The strength of love: facing illness with care and tenderness
Maria Rosa, age: 69
The feeling of tenderness that she aroused in me and that I tried to have with her is what prevails in me.
Picture of Orna from Pixabay
Who do you take care of? For how long?
I took care of my mother for three years.
She began to show signs of difficulty in managing her autonomy and had difficulty remembering things. She started getting lost in places she used to go, she no longer got her bearings, she lost her medical records.
The situation worsened with the arrival of the pandemic: she did not memorise that she had to go out and was not at all aware of the danger she might be in.
Tell me a little bit about yourself: how your days unfold, how care work coincides with your other life activities such as work, family and your passions?
There was an evolution in her condition, at first it was a matter of supporting her and accompanying her on some specific occasions. Gradually, her condition worsened and I started going to her house every day, spending 3-4 hours with her. Later on, I also started to spend the night with her, until I spent long periods with her, taking turns with my siblings.
Then it was necessary to supplement the care with an outside presence for a few hours and this was very difficult for my mother to accept. We then had to involve a domestic care worker, which my mother was unable to accept. Furthermore, all this meant that I had to supervise and guide these people and that was very tiring for me.
Nine domestic care workers took turns because they decided to quit their jobs or were not accepted by my mother.
This management of caring for my mother definitely impacted on my relationship with my family, I had much less time. And also, in the management of my free time, I drastically reduced the time I spent on my hobbies and volunteering.
What are the main difficulties you encounter?
My mother’s initial categorical refusal to lose her autonomy, starting from giving up driving and taking her medication independently to assisting with hygienic care. Her difficulties then often spilled over onto me, she often refused me and manifested verbal and sometimes physical anger.
Another great difficulty was accepting a stranger to take care of her. She also had moments of aggression with family carers. So, I was not calm.
Also, the fact that her memory was gradually being lost made it tiring to hear the same things repeated often, or that she did not remember that she could not do certain things independently and therefore could not comprehend being in that situation.
Moreover, her condition disrupted certain every day and familiar situations, sometimes making her think we wanted to hurt or kill her.
How do you try to deal with them?
The help between siblings and the support from my husband was crucial.
Of course, love for her also gave me strength; with every change in the illness, everything always had to be rearranged, but I felt I had the strength to cope because of how much I loved her and how important it was to take care of her. In addition, some moments of deep closeness with my mother, of tenderness and understanding, gave me the energy.
It seemed that I had lost so much but it was a challenge I enjoyed, I wanted to do my best to make the most of the time she had left.
Do you feel discriminated against or prejudiced as a carer?
When I was in crisis, I often felt those around me did not understand me and did not understand what I was experiencing and feeling.
I felt that it was taken for granted that I was the only one who had to take care of my mother and that it was my complete and main responsibility.
Sometimes I felt guilty for not being able to handle certain situations. I felt little empathy in those moments. Then I realised that many people in the same situation felt the same as me, and talking about it with other people makes you realise that you are not the only one and you are not alone.
If so, how do they make you feel?
In those moments I felt like giving up everything. But I think the motivation behind it, namely love for my mother, made me stay.
Is there anything you would like people who are not caregivers to know?
Dignity and respect are also due to a person with dementia, and the network of relationships around this person is very important.
Just as much care is given to childhood, the same care should be given to the end of life.
Younger generations should cultivate gratitude, care, respect and dignity for these people, and it is important to remember that people with dementia are not just someone who is ill, but a person.