Some things I’ve learned being a disabled caregiver -

I have been a caregiver for almost three years, so I thought I would share some things I’ve learned being a disabled caregiver.

My mom had been living alone for a while, she has multiple sclerosis, but never gave us any indication that she didn’t enjoy it. We didn’t know she wasn’t coping and honestly me and my husband assumed she would tell us if she needed more help.

It wasn’t until one day, close to the start of the pandemic, I got a phone call that she had a fall and needed help getting up off the floor. She had sat all day trying to get up and by the time we got there she was exhausted, I helped her shower and made her a drink then we stayed over the night.

The next day we called the local estate agent and we moved in with mom, since then a lot has changed including my husband having to stop working to help. It has not always been easy and we have had to compromise a lot, but it has also been really healing.

I had a lot of anger towards my mum that I had from a child because of her not keeping me safe from a family member with anger issues. It was only after moving in and talking more that I saw it from her perspective and realised she was afraid of them too.

Quite often things happen to us and we can get caught up in it, but I have learned to step back and to try and see the lesson. There is always something to be learned from every day, and becoming a disabled carer has taught me so much about myself and though it is hard work I am grateful for it. At the very least it has healed the relationship between me and my mum and allowed us to become friends again.

It has also allowed me to step into another role, and become part of another group of people who need to be represented and to feel seen. Too often carers are relied on by governments to fill the gaps and save money, with people dedicating their time and energy to caring for family members.

Carers benefits are not very much money, and only one person can claim it even if more than one person cares for the family member. You can also only get it for caring for one person so though my husband cares for me and my mom, he only claims the benefit for mom. And though I help care for mom I cannot get carers benefits, I do it because I kinda love her hehe.

“Working-age carers have a higher rate of poverty than those with no caring responsibilities, and women of working age who are carers have the greatest risk of all. The inability to work is the key driver for poverty among carers. In 2017/18, 36% of working-age carers were not in work, compared with 23% of non-carers.”
carersuk.org

The government already are trying to get more people who are carers or disabled ‘back to work’ with the old narrative that we do not want to work. The truth is that the government could not cope if every carer went to work instead, there are simply not enough paid carers to look after everyone.

I know my mom would need at least three carers to come in every day, to get her up in the morning and get her breakfast; to make her a drink and food at lunch, and then make her dinner and put her to bed. Right now, me and my husband do this for one carers benefit!

So, carers rightly feel taken for granted and not supported by the government, and yet we have no choice but to carry on. The people in charge know this because nobody is going to leave a family member to struggle!

Here are some things I’ve learned being a disabled caregiver that I hope will help anyone in the same situation I am in.

Some things I’ve learned being a disabled caregiver:

Look after yourself – I know we all have heard this before, but you have to look after yourself first. So, eat healthy food, exercise if possible, and take time for yourself so you can be your best self for as long as your family member needs you. It can be tempting to put them ahead of yourself, but you cannot pour from an empty cup!
Laugh – I know it sounds silly, but when things go wrong I have to laugh, I joke around with mom a lot and we make one another laugh a lot. Laughter is a wonderful way to ease tension and so if it is possible find something to laugh about even if its a silly YouTube video as laughter is incredibly healing.
Meditate – Now I know meditation is something many of us turn our noses up at, but taking a moment to step away from the chaos and just breath is so needed. I try to do at least five minutes, but if possible just take a few mindful breaths outside for a moment it will make such a difference. Grounding techniques can also shift your mind from worry to a calmer state. This small shift in focus can help your mind feel less preoccupied with thoughts about being anxious about needing the toilet when you’re out and about, for example, which is an overwhelming feeling for someone who is disabled. Practices like hypnotherapy or meditation can support this by building a deeper sense of calm and control, empowering you to feel more at ease even in unfamiliar places.
Have a hobby – Me and mum have a few hobbies that we share, one is that she is teaching me to sew. We are also trying one new recipe from my Pinterest board every week, something cheap but healthy to make. Maybe you will do a jigsaw together or watch a TV show you love, but something fun away from the set roles is so wonderful. It reminds us that we are family and keeps us connected.
Ease your worries – It can be so easy to shoulder a million worries when you are a carer for a loved one. But talking to a friend once a week on the phone, writing a post on social media, or whatever works for you is so important. Bottling things up is never good for you and if you try to hold your feelings in, you will find yourself starting to get sick. Ease your worries somehow, because being lost inside they can really affect your health by preventing you sleeping and even destroying your relationships with loved ones.

I hope if you are a carer that these things I’ve learned being a disabled carer will help you somehow because you are not alone in this. We can often feel isolated and lost in a sea of hard work and red tape, but there are charities to help so look around and speak up.

Thank you xx