Caregiver following two end-of-life experiences

That’s not the way I saw it. My mother was making a life choice that was completely up to her. It was her context, her situation. What she saw as a solution, what was best for her, was the possibility of medical assistance in dying. I was her support person. To support means to be by someone’s side and to help them if need be.

I think it’s a great opportunity for people dealing with a certain situation to decide: do I continue to endure my current condition, or do I organize myself to do things differently?

My mother had been in a precarious yet stable situation for two weeks. She had an aortic aneurysm. The aneurysm was sealed, but was in danger of rupturing at any moment. Her lung was affected and her heart was fatigued.

I thought she might die the next day or possibly the day after, or she might celebrate her 99th birthday in July. I never knew if she’d still be alive when I went to visit her, and when I arrived, I’d hear a care worker say that she might still have some time left… So I was very ambivalent.

Until I said to myself: “I’m going to stop reacting to what everyone around me is saying. I’m going to accept the situation as it is, here and now, without necessarily letting go of my feelings.”

One day, my mother asked me what I thought about her requesting medical assistance in dying. My first reaction was: “Look, Mom, it’s your choice, you decide. I’m your son, I have my own feelings, but it’s not my place to interfere in your journey or in such an important decision. I couldn’t see myself influencing her, let alone trying to change her decision because of the way I might have seen things.

The next day, when I arrived, she had already taken the necessary steps to fill in the form. When the doctor came to ask her questions for the medical evaluation, she pointed out that she was having trouble breathing and was uncomfortable. She told him that when she was young, a villager had died of asphyxiation. The last thing she wanted was to go through this situation, or remain in her condition. She wanted the situation to be dealt with as quickly as possible. To qualify for medical assistance in dying, a person must have at least three end-of-life conditions. And my mother did.

On the day she died, my mother was 98 and a half years old. At that age, months count!

Since 2010, I have benefited from the services for caregivers offered by SEBSA in Saint-Amable and CAB in Boucherville. I take part in meetings and activities, receive support and services.

At the hospital, I didn’t need to meet with a social worker, outreach worker or nurse to ask for more details. I was sufficiently equipped and informed. We had discussed medical assistance in dying among caregivers in the support groups of both organizations. I knew where I stood.

It’s important to be able to talk about it, and to feel welcome for doing so! In support groups, we’re all caregivers in contact with loved ones who are suffering, at different stages, with different problems and illnesses.

For some people, it’s the beginning of support, while for others, it’s the end. I’m still in these support groups today, despite the fact that my mother passed away a few months ago. Next week, I’ll be starting workshops on bereavement with the Les aidants des Seigneuries support service. I also took part in a series of bereavement workshops following the death of my wife in 2022.

Before becoming involved in the Board of Directors of l’Appui pour les proches aidants, I was a member of the Board of Directors of l’Appui Montérégie. Even back then, we were wondering how best to reach out to caregivers in the early stages of their caregiving experience. It may seem natural to take care of a loved one who is beginning to have a health problem. However, the illness is often degenerative and long-term. So how do we reach out to caregivers who don’t even know they’re caregivers?

The idea came to me that if people who recognize themselves as caregivers write “caregiver” in their email signature, it’s a way of encouraging caregivers to identify themselves as such.

After a bereavement, you can still feel like a caregiver. Personally, I define myself a little less that way, but I still sign my e-mails that way!

Since 2010, my wife had needed more and more support. In 2022, she was bleeding internally, her intestine, liver and heart were failing, and she was suffering from kidney failure. The doctor suggested that she continue her treatments or stop them. My wife replied, “Let’s stop struggling.” The doctor made sure she understood what that meant. She asked how much time she had left…

These are two completely different situations and contexts. However, my perception of death and my understanding of this transition were the same for both of them. In other words, the way I acted with each of them was different, but my mindset was the same: to be there for them and support them in their decisions.

I must say that, at the time, my caregiving duties with my mother were light. I’d put drops in her eyes every evening, sometimes I’d run errands and help her manage her personal finances, but overall, she was self-sufficient!

After my wife’s death, and no longer having to worry about taking care of her 24 hours a day, I felt an emptiness, a bit like a second retirement, this one involuntary. I was in recovery mode for almost a year. I was then able to accompany my mother more with certain activities and see her on a daily basis. A restaurant, church, a social activity… Every day, we had a little activity of our own. She really enjoyed our time together.

And for me…

Every situation is different. Personally, the meetings I’ve had in support groups for caregivers have helped me enormously. Yes, there’s the end of life, but before death, there’s the whole process.

I had a lot of questions about how I was going to perform all these tasks. Working with people from both organizations, over the years I’ve learned to adjust the way I do things and the way I am. In 2022, when my spouse had been bedridden and totally dependent for two and a half years, it was peaceful sharing the last six months of her life together. It was a great moment in my relationship with her! Of my long experience as a caregiver, this is the one I remember most, and the one that gave me the most satisfaction.

• Les aidants des Seigneuries du centre d’entraide bénévole de Saint-Amable;
• Centre d'action bénévole de Boucherville;
• Qui-libre. Guide de prévention de l’épuisement des proches aidants;
• Helping the person I am caring for with their request for medical aid in dying;
• End of life;
• “André became extremely calm,” once medical aid in dying was accepted;
• Resource directory.

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