Dear CAREing friends,
My mother-in-law (non-PD) died shortly after midnight Friday. We had a memorial service yesterday for family -- just my husband and me, the adult children, the 2 daughters-in-law, a 7-yr-old grandchild who understood, a 4-yr-old who didn't, and a newborn. My husband's father died when he was a toddler, so this turned into a memorial for both of his parents. It was a beautiful, healing, family-ties-strengthening experience. I had the best "deal" of all, 'cause I got to hold the new baby the whole time :-).
My mother-in-law's final 6 hours were peaceful. However, the previous 48 were not. Her condition deteriorated so rapidly, and lines of communication got so tangled, etc etc etc, that we were not able to provide the level of comfort care that we wanted. So, unfortunately, some pointers for your consideration:
If the patient's regular doctor is not available, BE SURE that the replacement understands. We dealt with a doctor who heard "nursing home" and didn't hear "hospice nurse" so he wouldn't increase the morphine dosage.
Be very persistent. When the hospice nurse came back to the room practically in tears, I told Dave that one of us had to call the doc. Fearing my temper (I had in fact YELLED at a student earlier that day), my husband called. That's how we found out the doctor didn't know he was dealing with a hospice patient.
Use voice mail etc cautiously. I left a msg at night for our nurse, called the next noon to be sure she was working that day, and was assured she was on the schedule. True. But out sick. The supervising nurse got to us so fast, once she realized what was up, so fast that i'm surprised she wasn't arrested on the highway.
If your loved one is in a nursing home, ask the staff very firmly to notify you AND hospice IMMEDIATELY if there is any negative change in condition. The CNA's, good-hearted and hard-working though they may be, cannot be relied on for this -- their training is really minimal. We have to rely on the nurses. They need to be addressed individually, given the shift changes and creative scheduling and all, esp at a large NH such as ours. Tell the Director of Nursing and the assistant DON. Tell the administrator. Tell everyone. Institutions react slowly. You need the _people_ on your side.
Find out how the nurses feel about administering morphine to the dying. We had a dreadful experience with one of ours. The order was for doses prn. She didn't feel a dose was needed. We did.
Hospice is wonderful. I can't say enough about everyone we encountered. The bath aid was so kind, and gentle, and comforting, I was in awe. The nurses thought of everything. When they say "call anytime" they really really really mean it. A nurse is always on call. The social worker stopped by before our service. One of the nurses drove at least 25 miles, each way, at 2 am to be with us. BTW, they had warned us that very private people often manage to die alone, and that's exactly what happened.
And that's a load off my chest. Thanks, y'all, for listening.