I have moved out.

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after caregiving 24 /7 almost 4 years.. I moved out to other property. I am 1 mile away and still go over to help. husband is on home dialysis and has no other health problems. but is determined to be invalid. he is 59 I am 49.
his family is half an hour away but have offered no help refused to help only help I've got is from my kids in the City 2 hours away. and my son still at home who is 19. hey was just turned 16 when this happened.
it was I shock but I dealt with it.
husband was working full time as a paramedic. I had work full time as EMT.
We we're both firefighters and federalised members of a level 1 trauma team for the country. I had also worked as a CNA.
so I felt we were up to the task.

almost 4 years later my health has suffered terribly. I have no insurance so I go to a free clinic. I am a diabetic and have bone spurs and spine and heels. I handle that pretty well but now I have a torn rotator cuff for the last year.
it's getting worse. no way to get surgery and I don't qualify for Medicaid so I live with it. I get pain medication from clinic non narcotic. because I am a recovering alcoholic. I have 13 years sobriety.

when all of this happened I could see down the road the medical bills and the workload and didn't see where we were going to have any help much to speak of.
I tried for all this time to get my husband to move to our other place.
it is paid for and a comfy home. he did not want to leave the farm which I understand and sympathize with but trying to be realistic.

there have been almost 40 hospitalizations and almost 30 surgeries.
this does not count all the outpatient procedures and 9 doctors and doing all the things for kidney transplant.

many medical mistakes. after 4 days in ICU doing all my husbands care and his dialysis every 2 hours around the clock myself because the nurses did not know how. this was PD dialysis done through a tube in the abdomen.
this was unsuccessful because of a botched surgery even though we didn't know it and we're doing this type of dialysis for 10 months at home. that was done five to seven times a day.

then there was a year in center dialysis that was killing my husband.
I drove him 1 hour to get there and then spend 5 hours running errands or waiting. then an hour back home. I did this in the winter also and at times had to have my son walk him to the car at the end of the driveway which is three and a half acres long. but the snow was so heavy couldn't get out.

I could tell you horror stories but you all know already.

I started a support group at the clinic. then he and I decided to do home hemodialysis. we did our training and seven days.
that was over 18 months ago.
this dialysis is done 6 days a week at home for four and a half hours.
we also do the shots and all the lab work and send it out by FedEx.

I have had a small heart attack. a couple near coma seizures with diabetes.
I finally got to where I just could not go on.

I have tried so hard to get my husband to be hopeful.
he is on the transplant list. but I am completely burnt out.

I read the stories here and if you replace the word parent with the word husband.. it's as though I wrote it myself.

he forgets that I to have lost it all. job friends support systems most are gone.

I tried every day to do things to help him have hope.
he has fought me tooth and nail.

so I finally gave up. many conversations with doctors nurses social workers.
they do not care except can he do his own treatments which he can.
there is nothing in the rule area we live in to help.
I have called everyone and everything I could find.
the only way to get any help at all is to move to town which he will not.

so I am just telling my story a little and I know that he will wait until there is a crisis and expect me to come in and fix it all like I have done.
I do not want to do this anymore. I am exhausted to the extreme.
I am afraid there is so little of me left.
any comments and feedback will be welcome and thank you.

1 Comment

I want to add something. during this time my grandma who was my best friend was getting very sick and dying. I had taken care of her and Grandpa years ago. she raised me she was my mother in every sense of the word. I love her so much. she was very talented and funny and warm and wonderful.
she was deaf most of her life. she was 91 when she passed away. she was buried on her husband's birthday.
she and I would write long letters to each other and she begged me to come and visit at least one last time. I could have gone but my husband was clinging to me. he would create a crisis everytime I tried to go. so I wasn't able to see her. the day before Christmas Eve my sister called to tell me she had passed away. it was a very awful time. I was in shock an awful grief and broke down crying much. my husband ignored me. the only comfort I got was from my teenage son.
I left the day after Christmas and after I had got up and made a huge Christmas dinner for everyone. it was 900 miles I drove each way.
I spent 4 days there. for the funeral. all the family there was drunk and fighting non stop. I drove the 900 miles back.

3 months later my brother who was only 52 and had lived with grandma for over 20 years to help care and support her, had a stroke and heart attack due to many health problems he had. i once again drove the 900 miles to say goodbye
to him. he was on life support and in coma for 5 weeks.

i have not been able to grieve these losses and others.
i still have not been able to unpack the few items of grandmas i brought back.

i am being brutally honest here. i am angry and very hurt
about this. i have been placed in a position to be the "unpaid everything"
for so long. with no concern for me at all. not that I have even asked or expected anything. but to lose my mother and brother like this where is not even any concern. it was the last straw.
just a few months after their deaths, I said something about missing them. I was outside with my husband working on the car. he growled at me.."you just need to get over your grandma dying!"..

I had hardly even spoke about it. and it really hurt because the day he said that was my grandma's birthday.

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