It’s Sunday. Martin visits his mother.

She moves anxiously besides her husband and her son. With wet hands, a humid forehead, the mother of Martin tells them that she saw ghosts at home.

“Are you sure that they were ghosts mom?” says Martin.

« J’ai l’impression que oui, mais je ne suis pas sûre » répond sa mère.

Martin notices the indecisiveness of his mother. Her anxiety is palpable.

His mother adds: “The other day, I played on the floor with my doctor…”

“Are you sure mom? Martin says, a little discouraged.

- Yes, it’s unusual.

This time, not knowing what to answer, Martin was forced to give up.

Powerless, he leaves the room, letting out his emotions.

 

And you, neurocognitive illnesses, are you familiar with them?

Caregivers, family members, health professionals, I share with you the experience of Martin, our director at Groupe Innova.

To finish with the taboos, explain the challenges of the caregiver and create a movement of solidarity.

 

The disease

It’s been a year and a half that the mother of Martin has dementia. The doctors hesitate between a Lewy body dementia and Alzheimer’s dementia.

She has symptoms that are psychotic and anxious/depressive. In addition, getting adjusted to something new is a challenge for her since the diagnosis:

“She had a car at the time. If she had an appointment somewhere, she had to do the path with my father before going.”

To this, you add a deficiency in time orientation, problems with memory and language. It seems that her condition is deteriorating very fast.

 

Daily life

Therefore, Martin’s mother accomplishes her daily activities with more and more difficulty.

For example, she can have difficulty dialing, using the television or the bath faucet.

Because she is losing autonomy and that everything is a mountain, she calls Martin a lot. She did not do that before her illness.

In the past, Martin’s mother was a very active woman. She used to do Tai Chi and she would go to see exhibitions with friends. Now, she only takes walks with Martin, or his sister or an employee who helps her take a bath.

 

Help given by Martin and his sister

Martin and his sister have distinct roles when it comes to taking care of their mother.

Martin’s sister, above all, takes care of the communication with the doctors. At the beginning, she had difficulty having access to the medical file for confidentiality reasons. However, when the family doctor of Martin’s mother realized the severity of the situation, they became more involved in the file.

As for Martin, he takes care of the financial aspect and bank transactions and everything that involves handling (for example the sale of her car).

With regards to placing her in a residence, Martin and his sister are both involved.

 

A health system in difficulty

Not only does Martin have to cope with his mother’s illness, but he is also confronted with a health system that is also failing. He believes that the health care workers are of good faith, but there is a lack of personnel to offer the services. And among those that help his mother, some are not professional (ex. do not ring before going in) or do not know how the system works. The following quotation reflects well the disorganization of the health network:

“One time, my mother got mixed up with the dose of her medication. So the CLSC sent someone to give her the pills two times per day. But my mother did not understand why she did not receive her sleeping pill. We had to make several calls to understand that there are 3 periods in a day (morning, evening, before going to bed). In reality, my mother was in the second and third periods. So when they came at 18h, she had to be given all the pills, including the sleeping pill. The protocol was therefore incorrect at the start. Was it an error from the CLSC? Or the pharmacy?”   

 

The challenges of being a caregiver

For Martin, being a caregiver becomes difficult with time. He loves his parents a lot but does not see the need to see them all the time. However, his mother’s illness means that the family cocoon is much closer.

Fatigue follows insidiously. Martin takes an average of two or three procedures per week, together with his work that is demanding. Every Sunday, he visits his mother. He finds it hard to not being able to do leisure activities or hobbies with her. Martin has to constantly manage his mother’s affairs:

“Now, what’s wrong? Did you take your pills?”

Whatever it is, this heaviness requires him to set limits towards his loved ones. For example, Martin is very clear that he will never stop working to take care of his mother. However, he feels torn and guilty because it’s his mother that is not well.

 

 

In fact, the illness of his mother makes him mourn endlessly.

“It is waves that come and go.”

Moreover, Martin has to get used to the fact that he is the one taking care of his mother and not the opposite.

“I have nice memories when I was six years old with my mother. She was wonderful, she would take me anywhere, we would have fun. She was the woman of my life. I did not want to go to kindergarten. Lately, my mother told me, Martin, we get along very well, if there was not have all of this, we would be together all the time. Her emotion was like my emotion when I was six years old.”

 

Transition towards placement in a residence

According to Martin, the placement in a residence should be positive for his mother because he feels that she is anxious in her own home.

But of course there is also an element of uncertainty. The well-being of his mother depends to a large extent on the future place of residence: CHSLD and Alzheimer's home were mentioned. An Alzheimer’s home (https://www.lapresse.ca/actualites/sante/201803/01/01-5155693-un-nouveau-concept-de-maison-alzheimer-au-quebec.php), a Dutch concept, welcomes residents who have this illness in a flexible and supervised environment. Martin and his sister are committed to finding the best possible living environment for their mother.

When the latter will be moved, Martin will visit her often, but he will not be obliged to go every Sundays.

“There is a liberating side to it.”

Resources for caregivers

Up to now, Martin and his sister use resources “that are more traditional” like the doctors and health professionals. They do not call upon specific organizations for the caregivers. It is possible that they will sometimes consult them later, knowing that the most complicated is to understand how all these resources work.

 

Work

Martin considers that his work is adapted to the reality of a caregiver.

“I have freedom. In my own case, I can switch my workload without asking. I have flexibility in my work, I can work at evening.”

He says however that not all jobs are flexible.

He stresses at the same time that he has an important job, and that consequently, there are a certain amount of hours that he can dedicate to his role of caregiver (about a dozen hours).

Lastly, he notices that the health system is more adapted to the health care professionals rather than to the caregivers.

“You speak to the doctor when he/she is available. And he/she is not available often. The health care workers are completely overwhelmed. The health care system has become chaotic.” 

 

Financial support 

Neither Martin nor his sister requested governmental financial aid for caregiver because their respective revenues have not been affected. Now, this choice could be reconsidered if Martin’s sister works 1 day less per week to take care of her mother.

 

The support in his circle

At this point in time, Martin is supported by his sister, his wife and his aunt. His sister reacts more and he is rather calm, so the two complement each other. As for his aunt, (https://blogchicchezvous.com/2021/05/03/proches-aidantes-au-front/), she is a big help because she listens very well. She puts things in perspective. She understands Martin because she is also a caregiver.

“We have good chemistry. She has a good heart.”

 

Advices to overcome the challenges of the caregiver

And if, like Martin, life required you to become a caregiver, what would you do?

 

Advice # 1

Let it be said, neurocognitive diseases are tiresome!

But do not stop training and reading up on the subject. Be curious. Master them thoroughly.

The more knowledge you have on the illness, the more you will have a new perspective on the experience you are living.

And the more you can make the public aware of this issue.

 

Advice # 2

 

Surround yourselves.

Knock at the door of family members, of your friends, understanding colleagues, of persons who are living the same situation.

Take the time to build a good support system. Consider tolerating environments.

All this social support will diminish your stress.

 

Advice # 3

Being a caregiver is a little like being a dancer.

You have to help your loved one while taking care of yourself. It’s a continuous movement between these two poles.

There are no miracle recipes. You have to continuously reposition yourself with as much flexibility as possible.

This means helping, and delegating your tasks with your support system and setting limits.

So, what do you think of these advices? Give me your comments if they would be applicable in your case?

Thanks to Martin for having generously shared his experience as a caregiver.