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Ontario caregiver

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Hi
It is starting all over again, I wrote about no support help a couple months ago, changed our caseworker, and all is the same or worse. WHAT CAN WE DO?
Our service company has 4 workers hurt and has taken milage payments away from their workers, so I think they have a few internal problems too. I would be mad if one day I made this much driving to clients in the country or town to town and then they stop paying milage, the support workers can't afford to drive miles to clients. For example we did have a support worker who drove 35 miles to our town to help us, but now will not come as it cost her money now to come, and I do not blame her.
I am waiting to hear if our member of parliment can help us but will be a day or two till I get that answer. THIS IS NOT FAIR to my husband or myself without their help all the stress end on us, and it is getting harder for me and I count on that help so it will give me some relief as my husband is 24/7 care.
We all have enough stress from this disease, but when things go against you you just want to not care anymore and that is not how I want to feel,
 

brooksea

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I'm so sorry O.T.

I'm not familiar with the process in Canada, so I can be of no help there.

But I was just discussing this very issue with my mother today. I take care of her part time during the day. There is a shortage of caregivers working for the Homecare companies, simply because they want to pay them a lousy wage and then offer pittance in mileage reimbursement with no medical benefits. Whereas, if a caregiver works at an institution, they are paid a fair salary plus benefits. Who would you rather work for? A no brainer.

I really hope you will hear from someone in authority to help you through this process. Please hang in there and let us know how y'all are doing.

Again, I'm so sorry you are having to go through this once more...
 

MtPockets

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Of all the time to cut back on millage. What will they think of next? That is so sad and heartless. I'm sorry you find yourself in this predicament.
 

Al

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Call the ALS Society again. Your MP may be of some help. They tried cutting my hours last week. We raised heck with Case Mgr., her boss, CCAC and our MP. Got them back but they want us to apply to March of Dimes for the extra. We'll see how that goes.
AL.
 
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CindyM

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All of this is partly due to the fact that MND is not so well known with the governments who dole out the funds to our caregiver agencies and even our ALS agencies. They get budget cuts and this gets passed along to the PALS. We need to fight for research for a cure but we need to fight for funding for the agencies who are helping on a daily basis. JMO. Cindy
 

jskierz

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In Alberta we have self-directed care where you are given money from the government (have to account for it of course at the end of the year) and you hire the worker and decided on amount to be paid - do they have that in Ontario? If not are there any church or service groups in your town that would be able to help? Definitely raise these problems with your provincial and federal politicians and don't stop until you get the help you need. I have become very vocal since this terrible disease has taken over my life and am starting to see the results of getting help.
Radio stations and newspapers might also be a source of making your need for herlp public. Just some ideas that may work for you. Never give up!:-D
 

Ontario caregiver

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I want to yell and swear

What I want to really do is tell the world to Face Off. There have been no changes for my husband and our Mpp can Face off also as so far he is no help, the girl looking after Gary's file got mono so no one did anything as it was a paper file and she had it at home with her for almost 2 weeks, so needless to say I sent an email so they would have a real file for Gary. Have not heard any positive reply so sent 2 emails off to Elizabeth Witmer MPP P.C. critic for long term care and France Gelenas MPP oppisition critic health and long care, do you think it will help.
Spoke to another caseworker at CCAC who was going to get us help Sat. morning for Garys bowel movement and shower bath, but of couse that fell through, their solution was do not have a bowel movement, well thats just great, but I am sure when they crap they don't wait for an extra day or even 2 days like they ask Gary to do.
Hey I guess I am really upset, look at the Frigging words I am using. Please excuse me but I am really frustrated and mad
Anyway poop will hit the fan we will be going public to the press about funding given to Perth County but does not seem to be coming to the disable, at the end of next week, unless with a miracle they get their crap together to help us.

Just so everyone knows I feel much better having to write down my feelings, hope I did not offend anybody
 
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laurel

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Joined
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Messages
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Reason
DX UMND/PLS
Diagnosis
07/2007
Country
CA
State
BC
City
Vancouver
No offense taken. Getting the frustration out is perfectly okay and sometimes we feel like cursing a blue streak when things are more than we can tolerate. It is amazing how quickly people will act once the press get involved. Good luck and keep us posted.
Laurel
 

Al

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I would say you have good reason to swear.

AL.
 

judylyne

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I'm sorry to sound rightous but there is never a good reason to swear.
 

brooksea

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I suppose we never know what will come out of our mouths til we are in that position.

PALS and CALS suffer enough without having to suffer more just because some carer "forgot" to do something that caused an avalanche of critical issues for this family. This is quite unacceptable and I hope O.C. can stop this saga from continuing to even more dangerous proportions.

Different people have different ways of venting. PALS and CALS need a release. I hope we all can be tolerant of one another in these trying times.

O.C. - Please let us know if you were able to get the help you need!
 

Ontario caregiver

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Messages
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hi it is me ia am in a better humour

I am sorry I spoke so blank on my post, and thanks for the positive feedback. Judylyne, you are right there is no need to swear, but I did feel better after I posted this problem of ours, and hope you never have to go through what Gary and I have.
I did try to go in an edit my blanked words but I could not, but at least I did not print out all the letters so your mind has to fiqure out the words.
Today we where on our own so it went well, but again I do not feel with our CANADIAN funding this should have happened to us and to be treated by our MPP the way we where.
Monday is a holiday in Canada, so Tuesday I will start again fighting the system, and by Thursday, I will contact the press to go public on our issues. We must fight for our loveones, and fight for the care that can be supplied to us free, this disease has cost our family plenty, and I will fight for anything that can help us, especially if it is Government funded.
If Gary and I speak out, it may and "better help us", but more so I feel it will help the next one, or better yet it will give all caregivers and survivors of ALS to fight also, and that is the most important outcome that we want. The more you talk to the press the more educated others become of ALS, and everyone needs to learn about the stress, and help a family needs to survive this disease
 

brooksea

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I wish you the strength and courage to do what is necessary for you and Gary!

And now you have to wait for a holiday! What luck!
 

Al

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State
On
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Hi OC. I took the liberty of changing a few thinge in your post. Being as hockey is our national sport I felt Face off would work. On a serious note you can tell your MPP that Sylvia Jones MPP (PC) for Dufferin Caledon is also contacting the Minister of health regarding the shoddy home care being provided to ALS patients in the province. Maybe they might want to compare notes.

AL.
 

Al

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Joined
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Messages
7,960
Reason
PALS
Diagnosis
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Country
CA
State
On
City
NW of Toronto
Hi OC. Not sure if you are familiar with Gold Hawk Fights Back. Lee talked to him this morning on the radio about CCAC and Home care and Nursing homes. His number is 416-360-0740. Email is [email protected]
He wants to hear about problems with Home Care. Hope this gets some help.

AL.
 
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