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Carer guilt – is it just me or do you suffer from it too?

Am I the only one that does their best but still suffers from a massive amount of guilt? We hear a lot about mother guilt, but I think carer guilt is a thing too. In my head I know I’m a good mother, wife, and daughter but I’m constantly beating myself up for what I’m not doing. Recently, I wrote about the incredible amount of admin involved in caring for a loved one with a disability but there’s more to it than that. I am far from a perfectionist, but I do try and do my best by everyone, but I never feel it’s enough and that’s exhausting.

Caring for someone with a disability - Have Wheelchair Will Travel

A friend commented that I’m part of the sandwich generation, a term I hadn’t heard before. As it turns out it’s a commonly used phrase to describe people who are still needed by their children and also stepping into the role of helping ageing parents. Braeden and Amelia are both of an age where they would usually be independent and not need me, but Braeden’s disability means that one of us is always with him. Someone needs to be home to meet him when he returns from a day out and to assist him with all his daily living needs.




As an only child I want to do all I can to assist my parents and to give them company, but it’s hard when Braeden is still dependent. At a time in my life when I should have more time to assist them, I am not much more available than I was when Braeden was younger. I’m conscious that as they get older my time with them is limited and I don’t ever feel I’m spending as much time with them as I’d like. They live next door to us so I do a lot of dashing in and dashing out to deliver meals, medication and other bits but it’s not the same as giving them a good chunk of time. I’d like to provide them with more company than I do but my time is constantly torn. Recently I’ve been reading to them my dad’s diaries from our trips overseas and it’s been lovely remembering those shared experiences we had when I was a child and we travelled overseas. On a nice sunny day there is nothing more special than sitting with them, reading the diaries and having a laugh at some of the things dad wrote in the diaries. It’s such a lovely record of my childhood travels.

Carer guilt - Have Wheelchair Will Travel

I’ve written about my guilt caused by the uneven split of my time between Amelia and Braeden (you can catch up here.)I’ve always done my best to give Amelia some special time but it’s not always possible. Sometimes poor Amelia comes home to me quite worked up after a phone call about funding, or ranting about red tape or some stumbling block and once I’ve calmed down I realise what an impact that mood and disruption causes her. It’s hard to contain those emotions sometimes but it does bring down the mood in the house. Unbelievably, although Amelia is old enough to understand, and has never shown a bit of jealousy, I still have guilt over the split of my time and attention.

Carer guilt - Have Wheelchair Will Travel

I loved taking her to the US for a special mother daughter trip a few years ago and I tailored the trip to her interests but of course, there was a bit of guilt at leaving the boys behind.

As for Braeden, I do a lot for him but with more time and more energy I feel there is so much more I could do to help him achieve greater independence and reach his potential. Yep, guilt there too.

Carer guilt - Have Wheelchair Will Travel

When the kids were younger my parents were able to look after them so Hubby and I could go away together or have a night out. My mum was always good at seeing tension and suggesting, not so subtly, “I think it’s time for you two to have a night out. We’ll mind the kids.” As Braeden grew up it became more difficult for my parents to support him, and we had a real gap in spending quality time together. This year we’ve remedied that and it’s been wonderful. Hubby has always been such a great support and is an amazing dad and son-in-law so I always want him to know he’s important and appreciated too.

Carer Guilt - Have Wheelchair Will Travel

I’ve spoken a lot about the guilt I suffer from, but there is a positive end to this tale. I no longer let it stop me from doing things and I think that’s important. I invest time in each family member and do my best but over time I’ve recognised that my happiness is also worth investing in. I think parents often go through a period when their children are younger of putting their own wants and needs on the back burner but with a child with a disability this time frame can be extended beyond the average childhood caring years. As many of you have seen over the years, I now take trips by myself and I honestly can say that it refreshes me and gives me such energy to return to be a better mother, wife and daughter. It takes an unbelievable amount of organisation and support to take a trip. There have been times when the organisation involved did make me wonder if I’d benefit enough from the trip for the effort involved. I can report that it has always been worthwhile. Do I feel guilty when I leave? Yes, usually, but I get over it.

I am a mother, daughter, wife and carer but I’m also a person who has dreams and needs. I think it’s okay to try and find a balance. Now to just rid myself of that guilt because it really is a waste of energy. Best stop there before I feel guilty about wasting my energy.

Do you suffer from guilt of any form and if so, how do you deal with it?




 

4 thoughts on “Carer guilt – is it just me or do you suffer from it too?”

  1. Oh, I love this piece. I do suffer from guilt. Our daughter is 7 so the road ahead feels long. We have an almost five year old and I feel like I can never give either of them adequate time. I tried to return to work full-time as I still wanted a career. But, I’ve had to let that dream go. I could not balance it all and felt like I would break down. Thank you for sharing.

    Reply
    • Hi Kamila
      I’m glad this piece resonated with you. I would say that you might want to change your phrase “But I’ve had to let that dream go” you might just need to change it to, “let that dream go, for now!” When Braeden was younger I was full time mum, therapist, admin person but over time I did etch out time for a career for myself. It’s not easy even now, actually, especially now, but I’ve had several years where I could pursue those dreams and still be a good mum. I’ll hope for the same for you.
      Julie

      Reply
  2. Carer’s guilt is genuine and not something I ever thought about until I sought therapy last year, and she suggested I look at it differently. My disabled son is 12, my daughter is 15, and I’m constantly worrying about their future. Can I support them both while I, too, am growing older? Then my parents are getting older, and I’m worried I’m not spending time with them. It’s a constant battle.

    I admitted to someone the other day at the same time as self-realisation that if I stop doing things at 100 miles an hour, I will stop and overthink, so I can’t. That was quite a realisation. I feel guilty for feeling guilty! It’s outrageous. Lovely post, though; I do love following your family around.

    Reply
    • Hi Gemma

      I appreciate you sharing your experience and I could totally relate to your comment about feeling guilty for feeling guilty. I hope you can get a break. I know how hard it is.

      Julie

      Reply

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