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Caregiver stories

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The unsung partners

Family caregivers are the unsung partner in a patient's care team, yet their enormous contribution to the health care system is often overlooked. As they move through the health care system beside their loved one, family caregivers experience firsthand the gaps in care and poor transitions between care settings. We have much to learn from the experiences of family caregivers.

Caregiver and patient - Make your experience count

July 2016
End of life care at home, with dignity
Jul 4, 2016 9:00 AM

This is where he wanted to be... at home. His wish was always to be at home when he died. His experience in hospitals over the years were sometimes not good. We were blessed with another 19 months together at home. We were given the support of a hospice and had privileges such as a visiting physician when needed, and all other needs during that time.

We did whatever he was able to do with the comfort of knowing that a personal doctor was available anytime should we need him. When his situation became worse, he had oxygen and anything else he needed. His last night, he was in his chair watching TV and I knew he had experienced a lot of heart pain that day, but he never took any medication for the pain, even though it was available to him. He was a strong, brave man who accepted his illness and did his best to live as best he could.

He died that evening while watching TV, in his chair, just as he had wished. I had all the instructions from the hospice as to what steps to take when this happened and this is why my husband died, with dignity, at home. No ambulance, no hospital, no expense to the system. A doctor from the hospice came and then the funeral representatives came (in the middle of the night) and took him to the funeral home. We planned it this way and the system worked for us only because of the hospice and the fact that we were referred to them by some very kind health care workers at the renal clinic, of which he had been a patient for many years. He had many good, caring doctors over the years who dealt with each of his problems but without my help to guide this care, he would never have been able to administer his medicines, nor follow instructions from so many different doctors he had needed over this long period of time.



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