I am a project manager in a telecommunications company and a caregiver to my father with Alzheimer’s and my mother with Fibromyalgia. My husband and I love travelling although all of that is on hold due to COVID-19.
I was the first person in our family to notice my father’s symptoms, but my family members dismissed me when I raised it. By the time my father had his diagnosis, his Alzheimer’s had developed too much for him to be included in planning for his care. It is my deepest regret to this day that I didn’t advocate for him hard enough to get tested sooner so that he could tell us what he wanted for himself in the future. My mother and I have had to make those decisions on his behalf based on what we believe he would have wanted. On top of my father’s diagnosis, my mother had become more hunched over in the past couple of years due to her severe back pain. Without me constantly advocating for my mother, her doctor would never have sent her to get an MRI test. It was determined that she had broken her back in her 20s and it had not healed correctly and that one of her discs was pressing on an area that caused her legs to give out.
To provide better care to them in late 2019, I decided that I would move them into an independent living retirement home closer to me. The retirement home was supposed to be engaging and entertaining, but due to COVID-19 all of their activities have stopped, and they have been confined to their apartments. This has limited their mobility and causing them to lose their physical strength. My father now needs help getting to the bathroom and we now have PSWs coming twice a day to shower and dress him. We thought we were 5 years away from looking at long-term care, but it seems like we may have to look sooner.
The family dynamic is the hardest part about my caregiving journey. In every family, there is always the one child that does the lion’s share of caregiving and the other child that does less. I do their finances, attend doctors’ appointments and advocate for what they need. We are so grateful for the number of resources available for Alzheimer’s, including amazing support groups and education sessions. On the other hand, these supports are not available for my mother for fibromyalgia and pain management. It took 3 years to get my mother a referral to a pain management clinic and orthopedic surgeon because her GP was so dismissive. It was an incredibly frustrating experience trying to get my mother the help she needs. Our GP was not specialized in geriatrics and did not understand the severity of her pain.
There are only a few emotions I haven’t felt during caregiving. I was frustrated at the lack of support from family members and the healthcare system. As my father’s disease developed, he would lose more and more of his abilities. It was as if every time I saw him, I had lost more of him causing me to be in a constant state of grief. I felt guilty for thinking that they will suffer less if they pass sooner. Despite all of this, having them close to me has been a true blessing. My mother and I have cultivated a much deeper relationship, and we learn to celebrate the little things with my father.
From a practical perspective, my advice to new caregivers is to make sure you have all the paperwork needed ready including power of attorney (POA) and wills. Use technology to the best of your abilities like an online platform to update family members and camera systems to make sure they are ok. My most important advice though, is to not lose your base relationship for who you are caring for. I am their daughter first. I hire and ask for help so that I can remain their daughter and it stops them from feeling like a burden and reminds me why I am doing this.