This movie depicts some typical dynamics, although my experience was quite different. Worth a look: "Nothing to Do" youtu.be/ka1ZnpfY50g
While my Mom received essential services through home hospice during the seven weeks before she died, there are cases where the patient outlives the expected six-months eligibility criteria. One article in USA Today, titled "Taking Too Long to Die" (Gluck & Payne, 8/1/17) featured a man who had to move in with his adult daughter when he passed his six-month mark. Hospice parameters did not allow him to stay on the program and they requested his breathing equipment back. What a dilemma!
Hospice is a word that I whisper, as it conveys my Mom's final chapter. Her story is ending at home, where she wanted to go after 6 weeks in physical rehab, following a series of illnesses. Only now she associates "home" with Kansas -- and her parents (long since departed). The Connecticut house she's lived in for the past 57 years is merely holding her fading physical form.
For the past month I have been consumed with taking care of "B", working with nurses, aides, a social worker and spiritual counselor. Most of my experiences require more reflection, but the following points are clear even now:
~ Hospital beds make it much easier for the patient, the caregivers, and visitors. Being able to adjust the bed higher or lower -- and elevating the head and foot area provides comfort for someone who is having trouble moving around. The air mattress helps keep the patient comfortable and helps avoid pressure sores. Note: My bed came without sheets, which need to be longer, like those in college dorm rooms. I ordered some from Amazon.
~ Partnering with the nurses and aides helps you learn to adjust your own thinking, as a caregiver.
~ Your loved one is in charge. As a caregiver, be prepared to dance to different tunes, even within one day. Decisions about eating, drinking, getting out of bed, etc. are always made in light of what signals the patient is giving. Georgian ~ September 3, 2014
Caregiving Ideas: Apply soothing ointment to temples and hands. I like Badger Lavender & Bergamot Sleep Balm. www.badgerbalm.com. Use dancer leggings and cotton socks in place of pajama bottoms to keep your person warm. Even in warm weather, a space heater may be needed while changing sheets or doing other caregiving tasks.
More Ideas: Use a long body pillow as a bumper next to bed rails. Split old-fashioned 'duster' housecoats in the back to make it easier to change bedclothes. Video cameras can let you view your person from the yard or remote parts of the house. Mine cost about $100 and came with an app for my iPhone. Educate yourself about end-of-life stages and symptoms. Your Hospice Team will give you information, and there are also websites, such as http://hospicepatients.org/hospic60.html . Keep notes! It will help you identify trends, and your Hospice Team will appreciate being able to check on events since their last visit.
For more information about my experience: My Mom died after seven weeks of home hospice care. I am open to sharing with anyone facing a similar situation. You can email me: gflussier@snet.net.