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Memory loss, confusion, and unpredictable mood swings are just some of the symptoms that characterize Alzheimer’s. To mark World Alzheimer’s Day on Monday, FRANCE 24 spoke with two people who care for someone with the disease about how it has transformed their lives.
Alzheimer’s is the most common degenerative brain disease and the leading cause of dementia. In France, there are currently 900,000 people living with him. As the country’s population continues to age, approximately 225,000 new cases are diagnosed each year.
The way Alzheimer’s slows down the brain means that it affects not just the patient but their loved ones as well. While some diagnosed with the disease decline rapidly, others require long-term care and support.
Overall, about 3 million people were affected by the disease in France in 2020, according to the Alzheimer’s Research Foundation (Alzheimer’s Research Foundation). This number includes patients, healthcare professionals, and the hundreds of thousands of family members who act as unpaid caregivers.
Here, two people who care for loved ones living with Alzheimer’s share their stories.
Memory loss and difficulty with tasks.
Over the past six years, François *, 85, has seen his ability to function gradually decline. His life is marked by memory lapses that have forced his 79-year-old wife Annie * to give him constant attention.
“Today, for example, I asked him to cut the grass. It is perfectly capable if I put the mower in its hands, plug it in, and turn it on. But it is absolutely impossible for him to do these things on his own, “he told FRANCE 24.” What’s more, it is difficult for him to understand how objects work. I wanted to mow the porch, like the mower was a vacuum cleaner. “
Often characterized by the memory loss it causes, Alzheimer’s disease gradually attacks other areas of the brain and can affect a patient’s speech as well as their ability to complete simple daily tasks. This can lead to changes in behavior, which can sometimes take an aggressive turn.
“The nights are particularly difficult,” Christiane *, 73, who takes care of her husband Jean-Pierre *, told FRANCE 24. “She wakes up a lot. Sometimes she screams or falls out of bed, but doesn’t remember any of it. It’s very disorienting because I never know what to expect. “
‘A mental test’
“This thing just fell on me so fast. It was brutal and I wasn’t ready for it, ”Christiane continued.
Her husband was diagnosed this summer after she took him to the hospital because he was feeling unwell. Since then, its decline has been rapid.
“He can’t go to the bathroom alone anymore, I have to be with him constantly. It is very difficult. I have no training as a nurse and lose my patience very easily. My life has turned into hell, ”Chistiane said.
Meanwhile, Annie has had a very different experience with the disease, which has progressed slowly in her husband over the years.
“Before, I didn’t know anything about Alzheimer’s. Now what surprises me, in our case, is that it is a slow form of agony, ”she said. “Of course it is better for my husband if the disease progresses slowly … But it is a mental test.”
Like Christiane, Annie often loses patience with her husband. Although it is not uncommon for a caregiver to feel this way, according to specialists, it can be difficult to understand.
“I’m not very nice, I can’t stay calm and I can’t control myself in this situation, which is not normal,” said Annie. “She is stronger than me: I react and then I get angry with myself. Especially when others are watching. People do not understand why I am not more supportive, but it is difficult to leave everything. They don’t realize how suffocating the situation is. “
A growing sense of isolation
Like many caregivers, Christiane has seen her social life shrink after her husband’s diagnosis. Former Human Resources Director, she has found it difficult to bear.
“In my previous life, I hung out all the time. I exercised and had volunteer activities, ”he said. “Now, I rush when I go shopping because I’m afraid something will happen. I am a caregiver. Some people look at me differently now, they wish me good luck. But I don’t need luck, I didn’t choose this situation. I had no choice. “
Annie has also seen her contact with the outside world diminish over the years. “Our circle of friends has shrunk because my husband cannot communicate in the same way. Fewer people visit us, ”he said. “But what really hurts is the distance with the family. I can’t go see my son in [the western French town of] Rennes, because I would have to sleep there, which is completely out of the question. “
While some symptoms of Alzheimer’s disease can be controlled with treatment, there is no cure for the disease. As a result, many caregivers feel powerless to stop its progression.
“The lack of options corrodes me. It’s heartbreaking to know that there is no hope, ”explained Christiane. “I drag my husband from one date to another, even though he does nothing. It is a hypocritical system. Now I live from one day to the next, trying to preserve my health. I’ve never taken any medication before, but now I can’t sleep without taking something for anxiety. “
‘I will have to sell the house’
There are several care centers in France that care for patients who have lost the ability to function independently and, in particular, those with Alzheimer’s. For many caregivers, it can be a nice breath of fresh air. However, they can be prohibitively expensive.
“In my situation, I have to think about what comes next and do my accounting,” Christiane said. “A place in a healthcare center costs between € 2,500 and € 3,000 (per month). It is the equivalent of all of our monthly retirement payments, so I will have to sell our secondary residence. Degenerative disease is the death of heredity. “
Although Annie has long avoided thinking about it, she is now considering a similar scenario.
“I will have to sell the house and live somewhere else. My son is pressuring me to save more money. Until now, I have always tried to maintain a certain kind of nonchalance. But I’m more stressed this year, I can feel the end is near. “
The average life expectancy of an Alzheimer’s patient is 10 years after the first appearance of symptoms. But the disease does not affect everyone equally. While some die quickly, others can live for decades in a total state of dependency.
* No last name given
This article was translated from the original in French.
