What In Home Care Looks Like

They set up the oxygen machine near the sofa where my mother always sat.  It was a big, brown behemoth that generated pure oxygen from the regular room air.  The technicians showed me how to change the filter on the back, which needed to be done once a week.  They showed me where the settings for 3 liters was, the appropriate amount of oxygen for my mother.  She would need to be on the machine at all times, they said.  They installed a many foot long tube on the machine so that she would be able to go anywhere on our tiny first floor.

But not upstairs.  My mother couldn’t have walked up the stairs even if she’d wanted to, based on her experiences at the hospital.  From now on, she would sleep on our sofa in our living room.  The Hospice people suggested a hospital bed, but my mother refused.  She told them that she was afraid that once she got into a hospital bed at home, she would never get out.  She was fine with sleeping on the sofa.  I promised that I would make up a nice nest for her with sheets every night.

Not going up the stairs also meant that my mother would no longer be able to take showers.  The Hospice people gave us special equipment for her to sponge bathe herself in our tiny half bathroom on the first floor, including a powder that would clean her hair without needing to use shampoo.  Her hair now resembled a close cropped military cut, so a little bit would go a long way.  My mother wasn’t particularly happy about this part of her new living arrangements, but she quietly accepted it.

We were given the numbers of a social worker, a counselor and a nurse.  The social worker and counselor would work with my mother, and us kids, to help us learn what to expect as the weeks wore on and my mother’s condition worsened.  They would also try and help us prepare for the inevitable.

The nurse would come out weekly and check on my mother’s condition at home; my mother would not have to leave the house again.  She would obtain prescriptions from our GP and deliver the drugs personally when she visited.  She would also come by if we needed her during the days, or be available by phone at any time for questions.

We also requested to be put on the waiting list for respite care, so that I could have a few free hours on some weekends to grocery shop or meet a friend for lunch without worrying who was watching my mother.  My mother also asked for the information on Hospice recommended house cleaning services so that I wouldn’t have to worry about washing the floor or scrubbing the bathrooms when I was supposed to be caring for her.

I signed lots of papers.  I witnessed my mother’s Advance Directive, specifying that she wanted no extraordinary measures to prolong her life.  I signed the Hospice paperwork that designated me the next of kin and the primary caregiver.  I signed the papers that put our tiny townhome jointly in my mother’s name and my own, as well as those that did the same to her checking account.

I made up lists to hang on the wall of what medications my mother was taking, and when she was set to take them, so none of us would miss a dose of anything.

The Hospice people gave me a huge binder meant to help me keep organized and keep notes of every visit of every health care worker.  It contained the number for the hospital supply company, just in case we needed things later like a bed or a portable commode or other things that I couldn’t even imagine.

Included in the binder was the three page list called “Signs of Impending Death.”   I skimmed it for the first time the day after my mother came home from the hospital, and was surprised to see a few of her symptoms mentioned on the list.  I made a mental note to watch for swollen ankles and blue feet, as well as conversations with those who had already passed on.  When we reached that point, I would know to be afraid.

I wondered when that would be.

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