Carenote from Tony

December 3, 2019

9:45 AM

Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns.

Caregiver Blues

Now that both of my spouses have died following my 15 years of caregiving, I am feeling depressed and lonely and actually missing my caregiving responsibilities. I feel somewhat useless without any future plans. How do I fill up the hours of time now that my caregiving is over?

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Caregiver Blues

Dear Tony, I was a caregiver for 12 years before my beloved husband died. When he died there was literally NOTHING to structure my day and I was lost until my friends suggested I find a way to use the experience. I volunteer as a "layperson reviewer" at the specialist cancer hospital where he was treated. I read patient facing materials and suggest improvements that will make these documents more relevant and understandable to patients and caregivers. Since I had been a high-level marketing and sales exec before caregiving took over, I often read research proposals with doctors and suggest ways to put together a better business case for funding and ways to streamline patient care and monitoring for these studies. Although my original motive was "just having something to do" I have become a sought-after and valued member of the team as the studies I have worked on are more sucessfully getting funding and approvals from the clinical care management committee. I have found new friends and have been invited to contribute to several national committees on patient data usage and other topics. My caregiving experience informs everything I do and I sincerely hope I have made things a little bit easier for the caregivers who come after me. I'm not just busy, I am giving back to the institution that helped us so much. My volunteer work gives meaning to those 12 years. I know my husband would appreciate how I have recycled our learnings.

Maria Kacandes-Kamil more than 4 years ago

Response to Tony

As a former caregiver, I am available for helping others. I continue going to a caregiver meeting as most quit when their spouse passes. This morning I talked to the wife of a friend, at her request, as the husband has dementia/Alzheimer's. I will be going to spend time with him occasionally since the wife is still working. Your experience will be useful to those who are beginning the caregiver process. This will also fill some of your needs. You will fill useful and perhaps relieve some of that loneliness and useless feeling you are experiencing.

Wilson Haynes more than 4 years ago