PALLIATIVE CARE

This October finds me in Hospice Palliative Care. My arthritic knees seized up and I am unable to stand or walk on my own. Since July 25th I have been either in bed or in my power chair. Physical therapy was tried for a month, but proved to do more harm than good to my stiffened knees. I had known for years that I wanted to be under Hospice care at this point, wanting to be kept comfortable but without a team of doctors and surgeons passing me back and forth trying to fix a problem that is not fixable.

Since I am otherwise in fairly good health, and not expected to die in six months or less, I am not eligible for full Hospice care, but I was welcomed into their palliative care program. Two Hospice Palliative Care medical representatives visited me August 31st with much helpful information. My son, Eric, was present at that meeting and daughter, Clea, participated from Maryland via speaker phone. The five of us agreed that this was a wise and well thought-out decision. I got exactly what I wanted. In case of a broken hip or stroke, the plan is to avoid hospitalization and not prolong a miserable existence. Their medical team will call or return to visit me once a month, and are easily available by phone at any time.

The Hospice Palliative Care representatives are in favor of my rubbing CBD oil onto my painful knees, and putting CBD drops on my tongue to help with relaxation and sleep. These over-the-counter medications are derived from the hemp plant, and do not require a prescription. I find both very helpful.

My four hired caregivers are kind, gentle, willing, and eager. I feel fortunate to have good help, though I don’t enjoy the bedridden life. Four times a day, one of them comes in to assist with bathing, dressing, feeding, toileting, and medicating. Now and then, I get a little massage. I am better than most at being patient and keeping myself entertained, but ten weeks in bed is more than enough and the ongoing, long-term cost of care is an issue. I keep looking for better answers and don’t find any.

One problem is how to get an in-home flu shot. Numerous calls have been made to nurses, physical therapists, Hospice providers, doctors, and pharmacists, all resulting in a runaround leading nowhere. I am ready to say forget the darned shot, which I thought I needed to protect my family and caregivers. My more recent thinking is to warn each visitor and caregiver to be protected with his or her own flu shot.

A sliding board was purchased to assist in transferring me from bed to power chair and back again. We use it with mixed results since all of us are new at this. If we can get my butt onto one end of the board while I am sitting on the edge of the bed, then sliding me slightly downhill by way of the board to the chair is the easier part. Sliding from chair back to bed is more difficult because it is slightly up hill. None of the transfer activity is pain free, so I cry out a lot. Any position which leaves my legs hanging free is painful to my knees.

We are all learning. We watch sliding board tutorials and try to get less clumsy at the procedure. But, typically, the caregiver awkwardly scoots me, I yell out in pain because my knees are hanging free, the dismayed caregiver mutters “Oh, Lord!” but continues to scoot me, then I fall awkwardly off the end of the board into a crumpled, whining, breathless heap on the bed, and we laugh.

Some aides decline to use the board, preferring instead to lift me using a transfer belt around my waist, but that system also has its down side. My rib cage aches from the lifting. The caregiver lifts my dead weight of one hundred fifteen pounds, while I desperately hang on for dear life with my arms around the lifter’s back. This results in bruises on my ribs and arms, while the main discomfort is in my knees which are painfully hanging free and useless.

We can never know who our final, most intimate days will be spent with. Relationships with caregivers develop quickly and deeply. My social life has changed dramatically. Instead of my old habit of spending time with writer friends, I am spending time with my caregivers who are an interesting mix of hands-on faith healers, descendants of Indian shamans, witches, and sorcerers, all proclaiming herbal and home remedies.

Two caregivers come from horse farms north of here and know what they would do for my knee joints if I were a horse!  My aides are colorful, delightful, and full of drama. Laughs are plentiful here in my new, bedridden world, easing the moments of boredom. Also, music from my iPad Spotify playlist offers some relief from the suffocating blanket of upsetting TV news.

When some kind soul lifts me onto my motorized chair, I drive it to my personal computer across the room and write another fun-filled story documenting my old age and decline. I hope you will continue to be a reader!

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