Living with a schizophrenic mother

MENTAL HEALTH   SCHIZOPREHENIA

Her delicate beautiful face and gentleness do not depict any of the challenges she faced growing up with her mother who has lived with schizophrenia for 50 years.

This is an emotional subject therefore it is not surprising that our interview was interrupted with rivers of tears at one point rolling down her face.

Sharon Byanjeru appeared vulnerable like a little girl as she opened up to tell her story. I quickly passed her tissue to dry her eyes as she continued to reveal the depth of what it has taken to care for her mother living with schizophrenia.

According to www.nimh.nih.gov, schizophrenia is a chronic and severe mental disorder that affects how a person thinks, feels and behaves. People with schizophrenia may seem like they have lost touch with reality. Symptoms of schizophrenia can be very disabling.

With this in mind; Byanjeru observes, "The first unusual thing l noticed was that l was always kept away from my mother. I never spent more than two weeks with her. At one point l was taken away to study in Nairobi with my uncle's daughter. I lived in Nairobi for two years.

However, when l told her l did not want to go back she was glad. Then l observed that my mother was very possessive of me. She would talk for long periods and would not stay in a place for too long. She kept moving from one relative's home say for 4 months to another.

When she planned to start moving, mummy would spend the whole night packing her luggage. She would pack 8pieces of luggage and she would move with it.

During such times mummy would take me along, and l begun to resent moving from one home to another.

I felt uncomfortable about the instability though at that time l did not know that mummy was ill. I finally stopped moving with mummy after we visited an auntie who made us sleep on polythene on the floor, l was in primary five then. Finally, when l joined senior one l was enrolled to a boarding school."

For those moments when Sharon's mother was not home, she spent time with her grandmother who mothered her. She grew so close to her grandmother, who taught her how a young lady behaves and conducts herself. Her grandmother is the mother she knew.

When Byanjeru was in Senior Two, she witnessed her mother relapse. She recalls this incident as if it were yesterday, still shaken at the memory, "Mummy run out of the house.

But two men who run into her along the road, got mummy and brought her home. Then people at home tied her up with ropes. I was so traumatised looking at my mother like that. It was confusing. Shortly, she was whisked into her bedroom where she was untied.

She talked all night accusing people of doing all sorts of things to her. The doctor came home the following day and administered medication.

While in her bedroom she was in total darkness, l could not see her when l brought her warm milk. That is all she could take when she had relapses, l learnt of this after my grandmother sat me down to explain what was happening to mummy.

When l took her milk, mummy violently lunged at me. She strangled me, but it took our gardener to rescue me by freeing me  from my mother's firm grip."

After this sad incident, Byanjeru who is named after her grandmother came face to face with the reality of her mother's condition. Her grandmother and mother's paternal auntie sat her down to explain mother's condition.

"My grandmother told me that l am all my mother has so when l grow up she will be my responsibility. She told me that l have to grow up and deal with my mother's condition because she will live like this for the rest of her life.

I know you have many questions but as you grow you will get the answers from God, l recall my grandmother saying," she reminisces with a note of sad finality.

Indeed after her grandmother's death in 2006, Byanjeru took over as the sole caretaker of her mother. It costs her sh300,000 for a monthly dosage of medication. She had to know the kind of medication her mother took and the doctor's contact.

Before, it was hard dealing with the side effects. Her mother's tongue was swollen and the saliva would be dripping but this stopped.

Currently, the challenge is difficulty in  accessing medication which is not available at Butabika Hospital. I have to comb the streets of the city high and low looking for a particular pharmacy to buy the medication.

"When the month is almost ending l get into a panic because l must find money to purchase her medication. Even though family is supportive, l cannot keep asking them for money," explains the stay home mother who bakes for a living.    

COPING

"Now, l know the signs when mummy is about to relapse. When she begins to pack a bag and her flask, these are the warning signs. This is when l get her doctor because l know there is no cure for schizophrenia.

Last year her mother got a terrible episode. "My mother got so angry that she even bite me when we were driving her to hospital. I have a scar," she says with emotion as she shows me the imprint of her mother's teeth on her hand.

CHALLENGES

Gladys Winyi, Byanjeru's mother has tried to cut out a life for herself. She served for 4years in politics within the community and she is a Rotarian.

However, after a bad fall where she bit her tongue, Byanjeru asked her to slow down for the sake of her health. "Mummy also fell while in Nairobi with family and broke her arm after missing a step a few years back," explains Byanjeru with anxiety in her eyes.

She is concerned about her mother's health who insists on living independently. Winyi, though needs the help of maids she detests them. She is particular about where she leaves her things at home and jealously protects her space, she does not want anyone rearranging her stuff.

Since she cannot stay along, Winyi lives with her cousin now so that Byanjeru is able to monitor her health. Although Byanjeru cares for her mother she is quick to add, "My mother was not really in my life.

Consequently, the mother child bond is not strong however, it was there with my grandmother. My mother and l never see eye to eye, l cannot live with her in the same house for more than 2days. We only agree on treatment she needs.

Mummy is paranoid but fortunately, her brother has always been there for us. I have an auntie who is 96 years old who my mother says is not good despite her support. Sometimes, mummy tells relatives that l want to kill her.

When l confront her about it in a conversational manner she denies everything and says people just want to destroy our relationship. Now, l know it is the disease not mummy.

However, while growing up, I struggled with managing my anger. When people annoyed me and they were usually older than me, l bottled it up. But when l finally lost my temper, my anger was explosive. I would walk up and down the corridor while quarreling.

 So, one day my grandmother asked me to place bananas on a clay tray which l did but she was not satisfied with how l did it.

She made me repeat placing the bananas on the tray thrice, this made me lose my temper. I looked my grandmother in the eye as l lifted the clay tray and dropped it on the floor, breaking it into several pieces.

I walked away in anger and cried. My grandmother let me be when l had calmed down she gave me a simple lesson about handling anger which l carry to this day.

She asked me whether l would ever put back the broken pieces of her tray and l said no. Then she gently cautioned me that if l do not learn to deal with my anger in a healthy way then l will end up like the broken tray!" she adds with nostalgia.

This was a lesson to avoid pent up anger. In addition to this Byanjeru observes that due to her mother's mental illness, she could not manage to raise her consequently this is part of her life that she cannot recover.

To Byanjeru, her mother Winyi, a graphic designer and philosopher will always be her mother regardless.

Since her mother is very possessive and wants to run her life in every way from the time she leaves home and when she should come back, they live apart.

The father figure in her life is her mother's brother Christopher Winyi. As life happens, Byanjeru has learned that her mother is not the problem but the disease. So, she has learned to be patient and understanding when dealing with her mother.             

LAST WORD

Although, Byanjeru never met her father she knows that he is Ethiopian, he did not stay with her mother because of the illness.

Nevertheless, lessons she has learnt on her life's journey caring for her mother, Byanjeru says; "Even though someone is mentally ill they have a right to have children. Imagine what my mother's life would be like without me. Also, children must stand with their parents.

Family should not give up on a loved one who is ill. However, some treat them like it is a death sentence but it is not like that, one needs treatment.

Winyi lives in Fort Portal where they know about her condition, fortunately with little stigma, though some people thought that l would turn out like my mother. I am now 40 but l am not sick," she says emphasises.

EXPERT ADVICE

Dr Jude Kabagambe, a psychiatrist with Life Coach International, an organisation offering psychotherapy based in Entebbe, reveals that it is important for the family to offer support to their loved one.

Managing schizophrenia is a combination of medication therapy, lifestyle changes and social support.

Cecilia Diriciru, a psychiatric Nurse with Butabika hospital also recommends family therapy. She says that the family too needs to be supported to understand the condition of their loved one so as to offer the necessary support to the patient.

Loving the person who is living with the condition is important. This way the person feels secure and it is also easier for the family to monitor the medication and doctor reviews.

Use of mood stabilisers is used to manage the condition.

They need to be understood. That is why family therapy is vital that is why during counselling, experts start with the caretakers. What the patients say should not be taken seriously because of their paranoia.

Psychotherapy sessions usually last 1-3 hours at Life Coach International depending on the gravity of the problem.

Such sessions help reveal information needed to help the patient. They also use Cognitive Behavioural Therapy (CBT) when counselling the patient. CBT is counselling that effects and influences behavioural changes.

SYMPTOMS OF SCHIZOPRHENIA

Usually patients are paranoid. They always think that people are planning to harm them.

They are usually aggressive.

They easily get angered. Consequently, people isolate them and they too prefer isolation.

They become irresponsible by doing daring things.

They have challenges with intrapersonal and interpersonal relationships. Intrapersonal is that they find it hard to relate with themselves while interpersonal means they find it difficult to relate with others.

Usually difficult to please

They are very possessive.

Lack patience.

They are always looking for a scapegoat.

They are argumentative and do not want to lose.

They are overbearing.