lindyazmn
Member
- Joined
- Dec 6, 2020
- Messages
- 10
- Reason
- Lost a loved one
- Diagnosis
- 05/2020
- Country
- US
- State
- AZ
- City
- Tucson
Hi everyone. Life has been so crazy that I've only been able to scan the posts. I have been educated, inspired, and comforted by many of your posts. But I have a few moments of quiet and decided to write. Mostly just random thoughts and reflections.
My husband was diagnosed on May 14, 2020. He's in the final stages now. We were never lucky enough to experience any of those plateaus. It's been a fast and furious march. Hospice has been a godsend. And yesterday, he finally relented and was willing to try morphine. (It worked wonders and he asked for a second dose during the night!) I think that shifted a lot of things for both of us. He just doesn't have much fight left in him. And while I dread life without my beloved, I don't want him to suffer. That's how I feel right now. In five minutes I could well be sobbing in a fetal position again.
I've been thinking and processing a lot about my husband, about our life together, about my life alone, etc. (see "fetal position" above). I've also been thinking a lot about the caregiving experience. Someone here posted about honoring and grieving the relationship that existed (and still exists) before the caregiver/care recipient dynamic became the daily reality. So wise!
And caregiving is hard. It really is. Body, mind, and spirit. It's the hardest thing I have ever done. And it's incredibly complex. Some days I feel like I will absolutely lose it if I hear one more well-intentioned social worker (who has never been a caregiver), family member, or friend tell me I just need to: a) get more help, b) make myself a cup of tea, c) go for a walk with a friend, d) do yoga, etc., e) another unhelpful and ridiculous platitude, etc. If only it were that simple, right? My concern for my husband and his needs are all consuming. What I need is a magic wand to take this horrific disease away and give me back my husband and the life we planned together. Or a million dollars would also help. Short of that, it's just hard to do this and it's hard to move toward the end. There isn't a fix. My body hurts, my thoughts spin, my heart aches. I try to plan ahead, but this disease is unpredictable. My husband has a fussy day followed by a mellow one--I don't know what he needs/wants until that moment. My shoulder and wrist ache and I can't sleep one night, and then I get that critical amount of ibuprofen at the right time and I sleep like a rock the next. Home health aide quality is spotty. Private insurance and Medicare coverage are inadequate. Extended family dynamics are complicated (right?). Covid-19 has necessarily limited visits from friends. And the very broken long term care system is firmly on the backs of unpaid and untrained family caregivers. I'm exhausted. That's all for now.
In solidarity with all of you past, present, and future caregivers.
My husband was diagnosed on May 14, 2020. He's in the final stages now. We were never lucky enough to experience any of those plateaus. It's been a fast and furious march. Hospice has been a godsend. And yesterday, he finally relented and was willing to try morphine. (It worked wonders and he asked for a second dose during the night!) I think that shifted a lot of things for both of us. He just doesn't have much fight left in him. And while I dread life without my beloved, I don't want him to suffer. That's how I feel right now. In five minutes I could well be sobbing in a fetal position again.
I've been thinking and processing a lot about my husband, about our life together, about my life alone, etc. (see "fetal position" above). I've also been thinking a lot about the caregiving experience. Someone here posted about honoring and grieving the relationship that existed (and still exists) before the caregiver/care recipient dynamic became the daily reality. So wise!
And caregiving is hard. It really is. Body, mind, and spirit. It's the hardest thing I have ever done. And it's incredibly complex. Some days I feel like I will absolutely lose it if I hear one more well-intentioned social worker (who has never been a caregiver), family member, or friend tell me I just need to: a) get more help, b) make myself a cup of tea, c) go for a walk with a friend, d) do yoga, etc., e) another unhelpful and ridiculous platitude, etc. If only it were that simple, right? My concern for my husband and his needs are all consuming. What I need is a magic wand to take this horrific disease away and give me back my husband and the life we planned together. Or a million dollars would also help. Short of that, it's just hard to do this and it's hard to move toward the end. There isn't a fix. My body hurts, my thoughts spin, my heart aches. I try to plan ahead, but this disease is unpredictable. My husband has a fussy day followed by a mellow one--I don't know what he needs/wants until that moment. My shoulder and wrist ache and I can't sleep one night, and then I get that critical amount of ibuprofen at the right time and I sleep like a rock the next. Home health aide quality is spotty. Private insurance and Medicare coverage are inadequate. Extended family dynamics are complicated (right?). Covid-19 has necessarily limited visits from friends. And the very broken long term care system is firmly on the backs of unpaid and untrained family caregivers. I'm exhausted. That's all for now.
In solidarity with all of you past, present, and future caregivers.