MPN Voice
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FATIGUE AND DDISABLED DAUGHTER

Went to GP today crying my eyes out because I can no longer cope with this fatigue Whenever she does visit it's a day out for herand finding any sort of carer is. Very difficult. My daughter has learning disabilities - she's 58 and was planning to come to see me on Saturday. She's been having problems accepting my health situation but I told her today that I was 't well enough, although when she does come it's a day out for her not to help me. I have just spoken to her and she is very upset, saying she doesn't want to come because she doesn't like seeing me like this and wants things to be the way they were when we used to go out and have fun. I asked if she would be prepared to come and help me because I need help but she really can't handle the situation. I said we need to have a proper talk and cry together but am not sure if she can deal with it. The only advice my GP could give is for me to go into a residential home which I can't afford. It's breaking my heart knowing how hard it is for her. She wants her old mum back but that isn't possible. I am crumbling here trying to cope with u relenting fatigue and infections so don't know how to handle this. Help please.

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Dear Garden. What a difficult situation you have. I live in the US but perhaps Maz or someone in your country could give you helpful advice. I’m sure your heart must be breaking for many reasons. Do you have any relatives or friends who could help you or find out what help is available? I’m sorry I can’t be more helpful. Katie

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so sad and difficult for u. Hope yr daughter will get more accustomed to the situation?

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Dear Garden,

Your daughter is 58, this means you must be nearly 80 years old and you must have worked hard all your life being responsible for her. Give yourself some credit, unfortunately your daughter is not able to understand the changing situation. She cannot expect to have fun with you for ever, eventually she needs to take on the job of looking after you, but she is not mentally capable of adjusting. Please do not at least feel guilty about this. It is not all down to MPN,

maybe your body has just had enough and is telling you to slow down.

Searcher56

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I'm very sorry to hear that things are so difficult for you. Would you consider asking for professional help? If so, I suggest that you contact your local Social Services Department. It's too much for you to try to cope with all this on your own.

With all good wishes,

Anne

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Hi Mary,

you are clearly suffering. I don’t know what the answer is for your situation. You sound lonely!

Isn’t there some sort of social services which could offer help in the first instance? I’m really not sure how these things work. Your GP should be informing you of what is available in your area to remain independent other than just offering residential care.

Mary xx

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Hi Mary

It must be so hard trying to explain to your daughter how you feel. Does she have someone close to her you could bring onboard to help explain how you are feeling? You mentioned in another post you have someone who visits from time to time -would they be willing to lend a hand the day your daughter visits? Perhaps changing the type of day you have with her may be an answer - a day at home with a special afternoon tea - you could buy the naughty but nice cakes and involve your daughter in preparing the little sandwiches that accompany them. Your fatigue may rule this out and you mustn’t feel bad about it - we all seem to get it in various degrees and I have learnt the hard way that you can’t ignore it.

Take care Mary and listen to your body - you took the first brave step in telling your daughter you were unwell and hopefully she’ll get used to your new situation and come to accept her mum needs to take things at a steadier pace.

All the best

Gill xx

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Dear Mary, how about, you and your daughter, each having and pining up a small poster/ large leaflet on Mpns and fatigue. Then you can both go back to it time and time again to reasure symptoms are genuine and what can be done to help. This can be done together when she is visiting. Also how about getting little starter kits of different types of hobbies. They are designed for success, so you will achieve every time. It might seem child like but it can be good fun. You also get a sense of achievement.

My daughter daughter who is in her thirties , set up a craft and crumpet group. What! You might say. Has she given up on Life? Not at all. She works hard,plays hard, but every few months for a couple of hours a group of about six, sit round a table and try their hand at something new, while having a good natter and a laugh. It's always crumpets, so as not to get bogged down with the entertainment thing. I have infiltrated this a couple of times and can see everyone enjoys it.

Anyway it's just a suggestion. Also I should think Maz has those posters, if you haven't got any. Take care of yourself, regards Carole ☺x

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Broke my heart reading this. Do you have any family who you can turn to? Are you willing to contact the MacMillan cancer society. They have councillors who could possibly help. You have to look after yourself now. Your daughter is in a place where she is given all the care she needs yet here you are suffering. Talk to someone please, even a close friend or someone from Age Concern who may be able to come up with a solution. Have you applied for carers allowance to enable you to get some help. Contact Social Services and they can put in a care plan to help you. Hope you get something sorted Hun, you certainly can't go on the way you are xxx

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Broke my heart too, so sorry to hear you’re under so much pressure which in turn makes fatigue and everything else worse. As others have said you have to put yourself first for a change as you are no use to anyone if exhausted.

It’s so hard I know, my mum had dementia when I was struggling at first and ended up in a care home which she didn’t take kindly too but, in tears like you, I had to stick with that decision because I couldn’t cope any more. This is the start of the way forward for you now you’ve been to your GP.

Your daughter has to understand that a day out together is to benefit both of you and perhaps during that time, a rest of some kind must be allowed, whether it be a seat with feet up or a forty winks. The rest of the time should be at your pace and maybe just a couple of hours instead of a whole day. Your daughter has to be helped to realise she is being selfish, you love her dearly still but you are not fit to carry on as before.

As others have suggested maybe McMillan or social work can offer some respite. Please don’t consume yourself with guilt. You’ve obviously done your bit, if your daughter has reached 58 with difficulties, now you need help too. You are amazing.xx kind regards Aime 😺😺 Loads of E hugs.xx

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Dear garden 987,

You need help. I so wish I was near you and able to give you a hug. I have ET and I’m well aware of the fatigue. My mum is 86 and has Alzheimer’s. Just over 1 year ago I applied and got attendance allowance for her. I seems she could have got it years earlier.

Sounds to me you need to apply for this for yourself.

I took her to AGE UK. They were brilliant and filled out the forms on our behalf.

Please pleAse phone them for support. They will come out to you if you are housebound. Although you will be seen quicker if you visit their office.

Beware , from the time you get the forms there is a time scale.

You are ill if you are not claiming this allowance I beg you to do so.

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Dear Garden 987,

So sorry that you are having such a difficult time. I'm on the other side of the world in NZ so can't offer the practical advice that others closer to you have done, but I just wanted to say I'm thinking of you. Kind Thoughts and Hugs, Peter

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