I really empathize with your situation and you opened my eyes to the hardship facing caregivers in the UK. Actually, in the US, although some caregivers get paid by the government to care for their family members, the requirements are stringent and this isn't available in all states. Here in New York this program is available, but then it wouldn't make sense for a lot of people to take advantage of it because the payment is very low and living expenses are exorbitant in New York.
Last year at Christmas I had to give up my entire winter break to care for my mom after she broke her knee and had a surgery. I continued to care for her for about half a year and I definitely felt burnt out. The aftercare services are extremely poor, and the insurance coverage extremely limited and frustrating to navigate. I cannot imagine doing this full-time. What you wrote about people living longer and needing more care is so true, and our governments are not at all prepared for this.
Thanks for your comment, Louisa. I hope your mom is managing and doing better now.
I only have a shallow understanding of the US system but it seems your frustration and battles with insurance and aftercare mirror the experience of many carers in the UK who battle with the complex system of social care services to get care at home.
On a personal note, the 'fire in my belly' burning fairly wild right now is on behalf of the carers I interact with on forums and friends. My parents and I have had a hellish rollercoaster - most acutely from 2019 to 2022, AND that was with me here full-time - a very privileged situation (I realise now) and a blessing that I could for me. When I realised what the average norm of a similar situation looks like I was, am sickened. Hence, the fire burning in my belly and conviction that I need to do 'my bit' to support other carers and prime those who are ignorant of real-life, personal challenges.
Hi Victoria, when I see the fire in your belly with my mind's eye, it also ignited the one in mine. I still have residual anger on how difficult it is to navigate the healthcare system in America, and how your care depends so much on how wealthy you are. The situation has gotten so bad that unless a person with dementia or in the last stage of life has hundreds of thousands of dollars in their avings to live in a decent care facility, the prospect is dire for both the elderly and her/his adult children. There is a certain "pergatory" where someone who isn't impoverished but doesn't have that kind of savings, where the burden is especially heavy on family caregivers, not only in terms of time, energy but also money. And our law doesn't really provide the luxury of caring for family while being paid at work (the legislature that allows us to care for family actually allows for unpaid leave only.) There is a loooong way to go before we see any sort of humane law being enacted but, seeing the way the American politics is going--fat chance! Anyway, that's my gripe, and I could go on and on.
I applaud your initiative to take up the cause and support caregivers in your country, turning your fire into a positive force. I can't even imagine the intense rollercoaster you and your parents went through in your caregiving journey.
Your situation reminds me of a Taiwanese author and her book of essays about her caregiving days -- her father with dementia and bipolar diagnosis, and her mother with dementia and something else. She is, like you, the only caregiver for her parents. I wonder if you read Chinese? If you're interested in this book, let me know and I'll pass you the name.
I hear you and sending some 'Empathy-antacids' because the fire burns bad! I appreciate our connection here which eases the burn when the fire is shared ;-)
I don't speak/read Cantonese/mandarin (she confesses!) My second language is French - yep we can discuss that in another chat sometime.. but please feel free to send me the book title and I'll explore a translated version.
Agree with everything you have written. Caring is 24/7 no holidays or weekends off! I always struggle with Xmas period because the only way I keep my sanity and some 'quality of life' is by seeing friends and having my social group. Of course, this was all 'on hold' over the Xmas period as everyone tied up with families so the sense of isolation was huge. Thankfully close friends kept in touch by email which really helped. No easy answers but politicians do need to be made aware of how close to breaking so many of us are....................
Welcome. I hear you, Kerri. Thanks for pointing that out. It's a really tough time of year. I hope you managed to get some sort of sleep and rest, and that the nostalgia brought more smiles than pain.
I really empathize with your situation and you opened my eyes to the hardship facing caregivers in the UK. Actually, in the US, although some caregivers get paid by the government to care for their family members, the requirements are stringent and this isn't available in all states. Here in New York this program is available, but then it wouldn't make sense for a lot of people to take advantage of it because the payment is very low and living expenses are exorbitant in New York.
Last year at Christmas I had to give up my entire winter break to care for my mom after she broke her knee and had a surgery. I continued to care for her for about half a year and I definitely felt burnt out. The aftercare services are extremely poor, and the insurance coverage extremely limited and frustrating to navigate. I cannot imagine doing this full-time. What you wrote about people living longer and needing more care is so true, and our governments are not at all prepared for this.
Thanks for your comment, Louisa. I hope your mom is managing and doing better now.
I only have a shallow understanding of the US system but it seems your frustration and battles with insurance and aftercare mirror the experience of many carers in the UK who battle with the complex system of social care services to get care at home.
On a personal note, the 'fire in my belly' burning fairly wild right now is on behalf of the carers I interact with on forums and friends. My parents and I have had a hellish rollercoaster - most acutely from 2019 to 2022, AND that was with me here full-time - a very privileged situation (I realise now) and a blessing that I could for me. When I realised what the average norm of a similar situation looks like I was, am sickened. Hence, the fire burning in my belly and conviction that I need to do 'my bit' to support other carers and prime those who are ignorant of real-life, personal challenges.
Hi Victoria, when I see the fire in your belly with my mind's eye, it also ignited the one in mine. I still have residual anger on how difficult it is to navigate the healthcare system in America, and how your care depends so much on how wealthy you are. The situation has gotten so bad that unless a person with dementia or in the last stage of life has hundreds of thousands of dollars in their avings to live in a decent care facility, the prospect is dire for both the elderly and her/his adult children. There is a certain "pergatory" where someone who isn't impoverished but doesn't have that kind of savings, where the burden is especially heavy on family caregivers, not only in terms of time, energy but also money. And our law doesn't really provide the luxury of caring for family while being paid at work (the legislature that allows us to care for family actually allows for unpaid leave only.) There is a loooong way to go before we see any sort of humane law being enacted but, seeing the way the American politics is going--fat chance! Anyway, that's my gripe, and I could go on and on.
I applaud your initiative to take up the cause and support caregivers in your country, turning your fire into a positive force. I can't even imagine the intense rollercoaster you and your parents went through in your caregiving journey.
Your situation reminds me of a Taiwanese author and her book of essays about her caregiving days -- her father with dementia and bipolar diagnosis, and her mother with dementia and something else. She is, like you, the only caregiver for her parents. I wonder if you read Chinese? If you're interested in this book, let me know and I'll pass you the name.
Thank you for your kind words.
I hear you and sending some 'Empathy-antacids' because the fire burns bad! I appreciate our connection here which eases the burn when the fire is shared ;-)
I don't speak/read Cantonese/mandarin (she confesses!) My second language is French - yep we can discuss that in another chat sometime.. but please feel free to send me the book title and I'll explore a translated version.
Thanks for the antiacid! It helps :-)
Here is book title: 自成一派，author: 張曼娟
I got it here: https://www.books.com.tw/products/0010952308
Hope you can find a translation. It's a great book full of empathy. When I read it I felt less alone in my caregiving role.
Oh, my third language is French so ya, we could chat about it some day. À bientôt!
Thanks, Louisa! Chouette!
Agree with everything you have written. Caring is 24/7 no holidays or weekends off! I always struggle with Xmas period because the only way I keep my sanity and some 'quality of life' is by seeing friends and having my social group. Of course, this was all 'on hold' over the Xmas period as everyone tied up with families so the sense of isolation was huge. Thankfully close friends kept in touch by email which really helped. No easy answers but politicians do need to be made aware of how close to breaking so many of us are....................
Thanks for sharing. I hope you can see your friends and social group soon. Empathetic hugs!
Thank you for this. In the US it’s also Thanksgiving so it’s a 4 week rollercoaster of care with an added layer of nostalgic cultural expectation.
Welcome. I hear you, Kerri. Thanks for pointing that out. It's a really tough time of year. I hope you managed to get some sort of sleep and rest, and that the nostalgia brought more smiles than pain.