A former caregiver looks back in wonder and gratitude in Daydreaming on the Porch

This January 28 will mark one year since my mother passed away. I lived with her for ten years, taking care of all her needs until the end with the assistance of Hospice and five part-time caregivers/home aides, several of whom had been with us for five or more years.

Fortunately, I was able to retire 3 1/2 years ago, so I was freed from work obligations to devote all my time to her. I absolutely could not have continued to work and be a full-time caregiver as well. Mom had continued a slow decline from vascular dementia and diabetes. She was 96. She was blessed to have long-term care insurance so we didn’t have to go into poverty to provide the necessary aides to assist me. I could not have possibly done it alone.

Now as I look back on the past year, most of it consumed by the global coronavirus pandemic which has altered all our lives so dramatically, I feel like I’m drifting along day by day in the same routine, but alone and living the solitary life I always imagined I would live before Mom was no longer able to live on her own and I had to take over.

For years I was accustomed to the wildest swings of emotion and stress as her dementia got horribly worse in the last five years. But I prided myself in my ability to juggle the demands of a job and full-time caregiving, while managing to get away to parks and nature preserves for several hours at a time to clear my head and renew myself. For the first time I felt that I was successfully weathering unprecedented, and sometimes terrible, new storms in life that buffeted me frequently. I was more patient and compassionate than I ever imagined I could be, despite the moments late at night when I almost lost it. Caregiving created this new person I felt good about. I felt fulfilled after a life of so many personal setbacks and failures.

But now, nine months into the pandemic, I am alone. I feel like I’m almost living on autopilot. I adhere rigidly to my daily routine. I hardly ever see anybody. Where I live you’d hardly think there was a pandemic, people are going about their lives and doing pretty much what they want to do — seemingly.

How would I really know though? I live in my own little quarantine bubble because of my age and risk factors. I’m really afraid to take any kind of unusual chances, which would mean confidently starting to do things which once were a normal part of life. Right now I get out when it’s necessary and/or I have exhausted other avenues. So my life post-caregiving has been daily routines, walks, over-reliance on the Internet, writing and photography. I don’t have to do anything I don’t want to, yet like so many others I actually long to live life with a semblance of the normalcy we took for granted. As a caregiver, I was fully alive to the tasks at hand to ensure that Mom was comfortable and well cared for. Now I have only myself to care for. Most would think this is a much less stressful situation than what I had been accustomed to for so many years. Yes snd no.

The pandemic put my life on hold basically, just as it did for so many millions of other people. The grieving process was short -circuited.

Instead of traveling, volunteering, cultivating my new friends after retiring, I find myself unmoored for the time being. As supremely difficult and mentally, physically and emotionally draining as caregiving is, it gave me a clearly defined purpose in life. Now that is gone, and I have to deal with that fact, creating a new life for myself once the pandemic is over. I can’t seem to do that now.

Mom’s presence and spirit are almost palpable in this house. Every time I look at her beloved antiques and the books and papers from her life when she was independent, I sense her very close by.

You can’t prepare for life after caregiving for a loved one. It’s impossible to anticipate how you will feel. My advice to those who are presently caregiving is this: The job you are doing and your role is irreplaceable and invaluable. Take pride and marvel at the fact that you are helping your loved one “live in place” in their own home. I can’t even imagine the tragic and calamitous situation in countless assisted living and nursing home facilities across the country because of the pandemic.

When caregiving is over, life changes dramatically in an instant. Your purpose for being is gone, if only temporarily. Take time to recover from your loss. Don’t feel you have to immediately dash out and find something to fill the vacuum you might think you are in. Life will go on, and so will you. You’ll remember the good things about the loved one you’ve lost. Memories of the agonizing nights coping with and trying to comfort someone who has lost so much of themselves will all but vanish. I can think of those times only if I try hard enough. But why should I do this? I don’t need to convince myself it all happened, surreal as it now seems, foggy and distant. Maybe that is a coping mechanism to help me deal with the continuing grief I feel. Christmas was especially hard. So many memories of past holidays now far distant along the path of time as I perceive it now that I am so much older.

I see Mom’s radiant smile and I feel the love she had for her children. She considered us her greatest blessing. And how blessed I was to have a mother like that! I’ll be forever grateful that I had the privilege of caring for her when she needed me most. After all, she gave me the life I have and nurtured and cared for me for so many years, both when I was young, and as an adult. There is no love like a mother’s for her child.

Last updated January 04, 2021