In recent months, my life has focused on caring for my ageing mother. No one can understand what you are going through while caring for someone powerless and entirely dependent on someone else’s help until faced with it.
I grew up in a loving family. My brother and I have been always strongly connected to our parents and each other. It didn’t change even though I have my own family.
My father died fifteen years ago. He had cancer but did not suffer long. I took unpaid leave to help my mother nurture him for the last two months of his life. He died at home with the three of us holding his hands. I experienced the death of a loved one for the first time. My grandparents died when I was just a little girl. I barely remember them.
Now I face the thought of another loss. Even as I write these words, my heart fills with sorrow.
Although I feel exhausted beyond belief, I would not put her in a nursing facility. After having watched the number of relatives spending their last days in nursing homes, I can say with certainty that they did not get the care they needed.
Nursing homes, in general, are characterized by severe shortcomings in performance, understaffing, and poor care – even those expensive. Caring for the elderly, immobile, and infirm is one of the most difficult jobs in the world. Staff cannot provide adequate care if they are overload (due to understaffing) and underpaid, even if they have the best intentions. It is a societal issue, not just in Croatia but in most Western countries, including the US.
During the pandemic when nursing homes banned all visitors, we couldn’t visit our relatives for months. Talking to them on a cell phone couldn’t replace in-human communication, and most importantly, touch. At the time of the ban on visits, our friends experienced the most difficult moments of their lives. They could not say goodbye to the dying family members.
The pandemic further revealed deep and long-standing problems in institutional care for the elderly, especially in private nursing homes. In many homes, due to illness, isolation, and self-isolation of some staff, there was no one to bathe immobile users or change their bedding.
Knowing all that, and even though my brother and I work full time, we decided to care for our mom in her home. My brother arranged to work the afternoon shift to be with mom while I’m at work. I come right after and stay until my brother comes home from work. I spend weekends with her. We hired a caregiver for a few hours a day to help us get her out of bed, feed her, and do daily hygiene. Caring for a bedridden loved one is also physically challenging. I learned proper lifting and transferring techniques to reduce the pressure on my back. My cousin also helps us with all that.
I won’t go further in detail. The words cannot describe how hard is the work of caring for an infirm loved one and trying to make the final years of her life comfortable. You should be in one’s shoes to understand how exhausting it is, emotionally and physically, and how excruciating is to watch someone you love slowly weakens and become frail. I cried many times when she couldn’t see me. I also saw my brother crying.
We put our lives on hold. We sleep, go to work, and care for our mom. There is no time for going out with friends. We only have a couple of hours a day for ourselves. I am writing this early in the morning before going to work.
But still, and despite my mom having certain mental problems (psychotic episodes), we have many moments of enjoyment with her. Those treasured moments compensate for the time, energy, and sacrifice caregiving takes.
I understand that people have different relationships with their parents and different feelings about taking care of them. Not everyone wants to sacrifice personal life. Many are too busy trying to eke out a living and cannot afford to pay for assistance. Also, many live hundreds of miles away from their parents.
I’ve chosen to do the best I can for my remaining parent and made the most of the time left with her.
But I can’t do it alone. I am so lucky to have a sibling who shares responsibilities with me. We work as a team and share all the costs. My husband takes care of most of the household and familial duties while I balance family life, work, and caregiving. I often have to remind myself that I should care for myself also and accept things I cannot change, the things over which I have no control.
Taking a pause is essential when dealing with emotionally draining situations. I play Sudoku puzzles that help me clear my mental clutter and give me a little mental break. I read. Mysteries relax me the most. Also, my friend showed me some Tai Chi moves I can practice at home. My brother does meditation. We both cope with caregiving stress the best we can.
The golden rule denotes that you should treat others as you want them to treat you. My paraphrase of the rule looks like this:
“Care for your ageing loved one the way you would want to be cared for once you’re aged and infirm.”
Although there are situations that override the golden rule, I stick firmly to it. A variation of the rule suggests that we should treat others as they wish to be treated.
My mother’s wish is to live out her life at home, and we’ll do everything we can to fulfill it.