Updated: May 29
Since her mother’s dementia diagnosis in 2014, Carol has been there to create a safe and loving home for her mother. But as her mother’s dementia progresses, she faces new challenges, including providing hands-on care.
In September 2019, we experienced a significant setback when the neurologist performed another mental status assessment and said my mother should not be left alone for more than 2 hours for her safety. My mother was also recovering from hip surgery and receiving physical and occupational therapy at a rehabilitation care unit. She would forget that she had surgery and needed to rest and participate in her treatments. I realized I needed to be at the rehab center to help her heal and progress with her therapy.
I was concerned about her remembering to use the walker and use it correctly once she returned home. Falls are prevalent once someone returns home, so she must be taught to use her walker. She would get up five or six times to go to the bathroom at night. She did not remember that she had gone to the bathroom a half hour ago. By October 2019, I was becoming worn out from being up multiple times at night with my mother. My brother did not see how much of a burden this had become - during this time, we argued about replacing the floor.
My friends were growing concerned for me. I contacted the Alzheimer’s Association to inquire about support groups since I had heard they work with anyone dealing with memory loss, not just Alzheimer’s disease. Thank goodness I made that call, as it led to a consultation with my siblings and mother. I cried for a large majority of it. I was tired. I was worn out. I was also stressed about leaving for a two-week dream vacation in January, but I went on my vacation and brought in care from a home care agency.
In March 2020, my mother had a urinary tract infection and fell, resulting in being non-weight bearing on one leg for 9 to 12 weeks. This was during the COVID shut down, so I knew that I could not visit her if she returned to the rehabilitation center and that she would be scared and confused if her children were not near her. She could not be alone for more than 20 minutes at this point. I had to step up to the challenge. I was in tears. I had just adopted a dog the weekend before the fall. I was depressed. My network of friends really came to my rescue.
I am adjusting to the new normal. My mother does not remember the house she has lived in for 50 years. She keeps asking me when she will go home. She is staying in bed, and I am changing her Depends. I have had to learn how to care for her - it took time, and I had reflexes like a ninja. She has moved to a slower walker with two wheels instead of four.
I create procedures to help guide family, friends, and hired caregivers. The homecare company I brought in has gone above and beyond and even coordinated with another agency when they could not find staff. Even so, caregivers don’t show up. It happens, and you make the best of it. But it started to happen more and more, and the last straw was when I had seven days of doing all the care. We had to move, mom.
I had an end date to be the sole caregiver - I was at my wit’s end. My siblings and I started having virtual tours of memory care homes, and in January 2021, my mother moved into a memory care facility.
It has been a journey and continues. I have learned to take time and recharge by walking with my dog, sharing my journey with others, and asking for help. I know that setbacks happen. I learned early on that after any trauma or setback; there is a new normal for the person with dementia. I used to long for the previous person. I now embrace the person I have every day. Every day is the best day with my mother.