A friend asked about Andrzej’s strange behavior. After we said it was Alzheimer’s, the phone calls went silent

Contents

Some people bow to me and I don’t know who it is
Don’t tell anyone what’s going on at home
Stupor. What’s next?
Dementia can affect anyone
How does life change after diagnosis?
Holes in the system
Rite at Andrzej
Will we go to ours today?
Guardians also need to take care of themselves

– We were on the tram. We were about to get off, and he insists, “I’m not getting off.” He started jerking me – and it had happened to us before, but one time I got out first and he didn’t make it. He did not get out behind me and drove the stop further. I rushed as fast as I could to follow this tram. But it’s lucky that he found out and got out – says Iwona, who was taking care of her husband suffering from Alzheimer’s.

– Andrzej was an open, sociable person. Suddenly I noticed he was watching people. One day he said: “Listen, some people bow to me, and I do not know who it is” – recalls Ms Iwona. Soon the couple found out about the early stage of Alzheimer’s disease
With the spread of news of the disease, the phone calls went silent. Some really loyal friends are left. There were situations in which friends would cross the street when they saw Iwona with Andrzej. It was hard to come to terms with – recalls the woman who looked after her sick husband for several years
For Andrzej, the center he went to very willingly turned out to be a good solution. He was happy because a lot was happening there. He asked – will we go to ours today? Iwona also found great support in the center
As part of the “Together ahead” social campaign, the Medical University of Wroclaw tries to debunk the myths about dementia and support people who live with the disease on a daily basis. One of them is Iwona from Wrocław, who looked after a person with dementia. She decided to join the initiative and share her experience to help those who recently heard the diagnosis
More information can be found on the Onet homepage

In the world, someone is diagnosed with dementia every three seconds. According to Alzheimer’s Disease International (ADI), the number of patients will rise to 78 million in 2030. In Poland, over 350 of people live with Alzheimer’s disease, and if you include other forms of dementia, only in our country the number of patients is half a million.

Iwona looked after her husband, Andrzej, who was diagnosed with Alzheimer’s disease in 2008. How did they find out about the diagnosis? Where were they looking for support? What would Iwona recommend to people who are just learning to live well with dementia?

Sheer absent-mindedness or a symptom of Alzheimer’s? Doctor on the alert

Some people bow to me and I don’t know who it is

– Andrzej was a lawyer. Very energetic. A great organizer, open to people – describes her husband Iwona. – Suddenly I noticed that he was looking at people somehow strangely. And finally she says, “Listen, some people bow to me and I don’t know who it is.”

Over time, Andrzej withdrew more and more from social situations, he also had difficulties finding the right word during the conversation. The deepening problems in everyday functioning led the couple to a psychiatrist’s office. Andrzej was then diagnosed with the initial stage of Alzheimer’s disease. And here the question arose – to tell relatives or is it better to hide?

Don’t tell anyone what’s going on at home

We like to brag about happy moments, but we leave the more difficult ones behind the door of the apartment. Most families busily hide a family member’s illness in the privacy of their home. There are many reasons.

– We assumed that it was necessary to talk about it. Make people not be surprised. I was terribly hurt by the lack of understanding on the part of our surroundings. A friend of mine once approached me and said: “Listen, what is happening with your Andrzej? He walked past me and didn’t even say hello. You know, I won’t even talk to him anymore. I was offended, ”explains Iwona.

With the spread of news of the disease, the phone calls went silent. Some really loyal friends are left. There were situations in which friends would cross the street when they saw Iwona with Andrzej. It was hard to come to terms with. The question then arises – why do people look away? What are they afraid of?

And how did Andrzej react to the diagnosis? As his wife says, he was not aware of it, but he was more easily nervous and closed in on himself. Yvonne began to observe him when they were in the company of friends – and that’s when she noticed withdrawal from social relations. He clearly felt bad about it. He was helped only by the Na Ciepła center in Wrocław, where he met friendly people every day, talked, played and spent his time actively.

Toxic particles enter the brain. It’s a possible cause of Alzheimer’s

Stupor. What’s next?

The diagnosis of a neurodegenerative disease is a surprise for many, and a new life situation for everyone. I must admit that after talking to my GP, I didn’t know how to support my sick husband. I felt very lost – adds Iwona.

– Later I called the helpline. There, in turn, the doctor gave me a lecture, which resulted in nothing practical. I was struggling. I did not know how to deal with such a sick person, who is sometimes aggressive, sometimes stubborn.

More and more difficulties arose over time. Iwona tells a story from a few years ago. Then she realized that she needed the help of someone experienced.

It was only in 2015 that professor Rymaszewska created the Na Ciepła Meeting Center for the sick. A group of 15 specialists from various fields gathered. They are therapists by vocation, people from the University. Qualified, with heart, with the right approach. – It was something wonderful because it was there that we found care, understanding and activities for people like my Andrzej. We worked very well with Dorota and Kasia from the University and Mrs. Professor. Everyone is patient and warm – says Iwona.

Dementia can affect anyone

After her husband’s diagnosis, Iwona could only count on herself and her loved ones. Loneliness and frustration ensued. Our system does not help – getting into a nursing home turned out to be easier than getting community help, i.e. specialist services in a patient’s home.

– I also badly needed something like a helpline, but one in which you receive specific, executable advice. Sometimes even this: sit down, have a cup of tea and cry well. When despair takes me, I want help right away, instead of waiting even a few months to be interviewed. The conversation was really invaluable. There was a wonderful psychologist in the center on Ciepła Street, Iga, who put me on my feet many times – she says.

This is the kind of help that relatives of people with dementia need – talking, being next to them. But the most important thing is the empathetic approach of society. What people don’t understand is that anyone in their 60s can develop dementia. It begins so that you forget a little. Later it develops. Then the most important thing is support and empathy. New needs appear – summarizes Iwona.

How To Delay Alzheimer’s? Pleasant exercises that will immunize our brain

How does life change after diagnosis?

Andrzej and Iwona were an active couple. They loved to travel. Due to the fact that the man was a railroad lawyer, they had employee discounts that made it easier.

However, after diagnosis, the trips became shorter and shorter as the disease progressed. Until the moment when Iwona’s husband stopped walking. Later it was necessary to buy a wheelchair, walkers. Three times a week they went to the “Na Ciepłą” center, where Andrzej took part in special, activating activities, thanks to which he could feel comfortable. However, the program ended, and with it the opportunities to spend time outside the home in a friendly atmosphere.

You can buy a diagnostic blood and urine test package for seniors at Medonet Market

Holes in the system

There was a problem with the doctors. It was impossible to get a psychiatrist or psychologist home to the health fund. And if it is possible to arrange for a psychiatrist to come home, it is only once every three months. The married couple then decided that private care would be the best option. A geriatrician, psychiatrist and psychologist Iga from the “Na Ciepłą” center came to visit.

What about the costs? Andrzej worked as a railroad lawyer for 46 years, so luckily his retirement was not bad. Iwona also had her retirement, and the children always helped. However, the costs of caring for a sick person are considerable. Each private visit to a psychiatrist is very costly for a pensioner.

– We got a good psychiatrist who told us that my husband has already had a condition in which he stopped getting to know us and contacting us. He says: “the disease will progress more and more. We can give the same drugs, but without much effect. ” We made a decision to maintain its current condition as long as possible by using the appropriate vitamins. Over time it got to the point that he had trouble swallowing. At that time, it was only possible to nourish with a syringe – says Iwona.

Early symptoms of Alzheimer’s. They can appear as early as forty

Rite at Andrzej

Iwona did it too – it was basically her last close contact with her husband. She admits that she was glad that, for example, she had to turn him over every two hours. This was how she could help him. With a limp body, it’s really hard. She has learned to do it in a way that prevents pressure ulcers from forming.

For the past three months, a nurse has come in – twice a week for 15 minutes. It was at the time when Andrzej had a catheter inserted. She was checking if everything was alright. Iwona managed only thanks to her family.

– If not for the family, it would be more difficult. My daughter-in-law helped me a lot and imposed discipline. We laughed that the ritual of Andrzej. First this must be done one by one …

Alzheimer’s changes your speech. A quick test will spot symptoms early

Will we go to ours today?

Iwona explains that one of the most important things in caring for a person with dementia is making them feel joyful. In the case of her husband, a good solution turned out to be the center he went to very willingly. He was happy because a lot was happening there. He asked – will we go to ours today?

Interestingly, he enjoyed riding in a wheelchair. His son drove it. When they were driving along the sidewalk, and someone was coming from the opposite direction, they shouted: “Beware, off the road!”

People parted. But he realized less and less that he was changing as a person. He even accepted it because he was having some fun in it.

These may be the first symptoms of Alzheimer’s. Women often ignore them

Guardians also need to take care of themselves

It is also important that caregivers do not take care of the person with dementia. However, love should not be spared for the sick. Such a person may understand that this is different from what he used to be. Therefore, he must know that he has support, because it gives him a sense of security.

– And keep something to yourself. Because I gave myself up completely. These were 24 hours of surrender to Andrzej. As a mother hears the baby’s breathing, I can hear its every breath, too, she says.

Probably everyone knows at least one family in which such a sick person lives. We often don’t know it because nobody wants to talk about it. Every person with dementia was once young, has gone through the stages of life, and has become dependent again on others because of advanced disease. It is our social responsibility to make such a person and their loved ones cope with the disease with dignity. Much has yet to change, but the change begins within us. Understanding, empathy and showing support when needed for both patients and their loved ones are key. May they become a natural emotion and instinct for each of us.