Monday, September 26, 2011

Wheelchair Bowling and upcoming attractions

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.


SharonMV said...

Dear Beth,
I'm so glad to hear from you. So sorry that you've been so sick. I hope you get your bowling trip. Denni & I have our times of just too much stress, not enough money & too much sickness. Sometimes the result is a screaming match - not good for either of us. Sometimes I don't have enough energy to scream back or the concentration to argue. I know it's not the same as what you & Linda are going through. You are both dedicated to keeping you and your love alive. I hope you have a good trip, that you are able to have fun and that you & Linda have some time to relax & just be together.


GirlWithTheCane said...

Glad to hear from you...hope the bowling trip goes.


wendryn said...

I hope you get to go bowling! It's good to hear from you again.

Neil said...

Nice wheels in that photo from Port Angeles. But I think the photo below shows nicer wheels. Great braid you had in the bowling photo, too.

Financial stress is something you really don't need right now. But as long as you and Linda argue _with_ each other, and not _against_ each other (argue for the common good - does that make sense??), I'm sure you'll be okay. You can be angry with Linda and still love her, you know.

I'm sending positive energy about job applications for Linda; I hope it works!

Talking to each other is sometimes hard (in more ways than one, I guess...), but please keep communicating, and keep hugging.

And I'm SO glad that last post wasn't THE last post. That would be a terrible way to end this blog.

Love and zen hugs,

Kita said...

Hi Beth, so glad to hear from you again. I must admit, I was (slightly) worried, but I'm glad you are back! I hope that screaming matches for you and Linda are very very few and I hope that the good days are many. Wheelchair bowling is so much fun! Sometimes I get contact with my daughter and we go bowling, its good times. Especially when I win, of course..

take care and be blessed :-)

Baba Yaga said...

Open dirty secret is about right - so open that everyone fears it (sooner or later, that'll be us, and in the meantime, it's friends and relations, whom we don't adequately know how to help), but so secret that a person at the end of his coping power can say anything but, "I'm scared of abusing/ have abused the person I care for", and hope for a useful response. And so secret that most care/health workers are never taught to recognise their own potential to become abusers - even though power differentials and hierarchical thinking are built into the systems within which they work.

And speaking of systems not working (!), 14 new care workers in a week? Even working as much as a team as you can, burnout on that kind of thing alone - never mind how many different 'sorts of thing' you have to contend with - must be very close for both of you. Your illness seems almost less of an enemy than the people supposed to be helping you.

I'm sorry the progression keeps progressing for your worse. And sorry the heat goes on - wish you coolth and greater comfort.

Kate J said...

Difficult for Linda, awful for you, but I'm so glad you're able to work on things together, glad that you still have each other - when you've been literally abandoned by your own 'family'... I still cannot understand how they could do that, turn their back on their own daughter, however much they dislike your 'lifestyle' or some of your views.

I know that a 'virtual' family isn't the same thing at all, and that we all no doubt live hundreds or even thousands of miles from you, it must be better than nothing. You have friends, who do care, even if we can't offer any actual 'care'. Seems some of those paid 'carers' don't offer much in the way of care either. To be abused by people paid to 'care' for you is appalling. Some of it may be due to ignorance, lack of training, pressure to get on to the next client... but most of it IS avoidable, IS unacceptable and some is downright cruelty. I'm sure some of it at least must be notifiable and perhaps criminal.

I do hope you and Linda are able to continue to work together, to give each other the comfort and support that you both need.

With love. And peace.

Lorna, Bob and Liam said...

I'm sorry there is so much pain and fear and loss in this journey, for both you and Linda. You are both trying to cope with unimaginable pressure, and sustaining a positive relationship is a daily - hourly - minute-by-minute accomplishment under insanely adverse conditions.

It is a testimony to both of you that you manage to keep trying.

Blessings to both of you when you succeed, and heartfelt support for when you are challenged.

Lorna, Bob and Liam

SharonMV said...

Dear Beth,
Thinking of you & Linda - hoping you two have had some time to just be together, hold hands,whisper a secret, hold each other. We have to snatch what little bits of love we get and can give.

wishing for some fun for you two as well.

Love, Sharon

Monkey D. Luffy said...

Wow!! i never know that this sports is getting to be famous! well wish that this Wheelchair bowling competition will be acknowledge by the government..

Raccoon said...

I'm glad to see this post, as the last one kind of worried me.

I do understand some of what you're going through -- I've seen a little of it from both sides of the equation...

I'm looking forward to your post on bowling. Did you know that they make contraptions like this ( )?

Elizabeth McClung said...

I haven't slept but 2 hours today, odd that I sleep for 3 days straight and now I have insomnia again - the same time things are hurting on the Linda front. I had a visit from the police, thanks to someone who didn't email me to even let me know.

The new caregivers are not working out, it has been a month since a shower, or assisted one, same for helping get dressed, and worse yet, same for exercise and food - I am not hungry or for some reason, for a week, this week, I have eaten 5 meals, in total. I am freezing, often in shock and my heart exploding and run amok, and yet I go on, as is the way of things, to go on.

Lene Andersen said...

Yup. I have a permanent neck injury courtesy of a care worker who I'd complained about for months, yet the agency did nothing. After the injury, she was transferred to a different location. Not fired.

I once talked to someone who was the closest thing to an organization that could help. They told me because I am older than 18 and younger than 65, I fall through the cracks. There are laws about child abuse and elder abuse, but the rest of us? Nope.

I'm so sorry that you're this sick. It must be so hard for you and for Linda. Trying to find each other in the spaces between the stress is so difficult.

I look forward to seeing the wheelchair bowling trip!