Carers in the Home

by Rochelle Followes

My son Zachariah, a cheeky, blue-eyed flirt, was born with a gene mutation, a change in the TUBB2B gene. This mutation means that Zachariah has various health needs and disabilities, epilepsy, visual impairment, and severe physical disabilities, to name a few. He keeps us busy pampering and entertaining him whilst caring for his every need.

While loving my son, and admitting that there isn’t much I would change (epilepsy can catch the next bus), I also admit that it is incredibly draining. It is more of a caring role rather than parenting. My worries are completely different to those of my closest friends. While I’m timing a seizure, they are counting to ten in hope their children would have done the chores they’ve been repeatedly asking them to do all morning. Whilst I’m blending food to the most liquidy texture, they are encouraging their children to eat all their greens.

It’s just so different. I struggle to pee without my anxiety reaching a peak whilst my son is left alone at risk of refluxing or seizuring. Zachariah relies 100% on someone else to meet all his needs and wants. Changing, feeding, bathing, even play is instigated by an adult. He needs stimulation and direction. Left to his own devices, Zachariah will pull his feeding tube out and bite his fingers. You get the picture. He needs one-to-one, and sometimes two-to-one, care at all times.

Needing Help

This level of care became extremely difficult to achieve. With his Daddy working full time and family members struggling to help, it was impossible for me to cope any more without the risk of a breakdown. My needs have always and always will come second—I wouldn’t have it any other way as his Mummy—but it was getting hard to meet simple hygiene needs. Mixed with sleep deprivation and juggling all the medical appointments, the house jobs, and my voluntary work it became clear that I needed help.

Help! Something none of us wish to ask for without feeling the shame and guilt that comes with it. But why do we feel this?

Because we are our biggest critics. We worry what other people think. We worry about possible consequences if we admit we are not managing. We see it as failure. We compare ourselves to other families and maybe see them managing much better than we are. But the truth is, only you know how hard it can be. It is behind closed doors that the biggest challenges occur. Only you can determine if you need help, and it isn’t to be viewed as anything but a need to help your family.

We all have different obstacles in life that may make situations harder. We all have different strengths and things we struggle with that make our journey different from the journey of the next family. So, there is no room to compare, but just to look at yourself and decide if you need help. To be honest, it’s not always a decision, it is just an urgent need.

I shouted help. But I didn’t really know what I meant by this. I just knew that I was not coping with our current set up, and needed someone in my home to help with meeting my son’s needs as well as my own. Trying to shower in a set time in the morning before my husband left for work while getting Zachariah ready for the day and getting him fed was just becoming impossible. I needed more flexible times. Bathing Zachariah was a hazard on my own; I needed someone here in case of emergency.

The Awkwardness of Personal Assistants

We were really blessed and didn’t have much of a fight. The local authorities saw our needs and rewarded us with Personal Assistance or PA hours.

I selected three people: Rob, our friend of four years; Lauren, his one-to-one support from nursery; and my Auntie Tanya, who had been a solid rock to our family.

Once getting over the guilt and embarrassment, I started to get excited. But the realities of it were rather strange! I felt weird having someone in my home. I struggled to let go and let the PAs do what I was paying them to do. There was a slight awkwardness in the air, a feeling of defeat almost that it had come to this. I had carers in my home for my own son. I had someone bathing him, feeding him, taking him for walks.

For the first few weeks I would literally sit back and watch the PA, and the awkwardness developed into something rather huge before it settled down. I did not know what to do with myself. I couldn’t leave them because there is no proper hoist for the PAs to lift my son.

I became a spare part.

After the training and general introductions to everything I was stuck in limbo. I had someone meeting Zachariah’s needs, but I was not able to truly switch off. I was also exhausted from showing three people absolutely everything about Zachariah! Yes, they knew him, but not in this way. They needed training on pretty much everything. Showing someone what you do day in and day out can be difficult, as you just do it.

I looked in from the outside, and saw that my son was a two-to-one kinda boy; he needed two people to truly meet his needs. I began to realize just how much I do. I hadn’t allowed myself to think this way before. He is my son; therefore, I just do what is needed to be done. No complaining. No what ifs. I just did it. But looking at my son from the outside showed me just how complex he was, and I didn’t like it. I didn’t want to view him this way. He is just a four-year-old boy who loves life.

I had to break away from this limbo. I had to gain some independence. Because this was not nursery or day care, I wasn’t dropping him off somewhere and being oblivious to what he was up to. I needed to take myself out of the situation to really benefit from the respite. Because the care had come in my home, I either needed to snap out of my thoughts, or go out and meet friends for coffee and have some time out.

That’s just what I did and it helped for sure! I would spend some time to myself, some time catching up on jobs, and other times working with the PA, especially around the bath time.

There was balance. The guilt started to soften.

Family Improvements

The guilt will never go away completely. The awkwardness may never disappear. But what I have accepted is things are better. My mental health has improved. My back problems are not as often. I am more present and able to have fun times with my son. With our sleeping issues, I am now able to catch up on sleep in the day and have more energy to conquer the world. I have more patience for all the chasing I have to do. I have no guilt for asking for help, as people are now being paid for their time.

Most importantly, Zachariah is happy. He has three special people in his life who he now sees more. He gets to see different faces, which makes my time with him even more special.

We are a family who has a child with very complex needs. We are a family who needs carers in the home.

We are happy. We love each other. We are proud and not ashamed to share who we are.

Author: Rochelle Followes • Date: 8/22/2018

About the Author

This is Rochelle’s first piece for Complex Child Magazine. She is married to a wonderful man, Tim, and together they have two gorgeous boys, Zachariah (4), and Ezra who is their beautiful Angel baby born sleeping in November. They live in the North West of England and together make a fun, loving, busy, yet exhausted family. To follow their journey please pop over to their Facebook page, My Daily Miracle.

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