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Isolation is soul destroying - Carers UK Forum

Isolation is soul destroying

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Hello ! i am Mum to a lovely daughter who has a learning disability but who has always been very fit physically and went to a farm that grows organic veg 4 days a week while l had a full time job.
I retired last summer and had plans to travel a lot and study, my daughter loves holidays and the future looked good. I had some good friends who all liked my daughter and she always fitted in to social situations, her social skills are good, so she was seen as a person. The learning disability was a side issue.

Then she fell off her bike broke her ankle,had operation then blood clots in an arm and around her heart, then urine retention that damaged kidneys. so the past 6 months have been terrible.

To start with friends and family were in contact a lot but now silence. People see the learning disability and not the illnesses. She still has a long way to go to get back to being herself, her confidence has gone and she feels unsafe, l would be feeling the same if l had been ill for so long.

Physically we've come a long way but her right hand still doesn't work and it looks like she will have a catheter for life.

We will get through this but the reaction of those that l felt l was close to has shocked and hurt me so much. She has been ill, it could happen to any one of us, its nothing to do with the learning disability. She needs to see people we both do so why have people turned away ?
Hi Margaret,
Welcome to the forum, you have a lot to deal with, illness for a long time can
bring you right down. people are very strange, I had that with my mum who was
ill for a long time. she was elderly , they only seen an old woman, they don't see
the individual behind the pain of illness . or learning, mum had dementia. so
stay with us, it might help the isolation.
Take care
Thank you Minnie
Hi Margaret and welcome.
People can be very strange in their reaction to long term illness, some are pure gold and stand up to be counted, but lots more disappear like will o' the wisps Image
We all here know where you're at.
Hello Margaret,

I'm so sorry to hear of your daughter's illness, and the knock on effect it is having on all your dreams for retirement. Are you managing to have any sort of break from caring at the moment?
Image I don't have the same experience at you, but I'd like to welcome you to the forum anyway. We all have our problems but always sympathise with each other and really 'listen' where others don't.

Lots of (((((((((((((hugs)))))))))))))) to you Image
Hello and a warm welcome from me too.

I was sad to hear how things have developed, especially regarding people's attitudes. You dont really know people until these 'tests' come along and then friends either shine like beacons or fade away for no good reason. Although you have to accept the things you cannot change, this is tough, disappointing and quite hurtful.

I am sorry to to learn that your plans, following retirement, have been so affected. Nothing is certain in this world of ours.

As fellow carers here have already said, we wont ever turn the other way from one another. Always folk here more than willing to listen. And to care. And I hope somehow you can find a way to forgive those who have let you down, and I very much hope things will now begin to improve for you both. I do hope so. It's good to have you with us, Margaret.

Thank you all for your support. I am feeling very alone at the moment and its good to get feed back from people who know how it feels.

I am getting 6 hours a week, two lots of 3 hours, of a carer who takes my daughter out so l can have a bit of time to myself, this comes from social services. Getting her out of the house is so difficult, she only feels safe at home but she is responding to the carer. They have done a few short visits to the farm where she worked and was always so happy but after an hour she wants to come home.

I'm sure things will improve though l doubt they will get back to where they were, we will see.

I always thought l would get support from friends but only one is giving it and she bless her has health problems of her own so cannot visit that much. I think the others think this will be forever and don't want to get involved, they are only looking at the learning difficulty not the illness she has had for the past 6 months. The learning disability is for life but that isn't the problem, she is still very weak and very depressed, has a hand that doesn't work and a catheter. The hand will improve so l am told by the doctor but will take time and her bladder may recover, more tests are needed. She will get through the depression though again that will take time as for medical reasons she can't have medication.

Sorry to go on and on but the past 6 months have been such a shock, she nearly died from all the blood clots. Now the worse is over l feel l have been left to just get on with it and feel so lonely
Hi Margaret,

After everything that's happened in the last 6 months it's understandable that you're feeling alone. I'm pleased you've joined this forum where you can speak to others who know where you're coming from.

Keep us updated on your daughter's progress and yours.

Best wishes,
People are people,some are friends for ever,some just when they benefit.If they are not around then worry not,people are like buses,someone will be along soon.The next friends you make will probably have more in common with you because of the circles you move in.You have already found us!Try not to be upset or hurt by others indifference,that`s how people are.I should know,i`m one of `em.Used to have friends who i cycled with.......no more cycling so no more friends.Now i have friends who i have caring in common with.One door closes......... Image Image Image