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But who advocates for me? 
Started by oldbat
06 Sep 2014, 2:55 AM

Good question.  If, like me, you are an “only”, someone who has to do it all, with no help of any kind, then you’re probably too tired/scared/depressed/angry to cope with anything other than the daily routine of looking after the person you love.  And fielding those, often contradictory, emotions leaves you with little or no time/energy/willpower to even think about yourself.  You’re too busy doing the very best you can for your charge.  Your best?  Are you sure?

Oh, we’ve all heard the warnings:  “Take care of yourself first.”; “You’re no good to him/her if you’re not on top of your game.”  Right.  So in between the in-home care-giving, the visits to the hospital or nursing home, the management of money, medicine, information, appointments, the cooking, cleaning, running errands, the whole apparatus of living for two, who may or may not be living together, you might manage to find time to read a chapter or two; watch part of a t.v. show you’ve always enjoyed before nodding off; think about a swim or a walk or even spending time with a friend, only to realize that there is something so much more important to be done for someone who certainly is not you.

I lived like that for the better part of three years, after my charming, intelligent husband, the great love of my life, suffered a catastrophic stroke that turned him into, essentially, my six year old son.  He couldn’t walk, talk, feed or care for himself, respond to anyone, was essentially comatose for several months.  And  that was the easy part.  All he really needed was for me to be there beside him, loving him, talking to him, holding his hand, aware that somewhere deep inside him he knew.  Knew that, as long as I was there, he was going to be o.k.  He told me this much later, when he had made what everyone considered to be a “miraculous” recovery.  It certainly was no miracle.  It was something we both worked at - hard – over the next few months.  It was a recovery, of sorts.  He’s still paralyzed down one side, so we watch sports instead of playing them; still struggles with his speech, so we seize every opportunity to engage socially, not just with each other, but everyone he meets; and he’s still brain-damaged, which means that I have got used to being called “Frenchy”!  Or even, occasionally, by his first wife’s name!  That’s led to some interesting conversations!

You all know just how much emotional and physical energy you invest into doing this.  I’m handicapped, and not able to lift him, so he has had to move into long-term care.  He comes home a couple of afternoons a week, and we talk to each other on the phone many times every day.  I deal with his doctors, nurses, physiotherapists and p.s.w.s.  And take him to all his appointments. I advocate for every single benefit I have been able to find for him and hate, hate, hate living without him.

So, where are the friends and family?  Well, friends suffer from empathy burn-out when things just keep going on and on.  Family?  I have none.  He has two daughters, who probably visit him a few times a year, on birthdays, Christmas, special occasions.  They have never offered to do as much as take me grocery shopping.  I call this the second-wife syndrome, one I’m sure some of you are also familiar with. 

I have been hospitalized for exhaustion twice over the past three years and have finally, what took me so long, realized that I simply couldn’t go on like this any more.  I have become a pretty good advocate for him, but who would do it for me?

I did!  Over the past summer, I deluged the local social service centre with requests, pleas, threats, you name it.  What I got was – the run-around.  You know the one:  you call the first place, they refer you to the second and by your fifth or sixth call you are actually allowed to leave a message.  Which never gets returned.  Sometimes I got lucky.  Someone at one of these agencies would actually speak to me, and even give me the name of the person/people who would be calling me back. And, of course, never did.  I started this at the beginning of May and, by the end of August was feeling pretty desperate.  Desperation often leads to depression, for me anyway, so I smacked myself smartly on the side of the head and told myself “well, talking doesn’t work, I’m a writer, so why don’t I just do that.” On Friday, I wrote the head office of all those agencies-from-hell an e-mail, outlining exactly what I’d been going through, for how long and asking what had happened to that much-touted government program “Aging in Place, Gracefully.”  Pointed out that there was nothing graceful about what was happening to me or my husband. 

It worked.  I got a call on SATURDAY MORNING!  From a senior CIVIL SERVANT.  Within a week I had a support worker who comes in once a week to help me with the cleaning,, laundry and shopping.  And next week a case manager is coming to see me to see what else they could help me with.  I have a list!

I know from reading all your posts that many of you have similar stories to tell.  Do tell them.  Muster up every bit of courage/strength/energy you possess and remind those agencies that they are in the social “services” business, and you’re still waiting.  But, I guarantee, if you do, you will get the help you need.  It shouldn’t be this way.  But it is.  So, go get ‘em.  You have nothing to lose but depression, anxiety and a truly hideous way of life.

As for my six-year-old son, he’s now aging in place, gracefully.  Just as the government said he would!

ADDENDUM:  If anyone would like a copy of the e-mail that got the action, just let me know.  I’ll be only too happy to share.

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Reply by Xenia
06 Sep 2014, 4:33 PM

Good Morning Old Bat:

A very interesting read and I am sure most of us have felt the anger, disullousement, hurt feelings, despair and loneliness you write about regarding care for the caregiver.  I commend you on taking on your government, I am not sure if you meant Federal or Provincial or your city.  Please let us know.

I had been a writer all my life and when John was discharged out of the hospital in a cruel manner, I too began a campaign about discharging patients without communication to the caregiver, etc.  I wrote to our Patient Care division of the government of B.C. contacted a newsstation and were on T.V.  Then the Ptient Care department sent in palliative care nurses and home care for John, home care being 6 hours a week for bathing and 4 of that for respite for myself.

I was fortunate to have two of John's doctors become advocates for myself as when they questioned the nurses on Acute care floor in our hospital they told them that I was a disruptive person.  John;s doctor was outraged and told them that I was one of his best nursing care givers and was not that person they described.  They backed off however the govenment seemed to want to cover their butts as the letter in response to my letter was that in plain words, I was a liar.  The Palliative care nurses, whom I gave copies of the letters were in agreement as they knew and know that there are not enough nurses to care for patients on their discharge from hospital and that they are sent out with little information on who is going to care for them etc.  There the patient sits at home waiting.

I am not sure if you are aware that the Canadian Medical Association is asking for more funds for palliative care and that the 10 premiers and 3 premiers from the Northwest territories, etc are behind this move.  

I believe all of the caregivers should be writing to their local and large newspapers letting their communities know what is going on and as you described in your letter to us need to know how much it takes to be a care giver.  In our province the moto is "Home is Best" and when I did my research if found it takes $800 and so dollar to !1,968.00 per day to keep a patient in acute care as there are not enough beds, places to place palliative care patients.

I am in the process of writing this letter to the newspapers asking all to get behind this need for palliative care for seniors and others as the caregivers are becoming the patient and as our country has so many seniors the need for funding for palliative care is utmost.  The question I asked is who is caring for the caregivers? and "Are you prepared for becoming a patient in our medical system"  The cost alone is terrible and many of us who have saved for our old age are now facing the fact that there may be no one to care for us, especially if the spouse is ill and the wife has looked after him.her for years and now is becoming sick themselves.

I guess I am writing a story but I would appreciate it if you would send me a copy of your letter to the government, etc.  Forward it to me and I will make sure that the palliative nurses get to see the letter as I am sure this is the problem right across Canada and who knows it better that, we, the caregivers and the nurses on the front line who come and see what the needs are not some burecart sitting in an office comfortably not knowing what real life is living with a palliative/terminal patient.

Good on you for your being pro active and let's all get behind the CMA and get more funding for patients and caregivers.

Hugs to All

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Reply by KathCull_admin
06 Sep 2014, 4:56 PM

Ladies thanks so much for the important, interesting conversation.

Xenia, we want to ensure the safety and privacy of all our members so discourage people from posting personal information like addresses and email. So I have removed your email address but want you to get the letter (sorry I should have mentioned this earlier).  

I am not sure if this is the best way but until I learn of a better way, OldBat could you forward me a copy of the letter and I will forward to those who are interested including you Xenia? Does that work for you both?

What you both have learned (and continue to learn) is valuable and I look forward to the ongoing conversations. 
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Reply by Xenia
06 Sep 2014, 5:32 PM

Good Morning Katherine:

Of course this is a good way of forwarding personal info.  NOt being computer literate I did not think of this.  I am pleased you will be informing others of this and I am sure they will appreciate this info.

Re: Cost of caring a patient in hospital vs home, I forgot to mention that our government states it costs $200.00 a day to keep patient at home.  That is why patients are often sent home, however, they do not mention the wait times, the cost to the caregiver etc.  Of course we as a family want to care for the parent/wife/personal other/child so we bring them home and are faced with little or no after care.

Also, the cost should be broken down as in our case 6 hours a week, if I made an error before, math is not my forte, the remaining hours are mine and are unpaid.  I am happy to do this, however, there needs to be more info on the true cost not only to the government which provides (at times free palliative care) and to the caregiver not only in dollars and cents but to the health of the caregiver.  There is no breakdown of the hours spent caregiving, food, laundry, shopping, no sleep, etc.

Don't get me wrong, our family and myself are glad we can do this but what happens to those who can't afford this care or have no family or friends to help in the cae of a loved one.  To these this needs to be looked into with a slant on the aging population, the families that live apart and that Canada is such a large country that if you live in B.C. and have a family member on the East Coast care from the family is impossible.

There are so many cases of needs and such that this has to be undertaken by people who know what it means to be a caregiver of a loved one in the home and then sit down with the professional money people and devise a home care system that is fair to all, to those who can or cannot  afford home care, hospital care, assisted living care and such and come up with a plan that can be accessed by those in need.

I hope I do not sound like a politician, however, having been a worker in the health care system for years and having a mother in law who had an orphan illness I saw what it took for her daughter to look after her and our father in law in Ontario while we lived in B.C.  Also, seeing my own parents in Saskatchewan under the care of a sister who lived closed in another city and the guilt I felt living in B.C. while she cared for them.  Of course, once again it fell on the females of the family to be the cargiver.

This is another situation, I know there are stats that show female members of a family provide health care to their family is larger than the male member so....once again another stat that is discussed, commissioned, reported, then sits in cobwebs on the shelves of the government until something tragic happens and once again it is reported and reviewed again.

All for now.  My soap box is getting used too much to-day so, all take care and be good to yourselves.  Hugs to all.

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Reply by oldbat
06 Sep 2014, 5:56 PM

Hello Xenia,

And thank you for your comprehensive reply to my post.

You bring up some very interesting points and, when duty isn't calling, I'd like to respond to each, as best I can.  I know you'll understand the "duty" comment!  Personally, I've always subscribed to the "pleasure principle", but that's certainly gone by my board!

You have obviously given serious thought to this very serious problem.  I think if more of us caught in this horrendous trap would add their voices to the issue at the political level, something could and no doubt would be done about it.  From what I gather, you have tackled the problem at a federal level - and good on you!  I started at the very local - municipal - level but, judging by the rapid response, this would seem to be a pretty hot political button.  I can tell you that when Bev Anderson, who at that time was our provincial Health Minister, annnounced that her department was withdrawing physiotherapy services for seniors in long term care homes, I e-mailed her immediately and followed up with 'phone calls.  My husband has never missed out on any of his in-home physio sessions since.

At the age of 76 I find it amusing to be starting a new career as an "activist",, but if that's what it takes, that's what I'll do.  It's so much better than sitting home alone eating chocolate!

And, yes Katherine, i will certainly forward the actual e-mail that engendered action to you.  You may be amused by its its (relatively!) mild tone.

Xenia, please keep posting, and so will I  This may well turn out to be the geriatric version of Hillary Clinton's "It takes a village ...."!

Anyone still wonder why I call myself "Oldbat"?! 
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Reply by oldbat
06 Sep 2014, 7:23 PM

P,S,  to my previous post.  Just read an excerpt from a new book:  "The Alzheime's Diary:  One Woman's Experience From Caregiver to Widow", written by Joan Sutton, who used to write for the Toronto Star, back in the day.  I tried to get a copy from our central library but, unusually, they don't appear to be stocking it.  Yet!

If anybody's read it, I'd certainly love to hear your take on it.  It was published this year, so may not be out yet.  I'll keep after the library anyway.

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Reply by Xenia
06 Sep 2014, 8:30 PM

Good Afternoon Oldbat and all:

Waiting for a surprise visit from Vancouver of my daughter and my daughter who lives in the Valley with me.  Daughter from Vancouver thought I had a 3 hr. respite to-day, however, I had to trade that in for my doctor's visit yesterday.  Didn;t want to miss that appointment as this is the new doctor who took me on as a patient as in previous messages I believe I told you that my doctor had a stroke and I was floating around in limbo with no one to look after me.  Thank goodness my husband, John, has a different doctor.  Why?  I have never gone to the same dr. as he as I always felt...lol they would blame me with my outspoken personality on why he was ill.  Like my son says, we are all bossy.  Guess that came from being a middle child of 14.  If that is possible.  I was no 7 and fought all the time to be recognized.

Oldbat, I have two years on you and am so aquainted with the name OldBat, used to hear it all the time growing up in the prairies.  Some of the old timers called their wives an Oldbat and we as kids sat back listening to them talking, of course, we had to be quiet, remember those days, so we just sat back and absorbed whatever came out of their mouths.  Learned a lot about politics and the old Eatons cataglogue and the history of our country.

I digress, Oldbat, I do believe talking about our problems helps and to-day just voicing what is wrong with the health care system has taken my mind off of John and a pity party for myself.  I looked at what could be done if the caregivers became more vocal.
As said before I learned to become more political, not in the sense of Political parties, but learning and speaking out for causes and that I learned from my parents who were active in their small towns, helping building our church, getting the World book into schools, that one came after the Book of Knowledge that we used to read, no comic books till later, on Saturdays we shared a brick of ice cream amongst the kids, pulled out the comics from the Winnipeg Tribune and passed them around while dad listened to Boxing brought by Gillette's razor blade company.  As you can see I am an oldie from the prairies where a lot of medical care originated, Alberta women helped building a hospital, Saskatchewan the Medical care we now use and take for granted.  I could go on and on and that is why I am vocal about palliative care and seniors.

By the way Oldbag which province are you in? Sounds like Ontario, am I correct.

All for now, hear the buzzer ringing, daughters are here and John is asleep.

Take care to all and Hugs to all.

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Reply by NatR
06 Sep 2014, 8:55 PM

Dear OldBat and Xenia,

i have ave followed your notes and I am glad you are writing to each other in support.
you both certainly have had to fight for every bit of support - I admire you both

as a retired personal support worker who has seen the job from inside long term care - and how tiring it is just to be part of the 24 hour team that supports seniors - and as a grandma who has helped care for a grand child with a genetic disorder - total care - I understand a bit of what you are talking about 

it's good you are discussing the fatigue, the fight for every bit of help, the endless hours of caregiving, all given from the heart - but feeling like you are losing the battle.

this forum is so helpful in that each of us has different stories but it all comes down to doing the same things for our loved ones.
we can get it all out and be heard without anyone saying we shouldn't say these things, or complain.
darn right we need to vent, ask for help, it's just a shame we have to do it for so long before finally getting a reply with some assistance.

i wish you both a peaceful evening and know that your gift to your husbands was and is the best gift you could ever give.
best wishes:)
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Reply by oldbat
06 Sep 2014, 9:01 PM

Can hardly type this for laughing!  Xenia, I gave myself the handle of Oldbat, but you've gone one better by referring to me as "Oldbag".  Please, please, please do not apologize.  I LOVE it.  And I so needed a good belly laugh.  Thanks!

Have a wonderful visit with your family.

And, yup, you got it right, Ontari-ari-o.  You know, the centre of the bloody universe. LOL!  Just got back from my first visit to Vancouver.  Am definitely in love.  Spent a few days on Gabriola island, which was lovely.  But Vancouver feels like my spiritual home.  Mountains.  Ocean.  I am SO envious.

OldBat a.k.a. OldBag!!!!!! 
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Reply by oldbat
06 Sep 2014, 9:13 PM

Dear NatR,

I've only been a member of CVA for a very short while, but have already received so many gifts from people like you:  sympathetic ears, shared stories, common understanding and (see post above!) some really good laughs.

I have also learned one very important thing:  to ALLOW myself the time it takes to do something I really, really want to.  Like be here with you all.  I think that, for some of us at least, self-sacrifice becomes an end unto itself.  "OH no, I couldn't possibly take time to do, read, go to (FILL IN THE BLANK FOR ANY CHOICE!)".  We become so wedded to our self images of eternal victims (O.K. that word may be just a tad strong!) that we can't even contemplate a change into something that might just make not a life but at least a moment more enjoyable.

That last paragraph or thought may be a bit muddled.  I'm feeling my way through a new concept which I sense could be important. Please bear with me. 

OldBat or whatever!
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