A Hospice Caregiver, Daughter, and Physician: Lessons Learned (Written September 2009)
My mother died recently after a brief terminal illness as a San Diego Hospice patient in my home. The physician, daughter, and caregiver in me harmonized finally, thanks to lessons learned from Hospice professionals, family, and friends.
1. Just Be a Caregiver: Let the Hospice Team lead and guide you. They have tremendous experience in this, and most of us are truly beginners. You really can trust them. Their gentle, caring ways quickly convince you of this.
2. Limit Your Time in Doctor Mode: Sometimes, a lot of the time, doctor mode helps because it controls your personal feelings so that you can do the tasks necessary to provide comfort and care. But excuse yourself from that doctor responsibility we live with 24/7, retired or not. The Hospice Team is in charge; ask questions, but follow orders.
3. Ethics vs. Patient Wishes: Should you give another dose of morphine? Should you call the Hospice triage nurse? Just be a relative. Remember what the Hospice Team tells you: Call us anytime you feel the need! They are kindly and attentively available 24/7. Every moment is precious for your loved one, and you want to make it as comfortable as possible. Ask your Hospice helper about the morphine or whatever you are considering. But also remember this: What does your loved one want? See everything in that context, and blend in the ethics.
4. Learn Nursing Skills: Some of us know very few valuable nursing skills, like turning and moving patients with a draw sheet, bathing, or assisting with other personal hygiene matters. And some of us are awkward doing this, especially for Mother or Father, or maybe anyone. I found it surprisingly easy once I followed the Hospice caregiver’s ways. Again, the love and concern you feel for the patient trumps all discomfort of the task.
5. Be Gracious: Fatigue and anxiety seep in without warning; it cannot be avoided. Just let the kind, genuinely solicitous manner of the Hospice expert waft over you. There will be frustrations. We live in a canyon that is very hard to find. Even though this and directions are everywhere on Mother’s chart, a pharmacy driver or new night sitter will come from another site without directions. One prescription took four hours to arrive. Bothersome, but this was not a critical medication, and it happened early in our experience. Help them help you; anticipate these simple problems and be patient yourself. You may call them before you get frustrated.
6. The Timetable: Of course this varies greatly from patient to patient, and it is often just an educated guess that varies from one answer to the next. But listen to all of those who are experienced. Some of our night sitters with no medical or nursing degree but lots of experience and talent gave me very good guidelines for noticing decline. Physicians in most fields do not sit with patients over long periods of time. Add this to the fact that there are no timetables for dying, and patients surprise us all the time. We physicians are in that area of unknown that we do not like. Just listen to the experts and go with the obvious.
7. The Hospice Team: I happened to be familiar with San Diego Hospice and Palliative Care (SDHPC), their outstanding physician leaders, all types of healthcare professionals, staff, and volunteers. I kept using the word “angel” to describe each and every one who called or came. Really. There were an amazing number of SDHPC people with whom we came in contact, and every single one was very polite and truly sympathetic. When asked, all said they loved their work. What a blessing for them and all of us who need them. You may not be familiar with the concept of a hospice team — they will explain and give you lots to read and review. It is a unique medical entity from both the professional and personal side of your experience.
8. Take Notes: Progress notes with times, dates, and doses, as well as comments, will definitely help as time goes along. A diary of help and social visits. A listing of services will be appreciated. All of these things help you make decisions and connect to caregivers and assistance you may need. And after your family member dies, you can review the notes for comfort and reassurance that you did the right things.
9. Visitors: It is tough to say no to visitors, especially special people. What does the patient want? What will add to the dignity, rest, and comfort the patient deserves? Of course, closure for everyone should be considered. We asked people early on to visit, especially the toddler great-grandchildren who loved and played and hugged with “Nanny” so much. That was possible the first week of Hospice, but after that the little ones stayed home. As Mother went on a morphine drip and was sleeping most of the time, we encouraged no one to come, but agreed to individual requests.
10. Make Lists: There are many ways to check all the necessary business and personal steps as death seems to be approaching. Lists might include all those who need a call about the patient’s current condition, and again when death comes; some people suggest a phone tree for this. The patient’s business affairs should be organized, especially while the patient can give instructions. Funeral wishes should be known. Check out the Memorial Society of San Diego, a nonprofit for 50 years that secures arrangements with many mortuaries at significant discount rates.
11. Treasures and Things: It was suggested to us that we should close Mother’s apartment while she was with us. We did know she would not return there; she would be with us no matter how long. This gave us a chance to do what she wanted with her clothes (Rachel House), household items, and treasures. It was wonderful going through such things as her high school yearbook, very old family pictures, a pictorial history of our hometown, her Christmas decorations.
12. Be Good to Yourself: As possibly the only medical person (or the chief one) closest to the patient, you may feel you have to be present 24/7. That does no one any good. If still practicing, your burden becomes horrendous. But even those retirees among us have other responsibilities and need breaks. Get night sitters and a baby monitor for your room. Accept help. Realize you cannot be there for every decision and event.
Enjoy this time with your loved one as much as possible. Death does not have to be a failure. It is a passing beyond our ken, but one’s beliefs help in accepting and even rejoicing in this. My Mother was ready at 89; she felt she had a great life and talked about seeing Dad, other relatives, and friends. She wanted to know everything, the truth. This was difficult, but I told her: the diagnosis, the time estimate, the possible complications to be expected. She wanted to be comfortable, but let go. Knowing all this has helped our family since she died. We could let her go; she had graduated!