Hello to caregivers everywhere! I hope this finds you having as good a day as possible and your burdens not too heavy today.
My name is Scott and as some of you already know I was the primary caregiver for my wife during her 14+ year battle with brain cancer. We were married for 41 years and she was 49 when first diagnosed. During the first 8 years of her battle I was employed as well as being her primary caregiver. Due to a new boss who sought only “employees who will give 100% to their job with no distractions” for the next 5 years I was unemployed and 24/7 fulltime caregiver. For her last 14 months, my wife chose in-home hospice care, during which time I continued to be her 24/7 primary caregiver with some critical support from a terrific hospice team.
As you can see, as a caregiver I am what I like to refer to as ‘well-seasoned’. It sounds a lot better than tired, battle weary, beat-up, etc. So I go with well-seasoned.
I still miss my wife terribly. The adjustment has been challenging for me to manage at times and so far it isn’t getting any better. I believe there is not any ‘new normal’ as so many tell me to go and find, but simply that my life is now just plain different and always will be.
This said, I have been spending some time thinking back on the demands and realities of my years as a caregiver. As I say to our children, I call this “the good, the bad, and the blurry”. The good because it taught me several valuable lessons; the bad as there were far too many truly terrible experiences; and the blurry since much of those years were spent sleep deprived, exhausted, and at sixes and sevens. As I also say to our children “caregiving is the only job I ever accepted where there was no employee manual nor training program offered.” Just jump in the middle of the ocean and try not to drown!
As I look back I’ve decided I’d like share a few of what I have come to see, in hindsight, as critical aspects of caregiving, how I managed them, and what, if any tricks I learned in the process. I share them here for any other caregiver who wants them. It is often said “advice is worth what you pay for it” so since this is free you can take it or leave it. No hard feelings as I write this hopefully to not only help others, but as a personal catharsis as well.
I offer my insights over the coming days in no particular order.
Insight #1: Ghosting
The Urban Dictionary defines ghosting as follows: “The act of suddenly ceasing all communication with someone.” While usually confined to the dating scene, this can occur with equal frequency in caregiving. It meshes nicely with Dr. Martin Luther King’s famous quote “In the end, we will remember not the words of our enemies, but the silence of our friends.”
I am a people person. Extroverted, open, and social so this aspect of caregiving was not only difficult for me to manage, but also difficult for me to understand. Plus those who ghosted on us ran the gamut from family to friends and from neighbors to colleagues.
I don’t pretend to understand why people ghost, but I wish I had been prepared for this aspect of the life of a caregiver and her/his patient. It would have saved my wife and me a lot of heartache and sadness. It still makes me scratch my head in wonder how ‘friends’ of more than 40 years have yet to even acknowledge my wife’s death. Equally how family can decide to visit our home only once in 14 years. How so many forget that the phone, texting, US mail, email, etc. operate in two directions!
As I have thought about it I believe a portion of those who ghosted on us did so due to the fact my wife’s brain cancer affected her personality. I find it common for people who exhibit less than normal mental capacities to be ignored, shunned, or isolated. Safer and easier to simply wall them off from your life I guess.
I also believe a portion of those ghosting do so because it is easier to have a painful thing in our world be ‘out of sight and out of mind’. Things, and especially people, are easier to deal with in our minds if we simply choose to ignore them. Rather than reaching out it is more comfortable to accept an internally made-up reason for one’s inaction.
These days I realize, more than ever, those few people in our lives who made the conscious decision to not ghost on us did so by making a serious effort on their part to stay in our lives at a very difficult time. I am truly thankful to each and every one of them! Their continued connection with us often made the difference between another hellish day and one which contained for us a ray of light and a sliver of hope. A note that makes a caregiver or their patient smile is worth its weight in something far more precious than just gold! I am enjoying taking time now to be certain I continue to let each of these folks know of the importance they had in our lives and continue to have in mine.
My father-in-law frequently opined “if you can count your friends on one hand you are lucky”. He was so very, very right.
Peace and strength to every caregiver!