There are diseases that affect both the patient and the caregiver equally. They make everyday life difficult to bear. After hearing the diagnosis of an irreversible disease, you need to slowly reorganize your life to help the closest person who, e.g. in the case of Alzheimer's disease, forgets their name over time, does not know if they have children, a spouse or cannot use a spoon. Most caregivers experience a lot of stress and are sometimes treated for depression.
In many cases, chronic fatigue and continual inner tears become commonplace.
No wonder, after all, a loved one becomes a stranger who does not remember what life together was like, forgets what happened before, but remembers the events of the past very well.
Has huge problems learning something new. Forget words during a conversation, repeats the same sentences or tells the same stories over and over.
Patients often behave irrationally, aggressively and in an unpredictable way, which often causes conflicts.
One has to be aware of the fact that this is not a deliberate action, but a result of a progressive disease.
The outside world becomes a stranger to the sick person, it makes them fearful, and this causes them to close themselves in their own world made of remnants of memories.
- Especially at the beginning, the closest ones misread the patient's intentions. They complain that he is making them angry, calling out to thieves, and using obscene words. And he just doesn't understand everything that is happening to him or he is afraid that the guardian still requires something and he is not able to meet it.
The caregiver should have a lot of knowledge about Alzheimer's disease, know the symptoms that appear as the disease develops, so that he can deal with them in the future - emphasizes Bożena Nowicka.
When her mother, Antonina, was in her seventies, she had more and more memory problems, repeating the same thing several times. The family got used to it, they simply linked it with old age. Twenty years ago, little was said about Alzheimer's disease, although it had been known since 1906.
One day in 1996, Antonina went for a walk in well-known places, but her return was several hours late. This has never happened before.
For many years she worked as a nurse superior in an Orphanage, she helped in adoptions. She loved this job and was fully committed to it.
- We were losing our minds, she was always so punctual, obligatory. If her friend had not found her, she would not have been able to find her way home - remembers Bożena.
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Over time, the problems began to get worse. - Mum was able to take us for kilometer walks, we came back exhausted, and she could continue walking. With time, she stopped taking care of hygiene, we had a problem to persuade her to enter the bathroom.
The most troublesome was the reversed circadian rhythm, when we wanted to fall asleep, and my mother became extremely active and got up several dozen times at night, while she fell asleep during the day. Sometimes we managed to disturb her rhythm, involving her in various household chores, e.g. helping to prepare dinner.
The diagnosis was made by two neurologists, Anna Frankiewicz-Woytynowska and Robert Kucharski. They noticed that more and more patients come to them with the problem of memory loss in elderly people in the family.
They were looking for more and more information about this disease, they wanted to help those in need as best as possible. All this meant that 18 years ago the Bydgoszcz Association for the Care of Patients with Alzheimer's Dementia was established. Bożena has been its president from the very beginning. This disease changes not only the person suffering from it, but also the loved ones. The diagnosis can be a huge blow to the spouse - the most frequent caregiver in Poland.
This is usually an elderly person, often sick, who requires care himself. Meanwhile, life writes such a scenario that it has to look after a very sick person 24/7.
- To isolate yourself from the world is the worst way, conversations with other people who are in the same situation are very much needed. In our Association, they take place twice a month - says Bożena.
Graduates of the Post-Secondary School of Occupational Therapy conduct classes for patients. The charges paint, cook, sing and dance, while their guardians benefit from such important psychological support, participate in educational meetings related to the disease, therapy and rehabilitation. They can simply complain in the world, sometimes cry …
The most important thing is to exchange experiences. This is what gives you the most strength. The primary task of the caregiver is to understand and learn about the diseasehow to deal with the sick - says Bożena and adds that some carers, even after the death of their spouses or parents, come to meetings to share their experiences with others.
They form cordial friendships and relationships for years. Patients who cannot come to the Association due to their serious he alth condition are visited by a psychologist, nurse, physiotherapist and occupational therapist in their place of residence under the "Green Umbrella" project - she says.
Bożena shared the care of her mother with her sister and she knows from experience how much depends on the caregiver, on a positive approach to the charge, and on involving him in everyday household activities.
The three sons of our heroine were also very supportive, they were great with their grandmother, they were able to invent tasks and games that interested her.
- It is important to play games or walks together, which help you stay fit for as long as possible. When a sick person forgets a word, do not do anything for it, but guide it in such a way that it will remember.
Mom asked a lot of questions all the time. She participated in everyday life: she helped prepare dinner as best she could, she cleaned the apartment - Bożena recalls and adds that the guardian must show creativity and cleverness to reach the patient.
Advises you to formulate questions so that the student / ward can answer them: "yes" or "no", while the instructions should be short and understandable. It is worth reminding the patient about the day of the month every day, displaying a calendar with dates marked with large numbers in a visible place, and informing him about the weather.
According to Bożena, leaving the sick in 24-hour nursing homes is not the best solution. Homes for daily living are ideal.
The patient spends half a day in them, and the caregiver has time to himself, may be professionally active. During the day, the sick person is not bored: he has classes, therapy.
There is only one problem: such houses in Poland can be counted on the fingers of one hand - sighs Bożena. We are one of the countries where the percentage of patients staying at home is one of the highest.
In other countries, patients reach care homes faster, probably because the conditions are better than ours and there are more options. That is why with us it is so important to support family caregivers.
It is not easy to admit that someone very close to us is changing rapidly. The disease progresses quickly and it is not known what the next day will bring.
- Unfortunately, caregivers very often isolate the sick person, lock them up at home, do not tell anyone about the disease. The effects of such a procedure are dramatic. Oftenit ends with the patient disappearing, who one day leaves and does not come back, also because those around him do not know anything about his illness. Only when the caregiver speaks openly about the disease can he count on understanding from other people and on their help - says Bożena.
People who have not experienced Alzheimer's disease may be surprised by unusual, sometimes embarrassing behavior.
The fear of own inadequate reaction to the patient's incomprehensible behavior, the fear of offending him, prompts him to visit less and less.
Over time, the caregiver remains the only person with whom the patient has contact. When this is combined with the social isolation of the patient and the caregiver, the situation becomes dramatic.
- Often people from the outside would be willing to help: see old photos, go for a walk with the sick person, play cards with him and remember the old years. However, they do not do it because they do not know how to best communicate with him, how to react to repeated questions.
It should be emphasized that only when other people around the patient and the caregiver know what Alzheimer's disease is, they will be able to help in caring for the patient, emphasizes Bożena.
It very often happens that caregivers look after them alone, because they feel that it is their duty, they do not want to burden others. With time, they start to avoid their friends and family because they are ashamed of the sick person's behavior or are too tired and prefer to stay at home.
Slow withdrawal from social and family life makes the sick person feel unnecessary and the caregiver increasingly lonely, which often leads to depression.
Only the caregiver who can also take care of himself is able to fulfill his duties well.
- Let's not isolate ourselves from other people, let's try to leave the house when we have such an opportunity, keep in touch with others, ask for support when we feel tired and helpless - appeals Bożena.
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