April 2017 Caregivers Deserve Better.

And Then I Got Angry

No one knows the child like the parent. 
No one knows the vulnerable parent like the adult child.

Consider my experiences. I would like to tell you that these experiences are uncommon but they are not.

I told my mother's family doctor that she could no longer remember how to bake a potato or to find the light switch in her hallway. I asked for his help.  He responded by asking her how her memory was. She said, "Oh it's fine." He looked at me and said, "Then we don't need to discuss this now”.
AND THEN I GOT ANGRY.

I had no idea what to do next. I didn't know that I could have referred my mother to the Geriatric Assessment Program (204.982.0140). I struggled to convince her that she needed help. As her stress increased she began taking more little “nerve pills”.

Two months later she had a fall and ended up at Misericordia Urgent Care. The doctor asked me if I knew that my mother was on three different benzodiazepines. Huh? Benzodiazepines she said cause confusion and falling in the elderly. Later, I checked mom's medicine cabinet. I found 2 bottles of 100 sedatives labeled "Take As Directed' and a bottle of sleeping pills. At a follow-up appointment with her family doctor, I told him what I had learned about these meds. His response was, "Well, that's what a layperson might think."
AND THEN I GOT ANGRY.

I made an appointment with a pharmacist to go over my mom's prescriptions. He validated my concerns, recommended some changes and arranged to blister pack her pills.

A year later she spent several weeks in hospital. About 3 weeks after she was admitted I noticed that she was becoming extremely agitated. I asked to see what medications she was on. Her anxiety medication had been stopped by the admitting doctor. I could have told them that this anti-depressant was not for depression but for a lifetime anxiety issue. But no one asked.
AND THEN I GOT ANGRY.

I took me two weeks to convince them to restart this medication. I persisted until I managed to speak to a doctor in person.

A week later I got a phone call from the hospital at 2 AM to tell me my mother had passed away. At 2:15 I got another call to tell me it was a mistake! Her roommate had passed away.
AND THEN I FELT NO ONE CARES..

I became determined to find out how to get better care for my mom.
  • I made an appointment with the hospital social worker to get some advice on how to navigate the system. She could have helped so much if I had known to go to her earlier.  Her job is to be the liaison between the family and the hospital.
  • I found A Guide For Caregivers published by the Manitoba Government.
  • I discovered the Manitoba Institute for Patient Safety site. I read Advocating for Yourself and Others . I found the Advocacy Toolkit.  I learned how to become my mom’s patient advocate. I wished I had read all this before we were in a  crisis.

AND THEN I GOT ANGRY BECAUSE I HAD TO LEARN EVERYTHING ON MY OWN.


NO… is not always an acceptable answer.
Here are 5 responses for challenging situations.
1.       Respond - Really? That’s interesting. I was hoping for a different solution.
2.       Express Concern – My concern is ….
3.       Ask about Alternatives - Are there alternatives we could consider?
4.       Request an Explanation – Can you help me understand your decision?
5.       Persist - I’d like to meet again to discuss this further.

If you aren't making progress, call for back-up. Take someone with you who can add leverage to your position.


Never let the attitude of others be an obstacle to getting the best care possible. 

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