Author Topic: 14 years of support, 1 year of caregiving  (Read 1433 times)


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14 years of support, 1 year of caregiving
« on: January 28, 2016, 06:54:17 PM »
when I married my husband I knew he had Cystic Fibrosis, and I knew what I was getting into.
3 years ago he go a lung transplant and I thought finally, he can start being a real husband.
Then I got stage 3 breast cancer and the reality hit me: he doens't know how to take care of me.
I took care of myself for 18 months of treatment. The day I came home from my double mastectomy, he went in with a severe pneumonia, so I was home alone with 2 kids, with my arms pinned to my sides.

Last January 4th, he went back into the hospital, where he lived for one full calendar year. I visited EVERY single day, I changed diapers, I dealt with every fluid known to man. he died on January 3rd, after being in the ICU for 4 months.

I'm a mess. A new widow, but been alone so so so long....


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Re: 14 years of support, 1 year of caregiving
« Reply #1 on: January 28, 2016, 09:34:57 PM »

I seem to relate to so much of your story.  My first husband had a genetic neuromuscular disease and I knew he would have a limited lifespan.  But...I fell in love with him anyway...I assume it was similar for you.  I didn't know how long I would have him.   He stayed fairly healthy, but needed care-giving his entire life.  In the end, he died of respiratory failure, as expected for his disease.  The last 16 months of his life were very challenging, with ICU stays and the need for a ventilator at night.  In the end, he got sick again and decided he had had enough.

When I came home from the hospital the night he died, I sat on my bed and realized I was living the day I had dreaded since the time I realized I was falling in love with him.  He was dead and I was sitting there without him.  He was no longer struggling and suffering, and for that I was grateful, but I had also lost the man who had been the center of my life for over 18 years.

I'm sitting here trying to imagine your cancer diagnosis, surgery and treatment.  I was diagnosed with cancer just weeks after my second husband died and went through surgery with limited support.  Fortunately, I didn't have chemo, but I still have the fear that my cancer, which was Stage 1 but very aggressive and chemo resistant, can come back at any time.

You have so much to cope with right now...but just know that there are people here who will understand different aspect of what you are facing, such as raising your children without him.


Life is short.  Love with all you've got. 

Barry 11/29/55-9/22/09       John  1/16/57-1/11/14

Empathy  Developer  Responsibility  Adaptability Connectedness


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Re: 14 years of support, 1 year of caregiving
« Reply #2 on: February 04, 2016, 11:04:44 PM »
There is so much to your story that I can relate to. My Kenneth was diagnosed as terminal with a life expectancy of less than a year, when he and I decided to get married. He spent 13 long years, beating the odds. During those 13 years, I raised 3 of his 4 children (one was an adult) and my two young children, practically alone. I spent more hours than I can count driving him to see just about every kind of specialist known to man, and we made so many trips to the hospital, I was on a first name basis with half the hospital staff at three different hospitals.

In the last five years of his life, Kenneth was in and out of the ICU, had surgery after surgery, and was literally losing himself one piece at a time through multiple amputations. I used to spend the night with him at the hospital, getting up every time he moved or needed anything. Then I would get out of the "bed" (aka the chair that passes for a bed in most hospitals) and drive two hours to spend the day teaching. As soon as school was out, I would drive by the house to check on the dogs and the kids, then return to the hospital for the rest of the night. I cannot tell you the guilt that I feel that my youngest son practically had to raise himself as a teenager, because his dad spent so much time in the hospital during his Sophomore - Senior years in high school.

In the last few months of his life, my Kenneth could not even roll over in the bed, without my help. He relied on me to feed him, bathe him, clothe him, take him to the bathroom, transfer him in and out of the wheelchair, etc. When you said, "I visited EVERY single day, I changed diapers, I dealt with every fluid known to man", my first thought was, "This was me!" I could also completely relate to what you said about being alone for so long, even before your husband died. The truth is, my Kenneth's illness took his mind from him long before it took his body, and I was alone for a very, very long time, even when he was right there in the room with me.

Though I have had my own significant health problems, both before and after Kenneth's death, I cannot even begin to imagine what you must have gone through, having to take care of your husband and your children, while facing your own cancer diagnosis and treatment. I am sorry you have had to face so much, and I hope you can find some peace and comfort here. (((Hugs)))
"The highest tribute to the dead is not grief but gratitude." - Thornton Wilder

Thank you, my dearest Kenneth, for loving me and for giving me the best 13 years of my life.