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Thread: Part 2 of CBC Documentary on Aging Parents

  1. #1
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    Default Part 2 of CBC Documentary on Aging Parents

    http://www.cbc.ca/player/News/TV%20S...ID/2306673385/

    All too common a story in our community. It's getting harder for our generation. We thought our government would step in to help when we got too old or tired! Young families now will have an easier time, I think, because they have savings mechanisms like the RDSP and the expectation that they will have to craft future solutions themselves.
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna))))))

    This family's story is compelling and tragic. This mom clearly adores her daughter, and she was forced to abandon her in a respite care facility, albeit a very nice one, while her husband is dying of cancer.

    $9,000 a year for support is absolutely obscene. Who could live on that? Who could hire someone to provide assistance on that, which as the narrator said, would be equivalent to one month of care?

    While the situation in the U.S. is far from ideal, we have had some form of the In Home Supportive Services program at a federal and state level for elderly and disabled care since the early 1970's. In the early 1980's, I toured out of home placement options with my boys (none of which satisfied me, of course, but they were there).

    It seems that there was no foresight by the Canadian government that the population of disabled children would increase due to improvement in medical technology, thereby increasing their life span to adulthood. It did, and it will continue to do so.

    But now that it is obvious that there is an abundance of adult children with special needs, and aging parents, who cannot care for their children without assistance of some kind in the home, or out of home placement, it's time for the government to step up to the plate and address this need.

    I think a major grassroots advocacy campaign is necessary to force your government to recognize the need and meet it appropriately with funding. That is how many of the programs, upon which my sons have depended, were born. Demand. Vociferous, persistent, pleading and demanding by parents and advocates.

    I pray it happens.

    Love & Light,

    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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    Hi dearest Rose, You are always so right. Yes, the government had no foresight because governments, by definition, are ruled by short-termism. They are politically motivated (obviously) so they don't predict demographic needs except where it's politically expedient (as is the case for seniors which is one of the reasons that I feel so strongly that we should align politically with that group). Our disability movement in Canada is fragmented and in silos - it's the physically disabled vs developmental disabilities vs mental health vs addictions, the list goes on. It's enough to drive anyone crazy - we need to merge interests and think like a movement. And the lone voices of NEED just go unheard. There was no fallout whatsoever from this news item. And even the association for dev. dis. tweeted, "Do think this series is good or bad for people with disabilities?" Honestly, we need to align and have ONE STRONG VOICE!!!! Sheesh!!!!!!!!!!!
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    ((((((Donna))))))

    The movement needs a leader. Are you up for it?

    The issue of long term care wasn't just invented! So, I am still surprised that your government hasn't come forward with viable options to care for long term needs.

    Advocates for anyone, who will or does need long term care, must unite and approach the government with facts and documentation about the growing need for appropriate long term care for your country's most vulnerable citizens. The reason for long term care is not the issue. The issue is that long term care is needed for an expanding portion of the population.

    Regarding this series, the question should be whether it helped to convey the message of the crises facing all people. But, if the focus is narrowed to families with children, who have DD, then my assessment is: Part 2 achieved that purpose; Part 1 fell short, because of the stereotyping, which I mentioned in the other post. The difference between the two Parts to me are: Part 2 ~ Parents, who have no other way out; Part 1 ~ Parents, who just want out.

    No good will come from jockeying for a position as the most neglected group, when all affected groups are suffering. Your voices will be louder, when joined together in the same cause, which is to provide appropriate and least restrictive living and care options, for those citizens, who cannot care for themselves. You get that. I get that. It's common sense, so why are all of these fragmented segments, who need long term care, only looking out for their segment's needs?

    Most likely the answer is that they are concerned that the government can't afford to help everyone. So they have to fight for their group to get whatever piece of the pie is doled out.

    But how civilized are we if our most vulnerable citizens are crying out, "Us! Over here! We need it more than they do!?"

    Representatives from every affected group should march on your Parliament and testify as to the magnitude of their needs. It's a shame that anyone has to beg for help, but if you plead en masse, it could have a great impact.

    Or, use technology. A news channel is great, but there is YouTube. Every family in need could videotape their situation and upload it to YouTube, reference it on their Facebook Pages, Twitter, etc. Instead of two stories, you could have hundreds to thousands. Then bombard your legislators with the links to those videos.

    Another tactic ~ appeal to philanthropists. Some private funding can go a long way.

    Those are my thoughts to kick start a movement to implement the desperately needed change in long term care in Canada. Probably nothing new or that you haven't already thought about, but it's my two cents nonetheless.

    How is Nick feeling? Is he still having the symptoms? My prayers are with him and you and your family.

    Love & Light,

    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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    HI Rose! Yes, I think we need to get political and NOW. I think that one way to do it is to get a politician to champion the issue. The leader of the left leaning party in Canada (National Democratic Party or NDP), Jack Layton, championed the elderly poor until he passed away from prostate cancer last year. He was perceived by all as the penultimate decent person and a beacon of hope for honest politics. He was able to achieve a lot on the issue because he was not in power, but he was a lovely man with a great cause and he was in opposition in the house, so he just kept hammering away and he made a lot of progress. I think the tide may be just starting to turn in terms of bringing together all the care stakeholders (disability, children, seniors, addictions, palliative, LTC, etc etc) There's a new book out that is getting a lot of attention - it's called Far From the Tree by Andrew Solomon. This from the front jacket: Solomon's startling proposition is that diversity is what unites us all. He writes about families coping with deafness, dwarfism, Down syndrom, autism, schizophrenia, multiple severe disabilities, with children who are prodigies, are conceived in rape, who become criminals, who are transgender. While each of these characteristics is potentially isolating, the experience of difference within families is universal, as are the triumphs of love Solomon documents in every chapter." This book is all over the NY Times and other papers, it's having a big impact. I just started it and it is fascinating, if a bit daunting. It's almost a thousand pages and the writer is scarily intelligent, so it's sometimes a bit tough reading (not easy or light, but still so compelling)! Anyway, I think when a book like this comes out by someone like this author, it's because a social or political trend is being predicted based on signs and symbols shifting in society. So, I am hopeful. It's like when the green movement started. It bubbled up and I think this will too. It's so important to tell our stories so that the movement can be informed by real people and real experiences.
    Nicholas had a bad day today :( but yesterday was great - he came home for a big football game (the Grey Cup is the Canadian final) and I made pizza and he had some beer which he loved! We had a wonderful day together with no helper, just us, it was lovely. Anyway, today he had one of his 'attacks', went very pale, nauseated, then sleepy - blood pressure and blood sugar normal. We see the neuro tomorrow and we'll query TIAs and vasovagal and seizures, of course. I'll also ask about thyroid even though the GP ruled it out based on the bloodwork. I will let you know asap how it goes tomorrow! How is Jon doing? So glad that the tube got changed with no grief. Lots of love, Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    ((((((Donna))))))

    I'm sorry to hear that Nick had a rough day today, but I'm delighted that you all had a good day yesterday at home. Pizza and beer ~ yep, sounds like a football party to me.

    Sending up prayers that the neuro has some ideas to explain Nick's attacks/episodes and an easy remedy to end them. I'll be anxious to read your update. I also hope and pray that the new neuro is compassionate and that you all like him.

    Thanks for asking about Jon. He's doing well. He had his catheter changed yesterday, and everything was smooth as glass. GI doc will be here Wednesday to change the Gtube.

    How brave of you to tackle a 1,000 page book! I do like Solomon's premise that diversity unites us. It should, but it hasn't in the past. I hope you are right that this signals a trend.

    I'll be thinking of you tomorrow, sending lots of positive energy.

    Love & Light,

    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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    Dearest Rose, I thought Jon had his G-tube changed last week - but I reread your post 'Relief' and realized it was the promise of the change. I am SO HAPPY that the catheter change went well because that's the big one isn't it? Good luck with the Gtube change tomorrow. We do this ourselves, but Nick has the MicKey and it's really simple. Jon has a more unusual type of tube, doesn't he? About the book, Rose, when I finish (and I hope I will sooner than later because I keep defaulting to crosswords lol) I am sending you my copy!!!! You will love it, it's serious and at times tough going but you know you are reading something really important. I send you love and healing vibes for tomorrow. xoxoDonna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Thanks for posting this link. There certainly needs to be more focus on home care for disabled so it is not all left to the parents. Sorry Nick had a bad day but glad he got to see the game!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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    ((((((Donna))))))

    I've been thinking of you and Nick all day. Anxious to hear how the neuro appt. went today. I hope it was a positive experience and that you have answers.

    Jon's Gtube is 12 inches long and it has a "mushroom" cap, which holds it in place. We opted not to go with buttons, because Jon is on the feeding pump, and I don't want to mess with extension tubing. This tube was placed March 2011, so it's had a good run, but it is soooooo slooooowwww now. I'll be so happy to have the new one in tomorrow!

    Thank you for offering to send me Solomon's book, but I have NO time to read, especially not something as heady as this book, which is 1,000 pages long! I'd rather read your synopses of the book!

    Love & Light,

    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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    Hi Rose!
    We had a good meeting with the neuro today. I hope your appt for the tube change goes well too! We met the new doc and he seemed quite nice. He listened to the history and he feels that the change last summer from keppra to valproic acid might be the culprit. We are going to decrease the valproic and see if the symptoms alleviate. If they don't, then we look for something more sinister. If they do, he advocates changing to vimpat. Keppra is not covered either by disability benefits or our insurance company. Not sure why. But he says vimpat is quite similar and I know kids on these boards are using it. I don't think Jon is on this drug, is he? Isn't he on dilantin? Anyway, let me know what you think of this plan and good luck with the Christmas tree!!! xoxDonna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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