“There have been times that I thought I couldn’t last for long
But now I think I’m able to carry on
It’s been a long, a long time coming
But I know a change is gonna come, oh yes it will.”
A Change is Gonna Come – Sam Cooke
In March 2019 Cindy had her first and most severe seizure, landing her in hospice care. Our living room also became our bedroom at night, as that was where a hospital bed could be placed conveniently for home health aides to visit. Cindy’s brother built a door to access our porch from the living room/bedroom, where I could place her in an adult stroller. I built a ramp to the porch that allowed me to take Cindy out in the stroller when the weather permitted. Since then nothing much has changed in our routine or Cindy’s condition … until now.
Four and one half years into her hospice care at home Cindy is to be discharged from hospice on Tuesday, September 19, the date of our 37th anniversary. Continued decline must be in evidence to stay in hospice, but Cindy already has declined almost as far as possible. Because Cindy worked for the VNA that currently provides her hospice visits, they came up with inventive ways to keep her on this long, and will place her on hospice again when she takes a distinct turn for the worse. In other words, her next placement into hospice will be during her evidently dying days, when the end looms near.
I once doubted whether we would reach our 30th anniversary. I never considered that we would reach thirty-seven years of marriage, or be in the final stage of dementia four times longer than normal, or be in hospice care ten times longer than normal. This period of hospice care with little further decline has been a testament to Cindy’s will to live and my ability to stay sane and healthy in the caregiver role. Yet now a “change is gonna come,” which begs the question of what will happen next.
Some decisions affecting Cindy’s care will become easier. The prospect of her discharge looming over the past few months created tension over what care was needed for her to be in hospice with what care I felt was best overall. I will describe this further in later blog posts, which relates to another change.
New blog content will be coming, after a couple years of mainly reviewing previous content. Cindy coming off of hospice presents some new challenges, but perhaps also some new opportunities in response to those challenges. New thoughts and feelings during this upcoming phase may provide insights to help potential caregivers. I also will start to deliver videos as I have been promising, for both the Stages of Decline series and other topics.
One change I hope will occur is earning supplemental income to our fixed Social Security. I take good care of Cindy, not so much the house or yard. I pick a project that makes a small improvement each year, but for a while now the condition of the house has been one step forward and two steps back, analogous to Cindy’s dementia under my care for the past 13 years. I will share my ideas and progress for earned income and will welcome your feedback.
Finally, pictures of the present do not do the memory of Cindy justice. Future photos will be of past Cindy smiles or our time spent in nature.
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Try to believe me, Kirk. Maybe together we can bring Cindy back from her hell. It is time!
Out of the six comments you just left, plus the email, this is the one I will preserve and address. I requested that you directly observe Cindy before continuing to offer advice. Though you do not live far away you continue to ignore that request. Whether you are right or wrong, to advise without direct observation is at best irresponsible. Please honor my request.
Yes. Agree… again. Sorry to infringe on what is not mine.
My point was not to infringe, but not to infringe without direct observation. There are reasons for that, one of them for your benefit.
Helping people brings joy and releases at least five biochemicals that enhance brain health, but there is a catch. We only get such a benefit from direct, interpersonal interaction. Even if all your advice is correct, even if we heed your advice and it works, it will provide no health benefit to you without direct involvement. So I partly insist on observation before advising, which is only the responsible thing to do, for your sake.
On the other hand, to the extent that your advice may be wrong, it is wrong because of your fixation on fear. I have tried to explain multiple times why fear is not a factor in Cindy’s decline, not just unlikely but impossible, yet it just does not sink in with you. Maybe it’s a problem with online communication and if explained in person you would understand. I am done with trying to explain online.
Giving wrong advice can be dangerous, it might lead to a person doing precisely opposite of what they really need to do, and then blaming themselves for when things do not work out even though it is not really their fault. This is why advising without direct observation is an irresponsible thing to do. Fortunately, I am a thorough person who happens to research, observe, hypothesize and test continually. I am wise enough not to follow the convictions of one voice without validation or observation. Not all people are, though, and advising them from afar could do them harm.
❤️
This is wonderful, Kirk. Losing the hospice income and help is not, but with your creative mind I hope you’ll come up with something that’s very satisfying. Patreon is one thought that comes to mind. I’ve been supporting my son-in-law’s band Patreon account with a big three dollars a month. Stretch that out over years and with a bunch of other folks offering that much and more, it’s an interesting idea.
Thanks Nancy. To be clear, I am not losing income from the hospice discharge, rather the limited fixed income from SS is not enough for sufficient home improvements.