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Barbara was taking care of her mother when she fell ill with Alzheimer’s. She did not return her to the center. “If I had known what hell we would have to go through together, I would prefer to take her out of Poland and subject her to euthanasia. I think she wanted it too, »admits the woman.
- Barbara is considered a heroine among her neighbors. If she had euthanized her mother, they would have banished her from honor and faith
- «She was able to yell at the top of her throat that we are hitting her, help me, help me! People knew it was due to illness, but it happened that a police car drove up to the apartment of the former director »
- Barbara looked after her mother for seven years. Only just before her death did Janina recognize her for a moment
- More information can be found on the Onet homepage.
“I would rather take her out of Poland and subject her to euthanasia”
Before the interview, sixty-year-old Barbara makes the following conditions:
– You must point out that I am speaking only from my own perspective, but you must not distort anything. I want people to know what it means to get Alzheimer’s, and what I’m going to say is not going to be easy. My beloved mother died a natural death, but if I knew what hell we would go through together, I would rather take her out of Poland and subject her to euthanasia. I think she wanted it too, but in the last months of her life, she couldn’t express anything anymore. I know that in our country I would be deprived of honor and faith, although now I am considered a heroine among my neighbors and relatives. They say politely good morning, because I endured with my mother until the end, I took care of her, I did not give her to the institution.
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But I also know that the real woman would never want such heroism for me. She would rather die than ruin my health and psyche. She would never knowingly take advantage of me at such a monstrous cost. Because that’s what the horror of this disease is all about. The mother became her victim and my executioner at the same time. The whole family suffers from Alzheimer’s disease.
Alzheimer’s disease belongs to the group of so-called neurodegenerative diseases (otherwise: neurodegenerative) and is caused by the deposition of two types of proteins in the brain: the so-called beta-amyloid and tau proteins.These protein deposits first disrupt the proper functioning of nerve cells, and then lead to their degeneration and death, which is manifested by numerous clinical symptoms, which vary depending on the severity of the changes.
Barbara remembers that the first symptoms of her mother’s illness appeared long before she heard from the neurologist who examined her: your mother suffers from Alzheimer’s dementia. The doctor ordered a series of tests and a visit to a psychiatrist. He also informed that there is a support group for families affected by Alzheimer’s in the city. It’s worth going there right away …
Basia: My mother was a teacher and a long-time headmistress of a rural primary school. A great educator, extremely warm, kind person. To this day, I can see her walking down the corridor in a navy blue suit with a journal under my arm. A bun of jet black hair is piled up on top of her head. She walks upright and smiling. School was her element. I admired her.
In my adult life, our paths diverged. I moved abroad. I started a family, but we were in constant, cordial contact. After my parents retired, I urged them to move in with me. My mother’s friend told me that my mother constantly forgets something, is wrong, leaves the door open when she leaves the house. She lost her wallet. My father is depressed because they are constantly arguing. But mom did not even want to hear about the move. She repeated that she had her place on earth. I knew that he appreciated the circle of long-standing, devoted friends from work. That they have their passions, trips and pilgrimages with their father. Daily rituals in the apartment that give both of them a sense of security and identity. They don’t want to change that.
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A few years later, after those persuasions, in a small room that once served as her study, she died on a frosty March evening in 2013, without saying a word in the last weeks of her life. Shortly before she died, she looked at me carefully and gave me a little squeeze. In that fraction of a moment I was her daughter again, her pride, her Basiuchna. She recognized me. I waited ten terrible years for this hug and goodbye.
Symptoms of Alzheimer’s disease
Alzheimer’s disease is a progressive disease that begins with a minor memory impairment and ends with a complete inability to function independently. There are three periods in the course of Alzheimer’s disease:
- The initial stage of the disease: the appearance of the first deficits in the mental sphere (forgetfulness, time orientation disorders), limitation of independence (weakening ability to count, difficulties in coping with problems), disorders of manual skills manifested, among others, by difficulty maintaining order, dressing;
- Intermediate stage of the disease: recognition disorders (mainly in people), increasing memory problems, disorientation in time and space, speech and understanding disorders, neglect in maintaining personal hygiene, disorders of the real perception of reality, gradual loss of the ability to live independently, disorientation in relation to oneself;
- Late stage of the disease: severe recognition disorders (including the inability to recognize relatives), speech disorders (practically impossible to build sentences), urinary and stool incontinence, complete dependence on the caregiver.
At the beginning of my mother’s illness, my father was still alive. We guessed that what was happening to her was not simply the distraction and forgetfulness of a 75-year-old woman. Mum’s words were wrong, often, during a conversation, she broke off her sentence. She lost the thread. She stopped doing the crosswords she loved. She couldn’t read the string of letters correctly. She laughed it off. She did not acknowledge that something was wrong. She got angry when we drew her attention or showed her concern. There was a rotting leftover of food in her desk drawer, which she had stuffed there for reasons she knew. She began to eat sloppily, spilling soup at dinner. Once, instead of the morning mass, she went out to the countryside. Someone called my father that my mother was walking around the fields as if aimlessly, as if she was lost …
«Basia, I lost my mother». She was standing naked in the bedroom
I remember when my dad called me one night and said:
– Basia, I lost my mother.
My heart leapt into my throat. Thought mom died. But Dad was referring to her next prank in the repertoire. Mom got up at night, went to the bathroom and smeared the tiles with her feces. Then, naked and silent, she stood in the bedroom door …
At that time, we provided my mother with the care of a nurse and a volunteer, despite the fact that the still fit and strong father was at home. But he could not come to terms with the progressive psychological changes in his Janinka. He felt rage and helplessness. He couldn’t help her. Once, during dinner, my mom spat out everything she had in her mouth. Then she did it regularly. Even when we fed her, we had to take into account that she would spit on us unexpectedly. You weren’t allowed to shout at her because it’s like yelling at a child. When she sensed that she had upset us, she began to cry. When she could still speak, she could scream at the top of her throat that we were hitting her, help me, help me! People knew it was due to illness, but it happened that a police car drove up to the apartment of the former director. Someone reported that Dantesque scenes were happening.
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During the first years of her illness, I used to visit my parents in all my spare time. I spent all my holidays, holidays and vacations with them. I distanced myself from my son who started college and from my husband who had to work. I felt that I was losing my own family at my mother’s expense. But I couldn’t leave my parents alone. Dad cried that he didn’t understand what was happening. That it’s not fair. After all, my mother was so good, kind, deeply religious. One night, injuring her feet, she trampled the painting of Our Lady of Częstochowa. She threw family heirlooms and knick-knacks out the window. Often, at night, she screamed terribly that she wanted to leave, that we were imprisoning her. Apart from progressive dementia, she was in good health. She had a lot of strength in her. It was a pity to watch her sit, dull after medication, and look at the empty notebook. He rocks back and forth in the chair, groans softly. Her eyes were blank, expressionless. She didn’t recognize us.
On better days, she played with a doll
On better days, her face brightened and she played with the doll. She pressed her to her breast as if she wanted to feed her, she hummed. After my father died suddenly of a massive heart attack, I moved in with her. We spent 7 non-stop years together. I devoted all my time to her, with short rest periods, when my care was taken care of by nurses, husband or son. I saw her suffer when a stranger approached her. She was terribly afraid of other people, except for her own daughter, whom she did not recognize anyway. She would go crazy when someone but me wanted to change her diaper pants or feed her. She made me so addicted that I was afraid to leave her for a while. I rarely left the apartment. My neighbors did my shopping. Sometimes they sat for a while and had a coffee. My mother calmed down like a child and the impression was that it was just a helpless old lady who had stopped communicating. It wasn’t long before a series of her “new rituals” began, which sprouted in the fragmented brain. The favorites were: smudging faeces and food on the walls, walking naked, screaming at night. When she was still physically fit, walking on all fours. When she could still speak, challenge. When she still had enough strength, knocking over furniture or banging her bare fists on a closed window. As if all the demons of Hell had conspired to torment her…
Basia: But my mother wasn’t possessed. Mom was sick. For a disease that affects about 200 in Poland people. When I tried to consult, complain to the doctor at the village center where I got prescriptions, she looked away. She said: What to do, such a fate … When I was leaving with my mother’s prescriptions in my hands trembling with nervousness, the girls from registration also avoided contact. Former moms of students, none of them dared to ask what was up with her.
Several times I managed to get out into town to meet a family support group for people with Alzheimer’s dementia and listen to other people’s stories. Not all of them were in the same circle of hell as me. One girl’s father even started to get out of bed after some new medication. They took him out on the terrace in warm weather. I couldn’t talk about my mother, but I needed to be panicked to hear that I was not alone with our family drama. That they understand … Every day, swallowing my tears, I watched the disease take my mother away from me, piece by piece. As I am depleting, piece by piece – along with her.
My mother’s name was Janina, and shortly before the first symptoms of Alzheimer’s appeared, she wore an intricately arranged bun interspersed with strands of gray hair. Sharp, gray eyes were wrapped in a net of smile lines. Despite her advanced age, she walked with sticks, liked chatting on the phone with her friends, playing solitaire and writing poetry. She was a retired school principal and a teacher who was loved and respected by generations of students.
It was my mom and she died before her body, suffering from disease. I can’t accept the fact that she had to suffer for so long, and me with her. I can’t get myself together. I miss her terribly …
How to deal with a person suffering from Alzheimer’s?
Some practical tips on how to deal with someone with Alzheimer’s:
- The commands given should be clear, simple and formulated in short sentences.
- The patient should be treated with care, but at the same time be sure and decisive.
- Important information should be repeated, even more than once if necessary.
- Be very patient and give the patient time (minutes, not seconds) to react or respond.
- Avoid pointless discussions.
- If anger or aggression appears, direct the patient’s attention to other matters.
- Do not attach any importance to unjustified allegations or claims.
- Take care to fill the day with the sick and keep the daily rituals.
- Avoid overwhelming the patient with activities that he or she can still do.
- Do not give up pharmacological help, despite the difficulties in choosing the right drugs. Consult your doctor about any change of medications and doses.
- Distribute responsibilities for the sick and responsibility for them among all family members, so as not to exhaust and overburden only one caregiver.
- Actively seek help wherever possible. Benefit from attending support group meetings. Take care of the hygiene of the mind and body by arranging rest periods from the patient and breaks in daily care. The caregiver must not feel guilty for leaving the sick person and going on vacation. The whole family must be involved in caring for the sick person.
The report uses information from the website: www.chorobaalzheimera.pl and www.alzheimer-krakow.pl.
The TZMO Together We Change the World Foundation has published a free guide of the Lady of the Council “What you should know about Alzheimer’s disease and other forms of dementia”. The publication guides the caregiver through the complex world of dementia in which the caregiver lives in a simple and clear way. See also videos to help you understand what dementia is.
Also read:
- People with dementia and Alzheimer’s disease are at greater risk of coronavirus
- An ingredient that increases the risk of Alzheimer’s by as much as 75 percent.
- The early symptoms of Alzheimer’s that you can see with the naked eye
- How to live to be hundreds? Seven lessons for centenarians
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