HomecaregivingFrom the Trenches


From the Trenches — 6 Comments

  1. Wise words, Sue! Hospice stats show that caregivers who, with their loved one opt for hospice care, usually wait too long to initiate it. Judi’s husband Dick was home only one day; my Bob died on his fifth day home. Many of us are reluctant because in our minds it is like “throwing in the towel”.

    I did know Bob wanted to be home when he passed. We set up the hospital bed in the family room where he could look out on to Onondaga Lake. I was fully aware that the hospice nurse and aide wouldn’t be there 24/7. I was fortunate that my older sister and her daughter-in-law flew in from California to help, but the bottom line was that I,as Bob’s care giver and as an RN, knew the buck stopped with me. I was in control of his care, including hygiene and sedation. I would be awake anyway, worrying about pain control and when the end would come.

    I will never forget the day before Bob died I was describing to Josie, the hospice RN, an occasion on the previous day when Bob became agitated, waving his arms at the overhead ceiling fan. “Oh”, she replied, “He was probably waving at the angels!” That remark affected me profoundly; even my sister, who has become disenchanted with religion, was moved. After all, as our last living act on Earth, aren’t we simply preparing our loved ones for their great encounter with our Lord? That thought will always provide me some comfort.

  2. Beautiful post and very eloquently written. I would add one thing, though. When you have “the talk” be sure to communicate your loved one’s wishes to your children or other close family members. When I worked as a critical care nurse, we had patients who ended up getting invasive procedures and life saving measures because this communication didn’t happen, or the decision was never legally written down, and somefamily members disagreed with it. In the words of a physician I knew : “Dead patients don’t sue, but live family members do.

    • Good suggestion, Pat. As for suing family members, Lifespan now includes the services of two social workers who do family mediation when there are disagreements. This is new. I heard them speak at at a GRAPE meeting.

  3. Beautiful, Sue, just Beautiful!

    As beautiful as your message is, I can still see your strength and desire to help others
    with what you went through. You are always ready to help others with your wisdom and experience.

    I pray God’s blessings on you.Blessings

    • Thank you, Sandy. Way back in the mid ’80s I was sole caregiver for my parents because I was an only child. It was uber-challenging and back then I wondered how lay people manage, when I was struggling and I worked in the system. I was going to Alfred University (they ran the BSN program for diploma RNs on John Fisher Campus) and every assignment I could, I focused on caregiving. Up until then, we nurses were told to “support the family” (what did THAT mean? At the time, nothing) and encourage people to talk. I believed caregivers should be treated as if they were patients themselves with health risks that are physical, emotional and spiritual.
      And that put me on this caregiving path years ago. I guess I’m following the crumbs the Holy Spirit has been dropping all along.

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