Grr, You Expect Me to do Everything!

Hi everybody, I hope you are all well?

After my daughter said to me – for the umpteenth time – “grrr, you expect me to do everything!” I felt the urge to write a blog post about my need for help around the house and the effect that this is having on my children. Really, I’m perhaps looking for advice, or even just some solidarity that others understand!

My kids are now 16 and 14 years old, which seems crazy to me – surely I’m not old enough to have teenage children?! They say that they don’t really remember me without MS symptoms though, when reminded, my son does remember me chasing him around the house playing “kissy monster” and then asking me one day to do it, but I couldn’t. He also remembers me walking around London independently when we went for his 5th birthday. In comparison, my daughter always remembers me with some kind of aid, whether it’s crutches or a scooter or a wheelchair, and she audibly gasped when she saw a video of me climbing around soft play when my son was tiny, “is that you?!”

My Kids Do Help…

I’ve written before about how much of a help my children are to me as someone with advanced multiple sclerosis. And I am so grateful for it and feel rubbish that they even have to help.  My daughter helps me regularly with the shopping – loading and unloading the trolley as well is pushing it around Aldi. My son has actually started to do some things around the house without having to be asked! He keeps his room tidy and does all his own washing. Plus, now that he’s a strapping 16-year-old, he’s very good at picking me up after I’ve had a fall or if I have simply bent down, and then can’t get up again.

…But They Also Complain

However, I thought that I would just write this brief post because I want to reassure other parents with MS and/or another chronic illness that I don’t always get the help that I need from my children, especially not without some moaning (from me or them!). The other day, I simply asked my daughter to bring a used mug downstairs that was in my room, and she complained, “you expect me to do everything!” I’m used to getting this response now and I’m aware that I do ask her to do a lot. I can’t carry anything, as I rely on holding onto the walls/my crutches/2 banisters  with both hands when I’m at home. I thought about using a backpack to carry things, but I quickly realised that I can’t as that puts my weight distribution off and I struggle even more.

I can remember being my children’s ages and being very independent around the house; the fact that I rely on my kids so much must actually be pretty annoying. I don’t have a shower unless someone else is in the house, ideally my husband or my daughter. I wouldn’t want to put my son through the trauma of trying to help me after falling in the bathroom! I ask for help to sweep the floor, put items away from the dishwasher, take items to a shop if I’ve been making sales on Vinted, get my wheelchair out if we’re going out… Ad Infinitum.

Young Carers

Has anyone else dealt with the same? How have you managed to balance it? In my previous post about young carers, I didn’t consider my children to be young carers. But, soon after, I realised that actually they are; they do things that other children don’t have to do for their parents. Registering them as “young carers” means that they have opportunities to engage with activities, and people, that otherwise might not be available to them. For example, my daughter is taking part in some activities this summer through the council. She has agreed to go because a friend of hers also qualifies for the activities, though she would have been reluctant to go on her own. My son has just said that he doesn’t want to do anything through young carers as he would just prefer to hang out with his friends this summer, which I think is fair enough. Both of the kids say that they don’t describe themselves as young carers, ‘we just have to help you more”.

Barnardos describe the activities that young carers might have to do for the person that they care for:

• Cook and prepare meals
• Help with the shopping
• Clean around the house
• Manage medicines or money
• Give personal care
• Help their special person move and get out of the house
• Look after their siblings
• Give emotional support
• Keep an eye on things generally

Mine tend to do those in italics, though they don’t do all the cleaning. I can add moving items around the house to their ‘jobs’ (e.g. hanging up the washing outside, taking items upstairs for me, bringing a cup of tea to the front room for me) and in terms of ‘personal care’ my daughter helps me with my trousers and jewellery occasionally.

I know the other children who are young carers often have to take on much more than my two do, and I am grateful that I have my husband and wider family to help me if needed.  But I think it is important to acknowledge that I am aware that they do more than the average child; I want the children to know that I see all that they do, and that I appreciate their help so much.

But I think it is important to acknowledge that I am aware that they do more than the average child; I want the children to know that I see all that they do, and that I appreciate their help so much. #youngcarers Share on X

‘Chores’ vs Help

So, I guess what I’m struggling with is making sure that I have a balance between the children doing the “chores” around the house that will help them to become independent and successful adults and then the extra support that they have to give me. Because my husband works full time, I guess it’s something that noticed more recently because the kids are in their school holidays now.

I like to think that my MS doesn’t impact too much on my children, that they have the same opportunities and experiences that other kids who are the same age have. I know that other young carers often have to give both emotional support to those they care for and physical support. Being a child carer can impact on their own mental health a great deal. I try my hardest not to rely on my kids emotionally, they know that my MS frustrates me, but I don’t talk to them about that great deal, I tend to “gloss over” that aspect, I guess.

So, what I basically want to know is:

1. Do your children or significant other have to support you with your everyday activities?
2. Do they complain about it sometimes?
3. Do you have a specific routine or response that helps you to manage this?
4. How do you keep the balance between everyday household chores and helping you for specific needs related to your illness?

I would love to hear your experiences!

Until next time,

Young Carers Action Day 2022 Living with a Progressive Chronic illness….