A Caregiver Support Program (CSP) Editorial Series

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Dear Fellow Caregiver

 
A Caregiver Support Program Editorial Series

Susie is the caregiver for her husband Jim, a U.S. Army Veteran, and a participant in the Department of Veterans Affairs (VA) Caregiver Support Program (CSP). Read Susie’s letter to her fellow caregivers as she shares how she found support through CSP and the importance of advance care planning.

Dear Fellow Caregivers - Have you talked to your loved ones about advance care planning?. 

I became a peer mentor with the Caregiver Support Program (CSP) in March of 2021. As a caregiver for my husband Jim, and as a retired hospice nurse and administrator, I would like to urge you to take action on a very important topic: advance care planning. Having conversations about what matters most to you and what you do (or do not) want in the event of a health crisis is sometimes difficult. I hope my letter will help you understand why it is so important.

Recently, my niece and her husband had severe COVID-19. He went by ambulance to a hospital in another town where beds were available and was admitted to the Intensive Care Unit (ICU). He was then transferred to a routine hospital bed.

Three days later, my niece’s condition worsened, and she was admitted to the same hospital. That same day her husband was transferred back to the ICU with blood clots in both lungs. Shortly thereafter, his attending doctor came to her room and said she needed to decide if she wanted her husband placed on a ventilator. She called me crying while having difficulty breathing, and asked me “How do I make a decision like that? I don’t know what to do!” We prayed and I sent out messages to prayer partners and family members. The next day, her husband was feeling much better with no ventilator. The doctor said it was a miracle!

Decisions shouldn’t be made during a crisis. If a loved one is dying, that is a time for grieving, not decision making. My husband and I discussed our wishes when we made our wills many years ago. Please talk about health care preferences before a crisis. If you are unsure how to start the conversation or what steps to take, reach out to a social worker or nurse. They can make sure you document your wishes and your Veteran’s wishes using the correct forms at no charge.

CSP has been so helpful, and they have linked me to excellent resources and support. Additionally, caregivers helping each other and finding comfort in others through the Peer Mentor Program has been powerful for me. My lifetime hospice career allowed me to see how important advance care planning is for families. I also learned that everyone should have their wishes written down in an advance directive no matter their age or situation. Once written down you care share your wishes and advance directive with family members and teach them to be prepared as well. My role as a caregiver and peer mentor has given me a sense of urgency to encourage others to have these conversations when things are going well and you are feeling healthy.

Sincerely,
Susie

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