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The silence that remains: Family members of dementia patients have set up unique projects to deal with the disease | Israel today

2022-06-17T05:15:43.384Z


Lior Koren, who cares for his mother Daphne, has set up an information site for families with dementia patients • Heli Efrat Ganot, who cares for her husband Yehuda, has opened a support group for the patients' families • And Etzion Kris, who cares for his wife Rachel and their mothers, has established a club for young Alzheimer's Dementia patients have decided not to wait for a proper response from the state, and have set up ventures to help them deal with the terrible disease that is slowly taking away their loved ones "This is not the disease of the spouse. This is not the disease of the patient. It is the disease of us all."


Lior Koren takes her mother, Dafna Tal Koren, on a trip outside the house.

They are nicely dressed, well-groomed, sit down in a well-known and luxurious Tel Aviv restaurant.

Ostensibly, this is another routine pastime of a mother and daughter.

"I order her the dishes she likes without asking her," Lior mutters with sparkling eyes.

"She is not really able to order. My mother has had dementia for six and a half years. Since she was, to my chagrin, only 63 years old."

Lior takes a breath.

After a moment of silence, she gathers herself.

"It's hard," she tears.

"She's my mother. And I know I have to give her moments of grace and balm amidst all this serious illness. I make sure not to give up on her and her, and do as many things with her as possible. It's complex, there are moments I cry and there are moments when I feel satisfied. "Life, employment and interest. I have never given up."

Like Lior, hundreds of thousands of people live in Israel who care for and feed family members with dementia.

The unfortunate statement of the singer and creator Shlomo Gronich at the Ein Gev Festival about two months ago, following which his family revealed that the singer suffers from dementia, has rekindled awareness of the disease.

"He has disconnections that characterize the disease, and he is not always aware of the things he says. These are some of the characteristics of the disease," the family said.

According to the DMA (Association for Dementia and Alzheimer's), there are about 150,000 people living with dementia in Israel, of whom about 4,000 were diagnosed before the age of 65 - an age considered young for most institutions in the country, which are designed to deal with dementia. The pain that pierces when the person next to them begins to lose the sharpness of thought and memory, to speak without directing his words and forgetting the most basic things.

In a rare move, three family members of dementia patients diagnosed at a young age agreed to be exposed and tell what was on their minds: Lior Koren who is caring for her mother;

Etzion Kris who takes care of his wife Rachel, Rachel's mother and mother;

And Heli Efrat Ganot, who takes care of her husband Yehuda.

In the absence of a proper response from the institutions, each set up his own venture that would address young dementia patients and their family members.

It is important for everyone to raise awareness of dementia, and to reveal the complex and difficult reality in which they have lived since the discovery of the disease.

"You're driving on the left"

Etzion and Rachel Kris before the disease was discovered.

"We tried to live with her, me and the caregiver, but it was impossible,"

Rachel Kris (71) was diagnosed with dementia when she was only 62. Her husband Etzion (74) treats her with devotion, as well as his mother Hannah (98), and Rachel (92)'s mother, who also have dementia.

What were the first signs of Rachel's dementia?

Etzion breathes deeply.

"It was a process. You start to see strange things. For example, she started driving only on the left side of the road. Because of her cognitive problem, she could not switch to the right lane. She was not willing to admit it, but my daughter told her, 'I do not Can travel with you. You only travel on the left. '

"There were other signs, but it did not make me realize that a 60-year-old woman has Alzheimer's (Alzheimer's is the most common of the dementia diseases; NA, BA).

There she lost herself in knowing.

Everything was new to her, and she did not know what was happening to her at all.

For example, we were sitting in a restaurant on a ship.

She went to the bathroom and did not know how to get back to the table.

Distance 60 meters.

I suddenly realized she was not connected. "

When they returned to Israel, Rachel was sent for tests.

"She went through all kinds of tests at Meir Hospital in Kfar Saba, MRI and CT scans, and one day, when we were sitting in front of the doctor, he said to me, 'Inside,' Your wife has Alzheimer's. '"

How did you feel at that moment?

"Rachel realized she was sick, but not the meaning of it to the end. She did say 'I feel confused', 'What's happening to me,' and things like that, but she did not understand that she was going to lose her whole brain.

"I have decided that I will do everything for her, and also for others who suffer from dementia. I am already 74 years old, still working in two companies in the field of business development and busy to the top in the matter of dementia. Not sure there is another person like me Does a lot for them.

"For example, when Rachel could no longer go to a Pilates class, I brought her a home instructor. Then I brought her a Biodance dance instructor (a dance method aimed at strengthening personal development; NA, BA), a reflexologist and accordion player. I found out she loves to sing and scattered full Songs at home, and I brought a high school student who came for two hours to sing with her. "

And how did you persevere?

"I knew I had to take care of myself as well, to maintain my sanity and my strength. I attended a therapeutic workshop of Amda, and there, especially during the Corona period, I vented my feelings.

All the feelings, the suffocation, the angers.

"I walked more than 600 km for Israel. I went to a theater class that helped me relieve pain, and I dance biodance myself. I am also active in the Amda organization, giving lectures to various treatment bodies that will know how to deal with dementia."

Etzion did not stop here, and three years ago he and co-founder Hani Bagrish established a club for young Alzheimer's patients in Moshav Hadar Am in Sharon.

Just recently, a branch of the club was opened in Raanana as well ("It's amazing to see how much balance and employment it gives these people").

"Until the last few years, we would go out for fun and walks together, and at the same time she would be assisted by a caregiver," he says.

"But slowly her cognitive function decreased. She had a hard time talking to me, because she would forget words and it would annoy her. Once she went with the therapist to a movie at Cinema City in Netanya, and insisted that the therapist not help her on the escalator. She fell, of course, and then She just punched the nanny and ran away. Luckily, my son lives close by and he ran and found her. We went through hard things with her.

"It's important to understand that in Alzheimer's disease, speech, thinking, orientation and understanding - all of these are really hurting more and more over the years. But - and this is important - the sick person's emotion remains. When Rachel saw our daughter in a wedding dress, she understood nothing. It was a class. It's heartbreaking. At first she did not respond, and then, suddenly, a tear came out of her eyes and we all cried along with her. ".

This went on for five years, until Rachel's condition deteriorated again.

"Suddenly, a period of very severe violence began on her part," Etzion says quietly.

"She would hit me and the caregiver. All the time. We went to the emergency room with her in the hospital, and after 12 hours we were told - go home. The medical system in the country does not know how to treat people with dementia. We came home. I stopped working. We tried to live with her, me and the caregiver, But it was impossible. "

In the end, Etzion realized that he must put Rachel in sheltered housing in the Sharon area.

"She has been in a nursing home for three and a half years in a nursing ward for the mentally debilitated. Today, on my psychological advice, I come to her twice a week, but every day I am busy with her and receive reports about her."

Etzion has a full stomach for the state's treatment of dementia patients.

"In my journey to study the disease, I discovered to my amazement that there is simply no state. Everything falls on the families, including the payments in institutions, the emotional, mental, treatment, everything.

"Seven years ago I participated in a thinking team whose job was to see how to treat the whole complex of dementia horizontally, but in practice there is no comprehensive treatment. Even the matter that dementia patients continue to drive, for example, is not addressed by law. "Every patient with dementia who has been diagnosed, and a social worker from the municipality, should contact the family and begin treatment of the matter. At the moment, there is no guidance on this issue."

"No inhibitions"

Dementia is a general name for a group of progressive (advanced) diseases that affect the brain, the cause of which is unknown.

Alzheimer's, as mentioned, is the most common type of dementia.

"Unfortunately, we do not know exactly what causes Alzheimer's or how it can be cured," explains Dr. Dana Peer, a gerontologist and occupational therapist, counselor and counselor for family members who treat a person with dementia. In adults.

As far as is known, 4-1 percent of patients discover the disease under the age of 65. The average life expectancy with Alzheimer's without background diseases, which are very common in old age, is 12-8 years.

I mean, people live with it a lot of the time. "

Identifying the disease, Dr. Peer explains, is not simple at all.

Sometimes a person with dementia says things that do not matter.

We all have in our minds a collection of curses and bad words we have learned, and they sit for us inside a closed folder.

"A person with dementia no longer has the ability to keep the folder closed, he has no inhibitions, the words move freely and he pulls them out."

Diagnosis of dementia is made by specialists in geriatrics, psychiatry or neurology, which can usually be reached by referral from a family doctor.

The specialist performs a cognitive assessment, which includes blood tests, physical examinations and even imaging tests aimed at ruling out other neurological diseases.

According to Dr. Peer, after the diagnosis, a variety of medical instructions are given, along with the granting of a continuing power of attorney to the person you trust and even the making of a will.

Despite quite a few attempts to produce a cure for the disease, the market still does not offer drugs that treat it directly.

"There are anti-anxiety drugs, antipsychotics for delusions, and sedatives," says Dr. Peer. "They are not for dementia, but to help relieve symptoms.

The drugs we have are effective at the onset of the disease, and their purpose is to slow the rate of symptoms.

It is therefore important to detect the disease early enough, maintain a pharmacological balance of additional background diseases, and perform aerobic activity if possible, because by raising the pulse more oxygen reaches the brain.

In addition, it is important that the family or the environment try to maintain involvement and social and functional participation in the patient's daily life. "

"There is no way to fight it"

Lior is choked with tears when she admits that those who mainly suffer from the disease are family members.

"This disease is horrible and terrible especially for caregivers," she resolutely said.

"Except for the times when a mother gets nervous because she feels frustrated, she's fine. She walks from side to side in the house, plays with her things, dances. The one who has to keep an eye on her is the family, and they are the ones who suffer. Dot."

Lior (42) was only 35 when her mother was diagnosed.

She is in a new relationship and lives in Tel Aviv.

Her parents divorced when she was 5, and she lived with her mother under the joint custody of both parents.

She has a brother who is four years older than her, and two brothers on her father's side.

She has a degree in communication and psychology, she owns the "Lior Koren" event production company, and recently also operates the JOON website, designed for families of people with dementia.

"Until dementia developed, my mother worked as a witty and sharp family law attorney in her own firm," says Lior.

"She was a very active person. Strong, intelligent, a magical woman. We were always very close."

Today, in retrospect, she knows how to point to small signs of oblivion that appeared early on.

"Mom was mostly distracted. Forgetting little things. She would say 'OK bye, I went,' and I would count to three and she would come back because she forgot something. When the signs of dementia started, they just exacerbated existing features.

"At the end of 2015 I flew with her to New York, to my brother, and I saw that something was wrong. She started asking the same question twice, even though she got a clear answer. State.

"Today, when I understand much more in this area, I know that if there is the slightest suspicion of dementia, the recommendation is to take the person out of his comfort zone to see how he is functioning. Because when he is in his daily routine, he will be able to do it for a long time even if dementia started. But once a person is taken out of the comfort zone, he has to understand and decipher things on his own, which is more difficult.

"When we were in the US, my brother and I started telling her something was wrong, and she tried to 'fight it,'" Lior points out quotes with her fingers.

We did not really know what dementia was.

Who thinks of dementia at age 63?

It is a deceptive disease. "

With teary eyes she remembers how shortly after her mother closed the office, her condition deteriorated significantly.

"She would come to work for me, and forget the phone. She sets up with me and does not come. I found myself quite a few times wandering the streets looking for her. In her experience she did not get lost, but stopped, walked, drank coffee. She does not remember with whom, but with What a friend, or acquaintance. She lives in her own world. "

Lior's mother, almost 70, now lives in her home with Dvir, her partner of 30 years, and with caregiver Marian.

They make video calls and meet twice a week.

"Sometimes she comes to me on foot, a half-hour walk, with the caregiver. It's her sport, and I'm very much in favor."

Although they do not meet every day, Lior manages her mother's agenda with piety.

"There is not so much institutional support for people with dementia," she says.

"When I go to a memory clinic, for example, I barely get a Form 17 from the HMO. Even Social Security did not recognize the fact that my mother needed full nursing care, which is not normal.

"One of the first things you learn is that you must not ask questions. 'Do you remember that?'

- No. The answer is no. She does not remember, so why ask? 95 percent of the time I know how to approach her, comes with good energies and joy. And when she sees me, her face wakes up. A way must be found to bring in small moments of happiness, joy and new experiences, too To create new memories. "

"I miss her"

"Diagnosis of dementia at a young age will usually be very long, because doctors do not think that the reason for difficulty speaking at such an age, or difficulty in extracting words, stems from dementia," says Dr. Nati Blum, CEO of Amda and a social worker by training. One of the problems, that you do not expect this disease to appear at a young age.

Detection of dementia at such an age meets families at a very complex stage in life.

The children are still young, taking care of their own children at the same time, in the middle of a career and the like, and suddenly they have to deal with a close family member who does not find himself.

Dr. Nati Blum. "Long diagnosis", Photo: Kitan Atmo

"But one of the main problems is that there are almost no services suitable for young people's dementia, and Social Security benefits are insufficient. While the old-age pension comes from the Nursing Act, young people receive a mobility allowance and the like, which is significantly lower than the long-term care allowance.

"Institutions that are suitable for people with dementia, such as day care centers or nursing homes, are more suitable for older people, and people in their 60s do not find themselves there. We do not really know where she stands today. "

Lior is well aware of these problems.

To address the shortage of suitable services for young people with dementia, and out of her personal need, she set up JOON about three months ago - an initiative that can help family members of people living with dementia.

The meaning of the name, Lior laughs, is 'my life' in Persian.

"I once heard a friend call her mother that, and I adopted it."

How did the idea for the venture come about?

"My mother was a bookworm, and kept reading, but she had a hard time. I felt the need to find her more things that would challenge her, but also suit her situation. I was looking for ideas that would allow her to keep her hobbies, but I found the world of dementia online is black. "If I want to bring her puzzles, for example, it's a jigsaw puzzle of Bob the Builder, and if I bring her such a jigsaw puzzle she's give me the Bob the Builder in my head," she laughs.

"So on my site you can find products that are suitable for people with dementia, such as puzzles, situation games and packages of happiness, which combine several games, a recipe for cookies or tea infusion, etc. All kinds of things that can be done together, accompanied by a playlist that enriches the experience. I also write a blog Personal, in which I openly and honestly share my experiences since my mother was diagnosed, and give tips for conduct. "

Exposure is not easy for her.

"I'm a very private person, but if I can help even one friend or family member, spare him one moment of frustration or pain, it's worth it. I lost my mother. It's terribly sad, but it's true. I do not have a mother to call and ask "How am I, how do I feel, and I miss her very much."

"It hurts me to see him"

Heli Efrat Ganot and her husband Yehuda before the disease was discovered.

"I define myself as a widow with no date,"

When Heli Efrat Ganot (65) talks about her husband Yehuda (72), her heart goes out to her.

They live in Kiryat Motzkin, and have three sons, one of whom lives in Zichron Yaacov, and the other two in the United States and the Philippines.

Until the disease broke out, Heli and Yehuda led a good and healthy life of daily swimming, walks on the beach in winter and summer and dance sessions.

Today Heli no longer remembers when was the last time they danced together.

Yehuda, a former director of the automation company's payroll department, was diagnosed with Alzheimer's in 2017, when he was 67 years old.

"He suddenly started talking nonsense, and was very confused. We were about to move, and he was less active. He didn't take care of the garden, he didn't take care of the dog, he was apathetic. I still worked as a nurse at the United Health Insurance Fund, and I attributed that to the fact At home. But suddenly he was getting hurt. One time he slipped and rolled on the steps of the house, and suffered a severe head injury.

"That's where the whole story started," she breathes deeply.

"Until our apartment was ready, we moved to Zichron Yaacov with our son, but my husband did not recognize him. He would go for a walk with our dog, Joy, and do not remember where he lived. Only thanks to the dog, who knew where to stop, he would come. Home. I would sit next to him, and he would not recognize me. Ask 'Where is Heli?', And that broke me.

"I went with him to a memory clinic on my own initiative, and to all kinds of doctors. I said to myself 'just let it not be this.'

"I took him to violin lessons, an instrument he had played before, we met with friends, before we set an agreed sign: I would pinch him when he had to stop talking. He would suddenly start talking nonsense, and he understood from me that he should stop. He hid it all. It's so good that even when he entered the nursing home, his friends did not believe he had Alzheimer's. "

When Yehuda could no longer be left alone at home, Heli brought him a caregiver with the help of Social Security.

"But it was not easy for the therapist either. One moment Yehuda would play with him and have fun with him, and a moment later he would run away. The therapist had to look for him on the street. We put him a watch with GPS, because when he started running, he would go far. I left The work to take care of him, and it was very difficult. "

Four months ago, with a heavy heart, Heli and her sons decided to move Yehuda to a nursing home in Kiryat Yam.

Every day she comes to visit him.

Sometimes he recognizes her, other times he asks her to go, telling her that "soon Heli will come."

Heli: "It's frustrating, so I was told to reduce visits, to start taking care of myself. I started working at a day center for the elderly, I organize trips and parties. Things for the soul, which make them and me happy. But not easy for me. I define myself as a widow with no date. "I'm not going to visit him, I'm restless, because I'm not with him. If I go, it hurts to see him. I cry all the time, and come back from there depressed."

Out of her personal pain, Heli, in collaboration with the Welfare Department in Kiryat Motzkin, opened a support group for families of young people with Alzheimer's.

"We share what we're going through, and I give them advice from my experience. They come out strengthened and so do I.

"Someone once said that when her husband was diagnosed with Alzheimer's, he said, 'I was hoping you would tell me I had cancer.' .

"For example, I go to the bank and ask for a continuous power of attorney. They sign me a guardian form, and I explain that I am not a guardian. I need a continuous power of attorney, which means that the person made a decision when his head was clear, and I follow his line.

"The issue of the budget is not simple either. As soon as we put him in a nursing home, we stopped receiving support from the National Insurance Institute. Today I pay NIS 16,000 privately, and do not receive the support he received when he was at home. Why can't you participate in this payment?

"People do not understand that this disease has all kinds of effects, not just forgetfulness," her voice is quiet.

"There is also violence, restlessness, insomnia and many other symptoms. And we, the family, have to deal with all the symptoms, and also bring awareness of the disease. We want treatment, mental help, order, support. This is not the spouse's disease. "This is not a disease of the patient. It is a disease of the whole family."

• • •

The Ministry of Health responded:

"The Ministry of Health sees great importance in the treatment of young dementia patients and their families and recognizes that this is not an easy task for them and those around them. Discussions are currently taking place with the Prime Minister And the families and will be adapted to their situation.

"It is important to note that a young dementia patient who is confined to his home can request treatment like the one that comes to any other confined home, and in addition there are out-of-home settings for people whose condition does not allow them to stay at home. At the patient's age. "

The National Insurance Institute stated in response:

"The National Insurance Institute believes that a benefit should continue to be given to dementia patients, even when they are hospitalized or in a nursing home because the need for assistance and care burden on their families is unbearable. "In changing legislation, which we have been trying to change for a long time without the cooperation of the relevant authorities. The situation is the same for senior citizens who have reached a nursing home situation, so changing the existing situation and the need for social assistance are necessary in a reformed society."

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Source: israelhayom

All life articles on 2022-06-17

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