Hospice is a wonderful program which is underused either through denial - the patient/your parent is NOT dying or nobody wants to face "the end" which is equivalent to the word "Hospice."
Do not wait. Hospice support is wonderful. Once your parent/patient decides they no longer want to go to the doctors or has been diagnosed as terminal, Hospice is just the program you want. However, just like anything else, you are the advocate for your partent/patient. Make sure the support maintains your parent/patient's dignity and makes your parent/patient most comfortable. If there are personality issues, ask for a change in personnel. It is all part of the process. Knowing, I, as the caregiver, as well as my parent, had 24/7 support by phone and by visiting nurse meant a great deal.
And, even with Hospice, Mom was out of bed, showered and dressed every day, had her hair and make-up done, and was always ready for visitors. I encouraged everyone who knew her to plan a visit so they could be with her before she died. Not everyone showed up, but many did. We celebrated life every time. Children, grandchildren and great grandchildren stopped by often. I took Mom out every day to keep her stimulated. We'd go for a drive to get ice cream sodas, or to large Nurseries and buy plants, small but interesting trees and flower baskets, or just drive around the country-side and stop some place for a take-out dinner or take her shopping in her transport chair or... We'd plan for something and she'd look forward to it. I think looking forward to what the day would bring, knowing we'd do something, kept her going for months longer than her body planned. I recommend this protocol whenever possible. It matters.
And, Always, Always have a portable blood pressure/oxygen level machine handy as well as a thermometer. You can't imagine how often, when you call a doctor they will ask for the readings before they'll make an appointment. Eventually, you'll learn good readings vs bad and make adjustments in your care for the day.
And finally, make sure there is a Patient Personal Life History Form available near the patient and have copies ready for others who work with Hospice. It is so helpful. You won't have to repeat the same information a dozen times a week and others will have "the patient's story" at hand so they can engage them in conversation.
Hospice services include:
- Nursing coverage - monitoring vital signs, medications, necessary aids, equipments and medical supplies -- all free of charge.
- It was wonderful to have someone to call (Day or Night) when Mom's health changed.
- If she needed oxygen, they provided oxygen. If she needed a hospital bed at home, they provided the hospital bed.
- Social Worker - to help with any issues for either the patient or the family
- My mother would not talk to her social worker. She said there was nothing to talk about.
- I, on the other hand, benefitted greatly from her visits. We talked about my take on care, my frustrations and my needs. She was someone who listened to me, non-judgementally, and gave me the opportunity to vent.
- Volunteers - who came and visited with Mom. One was a pastor and the other a friend who would talk with Mom about her travels and family.
- Aides - who came for 1.5 hours a week and gave me some time to myself.
- Hospitalization - if my mother had to be hospitalized, she would bimmediately to a special section for Hospice patients, guaranteeing she would be only be treated for the immediate problem - no wait, no unnecessary tests.
Below is from the Hospice website and gives an itemized list of palliative care initiatives.