Caregivers In Crisis

Initial consultation with Care Right Inc

I had an initial consultation, via Zoom with Annalee Kruger, Author of "The Invisible Patient", and founder of Care Right Inc.In the absence of significant assistance from family, with the struggles and dearth of competent, consistent and affordable in home care, at the level required for my two parents, feeling like I have exhausted local assets, and weary of fighting everyone to get assistance as well as just being heard, I downloaded this audio book, and within 2 chapters decided I would call to engage services. 

All Words & No Action

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.It seems there are plenty of offers to talk; however, no offers to actually perform any actions that lead to true change. Talk can be helpful and valuable, but only if it eventually leads to action, which seems to be conveniently absent. So once again, I am the only one willing to do anything which leads to change. It may not be much, but it's something. So I emailed the last attorney I spoke with, updated with information that a mental status screening tool had been administered to one parent, and based on that result, I had at least verbal confirmation that the PCP would be willing to support an effort to gain guardianship. My request to the attorney was to schedule a call or meeting and go over options, chances of success, and if worth proceeding, then how to approach getting a similar appropriate screening on the other parent, how to approach the PCP and Home Health for documentation of the screenings and any other assessements, in what form, any particular verbiage or topics which need to be included.  I don't want to be going round and round, I want it to be: I need X, Y and Z, on paper, including these topics and issues etc. Then, once again.... I wait.

Results of "SLUMS" test - Father

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. It has been quite the ordeal pushing the PCP to acknowledge my observations and concerns, despite my background, training and licenses (This is exactly why I went back and got a nursing degree and license, if the physicians won't listen to an RN, with BS in Psych, who used to adminster neuropsych testing for a living... imagine how dismissive they can be of people with zero medical/health training).The Speech therapist indicated she would pass the results along with her observations back to the PCP, and surprisingly within a few hours, but definately the same day, I got a call from the PCP's office that he had the results, and based on that would support my efforts to gain guardianship. There's a bit more to the story, especially as relates to Mom as well, but, you have to listen for that.As always, if you would like to have a conversation, especially that I could record and publish, keeping it anonymous, drop a line at the email or snail mail below.
caregiversincrisis@zohomail.com
Caregivers in CrisisPO Box 115Harrisburg, AR 72432

Explaining the green light, and carrying two burdens

This one just needs listening to, without explanation.

Basically, I'm screwed. Trapped into full time caregiving by "the system"

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).So. I ask you. If we are to care for ourselves and seek help, but everywhere we turn to ask for help: attorneys, doctors, social workers, home health, sitter services, family..... no one is willing to step up and actually..... help...
What is there to do? 
I can leave and risk being investigated for neglect and abandonment.I can stay until I physically and or mentally break, or one of these so-called experts, who supposedly have the authority to actually help, can grow a pair and actually help. 

Progress following decision to regain my life.

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. It has also become apparent that I will very likely need to seek legal guardianship, and so I am beginning to do more documentation of incidents, conversations, and even videos that objectively and unambiguously depict both parents' current state of mobility, ability for self-care, and mental status/decision capability. I have no illusions; if I proceed with seeking guardianship, successful or not, this is possibly a nuclear option, especially with my father, further damaging if not destroying our relationship, but it must be done. 

Can caregiving, become co-dependency, and if so, what happens when it ends?

We become caregivers, often by default and hopefully out of an urge or obligation to care for the person(s). 
However, is there a danger of this becoming unhealthy for one or all, and if so, what happens when that is finally realized, and the caregiver, needing to care first for her/himself, has to back away a bit or totally?
 Is there a parallel that might be instructive from the addictive world, with the caregiver playing the part of the enabler/co-dependent person? 
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? 

The Decision

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. One night, it just clicked. "I'm done. I can do no more; this cannot continue."I was glad that it "clicked", as opposed to my snapping. But, while it won't be immediate, or peaceful, or without guilt and regret, it must happen.After a bit over 4 years, my parents simply cannot remain at home; the quantity and quality of caregivers to provide 24-hour care, with at least two sturdy, well-seasoned people during the day and at least one at night, just does not seem to exist. Well, perhaps it does, but it would require becoming the HR department myself, finding and vetting the caregivers, and having to pay 2-3 times as much to have a chance of enticing and retaining them. In order to protect my parents, myself, and their decades-long accumulation of assets, for this very purpose of caring for them, this is the last option. 

A weekend away...

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.Since I would be away, and we do not have adequate coverage from sitters 24/7, in order for my parents to be cared for, I was able to arrange respite care at a local nursing home. Not only did this allow me to get away (for the first time in almost four years), but it gave an opportunity for some professional, objective nursing and physical therapy assessments to be done and documented. caregiversincrisis@zohomail.com

Sitter Struggles

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.So, what is it like when despite a contract, one has no idea who will show up, if they will show up, and what kind of mood they may be in. caregiversincrisis@zohomail.com