The simple truth is, I didn’t have a clue just what I was getting myself into when I took on the role of caregiver for my mother. With each passing day, I learn more about the levels of commitment and resilience required of family caregivers.
A Humble Start to a Big Adventure
When I started this adventure, my requirements were so much simpler. After my father passed, I was able to support my mother’s needs while maintaining my own residence. At that point, I was mostly a handyman who did yardwork, fixed anything that needed fixing, and took her shopping when there was snow on the ground.
When she returned home after rehabilitation following her hip fracture, everything changed. Refusing to use the walker they sent her home with was her first declaration of independence and she held on to this fiercely, and for much longer than she should have – luckily, she wore her emergency response device every day. Being the first contact and primary responder, I started getting emergency calls more frequently than I had anticipated. In most cases, she’d taken a minor fall in the yard or to the kitchen floor and was typically doing well enough except for her frustration about her inability to get back to her feet. Occasionally, I’d need to get her in for follow-up medical care, and a couple of times emergency services had to be called.
The Ups, the Downs and the In-Betweens
Looking back, I realize now that was just the easy downhill lead-in that begins every good rollercoaster ride. With the dawning understanding that my mother was no longer well suited to living on her own, I made the difficult decision to give up my own home and become her live-in caregiver. This was a complete revision to my life as I had come to know it.
There are a few key factors that differentiate the good days from all the rest… how mom feels physically, emotionally, her lucidity, and how well she can keep up with what’s going on around her. Our best days are when mother is in a good place both physically and emotionally, when she’s lucid and relatively coherent. Those days still come, but not at the frequency they once did.
The in-between times are when some, but not all of the key factors are present. When she’s feeling poor physically or in a weakened state, it’s hard on her and very demanding of my time and attention. But when she is physically well but influenced by dementia-driven behaviors, our days can be a real struggle. What she’s misplaced, of course, I must have moved or even intentionally hidden from her. Then, in the context of things like having to discuss with a sheriff’s deputy my mother’s request to have me evicted, I have to say that the in-between days can be some of the hardest to make it through from the perspective of this caregiver.
A couple of months ago, she got to a point where she was unable to do almost anything for herself. She could feed herself and address the requirements of her ileostomy once I helped her to the bathroom, but not much else. She was very weak, not very responsive, and slept for 16 hours or more each day. I had to keep the baby monitor active both night and day, and attend to all of the needs she was unable to address. Most of the family, myself included, thought that she had entered her end of life transition.
The Emotional Roller Coaster
This is probably the biggest part of what I am talking about as the roller coaster, the up-and-down emotional impact of all of this. There are the ups, the days when she feels good physically and is, comparatively speaking, mentally present as well. On these days, it’s easy to feel good and be optimistic about the future. There are the in-between days when it’s easy to feel sorry for myself for any number of seemingly justifiable reasons.
Then, as I’ve been reminded recently, there are the downs… the days when I don’t feel like I have a clear vision of what’s next. This last episode lasted about four weeks and, although I didn’t realize it at the time, I’ve discovered that I had been preparing myself emotionally for the loss of my mother. It wasn’t until she started returning to somewhere near her previous state of normalcy that I realized just how much I had prepared myself.
The Hardest Admission
And now I bare my soul to you.
The approaching outcome that seemed to be inevitable produced a collection of mixed feelings inside. I’ve lost one parent so far, and deeply understand the impact. While part of me found solace in the fact that her daily suffering might be coming to an end, another part of me saw something else: the possible return of my own life, my freedom, on the horizon. Is this just me, or do other family caregivers have such conflicting feelings circling in the depths of their minds? I love my mother, and if she hangs on for another 20 years, so will I. She cared for me when I was unable to care for myself, I’ll do the same for her. I know this in my heart.
Still, my biggest struggle is this… I gave up my own life to be a caregiver only a couple of years ago. How selfish am I to already miss my freedom, to wish my life could be my own again? But there are times when I do.
The Big Loop
This is the special part of my personal rollercoaster ride where I was thrown for the biggest loop, left to try on my own to figure out up from down. My mother comes first, and this is as it should be – but my personal feelings still happen. Should missing my freedom feel selfish? It does. Should I feel guilty about wanting my life to be my own again? I do.
My Hope
I don’t know what your takeaway from this will be, but I hope that it finds a thread of connection with you that inspires you to add your own comment to this post. I have far more questions than I have answers, and that’s where you come in. If you’re a caregiver and can offer perspective on anything I’ve written here, please do so. As I’ve written before, this is my first rodeo. I question everything at this point, and you dear readers, are my only support group.
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