After the sudden death of a mother, the elderly father reluctantly turned to his son and asked if carers would possibly help with his daughter. A lady who lives with a learning disability, cerebral palsy, epilepsy, anxiety and mobility issues. His son had spent the past 30 years working within Adult Social Care, to understand the system from within. Sacrificing his own career plans and dreams of working with his father in his engineering business.
So, his son, who was grieving for the loss of his mother, begins an unbelievable journey to get a tiny amount of help for his sister. He remembered his promise to his mother many years ago, that he will care for his sister. He made a phone call to a local government office, explaining he needed help for his sister and listed all the relevant medical information. Having an insight into the situation of local support he believed that getting to the right professionals would be simple, especially as the family were not asking for a lot of care. Nothing more than one hour in the mornings, as the father was reluctant to have strange people in his house.
The phone calls were made and the wait began. Days and nights of constant worry. Trying to support his father with his anxiety about calling in a care company, his sister who was missing her “mum-mum” and dealing with the business of what comes after a death in a family. After waiting for a few days, there was another round of phone calls. The brother was repeatedly told that the social worker who was dealing with “the case” was out of the office, in a meeting or an annual leave. This meant weeks of waiting, worrying and sleepless nights.
In a state of desperation having waited for a few months now, a phone call to the family’s GP was made, only to see if anyone from adult services had made contact. But no such contact was made, and the family doctor was mortified to hear the story. Within 20 minutes a member of staff phoned the family explaining quite sheepishly that they had a doctor phoning them and they now need to see the daughter, as quickly as possible as the doctor needed an answer as to why this had taken so long. A meeting was planned for the next day. After fighting over many phone calls and speaking to the family GP, a tiny care package was put in place. One hour in the mornings. A journey of outside help began.
Unfortunately, the care provider was far from satisfactory and the staff were extremely controlling. The care company had their own agenda and this did not include the family’s or the person’s views. They washed her on the toilet, after they made her afraid to use the shower. They helped with breakfast quickly so they could play on their phones. As the care package increased (due to the rapidly failing health of the elderly father), so the controlling of this lady increased. Being told to wait and placing their hand on this lady’s chest to keep her in the armchair until the staff were ready to support. Using old-fashioned spoons with sharp edges to feed her. Totally refusing to allow her to use her grab rails that her father had put up for her.
There were many meetings and countless emails with the care company. The social workers would always support the care provider and never the person and her family. They tried to bully and intimidate the brother. They even tried to pass the blame on to the brother for their lack of care and understanding. But what they couldn’t and wouldn’t understand is that he is carrying out the promise to his late mother and he is a “sibling-to-a-person-who-lives-with-a-learning-disability!”. Now a sibling like this is different to other siblings.
A sibling is a person who can cope with dramas that would cause others to buckle under the strain. From a very early age, these siblings had to cope with situations like learning quickly how to sit (for what seemed like hours), in hospital waiting rooms. Watching his mother’s eyes filled with a worry that was beyond his imagination. Helping to role play with his sister so doctors could observe her doing simple tasks. Be concerned as his sister was put through physiotherapy, the cries of pain as his sister was pulled and pushed to do exercises. But there was always a quick 10 minutes to play with special equipment himself. “Other siblings couldn’t do this”, he often thought to himself. And there were the visits to the hospital café. A cheese roll, a packet of crisps and a bottle of pop made these visits worth it. And all this starts before the age of 4 years old. This invisible training siblings go through often results in empathy towards others, patience, and an understanding of equality and diversity. We siblings are versatile, courageous and brave. Most siblings of someone with a learning disability mature extremely quickly so they can support their parents.
With the many concerns raised with the level of care and support for his sister, the brother increased his role of responsibility. The father’s health was failing fast at this point and he needed his own care package. His daughter received no support to help her understand the ill health of her father and the passing away of her mother. This was left to her brother to provide. The family chose to withdraw the care company and without any support, they entered the world of direct payments. That night, the brother could finally tell his sister that the carers wouldn’t be returning. The following morning, his sister walked into her kitchen using her grab rails, looked around and started to sing out. She waved her arms and smiled. She could see that her brother was telling the truth the previous night. No more controlling carers are coming. This singing and waving upset and overjoyed the brother. That’s what siblings of people with learning disabilities often experience – juggling two completely opposite emotions at the same time. That’s just another thing that makes us the siblings that we are!
After the death of the father, the brother and his partner moved into the family bungalow. His sister is now once again being supported, cared for and loved, by the people who know her best – her own family. The brother’s partner is a sibling herself, to a lady who lives with (in her own words) “a system with an extra bone”. Something that the rest of us may call Down’s Syndrome (that condition with an extra chromosome).
This lady is now enjoying her life to the full again. Free and most of all, safe, from the controlling staff of a large care company. Even the mundane tasks of medical appointments she takes in her stride, in the knowledge that she is safe with her family. Imagine being under general anaesthetic for over 3 hours for oral surgery, simply because the carers wouldn’t clean her teeth correctly (refusing to take guidance from the family).
Day trips to London on the train with her new powered wheelchair to see the flowers for the late Queen. Sightseeing with her brother, his partner and her disabled sister, who now after the passing of their own mother, lives in the family bungalow too. The two sisters have become firm friends and possibly a force to be reckoned with. The sisters are now attending the local day provision a few days a week, where they continue to make lots of new friends, and enjoy some wonderful activities. Once a month they love the local Mencap disco where they meet up with their friends.
Families come in different sizes and shapes. That’s the beautiful world of diversity. Some walk the path alone. Others bang on doors for help. Whichever path is walked brings incredible moments of sadness and happiness. Achievements measured in millimetres and centimetres. Months of time not hours. Half a smile that may not have been seen for years is like your sibling attending a university degree ceremony! Life milestones, special birthdays, sometimes pass without notice. Or some are celebrated with huge amounts of happiness simply because the person is alive and for that moment, in good health.
Siblings continue to worry for their brothers and sisters. The countless sleepless nights. The constant anxiety of social workers trying to change their brother or sister’s happy life. And even contend with today’s social stigma, that still exists in the dark places of our society. But we (siblings!) cope day in, day out. Hour by hour. We have to!
But we are lucky because we are part of an inspirational charity called Sibs. They are there for us, supporting in that unique way only siblings can do. I remember an event in London some years ago. Simply walking into the room, looking around at other siblings and experiencing the most incredible feeling of “knowing”. Knowing what other siblings were feeling and knowing that we were not alone anymore.
Some years later, I asked my partner to accompany me to another event in Manchester. It was wonderful to watch her eyes as she experienced that “knowing” feeling as we entered the room. Of course, we all are fully aware that there are other siblings in this world. But it’s hard to remember this and it can be so very isolating fighting for our brothers and sisters alone. But we are not alone. We are siblings. We are Sibs.
All names have been changed.