This has me crying. Ten years have passed since I willingly and lovingly gave up ‘me’ to become his, and now, their, caregiver. I have offloaded on a random stranger, I’ve said out loud things I think are ‘going to far’ or those thoughts of ‘my life’ after my caring role is over. The oxymoron of paying a carer or support person to be with my mum while I go out and care for someone else’s mum to earn a little money. I now have one entering dementia and full disability and the other at 45 entering palliative care needs. I feel swamped by the emotions, the hugeness of what’s to come and it scares me, but sometimes a get BBC a shiver if anticipation. One, I will be a free solo person, two, the intense chronic pain they both experience is heartbreaking to see day and night. The indignity of needing me to wipe or wash bottoms and no longer be the daughter or wife, but the nurse, the cleaner, cook, feeder, decision maker, carer, responsible person. Every single simple decision, every single day, 360ish days a year, I plan, shop, prepare, cook and clean up after. But hey, I’m not worthy of an income, or superannuation, sick leave or holidays. It’s just how it is, for now.
Hi - it's Adrienne - as Cori mentioned in her piece, my husband didn't want people to know he was sick and despite surgery, chemo and radiation, he never looked ill. He was a cancer patient for six years and only a handful of people knew. For him, because he functioned well for most of his illness, it was freedom. He could be who he was, not a cancer patient. I, on the other hand, was a caregiver for a terminal cancer patient from the diagnosis until his death. I felt the guilt of fantasizing life "after" —— thinking of what the face of the next man on the pillow near mine at night would look like. Where would I travel? Would I get a dog? All of these thoughts were private——shared only with people in my online support group. They were all ashamed that they had the same thoughts. I know now what life is like "after." I am still responsible for every decision, every plan, every day. It's amazing how fast the indignity fades. Solo life is different for sure. I remember the first dinner I went to with a fellow widow, about three months after my husband passed. She told me I wouldn't recognize myself in a year, so much would change. She was surprisingly correct. The emotions still come over me like waves out of the blue, but when I'm sitting on a bench, or on a train or a ferry, all around me, people are talking about the care they're providing. They all think they're alone. I pipe in and the dance begins.
Perhaps some of us are just private. Perhaps we do share when we are in a "safe space." I wish more caregivers had a safe space such I have - my local Parkinson's Support Group. I thank them every chance I get!
It's so important to know when you're safe to share something! Often when people don't want to share information about their caregiving role with coworkers or acquaintances it's for good reason. I'm glad you have a safe space to talk about what your life is like.
This has me crying. Ten years have passed since I willingly and lovingly gave up ‘me’ to become his, and now, their, caregiver. I have offloaded on a random stranger, I’ve said out loud things I think are ‘going to far’ or those thoughts of ‘my life’ after my caring role is over. The oxymoron of paying a carer or support person to be with my mum while I go out and care for someone else’s mum to earn a little money. I now have one entering dementia and full disability and the other at 45 entering palliative care needs. I feel swamped by the emotions, the hugeness of what’s to come and it scares me, but sometimes a get BBC a shiver if anticipation. One, I will be a free solo person, two, the intense chronic pain they both experience is heartbreaking to see day and night. The indignity of needing me to wipe or wash bottoms and no longer be the daughter or wife, but the nurse, the cleaner, cook, feeder, decision maker, carer, responsible person. Every single simple decision, every single day, 360ish days a year, I plan, shop, prepare, cook and clean up after. But hey, I’m not worthy of an income, or superannuation, sick leave or holidays. It’s just how it is, for now.
Hi - it's Adrienne - as Cori mentioned in her piece, my husband didn't want people to know he was sick and despite surgery, chemo and radiation, he never looked ill. He was a cancer patient for six years and only a handful of people knew. For him, because he functioned well for most of his illness, it was freedom. He could be who he was, not a cancer patient. I, on the other hand, was a caregiver for a terminal cancer patient from the diagnosis until his death. I felt the guilt of fantasizing life "after" —— thinking of what the face of the next man on the pillow near mine at night would look like. Where would I travel? Would I get a dog? All of these thoughts were private——shared only with people in my online support group. They were all ashamed that they had the same thoughts. I know now what life is like "after." I am still responsible for every decision, every plan, every day. It's amazing how fast the indignity fades. Solo life is different for sure. I remember the first dinner I went to with a fellow widow, about three months after my husband passed. She told me I wouldn't recognize myself in a year, so much would change. She was surprisingly correct. The emotions still come over me like waves out of the blue, but when I'm sitting on a bench, or on a train or a ferry, all around me, people are talking about the care they're providing. They all think they're alone. I pipe in and the dance begins.
Perhaps some of us are just private. Perhaps we do share when we are in a "safe space." I wish more caregivers had a safe space such I have - my local Parkinson's Support Group. I thank them every chance I get!
It's so important to know when you're safe to share something! Often when people don't want to share information about their caregiving role with coworkers or acquaintances it's for good reason. I'm glad you have a safe space to talk about what your life is like.
Thank you Cori, for nailing it on the head.