This week I thought I’d share a day in my life as a disabled carer, I hope this helps everyone see that disabled doesn’t mean lazy!
Image description – two hands are seen reaching for a red rose in a garden, both hands are white and one looks older than the other.
I am disabled I have several chronic illnesses; I became sick in my early twenties and spent a lot of my married life alone while my husband worked full time. He was my carer when he could be home and I rarely left the house due to chronic fatigue, and generalised anxiety disorder.
My mother has Multiple Sclerosis and lived alone in the home I grew up in, until a fall at the very start of covid made it clear she needed help. We put our home up for sale where we had lived for a decade, and we loved because she needed us.
At first, I thought I could cope, I was a nurse before I became disabled so knew what was required. My husband carried on working full time, then when I was struggling dropped down to part time and finally had to stop working so he could look after us both.
I might have my own health issues, but there are still jobs that need to be done and I also need to live my own life. I do share vlogs on my Patreon of my life every month and it is only £2 a month to gain access to those.
But here is a typical day in my life as a disabled carer:
- 8am – wake up and sit up making sure to put something on my kindle to wake up to usually a silly YouTube video.
- 8:30/9am – Get out of bed and use the bathroom before going into my mom’s room and waking her up. I lift her legs off the bed and bring her walker before helping her to get washed ready for the day.
- 9:30am – Follow mom downstairs and while hubby gets her breakfast, I get my own if I can and sit down watching some YouTube while I try to shake off morning brain fog.
- 11/12am – Mom usually has a hot drink which me or hubby will make for her and take to where she is sitting. I will have a shower if I can, I tend to shower every other day to save spoons or have a wash and get dressed. I will take photos of my outfit for Instagram and edit that while I sit a few minutes to rest.
- 1pm – This is where I will take an hour in my altar room, here I spend time with my gods and meditate, maybe do some witchcraft depending on the day.
- 2pm – This is time for lunch, I will make us a hot drink and make sure we take our meds, if hubby is home he will make the hot drink. I might make some sandwiches but most of the time we will just have a snack, so we don’t take my meds on an empty stomach.
- 2:30pm – the afternoons are usually time for me to do things like write a blog post, record or edit a YouTube video or rest depending on the day of the week. Mom and I both are at our best in the afternoon usually, so we tend to do our own thing which is nice.
- 5pm – Dexter, our dog, has his dinner, my husband does that, and then we work together to make dinner. It tends to be a set meal each day of the week and we try to make it as healthy as possible. I cannot do this alone, so hubby will cut vegetables, carry things that are hot etc while I will help while sat in my perching stool.
- 6pm – this is generally when I start to get tired so we will just sit and watch a TV show together, it’s Vera at the moment. This is a nice relaxing time all together where we can just chill and be together it is so nice I really appreciate this time every day.
- 7:30 – it is time to take evening medication, hubby will make us a hot chocolate and we have a biscuit with it.
- 8pm – Mom likes to stay up, so I head upstairs and do some exercise usually from my accessible exercise playlist. It is things like seated yoga, or exercise specifically for people who are disabled, maybe some Tai Chi. Very gentle but keeps my body moving and helps my chronic pain so important to do some form of exercise if possible.
- 8:30pm – I have a wash and get into bed; hubby usually will go and hang out in his man cave while I watch a movie or TV show on my kindle. My back pain and fatigue mean that going to bed early and resting helps me to sleep and not be quite as foggy in the morning.
- 10:30pm – Mom usually comes to bed, I bring her walker to the top of the stairs so she can use it as soon as she comes up in her stairlift. I lift her legs into bed and tuck her in, she likes to watch TV and play on her IPad, so I get her set up and say goodnight shutting her door so the sound doesn’t keep us up.
- 11pm – I usually then get back into bed and go to sleep.
It is not easy for anyone to be a carer, I am lucky that we all get along pretty well, but it was a massive adjustment for all of us. It’s hard because we are all on benefits, the house has not been decorated since the early to mid-1990s and needs doing!
I wish I had the energy to keep up on dusting and hoovering, I wish I could decorate the house, but I don’t regret our decision to move in. It is hard on us, and my illnesses have definitely worsened since making the decision, but when your family needs you, it has to be done.
I hope by sharing day in my life as a disabled carer, you will see that just because we need to live on benefits, we are not lazy. Our government might try to demonise us, but without unpaid carers, could the country cope? I don’t think so!
Thank you xx
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