'I know I cannot beat this monster': Dementia caregiver

By Magda Panoutsopoulou

ATHENS (AA) - Dementia is described as a general term for loss of memory, language, problem-solving and other thinking abilities that is severe enough to interfere with daily life.

Alzheimer's is the most common cause of dementia, according to the Alzheimer's Association.

Dementia is much more. It is slowly losing one’s self, loved one, or mother or father.

It is a slow death, and like many say, it is a disease that steals the mind.

In Greece, there are around 200,000 patients suffering from dementia and 280,000 from a mild mental disorder that is a precursor. About 400,000 caregivers are dealing with patients suffering from dementia, according to the Athens Alzheimer’s Association.

The job of a caregiver is exhausting, not only physically, but also psychologically and mentally.

“In the beginning, you cannot accept this reality, you cannot believe that this is happening to a person you know and is close to you,” these were the first words Sissy Marouli spoke when she described her feelings after her mother was diagnosed with dementia.

Marouli has been taking care of her mother since 2007 and is in a constant battle that is uneven.

The feelings are countless in the first days, she said. “You are in a state of denial, you cannot believe this happened to your own family member. Then you get angry, you can reach stages where you cannot accept it at all and feel desperate, then anger predominates again,” she told Anadolu.

You are thrown into a situation where you have to deal with too many responsibilities at once and it is not only the practical everyday issues but the emotional part, she said.

“I always tell people this: It's like when you are nurturing a child, but the only difference is that the child you nurture it, and you take care of it, and you see it blossom, but in this case there is a big difference; you nurture and take care of this person but in the end you see them wither,” said Marouli.

You cannot feel joy, she said, because you know this person will fade away at some point.

Marouli said how the feelings brought her to a stage where she even thought of putting an end to her life. But “I couldn’t do it because I knew my mother would be left alone after.” Reality brings you back to your senses, she said.

Marouli created a Facebook group, Dementia, Alzheimer's carers, almost a year ago.

The group has 14,000 followers who are all struggling with dementia in their immediate families.

She wanted to inform and engage with others who were in the same position -- a caregiver for someone with dementia -- to know about allowances and the process they had to go through to get any help from the state if the condition of their family member allowed.

All the emotions she had inside -- struggles she went through and even thoughts of despair and isolation from the outside world she faced, inevitably due to her mother's condition -- helped her create the group.

“I did not want to talk to people, I didn’t want to be around people, and I loved being alone,” she said.

“This is when it all hit me and this anguish, I felt became productive because I didn’t like myself,” she said.

Her mother Kuria (Mrs, in Greek) Maria, 89, who was a clothing designer, is bedridden and had to go through several difficult situations, some even life-threatening.

Marouli described her mother as a very tender person, who raised her with care and love as she lost her husband when Marouli was 11, and she had no siblings.

“I was not deprived of anything. My mother did all she could to bring me up in a decent way,” she said.

“I know I cannot beat this monster (dementia),” said Marouli. “But I want my mother to feel the love I felt when I was young, I want her to be decent and clean,” she said, noting it was her way of repaying her for the care she had received.

“When my mother is gone, I would have lost my last root,” she said. “That is why I want to do everything in the best way possible. “

- The role of the state

The expenses were and are enormous, Marouli explained, and they never stop.

Although the state might give an allowance, an illness such as this always brings something new.

“There is the need for a wheelchair, the need for a lift that pulls up the patient and would help you clean and change the sheets in the bed, the lady that you will need to hire to help you, as you cannot in any way go through this alone,” said Marouli.

Some facilities are private and cost a fortune or are not adequate to have your family member admitted, she said.

There are no state facilities or care homes, and they subsidize part of the services or products needed, for example, a wheelchair or any other appliance that would ease everyday care.

Even though there is some aid, the family of the patient would still have to pay a decent amount for the person to be able to live well, especially when one decides to have the patient hospitalized at home.

There are more than 55 million Alzheimer's patients globally, and the number is expected to rise to 139 million by 2050 due to the emergence of approximately 10 million new cases each year, according to World Health Organization data.

As the numbers increase and Greece does not offer long-term solutions to decent nursing homes, it is up to family members to take care of loved ones.

“Caregivers carry an unbearable burden every day, due to the constant strain, mental and physical burden,” Maria Monokrousou, a social worker at an Alzheimer's day care center, told Anadolu.

The care of someone with dementia is extremely demanding and disrupts the physical and mental health of a caregiver. And after years, it increases as it is a long-term process.

“When we talk about dementia, we are talking about a condition that drags on possibly for years,” said Monokrousou.

Caregivers are the people who take most of the burden as caring for patients with dementia can bring countless challenges and uncertainties that could extend for long periods.

“The caregiver is the silent patient,” she added.​​​​​​​