My Story as An Unpaid Carer - My Caring Roles

Harrison is our only child and as you may recall, he was diagnosed at the age of four months with a complex heart condition and 22q Deletion Syndrome. Although I was already caring for him as a mother, from the point of Harrison’s diagnosis that stepped up into becoming his main carer too.

Let's explore the roles that I personally do as a carer. Obviously, some of these do overlap with being a mother, however the extent to which I do these is more intense than if I was ‘just’ his mum.

For each carer, they will concentrate their efforts in different ways. The individuals they care for will have different needs and disabilities not just from each other but possibly over time too. A carer needs to be flexible and responsive.

These are my roles:

Once again, apologies for the tiny writing on the slide. The roles are all listed below with a brief explanation. I've taken them in a clockwise direction starting at the top with all the burgundy boxes first and then the purple ones at the bottom of the post. 

Secretary - Keeping and organising appointments and records; dealing with doctors, nurses, the local authority (education and adult social care teams), filling forms, making holiday arrangements (an extremely complex process!) and ensuring all paperwork, insurances and travel adaptations are in place.

Finance manager – Dealing with benefits agencies, local authority finance team, sourcing special equipment and aids. A perfect example of this was today where Harrison had been randomly chosen for a telephone review of his Personal Independence Payment (PIP). This is a non-means tested benefit for individuals who have a long-term physical or mental health condition or disability. For those who have never seen a PIP assessment form, it's a forty page A4 document and in Harrison's case, I have to attach several additional pages of my own typed responses because there isn't enough room in the original form to fully answer the questions. The payment is awarded for various lengths of time so a claimant (or their representative) has to recomplete all of the paperwork from time to time, and supply any evidence requested, to continue receiving the benefit. As Harrison's appointee, I took the call today on his behalf. It lasted an hour and a half!

Nurse - Giving medicine (which over the years has included been taught to draw up and give long courses of intravenous antibiotics at home; tube feeding; managing delivery of oxygen therapy 24 hours a day for two and a half years); ordering and administering multiple medications several times a day; delivering therapy programmes at home - speech therapy, physiotherapy, occupational therapy; setting up, monitoring and maintaining medical equipment; generally being on constant alert for any deterioration in Harrison's wellbeing (he's not able to identify this for himself). 

Chauffeur – Driving Harrison to activities and appointments.

Teacher and facilitator - Providing and supporting appropriate stimulating activities and learning opportunities, socialisation, mindfulness, creative activities, exercise and sometimes even doing things just for fun!

Personal assistant – Supporting Harrison with washing, grooming, dressing; accompanying him to all his appointments and social activities; helping him to plan and organise his day; constantly reassuring him and reminding him, whilst trying not to come across as overbearing or a nag!

Friend – Confidant and sounding board. I've always been honest with Harrison regarding his condition and life in general. This has given him the confidence to tell me about things that are worrying him. He doesn't always do this in a timely manner so I try to pick up on any emerging signs and start a conversation with him. 

Housekeeper – Harrison doesn't have any practical skills. I've tried teaching him over the years but he doesn't retain the need to do daily tasks such as laundry, washing his dishes, clearing up after himself etc. He will do part of the task with direct reminders e.g. put his clothes in the washing basket and plate in the dishwasher but genuinely doesn't realise that his plastic drinking cups that he leaves next to the sink, need to be washed up. 

I have to ensure that I cook appropriate meals for Harrison (he has difficulty eating some foods) which often means that he has a different meal to us, and I sometimes need to encourage him to eat.

Researcher - For advice; medical papers; social and educational activities; clubs; accessibility of places of interest; places to visit.

Now you could say, that as Harrison's mother I would be doing a lot of these things anyway, however my friends who have typically developing young adults the same age as Harrison no longer need to do a lot of these roles or have never needed to do them.

Over time, they've been able to take a step back and allow their young adult to take more responsibility for most areas of their life. 

In our case, we can try and give Harrison some sense of independence with choices of activities and things like that but a change in circumstances throws everything off course. A recent example of this would be the COVID-19 pandemic.

Harrison was classified as clinically extremely vulnerable (CEV) which led to us shielding him for the past 800 days, so inevitably the independence Harrison did have has taken a step back. For example, pre pandemic he had a good routine. With activities going online during the first lockdown it was somewhat maintained and he was able to more or less organise himself with reminders and checks from me. As the country opened up again, and Harrison’s activities went back to face to face, the online classes ended and he hasn’t been able to settle into a new routine yet because he's still stuck at home. 

As his main carer, I’m on call 24 hours a day although I can actually sleep at night because Harrison’s overnight medical equipment will alarm if he suddenly becomes unwell.

In addition to all the caring, I’m also:

A casual worker on an ‘as needs’ basis for a couple of hours per week doing an administrative role usually working from home. There’s no specific daily commitment required so I can fit the work around Harrison’s needs and other activities.

A volunteer as the Chair of trustees for a UK charity. I'm now also a Peer Leader working on patient engagement projects nationally, locally, and at the Royal Brompton hospital. All but one of these projects are conducted via completely virtual meetings.

A wife. Although we’re in complete agreement that Harrison’s needs come first, I still need to consider our needs too. Whilst the three of us have been 100% ‘working’ from home over the past two and a half years, I’ve tried to be mindful of everyone’s needs and prepare all of the meals (no take aways or meals out). It's a real challenge to try and offer interesting and varied options day in and day out, especially when you don't enjoy cooking!

Harrison’s mother. It’s becoming increasingly difficult to balance his medical needs versus mental health needs. Individuals with 22q deletion syndrome have a higher incidence of mental health conditions than the general population. I’ll be covering this separately at a later date so I'm not going to go into too much detail here except to state that the mental health aspects of 22q deletion syndrome can range from anxiety all the way up to schizophrenia. When you know that there's a higher risk of a mental health condition developing, you have to more carefully consider the impact of decisions regarding generalised medical needs.

It’s safe to say that I’m fully occupied from the time I get up to when I go to bed!