DO YOU FEEL LONELY — Scope | Disability forum
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Connie00 Member Posts: 252 Pioneering

My name is Connie00
I live with my husband, my 35-year-old Son, and my Nephew who is 47 years old and has severe Learning disabilities. I used to be his carer and appointee. now my Son cares for him and Me, my life has changed so much in the last year and half. 
I never thought I would need a carer or that I would have the disabilities I have now. so, I wanted to talk to you all how things are from my side of the fence.

I'm in my Daughters house, four of us and four of them daughter son-ln-law and their daughter and son. a house full and yet a feel lonely, more lonely than I have ever felt, I'm smiling sharing the joke, but they are talking over me they seem not to see me, they know I am there but they don't want to hear what I have to say, because I might say something they don't want to hear, I am a prisoner have be escorted everywhere. can't go out on my own I can't be trusted. 
I look at my Grandchildren, I feel sad they are so happy their whole lives ahead of them, they don't know much about pain or heartache. but they will and we can’t stop it, I see my life as over, or the life that I once had, my memory is not what it was I know that for a fact

You see my brain is firing away but the signal is all wrong they tell my lies, unreliable, I don’t know what’s truth and what’s false. It’s easier to sit smile and nod, but inside you are crying screaming shouting you just want the old you back. I feel so alone.


Discreetly I find out how my mum is doing she doesn’t look so well; I am so worried about the rapid decline of her. Just lately she has been having episodes, she is waiting for a brain scan but it’s still another three weeks away, we don’t know what these are but for now we will call them dissociative episodes these are happening on average every three to four days.

They last for about 20 minutes she does not know that these are going to happen, they can be any time of day or night. She often travels back to various times in her life. Depending on the era to if she knows any of us. It’s very scary to see she want to be taken home try to tell her she is at home. But she won’t have it. She now wears a SOS identity band just in case she manages to get separated from us, when she come out of these, she has a headache and closes her eyes. She is devastated when told she has had another episode. She thinks she has a form of Alzheimer’s I really feel for her fear for her. Our job is to keep her safe no matter what, take every precaution we can, we have fitted an alarm on the door, she wears an ID bracelet.

We are looking to get her a watch that we can trace her if we get worried more so if she does not take her Mobile with her, it needs to have a panic button on the watch and possibly a phone or two-way speaker. We love our mum and just want the best for her. Perhaps we don’t 100% know what she is going through but we are trying.  Its very hard on all sides to know what or where to go for help.



You are my family and I love you all very much, I can only imagine what its like for you guys to watch your wife and your Mother slowly disappear, become a different person argue and cry so much, my brain tells me I am right and I get hurt that all seem to get angry at me, talk down to me treat me childlike even though to you I must act like it.

But to me you are not grasping the fact that most of the time my brain is okay and although I know and realise that you say and do what you do is because you love me.


But I wont you to stop for a second think about your life now, I’m going to take it all away from you. You can’t go to work you can’t go out with your mates. You live in pain, your brain sends Signals that don’t work you could harm yourself like fall or burn yourself. You could have one of your attacks. You are a prisoner in your own home and in your mind. Please understand me this is not my fault. Will I end up in an episode and not come out again. Will my brain start to misfire more will I be lost forever.


  • Adrian_Scope
    Adrian_Scope Posts: 8,572

    Scope community team

    That was a really powerful and emotive read @Connie00. Thank you for sharing.
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  • mrbuttons
    mrbuttons Member Posts: 221 Pioneering
    this is always a fascinating question. I spend 99% of my time alone but i no longer feel lonely, mainly because i dont like being around people i can go weeks without speaking to another human being esp if my carer cant come and i have turned down a stand in for some reason.

     My anxieties are related to social settings. I have always been comfortable with my own company. I used to feel lonely and wished i had more relationships esp around xmas and new years but that was just social pressures to be part of a larger crowd. I have the relationship i am happy with. We are not living in each others pockets but we are there for each other when needed. 

    I used to be crippled by loneliness and fear falling back into that. I think it could happen if my motability car was taken from me because i have the option of taking part in the world when and if i need to.without it my world would shrink to a single room 4walls and the tv.that is not living its existing, we all deserve better than that.

    Stay strong everyone.we are the real super heroes. :)
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Thank you for this @Connie00, very powerful! How are you doing today? :)

  • Connie00
    Connie00 Member Posts: 252 Pioneering
    Hello @Chloe_Scope
    thank you very much,  I try to write with others in mind, what it’s like both sides. Nothing is ever one sided
    I am doing very well thank you for asking.  
  • Connie00
    Connie00 Member Posts: 252 Pioneering
    Hello @mrbuttons

    I found your response, well to be honest I don't know how I found it. kind of Sad 
    I cant imagine not seeing another human being for weeks. but then as you say if your social settings might cause you anxieties I can understand it. But I am truly sorry that you have to face that, Christmas and New Year they are so overrated LOL Sometimes I think I would rather be in a corner than having to plaster a smile on me face and exchange pleasantries  with folk you know don't reciprocate it. (oh did I really say that how naughty of me)

    I'm also sad to read your fear of falling back into Loneliness, you must not let that happen you must always ensure that you can always take part in the World (oh how I like that saying) I'm going to use that just popping out Love to take part in the World.

    I think we are all Warriors in one way or another.

    thank you for your Input  B)

  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Glad to hear this @Connie00! It's a really good perspective to have! :)

  • pollyanna1052
    pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    We are all warriors Connie....I battle every day to smile, react and watch how my condition hurts my hubby of almost 48 years.
    Boudica rides!
  • Connie00
    Connie00 Member Posts: 252 Pioneering
    yeah it sucks. we are a disabled family that’s what we call ourselves. It’s just as hard for those looking on, seeing the pain that’s in their eyes cos they can’t help you. 


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