Extreme Caregiving Struggles

[anniegirl]

Admin edit: This post originally contained a post brought over from YWBB by another poster, who has respectfully requested that her specific words be removed at this time. Our goal is to respect the healing journey of all members here, so we are editing the post that contained her words. Thank you all for your understanding.

[lcoxwell]

Thank you for sharing this.  I can relate to so much of what she described.  Being a long-term, extreme caregiver is exhausting on so many levels, both physically and emotionally.  I, too, remember living from one test result to another, looking for any hope of a treatment that would keep my Kenneth with me, just a bit longer.  I also remember the feelings of despair, each time the doctors and medical professionals told me there really wasn't any hope.

 

I remember the heartache, when his cardiologist told me there was no hope, that he was nearing the end, and that it was sad, really, that they were having to take him piece by piece (Kenneth had multiple amputations).    I remember the sadness, when I was informed that he needed a kidney transplant, but that he wasn't a candidate, due to all of his other medical conditions and the fact that he was a smoker.  I remember watching him fade away, a little more each year.  I remember being so sure, during those final three years, that he would not make it to the next year, but there had always been a little bit of hope, because he kept hanging on.

 

About three weeks before he died, I took him in for dialysis.  I knew in my heart that he was truly dying at that point, that we had nearly run out of miracles.  He was in bad shape at that point.  Three of the four workers at the dialysis center that day spoke with me privately, and they all three told me that he death was imminent.  Two weeks after that, he decided he was done with dialysis and done with hospitals and done with doctors.

 

That emotional roller coaster still plays through my mind on a regular basis.  All the ups and downs, FOR YEARS, are on what seems to be a permanent playback loop in my head.

[robunknown]

Thanks for posting. It hits home.

[anniegirl]

Leslie, the loop. I remember it. It will stop someday. But I find that sometimes, when I am upset about totally unrelated things that loop will try to reassert itself. I can stop it now. It doesn't own me anymore.

 

robunknown, when I found SemperFi's post, I hesitated to repost it. She hasn't been an active member for a long time and I didn't know if I should share it without her say so, but it's so powerful and we caregivers need to hear each others' stories - imo.

[Shelby]

So much truth in this post.

 

I stopped going to Rich's and my primary care doctor a couple of months after he died. I just couldn't take the pitying looks and being there without him was just wrong. Now my new husband, Joe, and I are back with that doctor through a weird series of events. Just on Monday, when we were in thinking Joe had strep, I wondered if it will ever not be weird for me to be there. And by weird, I didn't just mean strange. I meant heartbreaking, losing hope, fighting the inevitable and all of the visceral reactions that go with those things.

 

I'm five years out. Every time I think I'm done, the grief or one of its ugly counterparts, sucks me back in.

[ATJ]

Deleted!

 

[anniegirl]

@ATJ, Phew! Pleased you approve. This was one of the first posts I found when I went looking through the YWBB archives for caregiver posts. I am pretty passionate about the plight of caregivers given my own experience both with LH and watching my mother struggle with my Dad in years following LH's death.

 

I hear you about anything medical. I had a wonderful DR who completely understood my need to be a total partner in my own health because LH's medical experience was fraught with misdiagnosis and incorrect treatment (both of which probably contributed to his dementia so early in the game) but I moved to Canada just past a year out and I have never found another health professional I trust as much. Canadian doctors are quite bossy. You can imagine how well that goes over.

 

Anyway, this post speaks and if I saved nothing else from the old board, I felt the need to save this. I am glad you are okay with it.

[ATJ]

Deleted!