Hi everyone i am not a regular poster and still struggle to identify as a carer but some previous support from one of your forums gave me the courage to identify at work as a carer mainly to access a bit of support so i feel a bit more confident to ask for some more advice if anyone feels able to .
We are very fortunate in that the person we care for can have some very good times when they are independent and can indeed manage without a lot of support during some but not all crises.
For a little extra context our person is our beloved child who is blessed with a family of their own but also lives with significant and chronic health conditions .
However I feel like i am now almost a habitual carer and just feel super guilty when they are coping and worry they are struggling and not telling me . I worry all the time that they feel a burden or i may have somehow upset them or their partner and made them think i donāt want to help out .
For example i had a day off work yesterday as i just needed a break and I spent the whole day feeling guilty about not spending the day with them helping them out with things that they can do but are really hard for them . I felt guilty that I needed that time but also acknowledge that they are coming to terms with being disabled and working out what works for them and sometimes they need to do that by themselves.
Can anyone tell me the guilt will go away as I just feel that unless i am making everything better for my child i am failing them .
Any thoughts on how to cope emotionally with finding a balance when caring for a young disabled adult ?
Thank you so much in advance for reading and for any wisdom shared.
I have a 38 year old son who has autism. The hardest thing in the world was to let go - even a little - so he could have a life that included us less and gave him more control. He moved into his own place, fully supported by staff, back in 2010. Weāre still involved with his care, but much less so. He had a very stable staff team for a long stretch, which made it easier, because they got to know his little ways. And his bigger ones.
Covid messed it up. During that time he lost all but a couple of his regular team, and handovers and training for new staff was a real problem. So now the staff situation is more stable, weāve been going over to his house to offer some background on Mike, structured in a way that helps to train the staff supporting him to spot the signs weāve learned over the years. After a wobble, his support is now picking up nicely. And weāre starting to step back a bit again. All the time, we ask our son if itās ok for us to come and do this: heās generally ok about it if we put on food for his staff (that way he gets some soup for the freezer, or whatever).
Itās difficult, but give yourself permission to hang back a bit. Itās not as if they donāt know that if they really need you, youāll be there, is it?
Thankyou so much for sharing your experiences , its really helpful.
My husband is of exactly that mind ie they really arenāt backwards in coming forward when they need help and he genuinely thinks that just as we leant what works for them , they did too and frankly the independence and life they love is a result of us all working together for 13 years to get to where they are now.
Plus as he reminds me they have a small child now and so are basically just working out fast what they need to do as small children generally donāt give much quarter
I like your phrase of giving your child a life that has less of you and more of them in it and i think thatās something for me to reflect on ā¦ā¦
Caring is unique to each family isnāt it , but do you think being a carer for your child has some commonalities between families ? ie that strange tension of letting go as all parents do but also not quite being able to ?
I think we do all take on caring in different ways, but there are certainly common threads. Iāve been fortunate enough to work with family carers over about a 30 year period, and to be honest most of the parents Iāve worked with have struggled with letting go. Itās absolutely natural. As with any parent, youāve taken on responsibility for their care, but while we think of caring for a typical child is time limited - and in terms of physical care and doing their decision making for them, it is - there comes a point where that higher level of caring eases off and comes to a conclusion. And some parents - Iām told especially mothers, but Iām not entirely sure about that - struggle to let go even then. Certainly we had that problem with my wifeās parents! And my Mum, at times, to be honest, when we first got marriedā¦
But with a disabled child, thatās not so easy. For a start, the decision making and hands on care donāt end so clearly or so quickly. Depending on the working relationship with outside agencies and the ability/understanding of the now adult child, it may be harder to get the authorities to listen. My sister was fiercely independent but didnāt have the skills to be independent. Her social workers were fooled by her articulacy and she ended up in a spiral of debt that we knew nothing about because she wouldnāt allow us in. She didnāt want us to treat her ālike a childā and take over, so she ignored every threatening letter. Partly because the language level was far above her reading ability. Her credit score must have gone into the minus figuresā¦and we didnāt find out until after she died of a stroke at the age of 53. I stopped counting her debts at Ā£25k, and I was only halfway through the paperwork Iād found.
Every parentās nightmare.
The stage youāre at seems to be one where youāve got it about right. You help out when you can, and when youāre needed. And you feel guilty that youāre not doing more. In other words, youāve relaxed your grip on the apron strings to the point where they are managing - and learning to be parents themselves.
My son is 44, brain damaged at birth, when my health failed 25+ years ago, residential became the only option, now he lives in a flat with carer support. I know he would love to live with me at home, but itās not possible. However, itās so important that he has a life of his own before I die. His flat is lovely, with all the home comforts anyone could want. He goes to a training centre 4 times a week, and I know they would support him in a crisis. I just wish his dom care staff were more imaginative.
Thankyou Charles for your very wise words and yes perhaps i can just enjoy being Nana now and keep reminding myself they will shout ā¦ā¦ funny that when your child is disabled nobody ever talks much about letting go ā¦ā¦ it comes for us all I suppose just when disability is involved it happens when it happens and when we were deep in the trenches so to speak i just never thought of a time when we would not be in such a hands on roleā¦. Its taking some adjustment Bowlingbun thankyou for sharing your story , it sounds like your son has a good life and that you have been pivotal in making that happen but as you say we are not blessed with immortality and so the toughest job we have is to ensure our children can manage without us ā¦ā¦ easy for me to say but so very very hard for me to do it ! But i can take some guidance from you and thankyou.
I wish you both a lovely evening and remain so grateful for your kindness
Nykola
Nykola
It must be extra difficult to ālet goā of a child as they grow up.
Iām very fortunate that my 2 daughters are not disabled. I did go through the empty nest syndrome never the less. My late husband noticed. Came in one Sunday lunch time kissed me on the cheek and said you miss the kids donāt you. Took me by surprise to be honest. My reply was " yes I do, but we did our best for them so we can concentrate more on ourselves now. I think my reply surprised him, and I surprised myself . Always there for them when needed. Now I enjoy my grandchildren. If you can let go as much as possible you will enjoy being a grandparent. Iām nanny, even to the older ones, and g nanny to great grandchildren. You are nana and itās very rewarding
That sounds just like my daughter Charles. Wants to be independent but lacks the skills. A social worker told me this week that she is a credit to me which quietly pleased me but sometimes it is SO hard.
I was chatting to a young woman yesterday who has a disabled daughter in her 20s. She is 20 years younger than me and reminded me of how like her I was and to be honest, still am even though my daughter doesnāt live with me.
She says her daughter is easy to look after because she is happy watching cartoons at weekends even though she encourages her to come out and do things. During the week she attends a day centre. She wants her to stay at home forever as she does not feel anybody else can care for her like she does but dreads the time when she is no longer able to do so.
Then she says when she takes a holiday and leaves her daughter with her elderly parents who totally love her, she spends the whole week choosing presents for her daughter and thinking about her all the time. I know what itās like to never switch off!
The only time I truly switch off is when Iām in Crete. One of the other regulars and I have become very good friends, but canāt get together in the UK. H has just retired as an independent social worker, a carer for her husband. We had a great holiday last year. Coffee, swim,sun bed lunch, sun bed, swim, back to the hotel. For 2 weeks we did nothing for anyone other than ourselves.
Hi everyone thankyou so much for all your comments and thoughts and sharing your stories. For a little context my child was not born disabled other than some specific learning difficulties and some developmental delays ā¦. Just your average parenting challenges i guess however from their mid to late teens developed some significant and chronic illnesses entitledā a rare diseaseā which is a technical term forāexcuse me whilst i google you , you little unicornā It just felt for such a long time as though one illness just piled on to another and their care needs due to ill health increased , it was soul destroying and completely terrifying often.During those times we weāre also trying to be ānormalā too and do stuff that families do so that their life was not just about hospitals , illness and being cared forā¦ā¦ of course in the middle of it they managed to fall in love , complete their degree, get married, buy a house, and have a childā¦ā¦ they are nothing if not determined So here we are 13 years later and i guess we have all come to terms with them being disabled they understand their body very well so know what they need and now have a job they love , a husband and child that is their life and a home of their own. We are so blessed in so many ways not least with our phenomenal NHS which has saved their lives too many times to count but also with the opportunities as a disabled person they have been afforded. They are clear that their independence is because of the care we have provided and continue to do and as with all illness they have periods of well ness as well as periods of ill health in which they need more. I find it so helpful to hear so many of you never quite switch off as i was beginning to think i was just in the habit of beingāon callā and also if not āon callā thinking about them all the time. And the emotional landscape i toddle around veers from abject terror to guilt that I canāt make things easier for them. But as you say we have done our best , the independent life is theirs , we are always ready to step in when they need something and we have our next generation to enjoy .
Thankyou everyone for all your input and for sharing your stories , itās good to know i am not alone
Best wishes
Nykola
Nykola, what support do they have apart from you?
Itās time they had their own support system, especially as they have a child of their own.
Keep a diary for a month of how many times you have to step in.
You need to learn how not to be a carer now, to step back and relax, go on holiday etc. safe in the knowledge that they are truly independent of you.
itās time to
Thankyou everyone for your lovely words , empathy, shared experiences and good old fashioned sensible advice i shall take it all on board and it really has made me feel so much less alone.
I wish you all a lovely weekend
Nykola
and he genuinely thinks that just as we leant what works for them , they did too and frankly the independence and life they love is a result of us all working together for 13 years to get to where they are now.
Bowlingbun thankyou for sharing your story , it sounds like your son has a good life and that you have been pivotal in making that happen but as you say we are not blessed with immortality and so the toughest job we have is to ensure our children can manage without us ā¦ā¦ easy for me to say but so very very hard for me to do it ! But i can take some guidance from you and thankyou.