Peter Whitehouse, an American neurologist and one of the leading world experts in Alzheimer’s, says that neurodegenerative diseases do not “take over” older people and can not dominate them or nullify their humanity, but simply change the way they live their lives. “There is no complete loss of self,” says Dr. Peter Whitehouse “and the disease never prevails over the person.”
To date there is no cure for this disease and to live as a family the relationship with a person who lives with dementia know that it is not simple. For those living with the disease it is not so simple, but to live a quality life despite the diagnosis is possible.
Never as in this period when you feel powerless before a diagnosis of dementia, we need to share new ways and tools in the care relationship.
Thanks to the Sente-Mente® project, people with dementia, family members, socio-health organizations, and Municipalities have the possibility of being ferried beyond the tragedy of the disease and train themselves to greater self-efficacy and awareness.
The Sente-Mente® Project, created in Italy in 2014 thanks to Letizia Espanoli and its collaborator Ilaria Filzi, is an innovative model that desires a new socio-medical world ready to welcome those who live with Dementia, because it is time to restore dignity , defend and enhance the vital core contained in each person.
Letizia Espanoli in her latest book “#lavitanonfinisceconladiagnosi”, writes “I learned that pain tears your guts, that anger erupts you inside and leads you into the labyrinth of the gods: because it is precisely to me, because it belongs to him. I learned that in the dense gaze of piety hides the incapacity to proceed, to go beyond. However, among its folds it pulsates and sprouts the greatest school of life: the pain that passes through turns into new possibilities. “
As a delighted person who was part of the Sente-Mind® model, I had the opportunity and the honor to meet different people and families who daily deal with their co-existence with dementia. So I chose to share the extraordinary words of a family member who is experimenting with the potential of the tools of the project and is training to live the relationship with her husband in the best possible way.
A BRAVE WIFE
During one of our meetings the importance of feeling our emotions, but also those of the person we care about, emerged. In agreement with this generous lady, I share some significant passages of our meeting on this page, because we believe that her experience can also be helpful to other family members.
“I always try to feel his emotions and try to choose those ways that kindle the light.
I happen to share how lucky we are to love each other so much, to have the warmth of the family, but also that every day is a new day and we can get up.
Once among us these words hardly came out, but now for me it is a continuous training.
The first few times I was struggling, but now it comes naturally to me.
I am discovering a new life, it is true that it has changed, but I am happy in spite of everything.
But I understand that it is also important to take care of ourselves.
If I’m not well, it’s difficult for him. “
Has your way of talking changed since he lives with dementia?
“I am amazed at how I became. I often write on my notebook all the things I want to learn to see if I can give him my best answer.
Perfecting language works in the relationship, but also in situations.
Yes, I have another way of talking. “
What would you say to other family members of people living with dementia?
“Honestly, our meetings have changed my life.”
She smiles at me, but I tell her that I too often learn something from her and that the merit of her best quality of life is all her own, for what she chooses to do every day despite the hardships.
I CHOOSE WHAT MAKES ME GOOD
What are the things that make you feel good?
“I allow myself moments in the family that I know that fill my heart and make me feel better, for example spending time with my children and my grandchildren gives me joy, because with them I’m sure to smile and play. When I feel tired and tired, that’s the moment when I decide to capture all the beautiful things of the day, as you proposed to me.
There are things that we can not change, but we can choose which ones to devote our attention to. It depends on the situation and the moment, but I usually feel different experiences to get better, such as reading, music, movement, I even choose to smile and breathe. “
How do you make the most difficult moments to choose these experiences?
“When I’m in trouble or angry or sad, I tell myself I do not want to be like that and I wonder what I can do to get better? How do I intend to make it happen? These questions you proposed to me in our meetings work. Do you think that one afternoon I was angry with him, I was desperate, but I decided to go to turn on the radio and fatality there was a very happy song with nice words and I immediately took a box and I recorded it.
I even called the radio to ask if I could do a dedication to my husband. “