Daddy, this is it. Being-with my Dying Dad by Julie Saeger Nierenberg. Self-published (c) 2013. http://www.createwriteeneterprises.com ISBN: 0-9919-2070-8. Paperback 72 pages.
This simple, autobiographical volume shares the journey of one daughter with her father through hospice. Julie writes about the real, painful journey of walking with her father through his diagnosis, treatment and eventual admission into hospice. As one person’s story, it brings a limited viewpoint. But those of us who work in palliative care settings or hospice need to reflect on what her story could teach us.
My take-aways included:
Listen for the back story. What was he concerned most about? Being unable to see. Being alone. Not being able to see his wife (in the next room). It’s those “little things” that support a higher quality of life for the patient.
Find ways to help the patient stay involved in the lives of their family and friends. Skype is probably the best way I know to help people stay connected. Grandchildren. Friends. Church. Exercise partners (in this patient’s case), the “Hill ‘O Beans” walking buddies. Being pro-active and at times, an insistent advocate for the patient is a necessary part of helping them feel connected to the important relationships in his life.
If you are the chaplain, be engaged, be involved! The biggest disappointment for me was that there was no mention of the support of a chaplain in their journey. There may have been one (spiritual care providers are essential in the whole-person care of hospice) but either his/her impact was minimal, or the family refused chaplain visits. There was mention of the nurse, social workers and “sitters” but not the rest of the interdisiplinary team. The logical conclusion is that, at least in Tulsa, chaplains are not as prevalent or engaged in whole-patient care. I hope that’s corrected now, over 2 years later.
And finally, Keep telling your story! Other need to hear it! Whether one is a practioner or a family member, we need to hear the ways that lives can be enriched, supported and encouraged as we walk this hospice journey together.
Disclosure of Material Connection: I was provided this book without cost from the author and was not required to give a positive review. The opinions I have expressed are my own. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255 : “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”