National Family Care Givers Month is commemorated every November. Caring for a loved one at home – whether they live with a long-term illness or are elderly in need of support – is a significant commitment, and is life-changing for the entire family. Local author Diane Denton has shared her experience as a caregiver to her late mom June in blog posts while June was living and shortly after she passed away. This year she shares her reflections a few years after her mother’s passing.
You shared your experience as a caregiver in two previous posts here: in the years since your mother passed, what are your thoughts on being an at home caregiver for a loved one?
It’s just over three years since my mom passed. I’ll be honest. These days I try to avoid reliving the experience of my being her caregiver, especially the last few years of her life when she was bedridden, blind, and increasingly distressed.
My thoughts and emotions are more willing to reflect on the life we built together as suddenly single women, when, having been separated for sixteen years, unable to share birthdays and holidays and, especially, everyday moments and spontaneous (long before cell or smart phones) communication, I returned to the US and moved in with her. We certainly made up for lost time. I was only 36, she was in her early 60s, and there were many years ahead for us to enjoy life in all the ways we had in common, and, despite some differences and conflicts, to be mutually supportive. If anything, having to start over in so many aspects of my life, I was more reliant on her than she was on me.
As my mom progressed through her 80s, she could be left on her own. She cooked, did laundry and other things around the house, drove short distances, and walked well enough to go out to eat, attend church, take a painting class, enjoy lunch and cards at the senior center, and even be an election inspector. As her body grew frailer and limited her activity, her mind was vibrant and her personality recognizable. I didn’t suspect what was coming. Taking care of her as she, hopefully, lived a long life, keeping her in the home she loved amongst her cats and surrounded by nature, didn’t seem beyond my ability to manage.
Looking back, I realize how unprepared I was for coming home to her having fallen, worrying about her starting a fire so I turned off the trip switch to the stove, calling over and over to her not answering the phone or talking incoherently if she did. Suddenly I was summoning the EMTs at midnight, visiting her in the hospital and hearing her hallucinating as I approached her room, and, even worse, when she was home and it was all on me to try to calm her and make sure she was safe, which meant acting more like her jailer than daughter, and experiencing her resentment that broke my heart over and over.
What are some of the challenges you encountered being under the same roof?
Of course, it meant being aware of my mom’s condition and being involved in her nursing 24/7 minus the 8-10 hours a week I was out and had an aide stay with her. When faced with her being bedridden and needing to decide how to go forward, putting her in a nursing home felt like the worst option for both of us. Of course, there were significant financial and logistical considerations, but, also, I felt strongly that my mom would be better at home with palliative care and as normal a life as possible. There she was most comfortable, able to watch and, when she lost most of her sight, listen to her favorite TV shows, stroke a cat curled up on her bed, enjoy a sip of beer or wine, even steak when she could still chew it, and, apart from her delirium spells, feel safe and not intruded upon. For my part, I knew I wouldn’t get more rest or down time with her elsewhere. I would still constantly worry about her and there would be the time and effort of me having to travel to visit and be a regular advocate for her, something I had learned was crucial while she was in the hospital and rehab.
The aides that helped with her home care became friends and even like family, which, especially for my mom, offered her a little social life. I had a good rapport with them and an open dialogue regarding my concerns and what they noticed and even advised. To this day, even remembering the struggles, I still believe having my mom at home with me was the best option.
You also live in a rural community: was access to services a concern?
I think, initially, our rural location was a positive in regards to access to services. When my mom became bedridden and I decided to keep her at home, the challenge was to find help. I was fortunate that, because she was confined to bed, Medicare covered visits for VNA nursing and hygiene care. As I wanted to continue working part time, I needed an aide 4/5 hours twice a week. Fortunately, after dealing briefly with an agency in a nearby city that proved prohibitively expensive because the aide had to travel far, I discovered a local organization, Johnny’s Angels, that provided aides who lived in our community at a reasonable cost.
The Covid pandemic did cause concerns and eventually staff shortage for the VNA and the care agency. Just as I needed more help I had less. My mother’s doctor or her nurse practitioner rarely visited or checked in and, in the last months wasn’t at all helpful in getting hospice involved, instead insisting that our local hospice wasn’t reliable. Eventually, I called hospice myself and a referral was submitted to the doctor. Following up a few weeks later, I found out—the day before my mom passed— that the doctor’s office was finally going to approve hospice coming in. By then, it was too late.
What advice would you give to someone starting a similar journey?
I should say, be prepared, have those conversations that are hard to have, be informed, know the options available to meet the needs of your loved one and yourself. Hopefully, in the future, there will be more affordable and reliable support available for home care, not less. At this point in time, it doesn’t seem likely unless implemented at the state level.
At the same time, don’t allow planning ahead to spoil living as it unfolds, but instead—at least, as well—embrace love and connection in the moment, the best care we can give and receive, no matter what the future holds.
Good advice from Charles Dickens:
“I will live in the Past, the Present, and the Future. The Spirits of all Three shall strive within me. I will not shut out the lessons that they teach.”
~ from A Christmas Carol
Diane Denton is an author who lives and writes in a rural WNY community.
The artwork on this post was created by June.
