I had an initial consultation, via Zoom with Annalee Kruger, Author of "The Invisible Patient", and founder of Care Right Inc.

It's one of those days where I am more or less numb, at least on the surface, because it feels like I can't allow any emotion to get near the surface, lest I lose control.

The SLUMS test was administered today to my father by the speech therapist with Home Health, by order of my father's PCP. His score on this basic screening (not diagnostic) test was squarely in the middle of the "Dementia" range. From past records, this is 1/2 of his score recorded the last time it was administered, maybe 2 years ago. 

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Caregivers in Crisis

This one just needs listening to, without explanation.

I'm in a situation where in order to regain any part of my freedom and life, my parents need to go to a nursing home or some place able to care for one person who is "total care", and another fast approaching that level. One needs at least 2 people 24/7 for safe and proper care, the other needs at least one.

However, if neither will voluntarily go, and neither has been deemed "incompetent" or whatever other legal hurdle needs crossing so that POA, or Guardianship can be given to another person (preferably me, as I'm the sole surviving child, and have been careing for them non-stop for over 4 years) then they cannot be forced from their home, and into care. 

Getting a physician and an attorney to perform the needed assessments and move forward with guardianship seems to be, based on conversations with at least 3 attorneys, one physician, and one social worker, harder than getting AOC and Ted Cruz to publicly agree on anything at all. Apparently, the situation needs to be so incredibly cut and dry that any idiot off the street can plainly see the need, which in my mind begs the question, why do we need such "experts" if it has to be clear enough for an idiot to see? 

So then my options appear to be:

1) Just stay and continue as is, acknowledging it is negatively affecting my mental, physical, and emotional health, but continue anyway until I am essentially incapacitated in some way from exhaustion or just snap. At which time, it will be obvious that those I care for cannot remain at home and they are placed, against their will, wherever there is a bed available, be that close to home or across the state, and likely not even in the same facility. Afterwards, if I am able to recover, I may or may not be able to regain control of care and their assets, oh, and depending on the nature of my "break", other freedoms may be called into question and possibly lost... or... 

2) I simply walk away, leaving them at some point unattended, then someone coming through the door (sitter, or police responding to a welfare concern), finds one on the floor, one in a soiled bed, in which case Adult Protective Services is called, they are moved to the next available bed.. (see the point above).

What is there to do? 

I can leave and risk being investigated for neglect and abandonment.

About a week ago, I hit my wall. I realized I could no longer continue full-time, in-home care of both parents at the same time. In the subsequent week, I have made some notifications and requested a tour of one facility, as well as information, suggestions, and/or options from an attorney, social worker, home health, PCP, sitter service, and some family, currently just waiting on responses. 

We become caregivers, often by default and hopefully out of an urge or obligation to care for the person(s). 

What could be the expected initial, if not ongoing, reaction from the one being cared for, when this support system they depend on is removed? 

Over the last 2-3 weeks, due to illness or other reasons, the number of no-call/no-show or other missed shifts from the home sitter service has increased. There have been a couple of new caregivers sent who, while nice, simply do not have the training, experience, or physical strength and mass to perform or assist with the required care for two elderly adults, one of whom is essentially bed-bound, and one a high fall risk + impulsivity + frequent altered mental status. This puts even more of the weight on myself, with even less rest. 

I was able to schedule and attend a festival of sorts, two states away. While it did occur, the preparation for, execution of the trip and return was far from without stress and drama.

Fresh on my unsleeping mind, the struggle finding and keeping paid sitters to help share the load of caregiving such that you can get a modicum of sleep, and perhaps even run errands and other daily activities, and just get some down time for psychological health. Unfortunately, a brand new person was scheduled for 8am today, with no information given to me about her history, experience etc. It turns out its a non-issue because as of 1hr, 30 minutes late, she hasn't called or shown up.