left 48+hrs/wk without food,water or meds WHAT can I do-desperate :(

[extremewheelchairs]

This is a copy of the letter i just sent my doctor explaining what has been happening and why my health care has deteriorated so badly and the evidence-the videos i have of their words to me (CCAC) as well as links to sections of the law that they have violated.

I hope you take the time to read it as well as watch the videos.

thank you,
-minna

"I have the right to continued existence even though I am motor neuron 'disabled'".




---------- Forwarded message ----------
From: extremewheelchairs
Date: Mon, Sep 13, 2010 at 02:25
Subject:
Tomy doctor, and copies sent to ALS society Ontario )


Hello Dr. *****,

It is time some truth is to be revealed.

As CCAC only sends you their altered and misrepresnted views via letters and reports, I have nothing else to share except the testimony of myself, that of a MD who has known me for 12 years and let you listen to recordings of the words CCAC says to me in private, which you never hear because their subsequent letters always leave out what they said at my home as well as misrepresent what has actually happened.

This has been going on for a long time with CCAC-the mis representation of what I am like, and what my unacceptable 'behaviours' are, especially when no one has evidence of it, yet my evidence lays in emails and recordings of CCAC case managers humiliating me, threatening me and ignoring my attempts to communicate or participate even in my own care plan (which violates section 5 of the Home Care Bill of Rights - subsection 3 of the Long-Term Care Act 1994 and sections of the Home Care and Community Services Act 1994)

Please allow me to share just the past months actions of the CCAC which no one is aware of, except the nurse who was here to witness the recordings. She has been making frantic efforts to intervene with her agency- and her agency seems very willing to provide the care needed, and in fact stated in their Sept. 10th 2010 email to me that CCAC had "approved" them to offer me nursing services just for this weekend. So now, CCAC is expecting to be asked for permission for weekend nursing, while it is in my service plan to have nursing daily as well as PSW, the Home Health Care Bill of Rights tell that "According to the law the CCAC or agency who provides home care services to you has agreed to follow the Bill of Rights even if they have never made a written or spoken agreement with you. Breaking this agreement is 'breach of contract' under the law". Furthermore it states that it is possible to "sue CCAC or agency [which pulled out their PSW services] for breach of contract" also they are in violation of section 7 by withdrawing my PSW services.
As shown on YouTube - We can't have that! .wmv ("we cant have that"-quoting CCAC case manager) from the day Christa and Vera suddenly appeared to tell me that they cancelled my PSW services 'because no one is willing to service" me-yet the same PSW who worked here offers to come see me, and wash laundry on her own time-that is contrary to what CCAC said in that video as well as their letter indicating the reasons why they canceled the service (interestingly the threats they said to me in person were never brought up in the letter they passed on to you-as my family doctor, and thus the only evidence lays in this YouTube - We can't have that! .wmv.),

As the video clearly shares CCAC managers words that the mere fact of mentioning the hunger strike I WAS on, in Jan. 2009, brought forth the violation of section 7 of the Home Care Bill of Rights "reprisals" I "have the right to speak freely, ask questions and make complaints. No one has the right to take action against [me].... punish [me], or take away services"-which CCAC did the following day after I mentioned that hunger strike,'I lost my chance to sleep in m own bed, to be washed, and my water intake was reduced in half immediately, Yet for over a year YouTube - Sudbury disabled woman says she still isn't getting proper care has been on the internet, while the reporter on this news story, and the other woman as an MPP, have their news report with words of strong condemnation of prior CCAC actions against me, and they have not been 'punished' in this manner, or had their fluid intake reduced in half, denied basic personal hygiene (and rightfully so)-yet it is not only a violation of the Long-Term Care Act 1994 (which governs CCAC) but of basic human rights to perpetuate sleep deprivation, reduce fluid intake in half, and deny hygiene to me- it is even a violation of the UN code detailing the treatment of prisoners of war yet perpetuated by Canadian government health services to patients. It is a criminal offense to withdraw the 'necessities of life' from someone who is dependent on you to provide this. I am to be without food, water, or medications for more then 48 hours weekly. If I was a dog, the SPCA and police would charge and fine the person(s) doing this to an animal. Yet it is acceptable for me why?

All of which are offences to the "Home Care Bill of Rights" as set out in Part 3 of the Long-Term Care Act 1994 [which applies to CCAC]) (and evidence shows they followed through-see email dated: from Christa Halverson to me (attahes below Dr. King's letter of Apr 10th 2010) Although the intended recipient was Vera -my case manager-her boss sent it to me by accident, where she indicates it is "Excellent!" that due to being humiliated, insulted and treated like a child by one of the nurses, whom I requested to not have after he falsely accused me of trying to pull out my PICC line (as stated in YouTube - We can't have that! .wmv), yet all I did was offer to help with disconnecting the lines and flushing, duties which I was delegated to do myself alone a year ago when I was physically capable of doing that. As the video shows, when I tried to type what i was doing, Christa quickly would not permit me to communicate, and stated frankly "yes you did". (again violating section 5 the Home Care Bill of Rights, which states that I have the right to 'be involved at every stage when decisions are made about the services should get". I was not even given the right to speak about what happened, as my services were taken away because I was falsely accused of something I had no intentions of doing, infact the opposite- trying to help as I do with the other PICC line RN and always in the past (clearly if I planned to take out the PICC line it would not still be in my arm),

On my defense has been Dr. King states the following in his emails dated April 9th and 10th:
"I have known her for 12 years and do will not stand back and watch people who acknowlegde they do not understand autism or Minna as a human being , make judgemental comments about her when she is fighting for her life Being disbelived and incorrectly understood is the story of Minnas life"

and

" the compassion she is more than capable of providing to those around her who choose not to judge her."
and
" Non of us are in a position to abusively judge Minna"

Finally, there will be many more videos posted of meetings with CCAC which will show the truth of how they speak to me, and what they have accused me, and threatened to do to me while in the privacy of my home. As well as on the last day, last hours of my daugthers visit in January they also refused to allow her to ask questions not merely as the only family member who has been here to speak to them but also as my power of attorney. In fact they falsely state in this YouTube - I don't Care-CCAC tells my girl in frustration.wmv("I dont care CCAC tells") how the power of attorney is not 'legal' without a phone number -despite the fact that the forms do not require this information to be legal and they will not speak with her anymore. There is a clear tone of frustration when the case manager literally yells out "I DON'T CARE!" as my daugther starts to cry.

The legal action and further media intervention is an option to now seriously consider, as this has been going on for way too long, my health has been compromised to the degree that purely due to lack of proper care I have suffered sepsis several times, pneumonia, been on a ventilator in a coma due to the mismanagement of my home care under CCAC. As you know, these are life threatening for individuals in my health condition.


I have come to trust you to be dedicated and compassionate Doctor, and believe in your willingness to help me live at home, which is my right, and now we can clearly see that it is not necessarily a lack of service providers or me who have created this situation of a government sanctioned 48 hr/wk starvation program I have been placed upon.

With respect,
-minna

That was the best I can anymore do.
I can not speak, and have to rely only on the CCAC to help me with much. I have a Gtube, (nothing by mouth-not medications etc.), to change the diapers, or get me on the commode.
to help me with the ceiling lift so i CAN get into bed.

The sad part is, that ALS society has helped me TREMENDOUSLY to equip my home for the benefit of the workers helping me. With ceiling lifts, bath seats, feeding pump, and a ROHO mattress for the bed I have not slept in for 6 weeks.

5 weeks ago my PSW services were cut away, and since then i have not left my electric wheelchair except to be lifted to the commode or change the diapers once a day by the morning nurse. So when I have accident at day time, i must sit in it until the next morning.
I have had nurse peel off dried feces off me, as i had sat in it so long.

Today, every time i get email, letter or a visit from CCAC, i immediately think of what it will do to my demise. I know I will die one day regardless, but I now fear this slow starvation program, no water or medications, and no one will help change the diapers or onto the commode from Friday morning until Monday morning-that infact turns into 3 full says before someone would empty my catheter bag, or change the diapers.
this will kill me, before ALS ever will.

Now each time they contact me, i fear for my life.
als does not make me fear for my life, as I accept it, understand its not fair, or what ever, but i didnt expect fair, or what ever, i only expect that i do the best i can to be a decent human while i am alive.
Yet now,
each time they contact me, with these things happening, a small part of me dies inside.eventualy i will competely die on the inside, leaving my empty body to sit in feces, until its demise (which clearly wont take long with this. ).

They initally were to start the starvation plan Sept 11/12th but now the one acengy where one of my nurses comes from was able to convince them to give me service of a nurse this weekend, so they will start this next weekend- Sept 18/19th.

I share this,
not because i think, or expect you all to DO something about it,
but more as a warning,
that if you do not have family and friends around you,
if you are alone in a home like i am,
this could happen to you.
please read those links, as they are your rights also.
and if someone takes away your rights,
and you still have strength,
please help save yourself further suffering by 'arming' yourself with information, so you can respond quickly.

me, i fear this is too late.
who can save me now?
i have no friends or family around, my kids had to move away from me, because i am a single parent and when i became this ill i could not care for them.
So they moved away, two yrs ago my son and last year my daughter (this january she will turn 18 and it will be 2 yrs since she left at just 2 days prior to her 16th birthday-i missed it -and i cry now daily for my children, for i can not tell them this is happening to me.... how can they survive knowing that their mom didnt die of ALS but was starved to death in her own feces sitting in a chair she never left.

my daugther allready has suffered more then enough.
she cried reading the ALS society website for kids of PALS.
as she said, " but mom i didnt read about anyone like us. kids who have only one parent, so we become orphans. the other kids often have another parent left, they get to stay in their home, their things remain with them, and their friends neighbourhoods and schools stay the same-but me, i have to go away, leave the only place i ever knew as home, all my friends, my province, my school my town, to move with peiople i barely know in the other side of the country and leave most of my belongings behind as i cant take them on the plane with me"
so mature from a 15 yr old (at the time) but also very sad to know that ALS has affected her this way,
she has lost everything she knows,
her friends,
her school,
her neighbourhood
her home
her community,. city and province,
and her ONLY PARENT.
at the age of 15.

i cant write anymore i cry too much as you can see i propably made too many spelling errors lately as i cant see through the tears.

 

[cajebe]

Minna, I honestly feel for you. You are in my thoughts and prayers.

 

[extremewheelchairs]

now that i stopped crying so much.

i will try to give some info on what i am doing, and what its been like-my progression.
so perhaps people can put the picture together better.

i am 44 yr old woman and a single mom (but as in previous post-the kids are gone now).

i was diagnosed sept 2005.

i started to exercise when i got out of the hospital Dec 2005-in Jan 2006 i was still so weak (unhealthy-just generally-fat and not excervcising-reasn for my lack of strength/stamina etc.). i could only do 5 minutes on the hand cycle in january 2006.

by may 2006 i raced y 1st 5KM , Oct 2006 my 1st half marathon and by Feb. 2007 i had won the Canadian Indoor Rowing Championships which gave me an invitation to the National Team Selection Camp (but I fell, hit my head-got a concussion and could not try out for the team, spent the week in hospital and dark rooms quiet resting).


during this time, I had started using a wheelchair in Sept 2005, so all the racing etc. was done in a wheelchair-not walking, running etc.

i had started feeding troubles and got my 1st aspiration pneumonia in 2006.

my hand grip strength had deminished that i used a special hand splints that 'tied'
my hands to the oars to row, as I could pull harder then i could hold, (i was fast i admit-having internationally competative scores in all my races and testing process)
along with that, i did sprint kayaking, was the first woman to ever enter the national Canadian sprint kayaking championships from a wheelchair to race against able bodied folks-which iis the event that took me to race internationally in paddling.

this is shared, so you see although i was ill, -swallowing problems, lack of muscle control so used a wheelchair and hand splints to hold oars (and pushed with pahttps://www.alsforums.com/forum/clear.giflms the wheelchair), as well as deciding to learn how to skydive as the worlds only paralyzed woman licensed to skydive solo.

these things i did, believing that they would help me survive longer,
by being active (see i did not listen to the doctors on that one),
and to show my kids that an in active, overweight, stagnant woman can work hard to change that, so they could learn to believe in themselves that they can achieve goals if they work for it=as mom went from a large 270 lb woman who could not excerise for 5 minutes, to racing internationally in a year and a half (with putting over 30 hours a day to train!)

basically at one point the deterioration happened fast-between sept 2007 and sept 2008 i had gone from manual chair to electric, gotten a feeding tube fall 2998 and could not eat anything at all. i could not breathe well enough to race after my last international race sept 16 2007 (in fact i didn't know it, but i had aspiration pneumonia that Saturday i raced to a 2nd place finish because my coach took me home to Canada on Sunday and on Mondays training session I could not breathe and i had aspiration pneumonia.

until about Feb 2008 i 'fooled' myself that my lack of energy was due to that pneumonia and i was still recovering. This was not the case.
I had actually deteriorated enough that I was now permanently in that electric chair.
I still went twice a week to the YMCA to try to exercise as i had previously gone there 6 days a week for up to 4 hours of working out. (then i went to row and kayak, only getting home when the kids did-so I had a 5 to 6 hour day until that winter-when i could nt anymore,

Finally spring of 2008 I started on oxygen, (i lived in a far Northern town, and there were not many 'experienced' with treating ALS so no one followed through with the idea of the CPAP machines etc.).

Things kept moving along,

and today, in 2010, i now am not able to speak, or care for myself very much.

I use a communication computer-dynavox.
the electric chair.
24/7 oxygen .im in a new town now, and this doctor is trying to get the gov. funding for the CPAP machine or what ever it is that she said i should have instead of this oxygen, as my lung capacity is so low, i have a hard time breathing in from the nasal canula.

my hands, i cant not grasp well enough to open pill bottles, use the crusher or draw in the syringes needed to put the medications in, or to work on my feeding pump.

i wear diapers now, as there is no one here during the days, who could help me to get to the commode , i also have a foley catheter again for the same reason, i would have permanently went bottom if i didn't have the catheter-as i only see a nurse once a day in the mornings.

to get any washing done- i need help from the nurse, as i cant open the taps my home is not renovated so my wheelchair doesn't even fit into the washroom.
the nurse helps to change my clothing.

when my feeding tube has popped open, i am unable to fix it, so ive had to accept that until i see the nurse in the mornings of weekdays, if it happens, i will be a 'stinky
mess' until she comes to help me get clean. yet of course my wheelchair is stained with the 'leak that i had sprung.

ive lost the kids, both of whom have suffered so much watching this all happen that one day they told me that they are scared to wake up in the mornings in case mommy was dead-and there is no family in our province even, (we live in Ontario 0which is directly above NY, while closest relatives are in Vancouver -which is just north of Seattle). what will we do and how will we deal with it *my girl was 14 when she expressed this to me, and my son left that year at 16 saying he cant bear to watch this happening to me. he said it has depressed him so much, and i could see it in his school studies.
he started failing, when he had been the top student of his school. he quit school when he left so he could support himself in a 'dead end' job somewhere-so now my son is without high school diploma and trying to find a way to make a living alone.

as my daughter added she is worried in school as well and is starting to do poorly because her thoughts were on home and what was happening to mom.
so she said she was often afraid to come home worried if mom was dead.

these are the main highlights of what my 'progression' has been like.

im sure ive left out things, so if anyone will read this even,
or want to ask me something please do so, im ok to share what i need to, i just dont always know what i should be telling about.

-minna

 

[Zaphoon]

Minna,

I'm very sorry for the conditions you face every day and sorrier still that you are away from your children and they away from you.

It is my conviction that you should be in some sort of assisted living facility. Having such limited movement and being unable to care for yourself, you really should be in a place that can assist you throughout the day.

I really hope things get better for you in a hurry!

 

[LizT]

I feel so helpless, as this breaks my heart to hear that you must live this way and you are nowhere near where i am.
even if your kids dont live with you, cant they set something up so you can get better care?

 

[irismarie]

unbelievable and terrible and disgusting

 

[GlenBrittle]

Take charge and schedule a meeting in your home. Invite as many CCAC people as you can (case manager, PT, OT, etc), your PSWs , and your doctor(s) as well. That is how you get everyone on the same page.

 

[extremewheelchairs]

cajebe just a thanks

Zaphoon It is my conviction that you should be in some sort of assisted living facility. Having such limited movement and being unable to care for yourself, you really should be in a place that can assist you throughout the day.
LizT even if your kids dont live with you, cant they set something up so you can get better care?

GlenBrittle Take charge and schedule a meeting in your home. Invite as many CCAC people as you can (case manager, PT, OT, etc), your PSWs , and your doctor(s) as well. That is how you get everyone on the same page.

Hello,
Thank you for taking the time to read and respond-it was a lot to read.
Very appreciative to you 5 for offering thoughs an suggestions.

Cajebe-thank you for your words and thoughts.

Zaphoon, I must admit I needed a day to respond, as a frank and sharp reply uttered as the ‘first thoughts’ are not always the best choice of words.

I can appreciate your “conviction” that I “should be in some sort of assited living facility” but I must explain why I so strongly disagree.
1st, we all have our own sense of ‘quality of life’-for some it is ‘go the whole route’-vent and all. Go to a facility to be cared for so they may live longer despite having become a living statue. This clearly ‘works’ for some-and gives them the quality of life that they consider sufficient to be alive in such a situation and place.
It is good these facilities exist for such individuals/
Interestingly I read some stat somewhere that said 90% of us choose not to vent.
Having no idea wether that is correct or not, I wont comment on others choices, but share mine.
I have become an active person once I became ill with ALS. Like I wrote in the previous post, my level a competitive athletics was at the world championship level, two years into ALS, and I truly was the happiest (to date at that time) to be active-to push my limits.

The things that typically frighten people, such as 1 in 10 people are somewhat afraid of flying. While a greater number would be afraid to jump out of that plane at 4 miles above the earth. Some would consider the ‘Trans Rockies” -one of the worlds most grueling mountain bike races over several days through the mountains, as a horrid nighmare to try to get through-while others save for years to fly from where ever to come to this race, pay much just to participate and then put their bodies through conditions that Iron Man racers often turn away from as being too dangerous, difficlt etc.
So as you can see, we all have our sense of quality of life.

I certainly would never leave any option as a useless choice but explore it and give it much though prior to deciding. I went to see some facilities, and in 15 minutes I was crying so profusely I had to leave. I realized that I can not have any quality of life while there. I would propably just not plug in the feeding pum and let things go as they will. As all my life we (as a family) traveled- I home schooled the kids (as they both are Autistic and needed ‘special educations’ which was failing them so I taught them both at home). I have always been ‘attracted’ to adrenalin rush sports/activities-as a youth and teenager (my twin brother died in this manner=we were trying to learn how to “fly” at age 6 and things went terribly wrong.). I also have been involved in B.A.S.E. jumping (if you google it, it is perhaps the worlds most dangerous sport-it is not a matter of IF you die-but WHEN you do-when you start that sport, you go into it knowing you will be hurt, broken, perhaps die or become paralyzed, your family and friends will mourn for you, and be worried the rest of the time-yet if you google ‘Bridge Day” you will see in West Virginia that weekend festival attracts over 200,000 spectatrs, and only 450 jumpers are permitted to enter=registration to become one those 450 is filled within 11 to 15 mintes yearly-so as you can see, there are some other ‘extreme adrenalin rush junkies’ out there.
Ive never smoked, don’t drink, gamble and other risks people take-they just do not interest me=so I am not a ‘junkie’ in that sense of the word-it is an expression for those of us, who have the money to do so travel around the world, to jump off certain objects, cliffs, bridges etc.

So that is my quality of life. That kind of world clearly is not an option to its fullest extent anymore, and if I was in a facility my ability to do any of it would become zero.
At this point, that would be enough to kill me before ALS could ever have the chance. My insides, soul would die a little each day until only my body was left as “I” would have departed-awaiting release from the body-is all a facility would do for me.
Understanding this is an internation forum, so perhaps others are not familiar with Ontario (Canada), laws regaring health care. Here everyone who is terminally ill, has not only the right to live, stay ad die eventualy at home. Some are furtunate enough to have family and friends and I don’t doubt they will have a longer life expectancy then someone in a house all alone, if both people had the same progression at the beginning (and clearly this is never the case-but I hope you understand what I am trying to say).

So having said that, living here at the airport where I skydive (yes I still skydive-skydiving is a very easy sport to learn, just difficult to be good at it, but all it really requires is a calm mind, ability to think fast (things happen fast-at 120+ miles an hour when you know that the ground is below and it does not care for your reputation, skiills or abilities, it is just as unforgiving and hard to everyone).
But for physical strength-a child could do it-if it was allowed .
So as I said, despite all this, I did 20 skydives in August, and 178 total since I became paralyzed.
This is one reason I have DNR. As I want to go when time is at hand, and not be kept alive at all costs.
Life in that sense is over rated- life without passion for something is no life at all-to me.
And my passion is skydiving. I do not have the money to do it, as it is extremely expensive sport, but my school has given me each dive for free- I calculated it one day and it is over $20,000 worth of a gift. No other place I know of, would do such a thing for anyone who wants to skydive.
So now I live here at the skydiving school in a home alone, and yes it is tough, and yes I will die faster here, and propably will die this winter, as this all can not go on and I survie it all not to mention, who knows what progression I may or may not have any day.
So thank yu for your true concern and offer of a suggestion that is your conviction, but I must smile and pass on that option, as for me it truly is a death sentense.
Here when I can not skydive, I use the computer to do the books, to edit videos for the customers who come for their special gift dives and wanted videos and still photos.
Sp I am useful, despite bot having much function.
Finally, here in Canada, if you are poor like me (on disability assistance),
You do get enough to pay rent, electiricy and food (which I don’t need so I send it to the kids sometimes and other times I just pay others to pack my parachte-as I clearly can not—that costs $10/jump.)
Yet when you move into a facility, you have all your income directed to the facility, who in return pays for your accomodations, nursing etc. from it (and really all the care costs more then they get from disability benefit ‘cases’). They then give you small amount of cash you can buy a card for someone, coffee or a soda occasionally (of you drink anything) but it only amounts to abut $30+ /month.
Which wouldl not even pay for my trips to this place where I am living to come and watch other skydive,.
As when I cant, I sit outsid and watch others dive. We have it happening daily, and with a large plane it means I see up to 25 canopies (people) flying all in one time-it truly is breath taking. And for me life is not measured by how many breahts I take but by how many ties ive had my breath taken away by something beautiful. If I was to watch this coming weekends skydivers and then die=that would be much better then not being here.

I think that is enogh of that-propably expressed my point, as to what I consdier to be quality of life.
I live life to the max, and when I get to the end of it, I do not need a well preserved pretty body, I want to come sliding in on my butt with my body used up to its fullest with exerinces that could of killed me but I survied (as someone said once, each time we jump out of that plane we are jumping to our deaths unless we do something about it-that is really being in control of your own life).

LizT that is a good suggestion in most cases. As my kids are now 20(son) and 17 [soon 18] (girl).
Yet both kids are autistic, and the ‘worry’ for the future is, how well they wll cope in the world alone. My son is not coping well, but has made the sart choice to go back to finish his highschool. It also means he lives on welfare while attending school which leaves him with $21 after expenses and minimal food that he can get on that program. So he is stuck 6 hour drive away, as a yung many with the maturity of a young teen, and the struggles of his own being autistic needing support workers to help him shop for food and other basic necessities of life.
Had things gone ‘well’ he perhaps would be living at home for a lot longer then most youth, as he still can not tie his shoes, count the change he gets from the store- he has workers helping him do these things.
So he is out of the question for being able to help.
My girl, is absolutely traumatized. (as well as being autistic-and in a ‘special ed’ class due to it.
But she has taken this whole thing deeply, and being autistic any amount of change in her life and routine causes deep distress –if you read about autism you will get the idea=about the level of distress.
Once at the airport when she lost something she took of running, and made it throgh the secure zone, and was found 45 min. later running across the 12 lane highway dodging cars whiile wearhing all black in the night time. Passers by called the police and we found her that way. I asked her why she was there, she replied that because she had seen a Hilton hotel sign like in our town, she thought if she can get there they will help her find her way to our town, as “it’s the same place so they must know each other” was her logic,.
So again, her ability to care for herself is a first priority, and I hope that you can see that although your idea is super-and should be useful to anyone, it just wont work with two kids who struggle as autistic individuals trying to understand this world they live in.

GlenBrittle. Nice if it worked. Unfortunately the agency wont give me a social worker (CCAC) agency is sort of a catch all umbrella in our country. ALL referrals for either help in the home or at school for kids who need physio, OT etc. they send therapists to school also. But CCAC is the ONLY place outside of the hospital to be serviced. We can not just decide which company, which workers/professionals we want to see. Sure many feel Canadian health care system is ‘Universal’, but its broken. We wait far too long for anything (like my latest UTI the urine test was taken 3 weeks ago-I got the antibiotic yesterday. ). So CCAC controls when and if there is a meeting with thesr service providers.
The OT and PT (as well as one out of the three nurses I get alternating here on the weekdays), ALL are very upset about this, and have all reported to their supervisors that this is ‘abuse’ and ‘un ethical’ (their words).
Yet, wether their messages get forwarded from their bosses to the CCAC control agency, is unclear.
Logic tells me that you do not ‘bite the hand that feeds you’ so the angencies are typically too afraid to “conplain” to CCAC, as next term CCAC will give that contract to soe other agency and now your whole agency is without any work because CCAC controls all home care=so if you were dismised by then, your company best move countries if it wants to survive. Thus it has come to this. Every professional is too afraid to say anything as their jobs will go if they do.
I hope that helped to understand the position here. The one link I posted in the fist message,
Is a news story they did about me in Jan. 2009, when I went on a huger stike to try to regain my services. So Ive gone to the media then, and unfotunately I am ina new area now so I do not know much about this area,
Currenly I am in the process of gathering every radio, television and news paer in Canada, and emailing that all to at least 5 reporters in each one. As speaking with CCAC doesn’t help-as you see in the two of the links-they were here at home talking to me about what they will do. In the one video (titled ‘I don’t care’-by the way all videos have direct quotes from the videos, uttered by CCAC service managers.), and in on eof them the nurse was present, and other we had the PT and OT here, while the CCAC lady reduced my daughter to tears as she tried to speakto them about my situation when she sayd ‘but its about my moms care”-her voice starts to break, and after that she silently cried=the CCAC people stayed here until my daughters ride cae to pick her up for the airport. So we never had a chance to spend our last time together. CCAC knew this, and knew the day she was leaving. But for what ever reason decided to show up just prior to her leavig-apparently she cried alone in the plane for 5 hours until she reached her destination at the opposite end of the country. (BC and I live in Ontario as her brother does also),

-minna

 

[abbas child]

Minna, as the weekend approaches, I am so concerned for you. Would you have anyone help you get into an assisted living facility? I'm looking at Zaphoon's post, agreeing with him. As I don't live in Canada, I know there is so much about this I know nothing about. Yet, Glen, whose post is right above this IS in Canada, and suggests getting everyone together at your house. Would that be possible?

Minna, I am also in diapers and in a wheelchair. I cannot imagine your getting only one chance per day, excluding weekends, to get to the commode, to get water to drink, and food to eat. It sound so barbaric. I can do nothing to "help" but will pray for you and your situation. So very sad.
Ann

 

[BarryG]

Minna, I am very sorry about the way that you are being forced to live and hope that you can get some real help.

I do want to clarify a couple of points for everyone, CCAC stands for Community Care Access Centre and is an Ontario provincial government agency whose web site describes their function as

"Your Community Care Access Centre (CCAC) connects you with the care you need, at home and in your community:

• We can help you stay in your own home longer by providing Care in Your Home and by coordinating Care in Your Community, including specialized support services
• We can provide you with information about Long-Term Care Options if it becomes too difficult for you to live independently at home"

I am not aware of any similar agency in Alberta where I live and I deal directly with my local OT and PT as well as the medical staff at the ALS clinic and the local home health care nurse and Respiratory Therapist. Like most jurisdictions in Canada, Alberta is trying to find ways to keep people in their own homes rather than having them go into assisted living facilities but they have not set up any agency like CCAC.

I am hoping to stay here in my home with my wife for as long as I can even if it means that we have have a full time care giver so that my wife can continue working to support us.

All the best to you
Barry

 

[extremewheelchairs]

Minna, as the weekend approaches, I am so concerned for you. Would you have anyone help you get into an assisted living facility? .......
.
Ann

Hello Ann,

I appreciate your sentiments, and positive vibes for me. thank you,
but i do want to clarify, what i wrote above your post.

i took lengty explenation as to WHY i would NEVER go into assited living facility of any kind,.

i explained that i still skydive.
i live at the airport where i skydive.
in august i did 20 skydives.
(yes people in our condition are able to skydive, like i tell people, just because i cant speak, walk, and need diapers, doesnt mean i cant fly-infact that is why i fly, its the only freedom i have,

in the sky i can do backflips, front flips, etc. things i could never do on earth even when i was well.

I also wrote that i moved here, to die here.,
knowing that it wont be easy, but what is happening is purely against our law here in ontario-thus all those links i provided in the first post-detailing the particular points of our law which are violated.

what i need is an attorney.

I respect those who are able to make such a move-into a facility,
but like i wrote about quality of life, bot quantity.
i would rather live 2 days more only living here and skydiving, then 20 yrs longer in a facility, where my soul would have departed this body way before the body stops.
i have always been an 'extreme' sports 'lunatic' and that has not stopped-as many can understand that if you had a love for watching football lets say prior to the illness, doesnt mean that you now do not like watching football anymore.
your still the same person, with the same desires and hopes, etc as you were prior to ALS.

so it seems that perhaps i am in the wrong place here.
as i have written a couple of long posts, using a stick to push the buttons one at a time. taking much time to try to help explain me-my life-my desires for my life and what is important-staying here.

yet after explaining it in detail, again it is brought up that i should go to the facility that i took so long toexplain why i would never do it.
my doctor fully supports me staying at home.
we have this right here in ontario,
as the gentleman prior to me posted and explained about what the services are like=and it is specifically detailed that people here have the right to stay at home to be cared for fully until we die.

i had the ontario ALS society at one the meetings back in February saying that as far as they know, I am the ONLY ALS patient in ontario who has less then 14+ hours/week of nursing and personal support (psw) worker (they are the ones who do the bathing etc) to go with the nursing.

So as the law states, we have the right to get these services at home-(those links explain the law-they actually ARE links directly to our laws in ontario) and it costs our government $400,000 a year to keep a person in a facility (i cant explain why), yet full 24/7 care at home costs 1/3 of that.
Propably because at home we are not taking up the space in a facility, which has many other costs asides from my personal care-maintenance of the facility, paying the upper management, etc. etc.
but here at home those are my problem and their only concern is to deliver the medical services needed.


anways, like i said maybe i am at the wrong place, as it seems that the push to go to a facility seems to be considred more important then my wishes and our laws which support them,.

but regardless, thank you all for trying to offer supportive words, opinions and offer comforting message.

i must go now, as i only feel more sad and misunderstood here-reading again the idea that i should abandon my right to remain and be cared for at home fully-as our laws state- and follow the masses to the facilities where i would be kicked out the first week i am there.

what facility would accept that every day i would leave to come here for 3pm and stay here until sunset skydiving, and then on the weekends i just would come here for the whole weekend and skydive all weekend, and ofcourse the fact that i also get up at 4AM and play music (tibetan monks chanting) while i pray for 2 hours- i burn sweetgrass and sage to smudge my environment clean, (my spirituality is important to me) and ofcourse the whole idea of me being away from there so much they would quickly say that i do not need to be there, and kick me out-i have seen it happen to someone i know-they then come out of the facility without much more then the few little bit of items they could take there, and are without their disability income, and without a home to go to=so they end up in homeless shelter-which is way worse then me being here alone.

Thank you all for your time and effort.
much appreciated for that.

i shall continue this journey alone now, as it only hurts me deeply to have spent so long typing exactly the reasons why i can neve go to a facility, to read the net reply stating that i should go one.

im sorry i only cry more when i read it-and feel that i am not being heard, or my desires/wishes for my last days of my life are not being accepted but something that i had indicated is to me worse then death itself, continues to pop up as the only solution.

i apologise for your wasting your time, and for coming here.

be well and remain strong,
-minna

 

[abbas child]

Oh, minna, I am so sorry. I really didn't get it, you're right. Please forgive me. I do hope your rights to more care at home, in your home are given you, and soon.
Ann

 

[Zaphoon]

Minna,

Regarding my "conviction", I didn't mean to be brash but rather offer what I believed to be a reasonable and sound suggestion. It was simply to offer an alternative for having to sit in fecal matter all day. No offense was meant.

All I know is if I come to the place where I can no longer care for myself and have no relation willing to care for me, I'm checking myself into as nice a place as I can find and afford to assist me. I imagine there are many folk in these places looking for a friendly face to share the day with and it is my hope that my face would be friendly enough.

I'm sorry for what you must be enduring on a daily basis and certainly hope things improve dramatically for you.

Thank you for bringing some depth behind your reasoning. No one should have to suffer as you.

Please accept my sincerest apology for any offense, anger or ill feeling I may have brought on you.

 

[LizT]

Minna-
I apologize too if you took what was said the wrong way. I by no means think you should be forced into a facility or anywhere that you dont want to be. and you are correct, you do have the right to choose what/where/when/why/ and how everything happens to you.
Let me try to explain where i am coming from- I tried to read all of your posts- to be honest, i couldnt read through them all because of their length. This is no reflection on you, but i have a really difficult time reading long posts, as i sometimes have concentration problems. But i read as much as i could. I was under the impression that you were being abused in your home by your so called "caregivers". I assumed that you were reaching out for help. When i read that you are alone for so much of the day- it made me worry that people were abandoning you. I think maybe the suggestions that you were given by folks on here were to try and fix your situation. One way to do that is by going into a facility (though i understand why you wouldnt. i wouldnt either) Noone is trying to tell you that you need to uproot your life and move somewhere you dont want to go.
I felt really helpless after reading your initial post. this came across as an emergency. But if you are willing to put up with what is going on so that you can stay at home, then that is your choice. I am hoping that you can find a way to get better care at home because you shouldnt have to put up with that kind of treatment. it is ridiculous.
Just wanted to let you know that i do know about autism. I used to be a play-based therapist for kids with autism, so im well aware of what you speak of. I wasnt sure what level of the spectrum they were on, thats why i suggested that they help. and i didnt really mean help as in do your cares, i meant help fix the situation.
well, i really hope that things work out for you and i hope you decide to stay here posting.
good luck

 

[olly]

hi minna.
i am so disgusted at your lack of care and everything your going through,it brakes my heart.
while assisted living does sound like an obvious solution for some..........i do understand the need to stay in your own home.
you clearly still have alot of vigour despite your limitations by doing the skydiving...........i think its fantastic.

my only two cents is make lots of noise...............write to papers and get your story printed,contact goverment officials.............over here in the uk we have local mp's we can get to sort things out if we have serious problems like this.
the alsa should be helping more with this situation,seems they are not doing much.
you really need to let family know what is going on,they would be so upset if they found out from someone else.

we could help by emailing letters or petitioning and making noise on your behalf.............i for one would be up for that 100% and would do it daily if it helps you get the care you need.
just let us know who we need to write to..............strength in numbers.

you are in my thoughts and prayers.
caroline