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Lonely and isolated carer and daughter - Carers UK Forum

Lonely and isolated carer and daughter

Tell us a bit about yourself here.
Hello all carers out there, at last I have found an outlet whereby I can express my feelings and share with other carers.
I have been a carer for my poor daughter who is 20 for 5 years now. Before this I cared for my dear Mother who passed away a couple of months before my daughter became ill.
My daughter has severe M.E. and fibromyalgia as a result of meningitis 5 years ago. I care for her alone 24hours a day 7 days a week and have to deal with an enormous amount of other issues on top of this.
I find life very, very hard, especially seeing my beautiful daughter suffer so every day but also having to cope with the rejection and abandonment of our family (to put it mildly).
I wondered whether other carers experience this lack of care and help from family and friends when they are very aware of the terrible predicament carers and their cared-fors are in?
I am struggling and feel very alone. My last bit of energy both physical and emotional I use for my daughter, it seems cruel that we can be left to suffer alone.
Hi Soozzze,

Welcome to forum where you will find a great bunch of people who can offer you support when needed.
We all have so many different experiences to share so hopefully you will feel right at home.

Look forward to getting to know you.

Rosemary
Hi there soozzze!

I live in Wiltshire, just a couple of miles from the Somerset border. My lot as a carer is currently nowhere near as tough as yours, I am effectively housekeeper/cook/gardener for my Dad. This is likely to get more demanding fairly soon, I think - he has FSH Dystrophy and is 81.

Try not to see your family's lack of attention as rejection or abandonment - it may appear to you that it must be impossible for them not to know how tough things are for you, but I really do not think anyone who has not been a carer can really grasp how hard it can be.

There are those who willfully refuse to see, of course, but what kind of help would they be capable of anyway? If you try to tell them what it is like, they switch off, nothing negative is allowed past their eyes or ears to their consciousness - so you would not leave your beloved daughter in their care!

There is another kind of person who can be useful, if you can spot them - some people are frightened you will be offended if they offer help, because they think you will believe they are suggesting you cannot cope. This kind of person needs to be given a direct request, e.g. 'Please could you pick up these items for me when you next go shopping?', 'Drop in for a cuppa on Tuesday, I would love to see you.'

Have you managed to claim the allowances you are eligible for? Have you had a carers' assessment? There are those around here who can give you pointers on these, if needed - someone else is sure to be along soon.
I have only just joined the forum myself. I understand what you mean about family and firends. Recently I think that perhaps I ought to take it as a compliment, as I obviously manage to look as though I cope, even when I am falling apart.

Last week, I felt very hurt, as my Dad gave my nephew £10 pocket money,"as he doesn't have much of a life". The money isn't particularly the point, but what is wrong with my children, who see him often, who live near enough to do errands for him, etc. Even my son with Downs Syndrome goes up there once a week with his support worker, and he won't ever get more than a basic benefit which has to pay for all his needs.

I have had a wonderful neighbour over the years. I hadn't realised how much of a support she was until she recently had a stroke, and had to go into hospital. Even when my family haven't been there, she has.

My sister always tells me she knows how I feel, as she gets stressed too. She has one child, now 17, who is independent. A couple of times when she has supported me, I have given her money for expenses, and she has never turned it down, even when she knows we have to rely on benefits and she is working fulltime.

I would still rather be me with the difficulties in my family, than my sister, or my brother , an accountant, who never takes his children to visit my Dad nowm unless it is a week or two before Christmas or birthday!

From Lazydaisy
Welcome to the site!

you wont feel lonely on here,,, i am quite new to the site and every one is lovely.
Hi Rosemary... I so understand. I think all those people who have never had to be a carer to a loved one should be made to give it a go. My poor old Mum (90) is in a Care Home now because, through the lack of simple help from a large family, I just needed a break now and then, after 5 years I couldn't cope. I am sure people just don't understand the emotional needs of carers. How it makes you feel when you can't cope. How frightened and isolated you feel - having the well-being and lives of others totally reliant on you. Why is it so wrong to want to care for the people you love? Sometimes you are treated like you are doing something wrong! My heart goes out to you. I know what its like - it lives with you every moment of your life. I suppose you must remember, you are a wonderful person, doing a wonderful job, and are obviously a caring and strong person. The problem isnt with you, its with the system. It is just accepted by society now that putting the responsiblity of caring for loved ones should somehow be done by outsiders. I think its a UK problem mainly. We dont seem to want the whole family unit any more. I sometimes think its me, that there is something wrong with me to love my family so strongly - I have been told its unnatural to love my mother so much. That makes me feel very sad, that just because a member of your family is old or disabled, ill through a cruel stroke of fate, or somehow socially unacceptable, you are expected to farm them off out to someone else, just because its the way things are normally done. Your family is the most precious thing you will ever have. You have done so well to care for your Mum and now your daughter. Please dont give up like I had to, try to find someone to help. I suppose you just get so worn out trying, it somehow seems easier to struggle on alone. I'm glad I had my eldest sister though - I am so lucky with her - she persuaded me to go to my GP and get help (I had a breakdown) and my partner was threatening to leave me (after 21 years together). Mum had to go into a home (which nearly killed me with grief), but I had to get myself sorted out as she was totally reliant on me and could have been at risk. Please try and get some help for yourself, you need it to be able to care for your daughter. I joined a local Carers Network via the radio which helped me, I talked to my GP, try and find a carers group, keep posting to this site. Do you have a Crossroads near you? Please keep talking to people. As you can see, I am still doing it, it never ends, you try and find a solution every day. Wouldn't it be a wonderful world if we could somehow gather all the carers together so we could help each other? I suppose the only way we can is by remembering there is someone out there who is sharing the same feelings, its like a brother and sisterhood of carers! Image I send my thoughts and best wishes to you.
Hi Soozzee

Welcome to the forum, I promise you won't feel lonely on here, there's always someone around to offer advice or just be a friendly ear when you need to talk.

I'm just entering my 21st year of caring for my Mum, I can totally understand the family angle - my sister hasn't lifted a finger to help with Mum until a couple of weeks ago when Mum was rushed into hospital and I needed someone to sit with her while I went home for a few things, she's actually rung every day since then although she has started offering me 'advice' which I can well do without but I just ignore that Image

Look forward to chatting with you soon.

Paula xx
Hi Pat,
I'm really sorry it took me so long to reply to your very sweet and kind message.
Thank you so much for all your understanding, think that is one of the key things in all of this, being understood and taken seriosly.
I am sorry to hear about your situation and thje difficulties you faced, I am not surprised you had a breakdown, the strain you were under, I hope you are much beter now. it's terrible to be judged, like you say for caring so much for somebody, I think family feel threatened because you can feel that special love when they can't, it reminds them of thier weaknesses (this is one of the conclusions i came to!).
There have been so many times I have felt I was cracking when numerous of the issues and problmes surrounding my daughter, our vulnerable living situation(threat of repossession), divorce, betrayal etc have all come to me at once and at the same time my daughter has been feeling particvularly bad and needing me 100% and I have felt unwell...it's a terribly frightening feeling like you are spinning out of control. I have to constantly take stock of myslelf and tell myself I will get through today, I won't let my daughter down, I won't let anyone else hurt her.
I agree, wouldn;t it be nice if all the carers could get together and support each other!
I do belong to a carers support group which is held for 1 1/2 hours each month. Most are exc-arers but it is still a bit of an outlet although I go home and that is it for another month.
Thank you again Pat, I do hope your life is much better now and the grief you feel (understandably) has lessened.
Take care, best wishes,
Soozzze

Hi Rosemary... I so understand. I think all those people who have never had to be a carer to a loved one should be made to give it a go. My poor old Mum (90) is in a Care Home now because, through the lack of simple help from a large family, I just needed a break now and then, after 5 years I couldn't cope. I am sure people just don't understand the emotional needs of carers. How it makes you feel when you can't cope. How frightened and isolated you feel - having the well-being and lives of others totally reliant on you. Why is it so wrong to want to care for the people you love? Sometimes you are treated like you are doing something wrong! My heart goes out to you. I know what its like - it lives with you every moment of your life. I suppose you must remember, you are a wonderful person, doing a wonderful job, and are obviously a caring and strong person. The problem isnt with you, its with the system. It is just accepted by society now that putting the responsiblity of caring for loved ones should somehow be done by outsiders. I think its a UK problem mainly. We dont seem to want the whole family unit any more. I sometimes think its me, that there is something wrong with me to love my family so strongly - I have been told its unnatural to love my mother so much. That makes me feel very sad, that just because a member of your family is old or disabled, ill through a cruel stroke of fate, or somehow socially unacceptable, you are expected to farm them off out to someone else, just because its the way things are normally done. Your family is the most precious thing you will ever have. You have done so well to care for your Mum and now your daughter. Please dont give up like I had to, try to find someone to help. I suppose you just get so worn out trying, it somehow seems easier to struggle on alone. I'm glad I had my eldest sister though - I am so lucky with her - she persuaded me to go to my GP and get help (I had a breakdown) and my partner was threatening to leave me (after 21 years together). Mum had to go into a home (which nearly killed me with grief), but I had to get myself sorted out as she was totally reliant on me and could have been at risk. Please try and get some help for yourself, you need it to be able to care for your daughter. I joined a local Carers Network via the radio which helped me, I talked to my GP, try and find a carers group, keep posting to this site. Do you have a Crossroads near you? Please keep talking to people. As you can see, I am still doing it, it never ends, you try and find a solution every day. Wouldn't it be a wonderful world if we could somehow gather all the carers together so we could help each other? I suppose the only way we can is by remembering there is someone out there who is sharing the same feelings, its like a brother and sisterhood of carers! Image I send my thoughts and best wishes to you.