OK, it is 2:36 A.M. and, as usual, I am laying awake, unable to turn off my brain. Since there wasn’t much else to do in the middle of the night, I started to reason through why I, a fairly intelligent individual, could not escape this overwhelming self-pitying, all encompassing feeling of loss. Why did I feel like I had a huge hole in my gut. I have continually experienced that overwhelming sense of – “I have forgotten something” – since Jim died.
Reflecting on what I have written in this journal, I sound like a wimp. “Get off your ass and get on with your life, you self-absorbed pansy!
I am aware that losing my life partner is a serious change for me, as it would be for anyone. I am also aware that for the last two years of his four year struggle to live, he was becoming sicker, debilitated, weak, afraid and more dependent on me for all of his physical needs. Along with this, I had to be his cheerleader. I would always come up with the positive side of every situation. Sometimes, I was hard on him – getting him to exercise, walk to the kitchen, empty the dishwasher, get on his exercise bike. These were things that were good for him. They helped him maintain his core strength and I admit that being firm with him allowed me to treat him as a regular guy and not an invalid. I knew, and he did too, that he was dying. I was already missing him.
In those two years of “CAREGIVING” I got to know my husband in ways that go beyond what you would consider as you enter that agreement – in sickness and in health. I not only continued to do those things all spouses do, but I also made sure the ice packs were cold and the hot packs were ready if needed for pain. I scheduled his meds like his life depended on it ( and sometimes it did). I created ‘Donna’s Diner” on the second floor of our house in my brightly lit sewing room so he could sit at a table to eat and not have to go downstairs or eat in bed – which is awkward in the best of circumstances.
I eventually learned how to steady my big man on his feet, how to lift him, how to slide him to a wheelchair, how to change a catheter , how to inject meds, and how to move him up on the bed when his feet touched the footboard. I learned how to disassemble pieces of equipment so they better fit his large frame, how to construct a wheelchair , how to load and drive a wheelchair van, and how to build a ramp. I became the smoothest driver ever on the 401.
Finally, I learned how to sit quietly with my daughter and listen to those last breaths come slower and slower and then stop.
It might surprise you to know that during all of this, I only loved him more – in a way that I cannot fully explain. I was able to see his intelligence, his humanity, his enthusiasm for life, his love. In all of our struggles during that last chapter of our life together, his increasing dependence on me only served to add to my sense of love and loyalty. We were a team and we tackled this last challenge like we did everything – together.
As a caregiver. let me reach out to other caregivers out there. This is not an easy task and it does not end with that last breath. It is a nightmare you live through continually as you try to go on. I recently shared with a colleague that sometimes I envy my husband for escaping the pain of this experience – I must live with it the rest of my life
Maybe now that I have recognized this as a problem for me, I can deal with it and really get on with some fun stuff again.
To all those caregivers out there – take care of you too!