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Is My Guilt Completely Normal? - Carers UK Forum

Is My Guilt Completely Normal?

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Hi,
I'm really new to all this. My husband was diagnosed with an aggressive form of MS back in March of this year. Everything has changed.
I worked full-time, he was a house dad. Within just 6 weeks of his diagnosis I had to give up work due to him not being able to care for the children on his own anymore. Our girls are 13, 8 and 5. The 13yr old would help as much as she could when I was in work, but this just didn't seem fair, she was having to do everything for her sisters as a lot of my working hours were the evenings when they were home from school. I was doing management training within the pub/restaurant environment and I absolutely loved my job, my end goal was to run my own place, it always has been since I was a child.
My husband is so different to the man I married, he was so active, always up and about and doing something. Now due to the way the MS has attacked him, he is so restricted. I can't leave him on his own as he needs constant supervision in case he trips/falls etc due to his weakness. He can't walk more than a few metres at a time so going on our weekend walks with the girls has gone, taking the dog out is impossible for him now.
We have had lots of small adaptions done to our home, but now they are looking into bigger changes, possibly even moving us.
I feel awful, we are stuck together all the time, and get no space and when I do I feel so guilty. I try and go to the gym a couple of evenings as the eldest is home but I spend the whole time fretting he is ok, and struggling with my own guilt that I have gone out and he is stuck indoors again!
I feel trapped, trapped by our situation and trapped by my own feelings towards our situation.
Hi Mums army and welcome to the forum as Sussex rock said guilt is very common among carers among other emotions.There was a thread on here not long ago where we were asked to use ten words to describe being a carer and guilt came up over and over again.Do try and get out on your own when you can you need to recharge your batteries so you can continue your role as a carer and a mother.
Best Wishes Julie x
I'm really sorry to hear about your husband illness. This sort of diagnosis leads to feelings like grief, and the six month low when someone is widowed is well recognised - so don't be too hard on yourself just now. Money doesn't make anyone better, but it can certainly make life a lot easier. Ring the Carers UK helpline to make sure you are getting every penny you are entitled to. I found when I was newly disabled and caring for two others that a dishwasher and washer/dryer were absolutely essential - and your children are old enough to help with things like this. Streamline absolutely everything, no clothes that need ironing, no ornaments, all reduce time - because it's the time pressure which can make a bad situation far, far worse. Has your husband had a recent "Needs Assessment" from Social Services? Have you had a recent "Carers Assessment"? Are your children recognised as "Young Carers"? Services vary from County to County but there is usually something for young carers now. They have a lot to come to terms with too. You now need to adopt a different way of looking at things. You are NOT Superwoman, however much others might expect you to be, you'll end up like I did, a Clapped Out Carer with a life threatening illness. Work out your priorities, be realistic, and ditch all those that don't matter. Every time you do something, for a week, ask yourself if you really MUST do whatever it is your are doing? For the moment, let go of your dreams. Some of mine will never come true. I have learned that people, my family, are the only things which really matter in life.
Would some kind of mobility scooter/wheelchair be a possibility?? There are some posts elsewhere on this site that describe how transforming that was for a family in similar circumstnaces - ie, one mobility limited parent but active children. If your husband were mobile again, and you could all get out, then 'treats' like Centre Parks might be a real tonic.(Expensive, yes, I know, but CP is way way cheaper if you are ruthless and take your children out of season, ie, during term time - and the school should damn well let you considering your family circumstances)(my son's school was wonderful when the only time we could get a holiday that my terminally ill husband loved was in term time - it proved to be our last family holiday, and is a precious precious memory....)

Just being able to get out and about at w/e - eg, you might be able to get a family membership to the National Trust, and then have lots of their gardens to explore - might help lift that dreadful lid that is closing down on you now and trapping you. Also, great that you are exercising still - endorphins can be a lifesaver, and it's essential me time and self-therapy - but if you take out a manual wheelchair with your husband that's quite a lot of exericse in itself! (Shades of those 'jogging running mums' pushing 'sports buggies' along the park while racing along!)

Do hope you have managed to find some forums specifically for MS and their caresrs, as I'm sure you will find loads of helpful advice and experience. It will make you feel less alone and isolated. When my husband was diagnosed with cancer I found the cancer forums invaluable for that reason.

All the very best to you and your family at such a difficult and distressing time. Jenny
Hello and welcome

I was 9 years old when my Dad was diagnosed with aggressive MS and to be honest I loved spending time with my Dad so if my Mum went out and left us alone together it was great and now I have very fond memories of my childhood and our special times together. My Dad had a manual wheelchair which enabled us to go into the garden and grow veg or go out to the shops, we also used to play a lot of boardgames and cook my Mum and Brother lots of delicious meals with food colouring in them and then laugh at their faces trying to eat it!

I guess what I am trying to say is that you may just be doing your daughters a favour by giving them special time with their Dad alone, so you really shouldn't feel bad at all.

Thinking of you and your girls, I know it's a tough time x
Just to say, if you haven't already done so, it's vital you inform your children's schools of the situation at home. Each of them should have a pastoral tutor, or a form tutor, who has their personal welfare at heart. These individuals should know the new circumstances, so that they can observe and monitor whether your children are showing signs of stress at school - eg in changing their behaviour, isolation from peers, school work being adversely affected, etc etc.

Keeping school 'normal' for them may be come vital to their psychological well being - at school they are just 'like everyone else' whereas at home they are 'children with an invalid father'. It's really important that they are able to continue happily at school, and that's why their tutors need to know about your husband's illness.

What I told my son when his dad was diagnosed with cancer, and then died seven months later was that, for absolutely certain sure, he would NOT be the only pupil at school with such experiences (sadly, there were at least two boys in his year whose father had died recently), even if none of them ever talked about it (let alone wanted to...)

Speaking of that, it would be useful for you to find some forums or facebook groups for children whose parents have long-term illnesses and disability. Your children may not join in, but at least they know they could if they wanted, and that may help to reduce their sense of isolation and 'difference' from their peers.

All the best, Jenny

PS - very intersting what Bluebird says about her fond memories of all that time with her own father! Most heartening!

PS - very intersting what Bluebird says about her fond memories of all that time with her own father! Most heartening!
My Dad was wonderful and brave Jenny, he died when I was 15 and was really poorly for most of that short time that I had with him, but I never remember the illness just the laughs and adventures that I had with him. I miss him dreadfully, but I was so lucky to have such a lovely childhood with him, I know how fortunate I am x
Hi, yes how you feel is totally normal.

Could your hubby use a mobility scooter to take the dogs for walks and to join in with family walks too?

Melly1
Hello, mums army, and a welcome from me too. yes, guilt is part and parcel of being carer, unfortunately, so you are completely normal.
Sorry I haven't got anything useful to add, but you will find loads of support on this forum

Love Phoebe xx