Guilt

[Lindypops56]

Has anyone else experienced guilt about going on holiday without their family member?

Alex is 33 lives in supported accommodation and has a full life doing things he enjoys. He struggles to cope with any changes to his routine and gets very stressed and anxious before trips away. A recent trip to London to see ABBA Voyage caused him enormous anxiety beforehand and he said he never wanted to do anything like that again. He has ASD moderate learning difficulties and can be very obsessive and challenging. I’d like a family trip away with grandchildren and my other children but they have both said - he would ruin it, it would all be about him and it would cause him too much stress. We have holidayed together in the past and it was very difficult… He spends huge amounts of time closeted in his room; doesn’t want to join in with meals and activities.

Am I right to call a halt to my plans for this? I have my own mental health to consider and I am hugely involved in his life on a daily basis in spite of his living away from home. Or - am I being selfish??

Thoughts and advice welcome 🙏🏼

Linda

[class9F]

My son is 28 and in supported living, he loves going on holiday but it is very stressful and requires meticulous planning so he knows exactly what he will be doing. We now have a week away with him and a second holiday somewhere different without him. We used to have a 2 week holiday with him when he lived with us. We always make sure on our holiday we do things he wouldn’t enjoy so we don’t feel guilty that he isn’t with us and arrange for his support workers to do a special activity with him like a day trip to Butlins or a trip to the local steam railway whilst we are away so he doesn’t miss our weekly visit. As you have said your son doesn’t like changes to his routine I would go away with the rest of your family and not feel guilty.

[Galwaybay2 in reply to class9F]

Go. The rest of your family deserve their time and attention, siblings have more than their share of being less important. One day you will be gone and your son will not have you at all, he needs to have lots of opportunities to not having you there. That's a fairly brutal way of saying that we have to gently separate from our children. Enjoy your holiday.

[Lindypops56 in reply to Galwaybay2]

Thank you! Wise words and you are right about the need to be less available.

[Bergersil400 in reply to class9F]

I am presently in Spain on holiday with my husband and our 2 sons, age 32 & 23. Our daughter age 29 has been in supported living for 2 years. We started planning for occasional breaks through a provider, away from our daughter when she was about 16 and still at school. Mainly because myself and husband are involved with sporting events as volunteers both in the UK and abroad which involves us being away for 1-2 weeks at a time.

As long as you are confident with the providers and your sons ability to cope without you being away from yourself, and you have planned thoroughly with the home there should be no reason why you can't enjoy quality time with other family members.

We have our daughter home most weeks, and she has holidays away with myself and husband. Our last holiday as a 5 together was 6 years ago, when we went to Spain. There were certain challenges due to her sleeping in the same room whilst on holiday, which she didn't like, and 2 nights she was awake all night which meant the same for us.

My husband has just come back from the Paris Olympics, and I had our daughter at home with me for 10 out of the 21 days, so a day after he returned and a day after our daughter returned to her supported living it was my turn for a break.

So far the home has not been in touch and won't be unless there is an issue. She has funding in place for regular trips and activities out.

She will return to us for a few days after our return to England next week.

We are already planning to take her on a short break to Disney land Paris next year for her 30th.

I would say go for it if you are happy with the provision he has at the home and he is happy enough for you to go.

[Silverelephant]

I’m sure your feelings of guilt resonate with many of us on here. It is easy to be so focused on making our young persons life the best it can be we forget about our own needs and mental health. Also, because their siblings are getting on with their own lives without us having to provide the same level of support, we can forget how important it is to have quality time with them. You have said your son finds these situations stressful. My daughter finds trips that last more then a couple of days too stressful to manage so we find ourselves only booking these kind of trips. However, we also make sure we have a trip on our own where I can relax without worrying if she is enjoying herself and not becoming anxious. She doesn’t like me going away but we have compromised by always planning a favourite activity to do when we return. Please go and more importantly go and enjoy yourself without spending your precious time away feeling guilty. Your son is in a place where he is safe and will be busily getting on with his life while your away.

[Lindypops56 in reply to Silverelephant]

Thank you so much. You clearly understand so well what it’s like.

[49Twister in reply to Lindypops56]

I agree with everyone x

[Blackhouse]

Absolutely go. Our daughter is 24 and this year is the first we have not taken her on holiday with us - just my husband and I. The last 2 trips were of no benefit to our daughter. All she wants to do is watch shows on her tablet - she had no interest in being on holiday. She was happy at respite and we had a very relaxing holiday so win/win all round. We all need our breaks from caring and there is no guilt in admitting that. We need to be fit and well to be able to look after our loved ones. Go and enjoy!

[SpeedyH]

I think it might be helpful if you focus on your son and what he wants when you make the decision. You said that *you* want a happy family holiday and that *his siblings* don't want him spoiling their holiday. He is 33 and has told you he doesn't want to go. He enjoys his home life and the routines. He doesn't 'spoil' anyone's holiday if he is taken somewhere and struggles; the holiday is 'spoiled' by the person who knowingly takes him somewhere he finds difficult just to satisfy a dream of a happy family holiday. I'm sorry if this sounds harsh but your son is the vulnerable one here and the decision should be made in *his* best interests. I would hope that the supported living provider is advocating for your son in this. You have the choice whether you decide to feel guilty or not, but this shouldn't affect your son's well-being.

[outdoorsy1]

it sounds like your son would prefer not to go. Although it goes against the grain to exclude one of your kids, this isn't what would be happening here - you would be making the right choice for your son.

Your other kids have complicated your feelings talking about him 'ruining' the trip - but this isn't what it is about - what would your son prefer? to not go. I say have your holiday with your other kids/grandkids without him, and then think about what he would actually regard as a treat for him. it might be something small, like a particular game or something. If you want to do right by him, this includes respecting his desire to not go on holiday.

From a looking after him and you point of view - a break would be good for you and give you a rest and give you the energy to continue to help him, plus it would give him independence, within his safe setting.

[Tracidu]

Hi , I cant manage to take my 39 yr old son on holiday on my own now since my husband died 6 years ago .and my daughter her partner and 3 boys go away with out us which I totally understand as they work hard and need time together ..The quilt is not a choice its built in from the day he was diagnosed and the fact he will never have the privaleges other people take for granted is heart breaking at times .. I completely empathise with you , My son lives with me and it can be a very lonely experience seeing other families get together without all the worry of the situation s that may rise with our adult children ,, my son is 40 in September and I have arranged a trip to london to see the Micheal Jackson musical as he knows and loves his music , then a meal after which I have told the resteraunt about his needs , they were very kind and offered a quiet place for us all. One minute Im really looking forward to treating him as hes never had a special day , ... then it comes over me it could be a disaster if he cant cope .. .

I use a Holiday company which takes special needs adults on holiday with good support and lots of activities wether they join in or not its not a problem . I wish things could be different and its definitely not a choice to feel guilty , I hope you have a nice break with the rest of your family and your son has a nice time with his support network. It sounds like you do everything you can to make sure he has a good life as I try to with my son , its never easy . You are definitely not being selfish to look after your own mental health . Kind regards to you and your son

[49Twister in reply to Tracidu]

Hi Tracidu hope you don't mind me asking but which holiday company do you use. I believe this is the route to go for my son as I am the only person who takes him on holiday and I'm now 75 so probably can't for much longer. It's good to have recommendations S there are a few out there. Thankyou

[Tracidu in reply to 49Twister]

Hi , 49twister, My son goes away with Breakaway Supported Holidays , they are in Chelmsford Essex . Im not sure if they arrange holidays from other areas but its worth asking them , my son has been going away with them for around 17 years now since leaving a mencap college . Breakaway supported holidays have a website .

[49Twister in reply to Tracidu]

Thankyou for the info will definitely look them up

[Lindypops56 in reply to Tracidu]

Thank you for your message. It’s not easy when you have other children too. My daughter has made it plain she wouldn’t want to go on a family holiday with him too. .

I hope your trip to London is a success too.

[Tracidu in reply to Lindypops56]

Thankyou , yes my daughter loves her brother to bits but finds it too stressful with her 3 boys on holidays which I understand but cant help feeling a bit sad about it . Hopefully his 40th birthday will go smoothly , Im taking every step to help him through the day 🤞🤞😊

[Lindypops56 in reply to Tracidu]

Sadness - that’s exactly it. Sad for the way it could have been. I guess there are no guarantees in life tho - even with ‘ normal’ children things don’t always work out as we hope.

[SpeedyH in reply to Tracidu]

Hi. I do understand what you are saying, but I think it is easy to say 'I feel really guilty' without reflecting on whether what you feel IS really guilt and if so, what is the reason behind your guilt and what can you do to right the wrong you have done. I expect few or any of us on here caused our loved one's difficulties. I also bet that most of us leave no stone unturned to do the very best for them. What you described feeling doesn't seem like guilt but more like 'living grief' which is when you have a huge event in your life which causes grief ( like a diagnosis) and that grief doesn't run a natural course because every day there are events and struggles and heartbreak that are renewed grief. So you are caused grief over and over. Perhaps I was clumsy to say you can choose guilt but I do think you can take steps to resolve it if you are truely guilty. (Google 'living grief, it is very interesting!)

[Lindypops56 in reply to SpeedyH]

You were a little clumsy saying I could right the wrongs I had done! I don’t consider I have done anything wrong - I’m just a mum trying to juggle everyone’s needs. But thank you for the advice about grief- I think that’s very relevant.

[Tracidu in reply to Lindypops56]

Theres lots of different emotions that come with having a child with special needs . I agree .living grief is definitely one of the main ones in my opinion.... Guilt comes in when I had and still have to leave my son out of family occasions over the last 40 yrs, also I wish I had shouted louder in the hospitol maternity unit were things were definitely not right but that wasnt me to make a fuss at the time , so the quilt that I didnt stand up for him is often on my mind . . Thanks for the input on this subject .best wishes to you all

[SpeedyH]

That is kind of my point - as you haven't done anything wrong the emotion you are feeling is unlikely to be guilt, is it? And if you choose to call it guilt then you aren't being very kind to yourself. x

[49Twister in reply to SpeedyH]

Thankyou SpeedyH living grief is exactly what it is and not guilt. Your sad that your loved one isn't able to do or enjoy alĺ the things that we do and want them to do to be inclusive. Omg I've not heard that term before "living grief" I must read about this.

[LearningLot]

Could you explain the holiday to your son and ask him if he would like to go?

[Steve__]

Just go! No guilt. You have lovingly been considering one person's feelings, which has it's place. Lovingly considering you own needs and your grandchildren's is also important. Everyone deserves a holiday centred on just them... It's you and your grandchildren's turn. Enjoy!