[OK, so that's a bit of a dramatic title. Still, when I think about it, almost everything about my life has changed in the last five years. 1. Work:]
To pick up from my last post (over two months ago!), family members had been informed by the hospital my father was residing in that the long-term care unit would be closing by the end of March 2009. The Montreal Public Health Board had promised that all the patients would be placed in the nursing residence of their choice, on a priority waitlist. This last bit was crucial because in Montreal, a person can easily wait up to two years for a room at a public long-term care nursing facility.
Being confirmed the facility of your choice was one thing. The patient still had to be evaluated to see what type of residence would best fit his/her needs. Although I still visited my father often and tried to keep up with the latest news, my father's evaluation was done without my input. On the other hand, I did volunteer to be the family member representative for the hospital sub-committee set up to keep family members in the loop about the process and how the transfers would be handled.
As I go back in time, I remember we didn't have that many sub-committee meetings because the information was so scarce. A lot was kept under wraps, at one point we felt this project was a work-in-progress, i.e. make-it-up-as-you-go-along. The hospital seemed to be an innocent bystander, not too clear on what the Health Board was doing, and therefore could not offer family members anything concrete. Very frustrating, especially as the clock was ticking!
In the meantime, around mid-November, I was told that my father's evaluation had been processed by the powers that be at the Health Board. Due to his "behaviour", he would be transferred to a "unité de soins spécifiques", i.e. a special care unit - level 1. The hospital's social care worker wasn't quite too sure what this implied, but this particular special care unit was at a facility located in the city's east end, 15 km from my place. It would take me about one hour to get there using public transit (I don't have a car). I literally freaked out.
1. The east end is nearly 100% French-speaking.
2. I would be able to visit him max. once a week.
3. This was definitely not my residence of choice.
4. That special-care unit seemed to be for psychiatric patients (level 1 being the lowest, 3 being the highest).
At about the same time, a fellow family member (now a good friend) decided to write to the Montreal Health Board to voice her displeasure regarding the so-called transfer process. Somehow, a newspaper reporter got in touch with her and she had the reporter contact me because of my father's particular situation. Long story short: I was asked if I would be willing to tell my father's story to be published in the newspaper. I said yes, because I was really concerned with the way things were going. Story done, picture included, lots of feedback.
Lots of e-mails were written, sent and received. I kept most of them. Here's one from December 4:
"I've decided to take my dad's case further, because I cannot believe that there can only be one residence on the whole island of Montreal that 'caters' to my father's needs (i.e. hours and level of care). I'm not giving up and I'm not giving in!!!!!"
Further phone calls and e-mails, and a week later I decided to push for a new assessment, especially when I found how my father had been assessed according to one form! They made him sound like a psycho ready to commit murder! I was livid! I requested a meeting with all the staff involved in the assessment to discuss the Health Board's conclusion. We went through the main document and I contested a number of points. It was agreed some bits were over the top. Well... geez... you're talking about a person's life here, for heaven's sake, not a badly trained dog, or something.
While waiting for a reply as to whether a new assessment would be possible, I forwarded whatever information I had to the hospital's User Committee chair, I contacted the hospital ombudsperson to know if I could file a complaint about how the assessment was handled, and I e-mailed the facilitator of our Alzheimer Society's monthly support group to get her input on some of the assessment documents I was able to get copies of. Her words: "I must admit that I found some of the terminology and ratings distasteful (for a lack of a better word)." I was still being contacted by other media (TV and radio) following the publication of my story, but said I had nothing new to contribute at the moment. This was all in December, so of course, with Christmas on the way, I had to put things on hold till January.
A really really nice thing happened that Christmas. My oldest brother had decided to rent a condo in the Laurentians and invited us along. By us, I mean my mother, my sister (in from Switzerland) and me. Somewhere in that planning, my 2nd older brother (Vancouver) got the green light from his wife and children to spend Christmas with us, not knowing, at the time, about the condo invite. Of course, he would join us, and just as well, because he could do the driving! While I knew my father would be well cared for by his sitters over those three days, my mother kept asking if he could come with us and make the family complete. It was really hard saying no and explaining to her that he was better off staying in hospital. So off we went, and the lovely bit is that everyone said I was to rest and take it easy, they would look after mum.
(Sad to say, this has remained a "unique" experience - I'm still waiting for a repeat :-> ).
January 2009: Back at the ranch... err... hospital. Not only the patients were affected by the mood surrounding eventual transfers. So were the employees. And not in a good way. The halls were smelly, the laundry was lying around, there was a general disorder on the floor, as though the staff couldn't be bothered to keep the floor clean and tidy. They were busier discussing their own transfers to others departments than doing their work. It got to the point that some of us complained because the patients were being terribly neglected. Our voices were heard, and everybody --more or less-- got back to business.
As well, patients were starting to leave. One institution must have had quite a bit of movement over the holidays, because it was able to accept quite a few patients throughout January.
In the meantime, while still waiting for an answer on whether a new assessment could be done, I'd decided to take the bull by the horns. I was doing my own research on possible public and private facilities my father could go to. I contacted the hospital social worker assigned to my father so she could determine whether the public institutions I dug up would "fit" my father's assessment. I also contacted a private social worker who guides people in finding the appropriate private residence for a family member. My Ottawa brother come to town one weekend so we could visit the private ones (mostly in the West end), while I would get e-mails from the hospital social worker shooting down most of my public residence selections (some of which I called first to get extra information). She did give me the phone number of one that happened to be very close to where I lived. I made an appointment and went to visit it. It was actually quite abysmal. Too bad, because it has a huge backyard and is a mere five-minute walk from my place. One of the private residences seemed quite nice, homey, lovely view of the back river, nice backyard. But too long a ride by public transport.
Onward we plod. I wrote a letter of complaint to Montreal Public Health Board, and asked the hospital if I could have a private social worker do another assessment. By mid-January, no further ahead, but with plenty of ammunition to work with, I finally decided to call the residence where I wanted my father to go to. The social worker there listened to the situation about my father, I explained how the Health Board had assessed him and give her some "for instance" situations to see if they would be able to handle him... or not. All her answers were such that she could see no problem with them taking care of my father. Yay! A tiny light at the end of the tunnel!
I contacted the hospital social worker to pass on my new information. I ended my e-mail with: "I am baffled at why Montreal Public Health Board unilaterally decided to put my father on the waitlist at XYZ (where, by the way, he's not even on the priority waitlist!!) when other residences appear to be just as capable of caring for him. Please let me know what I must now do to get my father on the list for the ABC, which, as a reminder, was one of the residences I chose last year."
Her reply: I must call the Health Board's complaint department for them to research the file and determine what my options are.
Out of pure frustration, I replied to her and her superior: "I think even David had a better chance against Goliath than I do - I feel like I am constantly hitting a solid wall. [...] All I am trying to do is to find the best place for my father. I am investing my time and my energy in something I am inadequately equipped to do, but will fight for until someone does listen to me and I get the answers I want. How an evidently bureaucratic entity can decide what's best for my father based on limited paperwork is beyond me. I can only hope you will never need to go through such an utterly discouraging process."
Finally, January 20, 2009, I get an answer about a re-evaluation. If I agree, a different hospital social worker would redo a complete assessment of my father. I sent that e-mail to my siblings and a friend to see what they thought of this. One replied that it's a double-edged sword, what if the results are worse? Another wrote, why not? Finally, that afternoon, I replied to say that we agree to have a new evaluation done.
And I'm glad we did agree, because the social worker involved me as much as she was allowed to, she listened to my explanations when I disagreed with something she had written, and at the end, she even suggested that I write a cover letter to the Public Health Board to accompany the paperwork. That letter took me nearly a week to write, with all siblings and friend putting in their five cents' worth. I wanted to make sure it hit all the right notes (and maybe tug a few heartstrings) for whichever autocrat would be reading it.
Work: bits and pieces come in, it's not too busy, thank goodness. How I managed to get any work done, I don't know, but my records show it was a slow period.
At the end of January (the 28th to be precise with a major snowstorm sweeping the city), another meeting for family members was given by the hospital. I didn't attend (due to the snowstorm), but my friend did. Seems the major question was: what happens to those patients who, by March 31, are still in the hospital? Nobody really knew.
February 9: the social worker informs me the assessment package is going in the mail today. Apparently, the Health Board will make it a priority, but it will still take three weeks before we hear anything. The clock continues to tick. More patients have left, and more are slated to leave. The floor is slowly emptying out.
About a week later, a CBC report was broadcast about the closing of the long-term care units. I sent the reporter an e-mail in case she wanted 'our' side of the story.
Near the end of February, half of the floor is empty. Everyone has been moved to the other half (on my father's side, thank goodness, so he was able to stay in his room).
March 3: The hospital social worker e-mailed me to say the Health Agency has completed its evaluation of my father's file and forwarded it to my facility of choice for their own evaluation. A positive sign!
March 18: The residence has advised the hospital they will accept my father!!
But... their special care unit (or rather "protective unit") didn't have a room available. So it's a waiting game now.
In the meantime, we heard that any patients still on the floor by March 31 would be moved up one floor. Another family member and I went to check it out. Not good. It's a medical floor, crammed jammed full, with about five cases of C. difficile. If my father had to go up there, there is no way he would be allowed to walk around like he had been able to until now. Which would mean he would be tied down in a geriatric chair most of the day to keep him out of harm's way (supplies and equipment all over the place).
March 30, 9 a.m.: tomorrow is the day the long-term care unit will close. Nobody knows what will happen to the 13 (yes, 13) remaining patients. I have already stated that I didn't want my father to be moved to the other floor. Now, it seems as though some individuals might be moved to a lower floor. It all seems to be a guessing game. But I'm beginning to panic. Will my father get his supper tonight? Will there be someone to give him breakfast? Why can't they keep the floor open at least another week?
March 30, after 3 p.m.: I missed a phone call. The message was from a hospital social worker, reassuring me that my father will still be in his room tomorrow, not to worry. But it sounds like they will only decide tomorrow about what is going to happen tomorrow.
March 30, after 6 p.m.: Desperado city! I write an e-mail describing the current situation to the newspaper reporter, the CBC TV reporter, a CBC radio reporter and CTV news.
March 31 - my plan is to work this morning, since I know discharges or moves won't take place till the afternoon (so I'd been told), and to go to the hospital after lunch and if necessary, barricade myself, with my father, in his room. I will refuse a move up to the "C. difficile" floor.
March 31, 9:30 a.m. - My phone rings, the CTV reporter is asking me where I am. Huh? I'm at home, working! She wants to know why I'm not at the hospital, she's waiting there with a cameraman and wants to interview me. Omigosh... I told her I can't leave, I have work to do. She is not a happy camper! Not ten minutes later, I get an e-mail from the CBC TV reporter asking me if I'm available to do an interview and to call her on her cell! Oh boy! What did I let loose? I call her back, explain I have to work and that I will be at the hospital after lunch. To be perfectly honest, I did NOT want to appear on TV! CBC was not dissuaded and said, look, this is your story, you wanted to get it out there, you should show up; call me when you've made up your mind, I'm ready to go with a cameraman. Crumbs, she has a point. So I call her back, and set a time, call the CTV reporter back and tell her I'll be there, but had misgivings about the hospital's reaction (especially their PR person), so could we do the interview outside (ditto CBC). Well, it's my lucky day, because the CTV gal is good friends with the PR person and they have no objections whatsoever to my doing the interviews in the hospital. I later realized the hospital was most likely not happy to have been put between a rock and a hard place by the Health Board.
I do my two back-to-back interviews, with my father in the background (he was walking, as usual). I'm nervous, exhausted, answer the questions, spill my guts, and an hour later, it's over. The waiting game continues. I stay with my father, as I still don't know when and where he will be going tonight or tomorrow morning.
The rest is a blur, I can't remember the order of calls and messages, but somewhere around 3 p.m., the nurse calls me and says a social worker is looking for me. I take the call and she tells me that my father will be going to the residence I picked - tomorrow! I'm speechless... I call my brother in Ottawa with the news, he tells me I'd better check with the residence to make sure this is true -- after all, tomorrow is April 1st. So I call and am told, yes, it's true, his room will be ready tomorrow. I'm elated, scared, happy, anxious. Another chapter has closed, a new one was about to start.
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