First, to set everyone’s mind at ease, no one in my life has a terminal diagnosis. Sadly, it seems that most people when they hear the words “palliative care” think that it is the equivalent of hospice care, but it is not. Hospice uses palliative care services with those who are experiencing their final months of life, but palliative care is available to anyone of any age and diagnosis.
Palliative care is a team-based, multidisciplinary approach to managing pain. Frustrated by the poor pain control following the compression fracture and subsequent vertebral collapse that Grandma had last fall, and the loss of appetite, weight loss, and increase in a-fib that followed, we managed to get a referral to the palliative care practice in March.
We are blessed to be working with the amazing Sister Hermie. I know in some places all nurses are called Sister, but Sister Hermie actually is a Catholic sister. I’m not sure what order. She is originally from Africa, but is working as a nurse-practitioner specializing in palliative care here in the US. She is open and engaging, with a lovely smile and ready laugh. She manages to get the medical information she needs by asking questions within the context of storytelling. Even Grandma, who is endowed with a natural New England reserve, is charmed by Sister Hermie!
We are so grateful for Sister Hermie’s care and expertise. She immediately added a medication to treat nerve pain and the improvement was noticeable in the first 24 hours. Grandma has been able to go down to the dining center with her friends on a regular basis, to go on short shopping trips, and to eat better and gain weight. The pain relief has afforded the opportunity to move forward with physical therapy, which makes her stronger and more functional, although she has also had to accept that she will never be able to do some of the things she used to do prior to the break. She has started to add massage to the treatment mix, which will be especially helpful when the physical therapy treatments end.
While the pain is better controlled, it is not eliminated. There has to be a balance between pain relief and the ability to function. It’s not helpful for her to be pain-free but too drowsy to do anything. Still, she is so much better the last two months than she was in the six months prior that it feels like we have Grandma restored to us.
Thank you, Sister Hermie!
Unfortunately, palliative care is not being fully utilized. Even many of the medical professionals in our community don’t know that it exists, so they don’t request referrals. We had to research it ourselves and then ask the primary care provider for the referral, but it has been worth it. I encourage anyone with a loved one who is dealing with chronic pain, whatever the cause and whatever their age, to look for a palliative care specialist, if their current pain control regimen is not sufficient.
8 thoughts on “visiting palliative care”
As someone who has dealt with chronic pain for years, thank you for writing about this. It must be talked about.
Thank you for reading and commenting. I hope that you have been able to find a regimen that helps you to deal with your chronic pain. I know palliative care specialists can be hard to find in some areas.
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My Mom was in Palliative care for 4weeks and my Mother in for two weeks.It was Such a blessing in our lives.
Relief from pain is indeed a blessing. I’m glad your loved ones were helped by palliative care.
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Thanks for clarifying this definition. I’m glad massage and physical therapy are being used and not just medication. It’s great if these can be covered by insurance.
The physical therapy is covered by insurance and involves not just exercise but also additional modalities like hot/cold packs and electric stimulation that she can do at home. Massage outside of physical therapy is not covered by insurance but her senior residential community has two affiliated massage therapists available at reasonable rates. Palliative care also has nutritional support available, although we had previously had some services through home care. There is also a chaplain available for spiritual support.
My dad used palliative care in the last months of his life. It really is wonderful. I’m happy to hear about the “little” things it has allowed your Grandma to do, which aren’t little at all.
Thank you for sharing your experience, Ellen. We really do feel that palliative care services have given Grandma back to our family. As you say, we do tend to take the little-but-not-little things for granted, until they become difficult or impossible to do.