Caregivers are not clones. However, many scientific articles, books and websites approach the subject of caregivers as if they were a homogeneous mass.
It would seem that the type of relationship we have with our loved one with a cognitive illness can influence our experience of caregiving. Meuser and Marwitt conducted a study in 2001 with 42 spouses and 45 adult children whose loved one had a neurocognitive disease (dementia). One of their goals? To identify and compare the feelings, motivations, fears and meanings expressed by participants in each of the two groups to help improve interventions for caregivers.
We hope that you will find in the following table some food for thought, but above all, avenues for communication between caregivers.
My inner monologue if I accompany…
My husband or wife
Mild disease
« We will live through the disease together, as we always have. There’s nothing we can do about it anyway. I know he won’t be able to do what he used to do, but I’m here. Only I shudder at the thought of dying before he or she does. Who will know how to take care of it if I’m not there anymore? »
What concerns me at this stage of the disease…
- It does me no good to deny the disease, it won’t make it go away.
- I’m sad and I don’t mind showing it.
- I think about the impact of the disease on my spouse’s life. He or she does not deserve this.
- I will soon have no partner to keep me company.
- I oppose a transfer to a care facility. I am capable of caring for him or her!
Moderate disease
« I am even sadder than when he first got sick. If I’m so sad now, maybe my grief later on will be less difficult… I also have anger towards my adult children. It seems to me that they could be more involved! I don’t ask for that much: even a few hours would satisfy me. It is difficult to accompany. It takes all my time, attention and energy. The illness of my spouse has caused us to lose our intimacy and our social network. Deep down, I feel alone. e. Right now, I feel like she is more my child than my spouse. I miss our relationship before the illness, I miss her presence. I focus on being a companion, because it is important for me to do my duty and be a “good” spouse. »
What concerns me at this stage of the disease…
- I am even sadder than before. I feel angry too.
- I think about all the things I am losing: our relationship and my partner’s company.
- I feel that it is my responsibility to support my partner through this illness. I do what I can and give her everything I have.
Advanced disease and death
« I had to transfer my spouse to a care facility after all. I’m relieved, because I really couldn’t take it anymore. This is certainly a turning point in our relationship as a couple. What am I saying? There is no longer a couple relationship. He’s placed, but I feel responsible for his well-being anyway. And then, when I visit him, I sometimes get a hug, a caress from him. I love these moments. I feel disconnected from my family and friends. I would like to get closer to them, but it is not easy to do. Our exchanges were very emotional and I still resent them. Do I make sense of my experience? I have no idea. Right now, I’m exhausted and want a break. »
« My spouse passed away some time ago and I have to say that I felt relief at first. I know he/she is at peace and I don’t have all these responsibilities on my shoulders anymore. However, I feel a lot of pain. I would have liked to talk about it with my sister, but since our fight, we don’t talk anymore. »
What concerns me at this stage of the disease…
- I’ve never felt so sad.
- I feel angry, too.
- What now? What am I doing with my life?
- I feel lonely. e. I don’t know how to live without his company anymore.
My parent
Mild disease
“I cling to the image of Dad from before the disease. There is no way I am letting him go, because if he were to die, what would that make me? An orphan? No way! Besides, with all that she has to do, it seems to me that Little Sister/Big Brother could help me a little, right? We all know, it’s always the same people who do the work! I expected better from her, it’s really disappointing.”
At this stage of the illness, the strong emotions that the adult child does not dare to express to his or her ill parent can be vented to other family members. That’s when a conflict arises. Or two. Or three. It’s convenient, since focusing on an emerging conflict is much less painful than reflecting on Dad’s illness. Of course, the transfer of pain happens unconsciously.
What concerns me at this stage of the disease…
- I deny the illness, Dad/Mom is not sick.
- I avoid feeling or showing my emotions.
- I fear losing my freedom
- I do not want to project myself into the future. I stay in the moment.
- I approach the situation rationally and pragmatically.
- I inform myself: I want to know everything about the disease.
- I resent the idea of placing my parent in a care facility. I prefer not to think about it
Moderate disease
“I can’t believe what I’m about to say, but…we may have to ‘place’ Mom in a nursing home. I am angry at the disease. It’s maddening that my parent can’t do things on her own anymore, doesn’t recognize me, doesn’t know her way around. It’s maddening, too, to see how his health is taking a hit. It’s maddening, finally, not to be able to deny the illness. I make decisions for my mother, I protect her, I take care of her: I become my mother’s mother. And that doesn’t enrage me. It breaks my heart.
What concerns me at this stage of the disease…
- Volcanic eruption of my emotions: I am angry, I am frustrated and I am sad. Why do I have a sick parent?
- I feel like a burden
- I feel ashamed because… I hope my parent will die soon.
- I think about the impact of the illness on Mom or Dad’s life: it’s degrading and I’m sure it’s not what she or he would have wanted.
- I worry: what if I develop this disease later?
Advanced disease and death
“We transferred my father to a nursing home yesterday. We couldn’t take it anymore. To tell you the truth, I feel relieved, because I can breathe a little. Honestly, I don’t think I’ve ever felt so much pain. I wish I had taken advantage of Dad’s presence when he wasn’t sick. I should have given him more attention, been more tolerant. I should have taken advantage of his presence while there was still time. I am worn out, mentally and physically tired from the whole experience of my father’s illness. I don’t have the energy to fight against… against what, actually? Life? In any case, he will die and I will soon become an orphan. Since his illness, he gives me hugs and kisses. It’s fascinating to see this side of him. I really appreciate it. And I was lucky yesterday afternoon; my father recognized me! I only wish he hadn’t talked to me about wanting to die… On the one hand, accompanying him through his illness was a very difficult experience. On the other hand, I feel that I have grown as a person. I realize that I was able to accompany him well and I am sure that if he could talk to me, he would have been grateful for what I was able to do for him.”
“My father passed away some time ago and I have to say I felt relief at first. I knew he had gone in peace. I was finally rid of all the responsibilities I had been carrying for a long time. However, my sadness came back in full force when I realized that I was now fatherless. At least I can always count on my friends to comfort me.”
What concerns me at this stage of the disease…
- I feel as if my very great sorrow is subsiding a little.
- I have regrets about what is no longer.
- I am not the same person I was before Mom/Dad’s illness.
Alors, que pensez-vous de ce récapitulatif ? Vous reconnaissez-vous dans certains de ces exemples ?
