Eight years ago, I was a happy camper. Dan and I were in our late 70s. We had online jobs, a lovely home, a solid relationship, two cute rescue cats, and family nearby. Life was good; then, almost overnight, it no longer was.
The article Caregiving in the United States 2020, says
more than one in five Americans (21.3 percent) are caregivers, having provided care to an adult or child with special needs at some time in the past 12 months. This fact totals an estimated 53.0 million adults in the United States, up from the estimated 43.5 million caregivers in 2015.
Kicking and screaming, I was the one in five. I did not want to be a caregiver and was utterly unprepared, but this was my forever partner and the love of my life - how could I not?
If you’ve been reading Aging Well News, you know we met when we were 12. We were married for 62 years - a team and best friends. At age 78, Dan was experiencing some memory loss but still had a full-time job as a website administrator, drove the car, managed the finances, and fixed the technical problems – from computer glitches to clogged pipes.
During a nine-day hospital stay for emergency surgery, doctors prescribed anesthesia and a long list of medications. His body quickly recovered, but his memory never did.
Over the next two years, he lost his job, barely remembered family members, and forgot what we said from one minute to the next. Subsequently, he was diagnosed with Alzheimer’s disease and dementia.
I visited retirement communities, assisted living, and memory care facilities to become familiar with the options. Initially, Dan didn’t need that level of care, and the cost was enormous. So, we stayed at home. He knew his way around, and it was cheaper. I tried in-home respite care - four times, but he was adamant - “no stranger is coming into my house.”
With the help of family members, we managed for another year, even though his symptoms increased and his behavior became more erratic.
When the pandemic took over, and the governor declared we must shelter in place, our strategies no longer worked. He couldn’t go out. No one could visit. I had no breaks and felt unsafe. Within six months, I could no longer care for him.
With enormous sadness and trepidation, I found a memory care facility for him. He never accepted that he had a problem and would never have agreed to move into a facility, so we made the arrangements without his knowledge.
My caregiving experience was for a loved one with dementia - our struggle is the foundation for the newsletter articles. Yet, as the video describes, caregivers can and do have other relationships and situations to manage.
Most articles I read about caregiving discussed managing the patient and their needs, maintaining records and doctor visits, and taking care of specific issues as they arose. Much of what I read about caregiver support was superficial and cursory.
Dan’s illness was the greatest challenge of my life. Everything that I had known for over 60 years changed - my identity, ways of being, hopes and dreams. I needed more tools - more strategies.
To survive, I developed an action plan - a set of guidelines, if you will. While maintaining a healthy lifestyle and fostering a positive outlook are well-documented strategies for caregivers, I found other factors played a role, such as:
changing long-held habits and beliefs
accepting an entirely different life
finding resourceful ways to survive the dark times and manage the situation
No matter your caregiving story, the guidelines offer ideas for handling circumstances more effectively.
During the next ten weeks, I’ll publish a weekly guideline and discuss how I applied it while Dan was at home, at the memory care facility, and now - two years later.
Then, I plan to offer tips for helping caregivers age well, information for managing the patient, resources for surviving during this time, and addressing topics you may want to cover.
The guidelines are as follows:
Guideline 1: Maintain a healthy lifestyle by incorporating the six elements of wellness; physical, intellectual, social, emotional, spiritual, and functional.
Guideline 2: Foster a positive outlook by identifying a purpose and reasons to be grateful.
Guideline 3: Be resilient, resourceful, and willing. These characteristics are vital to moving forward.
Guideline 4: Practice self-care. Caregivers need to be healthy first as they care for another person.
Guideline 5: Adopt supportive habits. Set yourself up for success.
Guideline 6: Evaluate beliefs. Release harmful ones and adopt helpful ones.
Guideline 7: Accept Life’s Changes. As Dr. Phil, the television personality, says, “you can’t change what you don’t acknowledge.”
Guideline 8: Choose Wisely. Ask yourself how well your choices are serving you.
Guideline 9: Make friends with your inner coach. Listen to an encouraging voice rather than a criticizing one.
Guideline 10: Be proactive. Don’t be a victim.
At “In Retrospect” component at the end of each article discusses lessons I learned.
Three fundamental decisions that would have helped me as a caregiver were
take care of myself first
accept the situation or at least acknowledge it
Next week discusses maintaining a healthy lifestyle.
What subjects would you like to read about?
Thanks for reading! Subscribe for free to receive new posts in your email.
If you wanted to contribute to my work, you could consider donating to the Alzheimers Association. This link takes you to their website. The choice is always yours.
Thank you Sharon. Most people have no idea the effort it takes to be a caregiver. They may know how to watch out for someone’s safety. A caregiver is one who truly cares. That is the hardest part of this job. Most people are elderly, you give them your heart so you can build trust. After a period of decline, most die. This is the first time I have ever had to be the one to say “I can’t “. I tried to talk myself into it. I didn’t speak up in time and fell. There was not another choice. I had to pull the pin on the on a very sad situation.
I appreciate your kind words.
This is a great plan, Janice. I look forward to it!