By request, I'm sharing some thoughts and experiences on end of life planning, for us all.
We all have different circumstances. But if there is anything we learn in our lives, it is to suss out the future, estimate our own possible choices, and be prepared. And so we do this a little at a time, precluding ramping up of anxiety, taking small steps, and bypassing future anxiety by knowing we have looked into how things work, and made some choices that, for now, seem to fit us best.
When you speak to hospice nurses, you discover quickly that our endings are often not the Disney Movie of our fantasies.
But we can certainly do what we can to both anticipate the possibilities, and see what we can do to both enhance our health each day, so that we can stand up and sit down (pre-requisites to staying at home) as long as possible, and then do our mindfulness or whatever resources we are most fond of, to digest the possibilities of being in less than our most fond possible circumstances when we grow old, and when we are dying.
When I worked as a Home Healhcare Caseworker, I visited reams of people in bed, in Depends, who chose to live alone and be looked in on twice a day for diaper changes, watch their cats, pull their window by their bed open and closed, watch neighbors walk by, and be in their own space.
It was upsetting to their families, who confused their own comfort levels with the express wishes of their older relative.
It upset a family member of ours when we cared for and lived with an older and sick relative in their home, when our kids were small. It was tough and exhausting, but it gave them one more year at home, and out of an institution, surrounded by the melee and chaos of kids and babies and pregnancy and dogs and cats and life.
Often, as we age, in sound mind, we prefer the imperfection of a home situation to the clinical care in an institutional setting.
In the front apartment of the first home we purchased was a woman with advanced cancer, primarily in bed. She was in a big bed in her living room, looking out across our small town, watching people come and go every day. I would go by in the evenings with my three year old, to get her sandwich out of the frig, made by Home Health Care Aides that morning, and bring it to her, with additional blankets, water, or other things.
Sometimes during the day, my son would go visit her, and we would in warm weather go cut her flowers and herbs, so that the two of them could arrange them on her hospital table, to dry. Then together they would make colorful fragrant sachets.
This was her choice, and she managed it I think until a week or two before her end. To choose the discomforts and difficulties of being alone and unable to navigate around her apartment, over the advantages of a noisy, impersonal institution.
And what we are learning now from the front lines is the vastly deficient amount of staffing provided to institutions, such as hospitals, for when we are dying, or nursing homes for when we no longer can manage well at home.
I think it serves each of us well to relish our days today, relish what we can do with our arms and legs and lungs and all, and use our resources to digest the distress we might feel if we end up in an institution. So that if/when this happens, we can still accept and deal with and even relish the days we are given.
We recently had an old friend dying of cancer, whose big family brought them to a very good local hospital for the end care.
It was upsetting and shocking to them how little staffing there was, how there was not adequate pain meds for them, and how the care and support they envisioned was not the reality at all.
They felt abandoned and without the advantages they assumed they would have.They deeply regretted bringing them there all.
I think when we have a more realistic sense of what our local resources offer, and what they can financially pull off, in terms of staffing, we can better estimate realistically the pros and cons of an institution, while taking into account proximity to an old or dying relative, precluding exhaustion, and the informed tolerance we benefit from during the experience.
In these ways, Visiting Nurse hospice nurses are often well informed and helpful when we are trying to balance the needs of a loved one with our own health.
In fact, many are now realizing, from other's experiences, that the imperfection and difficulty of dying at home does not lack a lot that we fantasize would be provided in hospital. So that if we are very ill and dying, many often choose the home setting when at all possible.
More and more people are figuring out how to re-situate themselves in their own homes, by renting out rooms, saving money, and planning to eventually barter some degree of care for renting out nice, private rooms in their homes both as a way of garnering extra savings, or income and as a way of independently being able to stay home longer.
Combining a person or two coming by briefly to bring you prepared meals, with Home Health Care people coming by to help with toileting, bathing and shopping, works well for many.
The key to this is taking things in hand, and using mindfulness or meditation or EFT or counseling to anticipate possible scenarios that we do not think we would prefer. It is no good to live in fear of something unknown. If there is a good chance we will need to end up in a facility in our old age, or while dying, it behooves us to do what we can to address our fears and anticipations. So that we can live our days fully and with appreciation, knowing we have done what we can to physically and emotionally prepare for that which we might not choose.
"Advanced Directive (AD)
This paragraph (signed and witnessed, and legally binding on family, carers and medical professionals) declares:
“If the time comes when I can no longer take part in decisions for my own future, I want to receive whatever quantity of drugs can keep me free from pain or distress, even if death is hastened.
If there is no reasonable prospect of recovery I do not consent to be kept alive by artificial means. I do not wish to be transferred to hospital and should like to die in my own bed.”
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