I’ve not been writing blogs because I’ve been sick. I get sick a lot now. That means inability to move, stop of body functioning, including organ function and heart erratic and pain sufficient to keep me from sleeping. Without medication every 3-6 hours I simply can’t keep functioning and after two days of that, I have completely loss of autonomic function, which would lead to death. So ‘bed days’ are like ‘dead days’ as I can’t sleep that long and if I don’t have the body and medication controlled closely, three days, or four max. I have learned over the last three days that I would MUCH rather my diaphragm fail and suffocate to death than have heart or heat problems for three days.
Caregiving stress and abuse is reported at the same percentage of men who say they have ‘masturbated sometime in their life’ – which is 92%. Even in the high end care homes, investigations found that your $6000 or $8,000 a month still ends up with 72-90% abuse of at least 3 incidents. If it is the special wing for dementia, the abuse percentage is always in the 90%+. It is just that no one talks about it.
Talking to someone tapped in about the police they said that the reason no clear instructions or guidelines on what constitutes ‘neglect of care’ or ‘withdrawal of care’ or comes in to give basic training once the disability provision in granted is because of ongoing cases. With so many cases going through the courts, including the euthanasia case at the supreme court level, if a official guideline is created, then it has a knock on effect for all cases as it can be used legally. And domestic violence and abuse in care giving are two different pathways in the law.
So the open dirty secret continues, where coming to work at a facility or coming home after a bad day, with financial problems, having the worst day, it is easy for that foul mood to end up with screaming at the one person who can’t scream back.
Linda and I care about each other. I am facing some rapid and scary degeneration. Linda is working on talking more, because without it there is no way to know what is accidental, what is ‘I just don’t care’ and what is ‘oh, you make me angry, so fine!’ When trying to step over someone or lift the head, the emotion and the pain outcome can make a huge difference. Communication helps, but being in some horrid pain already can skew the view (my view). There really is no simple answer, nor sadly and with some anger, any social support. When care agencies and the police won't print up what IS an acceptable standard of care lest their workers are held liable if they don't do it, and when there are literally 50+ caregivers coming in and out of the apartment a month, abuse will occur. Like the caregiver who found how Fentynal turns sound into pain 'interesting' and so would make various sounds to see how badly it would hurt me. Yeah, paid professional caregiver. Yet, she will not even get a reprimand, and the police hem and shuffle when asked if I should call them about this - which seemed to me a form a deliberate sadism: she crinkles plastic and watches me flinch, "Oh, so that hurts too, fancinating.", she scratches different fabrics, she plays with coins, bangs metal on metal. For a person with Neuropathy, that ended up hurting far more than having a hand stepped on (which after talking to Linda, was accidental, she was not aware she had done it so focused was she on going to work). For us, it was a call of love to communication, yet police files get involved. For the worker...she gets her $40 and moves on. Dr. Hell, in the last stages of ALS, complained about being abused by his caregiver, action was not taken because without clear guidelines, there can't be.
If you leave a child, or abandon a child, don't feed them, that's abuse - outlined in the child abuse Canada law. If you, as beacon workers did 3 times in 2 weeks, leave me naked, without food that day, no hope of food until perhaps the next day, and passed out on the floor (having workers leave while I am passed out has happened so often it doesn't bear even writing down, not 911, not check for breathing just 'my shift is over', I guess, when I come to, they are gone), that is not techically 'abuse' because there is no outlined laws or guidelines for individuals, no matter how dependant. IF you have careworkers, you will end up have a loss of care, withdrawl of care, negligence, etc - it simply hurts a lot more when it happens from those you love and who love you.
Linda is, beyond working full time, caregiving me, training up to 14 new careworkers a week, and doing job applications to improve our life quality and decrease the stress – because when you have ambulance services threatening to send you to collection agencies, as an example of how bad trying to pay for tens of thousands of dollars of medications annually when on a capped unemployment income LESS than the cost of meds, and a 13% tax on everything, there is stress. Time for me, time for Linda, time for the job, Time to come up with whole new plans as my conditions worsen, that’s all hard. This isn’t the TV drama of the week with a giant family and everyone trading off care giving, so no stress.
So now that it is rainy and blowing, think back to a few weeks ago in sunny Port Angeles. I had been trying to go bowling in Port Angeles for a while as there is no 10 pin bowling in Victoria. And I wanted to try out wheelchair bowling. And the ADA means a bowling alley in the US is going to be accessible. So I have lots of little bits, hours here and there, with the things I spent weeks and months planning. So tomorrow, I hope, it is a blog post about wheelchair bowling.
17 hours ago