Another Friend’s Caregiving Story
As I have said in some of my blogs before I belong to a support group for caregivers which I attend weekly. I informed the members of the group that I am writing these blog posts and encouraged them if they wished to write about their experiences and allow me to post their stories knowing that each story is different and hoping that different stories might resonate with some of the people on the journey who don’t relate to my personal one. The following is one of those stories:
My caregiving journey with my parent suffering from the disease of dementia.
Feb 13, 2025 at 3 pm in the afternoon, my youngest sister (who lives near mom in New York City) called to let me know mom was acting strangely and could not get off the toilet. She had been sitting there for 12 hours. I told her to call 911 immediately. Mom was admitted to hospital via ambulance. Her sugar reading was 500 even though she was never diagnosed with diabetes. She was, in my opinion, near death. After 10 days she was transferred to a nursing home at a monthly cost of $13k.
My mother’s life and independence
But I digress. I left home at 18 years old and entered the Air Force at 19 where I remained for 21 years. Mom raised my 4 siblings alone after separating from my stepfather a few years prior. She never divorced or remarried. When my siblings left, she lived alone and went back to work at nearly 50 years old and remained single and helped raise my niece for the first 7 years of her life.
Her faith and regular church attendance kept her going and socially engaged.
What changed during isolation
COVID-19 left her isolated and her mental and physical health noticeably declined.
I visited her 2-3 times a year since leaving home but did not realize how much she was falling and unable to care for or cook for herself until she became noticeably thinner.
On a trip to the doctor I helped her change into a hospital gown and noticed how thin she'd become. I realized she had lost 35 lbs. after a weigh in.
This was 3 years before I received the call from my sister about her inability to get off the toilet. After COVID, I reconnected with a friend here in California, who was caring with her mom who had been struggling with dementia for 11 years. She asked me one question that really opened my eyes. "Does your mom sleep a lot?" I looked at her stunned for a moment before replying "yes".
And she continued to share her mom's story in more detail. I knew then that I needed to find help for mom in the home.
Finding support from a distance
Since I am involved in different walking groups I started talking to some of the ladies in one of them and she recommended I reach out to a local support group for caregivers of loved ones with dementia. I did and realized how many folks had loved ones struggling with this devastating disease.
Since mom and my 4 siblings still lived in New York City, and I in California, this group was a light in the dark for me and my youngest sister who had trying to deal with her own life struggles and provide care for mom.
Through the support group I was advised to contact The Department of Aging a national agency that helped me find caregiver resources in the area where mom lived. I was put in touch with a community service center that specifically worked with family members caring for aging/disabled loved ones. They immediately started Meals on Wheels and assessed mom to determine how many hours of in-home health aide services she could receive. Three days a week, four hours a day was a godsend for nearly a year before Mom was hospitalized.
Navigating the costs of care
After hospitalization, Medicare covered the first 100 days only. Since mom had only
her income, no investments or long term care, we would need to apply for Nursing Home Medicaid.
The nursing home Business Manager referred me to a lawyer. I hired a lawyer, who was a Medicaid Specialist, to help navigate the Medicaid system and get funding to cover the gap between mom's income and the cost of nursing home care. The lawyer was able to get Nursing Home Medicaid approved.
Through all of this, I realized how important it is for family members to communicate with each other. I really didn't realize how much mom had declined until my sister, who was doing all the work, started sharing with me a few years ago. And mom never shared anything about her struggles because she did not want to be removed from an apartment she had lived in for nearly 50 years!
She once said that she wasn't leaving until she was carried out of the apartment. Sadly, that's how she left. She is now the getting 24-hour care she needs and deserves. I visit monthly and handle her business affairs. I am very thankful we had a will, health care proxy and power of attorney in place before she fell ill.
Continue reading