My talk given for the Alberta Caregiver’s Association Kick-Off Breakfast
May 6, 2013
I want to talk today about the relationship between the Caregiver and the System.
First, as systems go, I believe Alberta has one of the best you could want.
The level of support for individuals struggling with health issues is second to none.
However. A system is a system. It’s not a living breathing person. It functions according to rules and protocols. We, as caregivers, don’t always get that.
When I was first thrown into the caregiver role, I was about as ill prepared as anyone could be. Outside of occasional doctor visits, I knew nothing about the Health Care system.
For my family, catastrophe struck when our daughter was 15. She was thrown from a car and broke her neck. Suddenly, we were catapulted into a world we knew nothing about.
Our daughter was left a quadriplegic. She spent 3 months at the Stollery, and another 4 months at the Glenrose.
In the hospital she had round-the-clock nursing, doctor visits, occupational therapists, recreational therapists, social workers, cleaning staff, kitchen staff, cooks, orderlies…
A huge team of trained professionals, all right there on site.
On Dec. 22nd, 1999 she was discharged and came home. ….. To me.
As well as I can figure it, the System functions on this understanding: That the person who shows up to help when someone is in need IS THE PERSON who will carry out the caregiver role.
If it’s a child, a parent usually shows up. If it’s a husband, the wife is there, or vice versa.
Information is given. Training may be given. Monitoring may be carried out in various forms.
Duties are laid out and expected to be filled… By the caregiver.
Simply put, I was no longer Mom. Now I was the instrument positioned to do the job that was needed. My ability wasn’t an issue. No one was going to fire me!
Now, the System might ask: “Are you the one to whom we should be talking?”
The caregiver, often vulnerable due to worry or fear for their loved one, will pretty much always say, “Yes”.
As far as I know, the System doesn’t ask, “Are you able to do this?” Rather, it says, “Here’s what you do.”
In Alberta, we have incredible supports in place. Community care covers nursing, home care, OT’s, RT’s , there’s Aids to Daily Living, and much more.
They generally like you to go to them…. but if you can’t, they‘ll come to you.
Yes. Professionals from all these disciplines were coming to our home out in the country. They were doing the job they were assigned to do for this young girl who was trying to live as both a teenager and a quadriplegic.
At the same time, we had to put an addition on our little old, two story house to accommodate our daughter and her wheelchair. Have you ever lived through a major renovation? Then you’ll understand the stress. Add to that our struggle to learn how to “manage” our daughter’s paralyzed body, and my ignorance of how to work with the system…. We had a recipe for disaster.
Stress was constant. Exhaustion became the norm. There was no way to take a REAL break.
Given our daughter’s age and gender, my husband’s help was limited. Home Care came to get her up and put her to bed, did her showers and such. The rest? Up to me.
I didn’t ask for additional help. It didn’t occur to me. I assumed we’d been assigned I was all the supports available.
To be honest, so many people were coming through our door, so many whom I had to teach, showing them what worked for our daughter, what made her feel safe… I couldn’t imagine bringing in more strangers.
But the ship was sinking. Every day was another wave… crashing me against the rocks.
The time came when I was no longer sinking… I had sunk.
I loved my daughter so much. She deserved proper care. And I could no longer do it.
Totally exhausted, there was only one option.
I would kill myself.
Then the system would have to find someone capable of meeting her needs because I couldn’t anymore—I just couldn’t.
Shocking? Even now, over a decade later, I look back and realize I was helpless to find any other solution. Suicide was the only task my overloaded brain and body could still carry out …
Except for one quick detour. A little voice in my brain suggested (and it was only a suggestion) that I go to Emergency and tell a doctor my plan and my reasoning. Just in case, I thought. Just in case there is another way.
Sometimes you can poke the system without realizing it! It rolls over to expose a higher level of functioning. I thank God that the doctor in Emergency listened. I was admitted.
There I stayed for a full month. Our System stepped up and increased the supports needed to provide for our daughter’s needs. My husband and 13 year old son did extra duty.
I hunkered down in the psych ward. All I did was eat the meals put before me, sleep when the lights went down, and turn pages in magazines, looking at the pictures.
It took about 2 weeks of total rest before something in my brain began to function again.
One day I sat down and wrote a list. I named each service provider I had been coordinating in my daughter’s care. There were 24 names on that list. 24! I was running a small business, with no training or strength to do the job.
Let me tell you the best part.
While I was in the psych ward, the System kept grinding forward. My daughter’s pediatrician got the number of the psych ward and called me there to explain a change of meds he wanted ME to implement. Her OT called me there, wanting to arrange a time to do a repair on her wheelchair. I WAS IN THE PSYCHE WARD, but they had a job to do.
I was finally discharged with a plan — one that I wouldn’t have to implement. The Psychiatric Social Worker drew on a system-function I hadn’t heard about. She called a meeting of my daughter’s Service Team. Everyone involved in decision making for her care agreed to come together with my daughter and me once a month to review her needs and coordinate services.
This is called Care Planning. A simple, effective, efficient plan. Why couldn’t they have done that in the beginning? I have a theory. I think it was because I, as the widget in charge of care, appeared to still be functioning. When the widget broke down, the System identified the need and could react.
Service Team meetings were amazing. I’d yammer away about what was going on. One person would say, “I have a contact who can address that.” Another would say, “We have funding… Let me look into it.” What a difference it made.
My daughter’s injury was such that over time she stabilized. As the years have passed, she’s learned to manage her own home care. And she’s taken charge of her medical and equipment needs. She’s married and she and her husband run a small business.
I’m still her back- up, I fill shifts if Home Care can’t make it and carry out a few nursing-type duties that she prefers Mom to do. But she’s strong now, and doing well.
However…. It seems that God, in his wisdom, wanted me to have another shot at trying to navigate the system.
A few years ago it became apparent that my mother has dementia. Mom’s condition is deteriorating. And her needs increase. A point came when I realized I was starting to feel the same stress, the same helplessness,the same hopelessness I had felt early on with my daughter.
Right around that time, I came across a Newsletter for the Alberta Caregivers Association.
It advertised their 9 week COMPASS course, and I thought, “Why not? This time, I’m going to be proactive!”
There were only 5 of us in the group, including the leader. Each week we talked about a different caregiver-related topic. Nothing was really new. I’d read up on all of this myself. Self-help is self-help. But there was a twist. Something self-help couldn’t achieve. Each week, I listened to the stories of the others.I realized I was hearing from them the same excuses and rationalizations I used to justify allowing caregiving to consume my life.Each session took me further on a road of self-evaluation. When the 8 weeks were done I had achieved a change of mind.
This time, I would do things differently.
I began to look at the system through new eyes.Now I see The system is a machine. People working within it are given a specific job description. Each job level has a limit to its authority.
Each person in the system is expected to do what he/she is tasked to do.And no more.
NOW, when my mother’s case manager calls and says my mom needs this or that,
I have 3 things I say.
“I don’t know how to do that.
If we don’t tell the system we’ve reached our limit, it simply rolls along, oblivious. Because it’s A SYSTEM. Not a person.
As Caregivers, we sometimes take on responsibilities that the system is actually set up to do.
It doesn’t know we’re doing them, so it doesn’t volunteer.
Right now my Mom is at a transition point. She’s in Assisted Living, but she needs to move to Long-Term Care. When I was told this,I forgot to ask my questions.
“I don’t know how to do that.
Instead of asking my questions, I started to look for a new place for her to live.I stressed about it for several days. I did some internet searches, not really clear what I was looking for.Finally, I stumbled across an Alberta Health website with a link to a page that took me to another page that said “If you want to know about Continuing Care, click here.” I clicked.
Right before my eyes was a document detailing the rules and criteria for each level of Continuing Care – from being in your own home all the way to Long-Term care. It’s called Alberta Continuing Care Health Service Standards. Knowing what’s available,and learning and using their language makes asking for supports much easier.
For my mom’s situation, as I read through the document, from what I could tell, we HAVE to go through Alberta Health to find Mom’s next residence.
When next I talked to her Case Manger I asked, “What’s the procedure now?”
She explained: “Your mother’s case will go to the Home Care Review Committee.
They will refer her file to CCMT.”
I stopped her “What’s CCMT?”
“The Community Care Management Team.”
“And what do they do?”
“Well, I don’t really know. “ she said. “They keep us involved, but then … Well, they’ll have to tell you.”
So once again, we’ve hit a ceiling in the system. Now, though, I understand. We have to wait! The system does things in its own time. It does things its own way. I’m the one doing things differently. First, I’m telling them what I’m equipped to do. Before I fall apart, I tell them my circumstance and my limitations. Before I’m overwhelmed,
I ask “What’s next?”
I ask, “How will that be done?”
If they assume I’m going to do it, I’m quick to STOP and consider before taking on something new.
If I’m able … good. If not, I tell them. Then I wait to see what they will do.
I’ve learned that it’s MY responsibility to alert the system to MY limitations. If I don’t, it can’t respond. When I do, the system finds a way. It just needs to be pushed up and over into the next level. It makes much more sense to engage our Health Care system pro-actively; to get help so both caregivers and recipients can remain as stable as possible.
My getting to the point where I was hospitalized was a really expensive burden on the system,
And very stressful for my family.
It makes sense to say, “I simply can’t.” I’m learning. I hope ALL of us will learn.
As caregivers, we need to keep our limited energy available for the things we CAN and SHOULD be doing.To achieve that, we have to work WITH our Health Care systemTo allow it to do what it’s capable of doing.
Don’t automatically agree.
Don’t assume anything.
The system WILL listen!