You are a hero. I am in awe of all you are doing. It’s so hard. Like you, I need silence to write, or a curated soundtrack. I need time, and no interruptions. At the moment my pain is so loud that I’m struggling. My husband is an angel and takes care of everything. I found out this morning that I need a small operation, but I’m relieved because I’ve been messed around by doctors for months with this constant pain. Anyway, I’m proud of you, and I’m proud of me too because we are doing good hard work in very difficult conditions, with no clear end in sight. Sending you lots of love ❤️❤️🙏🙏 Cesca
Have been going through this with my parents, who both have dementia. Thank you for describing it all so well. I recently quit all other commitments, even the fun ones, because caregiving is a full time job/emotionally overwhelming. It's actually been a big relief to not have to go do other things on my downtime.
Thanks, Anna. So overwhelming that sometimes, you need the fun things. I wish my Dad would get out more. What he considers "Me Time" and my sister and I consider "Me Time" are two very different things. I think it's hard for him to do things by himself when they used to do everything--and I mean EVERYTHING--together. Don't forget to take care of yourself. Still figuring out what that looks like.
Imogen, reading this triggered memories of my husband and I went through with his mother. She died in 2022 of frontal temporal dementia and for the four years she lived with us, was simply hell. There is no other word for it.
And as you have learned very quickly and painfully, it falls on our shoulders to carry this burden, unless someone is wealthy or very poor. And it is even harder when that person is someone you love so very much. (My MIL and I hated each other, so yeah, that was fun.)
But it is clear to me that you have found a way to take care of yourself, and that's the key to surviving this horrible time in your life. Keep writing, keep editing, keep imagining new worlds. It will keep you sane.
Lastly, when your book comes out in April, celebrate it joyfully and fully. You deserve that moment.
Thank you, Cheryl! The three of us---me, Dad, Sis--got to experience what it was like living with dementia via a workshop held by HoV (Hospice of the Valley) and it was incredibly emotional. The workshop was an hr (I think) but the interactive part was 8mins. The longest 8 mins of my life, but it's all day every day for her. We learned about the different types of dementia and frontal temporal was one of them. For the record, my Mom's subcategory is lewybody--the same thing her own mother suffered from.
"And as you have learned very quickly and painfully, it falls on our shoulders to carry this burden, unless someone is wealthy or very poor." - This. You are so right. We were looking into other resources--including the VA because my Dad is retired military--but she didn't qualify because she wasn't poor enough. Utterly crazy.
Right!?! And what is unsurprising, caregiving overall is not valued in this country, regardless of whether it is children, a sick relative, or a dying mother or father.
They don't! In my state, there's an organization that pays family to be caregivers, but it's through the AHCCS program but, again, she would have to be at poverty level to qualify. <rolls eyes> I think we'd need to move to some European country to get the care she needed.
You are a hero. I am in awe of all you are doing. It’s so hard. Like you, I need silence to write, or a curated soundtrack. I need time, and no interruptions. At the moment my pain is so loud that I’m struggling. My husband is an angel and takes care of everything. I found out this morning that I need a small operation, but I’m relieved because I’ve been messed around by doctors for months with this constant pain. Anyway, I’m proud of you, and I’m proud of me too because we are doing good hard work in very difficult conditions, with no clear end in sight. Sending you lots of love ❤️❤️🙏🙏 Cesca
Thank you, Cesca. And right back atcha! Sending INTENSE healing vibes into the universe for you.
Thank you my sweet. We should keep in touch ❤️🙏
Have been going through this with my parents, who both have dementia. Thank you for describing it all so well. I recently quit all other commitments, even the fun ones, because caregiving is a full time job/emotionally overwhelming. It's actually been a big relief to not have to go do other things on my downtime.
Thanks, Anna. So overwhelming that sometimes, you need the fun things. I wish my Dad would get out more. What he considers "Me Time" and my sister and I consider "Me Time" are two very different things. I think it's hard for him to do things by himself when they used to do everything--and I mean EVERYTHING--together. Don't forget to take care of yourself. Still figuring out what that looks like.
Yeah. I hope you get that tiny house on the land, when the time is right.
Imogen, reading this triggered memories of my husband and I went through with his mother. She died in 2022 of frontal temporal dementia and for the four years she lived with us, was simply hell. There is no other word for it.
And as you have learned very quickly and painfully, it falls on our shoulders to carry this burden, unless someone is wealthy or very poor. And it is even harder when that person is someone you love so very much. (My MIL and I hated each other, so yeah, that was fun.)
But it is clear to me that you have found a way to take care of yourself, and that's the key to surviving this horrible time in your life. Keep writing, keep editing, keep imagining new worlds. It will keep you sane.
Lastly, when your book comes out in April, celebrate it joyfully and fully. You deserve that moment.
Thank you, Cheryl! The three of us---me, Dad, Sis--got to experience what it was like living with dementia via a workshop held by HoV (Hospice of the Valley) and it was incredibly emotional. The workshop was an hr (I think) but the interactive part was 8mins. The longest 8 mins of my life, but it's all day every day for her. We learned about the different types of dementia and frontal temporal was one of them. For the record, my Mom's subcategory is lewybody--the same thing her own mother suffered from.
"And as you have learned very quickly and painfully, it falls on our shoulders to carry this burden, unless someone is wealthy or very poor." - This. You are so right. We were looking into other resources--including the VA because my Dad is retired military--but she didn't qualify because she wasn't poor enough. Utterly crazy.
Right!?! And what is unsurprising, caregiving overall is not valued in this country, regardless of whether it is children, a sick relative, or a dying mother or father.
They don't! In my state, there's an organization that pays family to be caregivers, but it's through the AHCCS program but, again, she would have to be at poverty level to qualify. <rolls eyes> I think we'd need to move to some European country to get the care she needed.
Oh honey. So glad to see you here. I remember you being a caregiver since you started your first Substack. I’m so excited for you and this book!! 👏❤️
Hey CK! Thanks so much for subscribing! So glad to see a few familiar faces over here. 😍And thanks for the book congrats!!
👏🥰🙏🏻