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La presente section concerne vos activites. Elle est très importante car elle vous aide à vous pencher sur ce que vous avez vecu, sur ce que vous vivez et sur ce que vous vivrez, tant comme personne qu’à titre de proche aidant. Nous vous invitons à reflechir aux changements que cela impliquera dans votre vie, de même que les espoirs et les objectifs qui seront les vôtres.
Chaque activite de la presente section s’accompagne d’un court guide renfermant des idees pour vous aider à demarrer. Vous pouvez decider des activites que vous souhaitez faire tout comme de la manière de les realiser.
Vous pouvez les tenir confidentielles ou en parler à d’autres personnes.
Some people find it helpful to write or talk about their story. You might find it useful to write your story here. Think about the following questions: Who are you? What brought you to this point in your life? What strengths might you draw upon?
Guide: Begin to write your story, below. This is to help you reflect and understand where you are right now in your life as well as the past/where you’ve been in your life. This is your story. You can start anywhere. You can also continually update your story.
You can keep track of the type of behaviours you see in the person you are caring for here.
You can input your health information here.
Printable Health Information Tracker
You can input your medications (prescribed and over-the-counter), herbal supplements and related information here.
Changes in daily activities can happen. They include changes in chores, eating habits, diet, career, etc. This can include anything that affects or alters the way you are used to living.
Examples:
Examples from others who have experienced these changes:
"The money and household issues. I had to learn to trust myself when making decisions and rely on myself or hire someone to do things that needed to be done around the house."
"I try to take care of my own health... exercise classes, eat healthy food."
"Taking over cooking/laundry/planning/finances/some cleaning - when my wife can't figure things out."
"I suppose changing our lifestyle to care for [my wife] throughout the years. Planned retirement and casual employment was put on hold and eventually cancelled as a result of the continued deterioration of [my wife's] mental health and ability to look after herself."
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Changes in the environment include changes in the home environment during the illness and changes of location from home to hospital and long-term care home.
Examples:
Examples from others who have experienced these changes:
"I got to the point that I was unable to care properly at home for my wife. She is now in a LTC facility."
"Our friends left and I felt totally isolated."
"Upon diagnosis - feeling alone, no support. I was unemployed (due to my spouse's diagnosis) and had very little hope. I was deeply depressed and did not know where to turn. Only after making a decision to move to a larger center did help become available."
,These are changes in physical and mental health that you may experience as a care partner.
Examples:
Examples from others who have experienced these changes:
"I get very frustrated. I am not a violent man, but sometimes I feel like smashing things."
"My outlook seems futile. I have had so many relapses and then healthy bouts that it gets discouraging."
"I get worn out, isolated, somewhat depressed, and sometimes desperate to take a break from the responsibility."
"With breaks, having exercise classes (kick boxing boot camp and yoga). I was able to channel my frustrations, focus on just me, making me feel better physically and mentally."
,Changes in roles and relationships often happen as the illness progresses and you may need more help with daily activities.
Examples:
Examples from others who have experienced these changes:
"Every transition was a major change: loss of driving, movement, thinking, decision-making ability, change in personality... he's not my "husband' anymore. He's someone else I often do not like. Our friends left and I felt totally isolated. When children came, he put on a happy face so they had no idea what was going on for me. The personality change was so gradual over the years I didn't recognize it until it was too late for me."
"Having to say goodbye to so many little things."
"Change in role. I am now my parents' main support rather than them being mine. Watching a well-educated, intelligent man struggle to get a sentence out is tough emotionally."
"My husband changed from being a hard-working farmer who could fix anything and everything to someone who basically didn't know what a screw driver was for or how to change a light bulb. It then fell on me to do these things without making him feel stupid."
"Dad isn't able to do things that he used to. It is sad to see. I spend more time with Dad, or doing things for him. I used to ask Dad for help, now he needs my help. "
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Changes in negotiating/advocating for care are related to the continuous need to find the supports you need to help care for the person you are caring for.
Examples:
Examples from others who have experienced these changes:
"I had to spend considerable time with the many caregivers (who were good for the most part) in helping them get to know her needs, likes, dislikes, etc."
"Caregiving is a task for which no-one can ever be prepared - the journey takes many turns - I finally [discovered] respite which is most required: Respite was my salvation."
"Hired a friend to sit with my mother, so I could get out of home for a couple or three hours, once or twice a week, to work or to exercise or to spend time with myself. Also, Mom went to day program twice a week, set up by home care, homecare nurse is an awesome woman."
"I've tried to learn everything I can about the diseases that affected my parents... I've attended support groups."
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