiological Benefits
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