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On Hold - Page 5 - Carers UK Forum

On Hold

Share information, support and advice on all aspects of caring.
69 posts
No offence taken, Audrey, no worries about that pleeeeese!

Someone on here before has done exactly that and I wonder how they're fairing now and often think of them.

I just feel that my life is being wasted, which is an awful thing to say, but it's as if I'm on an island watching everyone else across the water on the mainland getting on and enjoying life.

The Aussie relatives land on our doorstep on 12th December, staying with us for Christmas, then............ then ................ they're all off to ............ NEW YORK for New Year celebrations for a week. Image Image Image Image Image

All because my sisterinlaw has 'always wanted to go to New York'............

I won't even tell you what I think or how I feel about that, cos I think you all know.
I can only echo what has been said so openly and eloquently already. For myself I'm finding it unbearable to watch my 18yr old daughter physically deteriorate before my eyes and have to keep up a front (I think we both do) when she speaks of her future. We can be honest and make a joke of things so I doesn't become too real but I see the hurt in her eyes when she sees her siblings getting on with what teenagers do. I'm just about coping but I can't imagine a lifetime of this stress and sorrow forever lurking over me like a big black cloud undermining the unconnected good things that happen.
((((hugs)))) to all xx
I think it's natural to feel like your life is on hold as a carer, isn't it?

Sometimes, when my mum has a spasm and can't move her legs as they've gone rigid or she starts shouting and taking her frustration out on my dad and I, or she can't remember what I've just said and I have to repeat it four or five times before it sinks in, or she falls and can't get up, I'll help her then slip away for half an hour and just cry and wish I was somewhere-anywhere -else. And then I'll pull myself together, go down and smile like everything's ok.

But then there are the times where I take her to town and we have something to eat, joke and smile and forget about everything bad for just a little while and in those times, I can't see myself anywhere else, because there isn't another place I would rather be.

There will be bad days, bad times, but there will be good days, moments that you wish to savour and it's by staying strong and making the most of those times that, I believe, will get you through.
Works for me. That and not beating myself up when I feel down
Audrey, I would like to think (or rather imagine) that bro in law and sis in law might like to give a hand with hubby's things???????????? I mean especially sis in law, how about her getting hubby in and out of the car or constantly having to pull his legs down or re-settle him in his wheelchair or empty his legbag......
I really think that she'd be aghast and run a mile.
Hubby has changed so much since they last saw him at our wedding 8 1/2 years ago and they really have no idea of how we go on with things now or how much harder it is. The last time we all went out for a meal, for instance, they just went ahead into the pub and left me and hubby outside to get on with things ourselves (well, myself). And, indeed, at our wedding, no family member helped.
Niece told me this afternoon, that at Christmas when they all come over, that she'll certainly come and help more, she has offered, but I mean she's only 1 extra which we can cope with easily. But when there's 4 extra, that's a different story. I think being with us on and off (since the beginning of June, when she arrived in UK), has given niece an insight into our life and the difficulties which we face and she tries to be helpful and accomodating where she can. But at least she says that she never expected there to be so much to do with hubby, all the time.
I'm certainly feeling that 'on hold' feeling today. One friend is in Miami with her boyfriend, another is in Corsica with her hubby and two georgeous baby twins. Today was ok in that my partner went on an adapted bike in the park and we went to the garden centre and were able to have some kind of lunch and I bought some beautiful bulbs for spring and we sat out the back in the sunshine and it was so lovely and sunny today. Still, I haven't been talked to all day, as he can't, I've tried a couple of new exercises with him and he's just ignored them like he doesn't want to get better and I've had to hoist him into bed and wipe his bits twice as well as make tea, clean up do meds and worry as he was a little bit sick tonight. So I am sitting here in the front room whilst he is watching something on the tele in the bedroom as I just need a little time to myself, though I feel a bit bad. Then I'll get into bed and probably be woken up several times in the night by him moaning or figiting or being wet and just not listening to a word I say these days it seems. I don't want this to be my life forever. I want to be normal.
Ohhhhh Dear. Looks like what we all need is Someone Somewhere to post something positive. Rewards of caring. Who can come up with some possible yet credible answers for us??
I'm planning to head off to New Zealand and Australia this winter with my caree for a few weeks, and we will be "bludging" off our relatives whilst down there. Oh, and his trip will be paid for by his Direct Payments, whilst I will pay my own way. Well, that's positive, isnt it? Image

I dont feel my life is on hold, I enjoy it to the full. Different yes, restricted, maybe, but no more restricted than when I was a 9-5 wage slave, probably less so in many ways. Swimming today, ski-ing tomorrow ... I've lost a stone, that's another positive.
Excalibur is fortunate. Not all of us can take our carers anywhere.

My Mum is 87, frail and in a wheelchair. I've managed to get her into our car a few times in the past, but with great difficulty and considerable drama. What I wouldn't give for a wheelchair accessible vehicle, but I'm looking at $40 - $50 thousand (Aussie dollars).

I know how you all feel about years lost, I've been a full time carer for her for over 20 years, and part time for 10 or 15 years before that. I went from an energetic 40 year old to a tired 62 year old overnight. No holidays in all that time, no weekends away, only a half day off a week and still coming home to get caught up on all the duties I didn't do that afternoon, not to mention cooking dinner which means separate meals because Mum's also gluten intolerant.

I remember once, about 15 years ago, she had to go to hospital for a few days, and on my way home at around 4pm I was thinking how nice it would be just to go to a big shopping centre and wander around, and how long it had been since I'd done anything on the spur of the moment like that. Then it suddenly occurred to me - hey, I COULD! I jumped back on the train and travelled to the next station, hopped off and spent a whole 2 hours just wandering, window shopping, sipping coffee, not worrying about having to be home at a certain time to perform certain duties. Most people would find it pathetic that to ME (and probably to most of us in here) that was like a holiday!

I have a cousin who lived with us for many years as a child, so she always refers to me as her big (by 2 years) sister, and my Mum as her 2nd Mum. These days, she and her husband spend 6 months of every year travelling in a campervan all over Australia and call in for the afternoon on the way to and from their travels. AND I RESENT HER LIKE HELL!!!!! I don't like myself much for it, I know it's illogical, I know it's her life and she can do with it as she pleases, but when she's here showing me endless photos of her and her husband by this beach, in those mountains, barbequeing dinner in the outback, I tend to get moody and say things like "perhaps you might consider actually doing something worthwhile with your life instead of just galavanting around the country for your own self indulgence". Her husband doesn't like me very much, lol, I wonder why. She looks all hurt and says she can't understand why I think her life is so useless, she's having a wonderful time, after all, and why wouldn't I want that for her, if I love her then wouldn't I want her to be happy? I just find it so insensitive that she doesn't even seem to realize that because her 2nd Mum is sitting in front of her in a wheelchair, that means I'm stuck here too, that I don't get to be self-indulgent, don't get to have holidays, don't get to enjoy myself whenever and however I feel like doing so. I feel like she's being insensitive by rubbing my nose in her freedoms, and while I know she's not doing it on purpose (she's actually a loving and caring person) she - like most people - just doesn't SEE. No doubt she just assumes I'm an old stick-in-the-mud and have turned into a nasty old battle-axe as well.

Big rave. So sorry. Cousin and her hubby are due here in 2 weeks and I'm already dreading it. Image
I find it quite hard when people ask me if DD is married yet, what she's doing, where does she lives etc.

I also feel seriously sad when girls she was with at nursery school/lower primary (before her special needs were too evident) are out with their babies and partners or hubbies.

I know I am more fortunate that many others on here who have to contend with incontinence, disturbed sleep, lifting etc. You people deserve medals you truly do.
I've only just come accross this post sorry.

My life is totally on hold. I sit in Mum's bedroom for 18 hours most days, she cannot talk to me or do anything at all for herself. When I pay a carer to sit with her, I am rushing around for Mum and other people.
My Brother has been here this weekend (for football) and I managed to go out on Friday night at 10:30pm and had a great laugh. But then I come home and have to change Mum and her sheets and get about 4 hours sleep. My Brother on the other hand has not done anything for Mum and had a full night's sleep, enjoyed 10 hours out with his mates at the football. He has 4 holidays a year and can accept all invitations to go anywhere he wants to. I can't even remember the last time I had a day off. The rest of my family don't help either and they just get on with their lives too.

If I wanted to change my life, I could and I could put my Mum into a home, but that will be a change of life, but not a better one.

I just with that I had someone to share the caring with me, that would make a massive difference.
My Dad is in a Home. My sister works and sees him once every two or three weeks, my brother sees him about twice a year. They both live within 50 miles.I go up once a week,sometimes more, sometimes less. Dad is 82, and when I am at my worst crying for Rhys, I don;t go up there. He suffers knowing that his child(and even though I am 48, I am still his child)suffers.
I wish that as a Carer. the last year, I could have been cared for sometimes. That someone would put a cuppa in front of me without asking,or wash the clothes without me having to think about them.Even take over Ben's insulin and blood testing needs, and take him to the Drs and the hospital for his appointments. Or took him to his Christmas bazaar with a smile on their face for his sake.
I cannot mourn Rhys, without having time off caring for me to do so. And for me to be a good Carer, wife, mother, grandmother and everything else we Carers have to be, I need time to mourn. The death of my son is like nothing else I have ever gone though,but I have not had one day where I could sit down and just cry.I feel like the worst mother in the world because I can't be the person I need to be for Ben and Katie, but also because I couldn't save Rhys.I keep so much inside, because Ben gets distressed to see me unhappy.
I love my husband and Ben so much.I cannot give up my caring role. Katie feels guilty as she would like to help out more,but I try then to hide it from her, as she should just be enjoying her little boy.(and he is my stress relief, a reason for us all to smile again).
I do get resentful of my sister and brother and the lives they lead.When Dad was living at home, 10 miles from me,and my brother lived in the same town as him, it was still me that would do the running round for him.
69 posts