I've come to the conclusion - I'm a useless carer

[Scarlett123]

Why do I feel that my efforts are never good enough? Why am I so irritated by the "we'll be in touch soon, now mind you take care of yourself" attitude by Social Services, the GP's surgery, the chemist who denied they had John's repeat prescription, but had it all along?

Like GrandmaP, I too haven't posted on here for a while, because I didn't like the person I seem to have become. I found my normal sympathetic feelings towards others had dissipated, and kept thinking "well they haven't got anything major to cope with".

Then those that evidently have far more to cope with than I do, elicited feelings of such inadequacy in me, that I dislike myself so much. John has become more and more difficult, day after day, and after 10 years of caring, I'm so fed up with it all.

Two things have made this week so bad. The first was when John had his twice-weekly "carer" bath. I always take the opportunity to have an hour's sleep in my own bed. For the last 6 months I have slept on a 2 seater settee, because it's opposite the kitchen door, and when the light goes on, I can stop John doing nocturnal cooking.

When the carer left, John said he was going for a sleep. We went into his bedroom, to find the curtains half hanging down, and the pull cords entangled. I asked John what had happened. No, I shouted "what have you done" and John said "it was you!!".

I solved the problem by cutting the cords, but in the early hours I was woken by noise, next door in J's room (we live in a bungalow) and found him trying to climb on the computer chair, saying "I'm gonna fix the curtains".

I stopped him, took the chair in with me, and was then woken umpteen times in the night. Then last night, I went to bed, on the settee, at 10.30, as I was so tired. I'd just got myself comfortable when J started calling me.

It transpired we had a power cut, which lasted for 4 hours, so I had to take John to the toilet by torchlight, and then sleep on the floor by the front door, as the sensor wasn't working, due to the power cut.

And all I could feel was intense irritation, frustration, and a terrible sadness for what our lives have become. And I could strangle the people who say "Have a nice Easter!". All it means to me is 4 long difficult days, because the Day Centre will be shut.

Why can't I be more patient? Why am I such a failure? Why can't I be a better carer? Why am I such a pathetic whining moaner?

 

[pippop1]

Because you are a human being and not a saint.

 

[Ash148]

Because you're living with the impossible and the relentless and there is a mountain to climb every day. You're still climbing - you deserve a medal for that!

 

[Izzy]

You are not a pathetic anything. You are talking about reality. Your reality. I hope it's helped in the tiniest way to let off steam here. x


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[Noorza]

You are not a failure, you are a heroine, you are caring when many couldn't, I couldn't, I don't even live with mum and the strain is now telling, the constant calls, the falls, the needs, the inability to plan, to get my career re started.

Those who live with dementia 24/7 are hero's/heroines to me, those who find their loved ones are best cared for in homes are hero's/heroines to me as they recognise that is where their loved ones needs are best met.

You are sacrificing sleep, that is one of the most basic human needs in order to care. You are not useless. Please recognise that you are doing what most never have to face and people like me couldn't do. I could not live with a person who has dementia 24/7 I think you are amazing.

 

[lin1]

Why can't I be more patient? Why am I such a failure? Why can't I be a better carer? Why am I such a pathetic whining moaner?

You are none of the above!!
WHY
Because you have far too much to cope with!
Because you are trying to cope with the impossible !
Have far too little UNBROKEN sleep every night !
You are exhausted and IMO on the brink of carer breakdown !
You are HUMAN and NOT a saint and this VILE disease IMO would try the patience of a saint
You are not receiving enough help and no longer have the strength to fight for it.

Given a few more minutes I could probably add to my list.
but I am sure you get my drift.

Sorry I have not re read any of your posts, so forgive me if this is not possible, I think you need someone to help you fight the system , so you get more of the right kind of support.

I wish this could be a real one

 

[Noorza]

I can only agree wholeheartedly with Lin.

 

[lu]

Hi Scarlet....what human would not have these feelings? I have been there when I feel so inadequate, so alone when words of comfort doesn't seem to do the trick, when I just wish it would all be over, when I hope something else takes him and not Alzheimer's, and yes when the problems are too much for me and I get cross and impatient. Oh, yes, and I find myself getting in that pity parade. Kinda tough isn't it to face these things without being able to discuss with him the every day problems you used to face together. Just don't be so hard on yourself.....all you can do is to do your best, laying that head on the pillow at night and saying "I did it today and I can do it tomorrow" . Chin up, you're doing great.

 

[Ann Mac]

When I've read your posts, the absolutely last thing to cross my mind would be that you are a 'useless carer' - you're not, hun, what you are is in a situation that would exhaust a saint!

I have fingers and toes crossed that you can find a way to get a LOT more help - there isn't a person on the planet who could cope any better, without help, in the situation you are in xxxxx

 

[LYN T]

Hi Scarlet....what human would not have these feelings? I have been there when I feel so inadequate, so alone when words of comfort doesn't seem to do the trick, when I just wish it would all be over, when I hope something else takes him and not Alzheimer's, and yes when the problems are too much for me and I get cross and impatient. Oh, yes, and I find myself getting in that pity parade. Kinda tough isn't it to face these things without being able to discuss with him the every day problems you used to face together. Just don't be so hard on yourself.....all you can do is to do your best, laying that head on the pillow at night and saying "I did it today and I can do it tomorrow" . Chin up, you're doing great.

Scarlett- you could also say 'I did it today and I can't do it tomorrow' and who would blame you. Crikey Scarlett, sleeping on a 2 seater sofa, sleeping in front of a door, stopping nocturnal cooking you have more than enough on your plate without beating yourself up over being 'a useless carer'. You are not useless. You have been looking after John for 10 years and that's a long time. I understand completely you not liking Easter; Pete used to go to day care Mon-Thurs afternoons and the normal 3 day break was bad enough, throw in another day and I would be so stressed and miserable.

I also used to feel irritation (and sometimes murderous) towards SS's/chemists/GP's etc-come to think of it I still do. And hearing about other people's problems-well I just didn't have any time for them. I used to think 'get on and deal with it'

I really don't know what to say to offer you any comfort.

Have you thought about respite? Surely something has to give before you crack up.

Sorry Scarlett-try to keep posting if you can, you are not on your own.

Take care

Lyn T

 

[jaymor]

I know how you feel though I know that is of little help to you.

We had just gone through our third crisis in seven weeks and once again we were on our own again. The CPN had gone, the police had gone, the out of hours doctor had gone and we were waiting for a crisis team visit. We had tried and failed to get a crisis team. We were told by them to ring the out of hours doctor or call the police. In sheer desperation I finally did both. The police found one and we waited and waited. The police rang twice to make sure I was ok, no one else rang to make sure. the crisis team arrived in the early hours, said it should never have got to this point and promised action the next day. We never saw them again but things did start to move and my husband was given a place in an assessment unit that the week before we had been told by his consultant there were 19 people waiting for a place there.

We are let down badly by the professionals, yes they are overworked and understaffed but we are expected to carry on, accept what is thrown at us and to get up and carry on.

What you are going through is awful, I can only offer you support through the forum which might be a little comfort but really of no use. One thing though is you are not useless, you are helping your husband to have some kind of a life while he battles with this horrid disease. Where would he be without your constant help? he would be in a far darker place than he is now. You really are doing great, never, never underestimate the hard work you are doing.

Take care,

Jay

 

[pamann]

Hello scarlett123
I don't think l can add much to what has been said to you, where we get the strengh to carry on l don't know, but we do ! I think you need to consider a CH if you have a breakdown then who is going to look after you, my thoughts are with you at this very difficult time.


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[malomm]

Hello Scarlett 123, I have far less to cope with than you obviously do, and yet I often have those feelings too. You are not inadequate or useless or any of those things you think you are when feeling depressed. After 10 years no wonder you are feeling down. I've been 'on the job ' for 5, and if we make it to 10 I'll be the one who needs taking into care. As I understand it in the UK you should have a fairly comprehensive state help system; so try and take as much advantage of that as possible.
all the best,
malomm

 

[CollegeGirl]

Scarlett, I can't look after my mam for even an afternoon, never mind 24/7 like you are doing for your husband. I think I'm the definition of a useless carer, not you.

Oh I wish I could say something that would help.

xxx

 

[Scarlett123]

Thank you all so much for your kind words. Where would we all be without TP? I can recognise what is happening to me - I'm in a vortex of exhaustion, frustration and aggravation.

I am supposed to be having a knee operation soon, and was told in February that it would be in "3 - 4 months". Having (after yet another battle) been awarded 4 weeks' respite for John by Social Services, though they'd only be paying a weeny fraction of it, I wanted to get something booked. I also wanted the SS's "approval" so that if I couldn't get somewhere, I knew they had someone dedicated to ringing around and getting a placement.

In my mind, I considered that the £4000-ish I'd be paying would be worth it, for the rest that I would have, and I was actually ridiculously looking forward to my operation, as I knew my life would be easier for that 4 weeks. But I needed a date.

After leaving numerous answerphone messages and sending emails to PALS, I eventually made contact with them and was then shocked to hear my op date now would be in "about a year".

I tried explaining my predicament, and started crying, only to be told "now dear, don't upset yourself"!!! That was a couple of weeks ago, and I decided I'd go in person to PALS, and anyone else available, after Easter, to try to plead my case.

I just feel I've had too many straws put on my camel-like back (well, I've definitely got the hump ) and I can't cope. My aunt used to say "God makes the back to bear the burden", and I figured all carers had a spine of steel. I know if I was advising someone else, I'd say all the lovely things you've all said to me, but I honestly don't deserve them.

 

[Spamar]

Scarlet, like other posters, I am not doing half that you are and I say all the same things about me! please, please don't beat yourself up, you are doing your very best.
A suggestion, could you talk to your surgeon? Many are conversant with carer problems and he may get a date for you sooner rather than later. Emphasize that your caring role will be much easier for you after your op when everything's healed, also the problems in that you have to book care, which has to be done way in advance, before your op and it would be much better for you to get it all sorted well in advance ( but not a year!)
Good luck!

 

[Scarlett123]

Scarlet, like other posters, I am not doing half that you are and I say all the same things about me! please, please don't beat yourself up, you are doing your very best.
A suggestion, could you talk to your surgeon? Many are conversant with carer problems and he may get a date for you sooner rather than later. Emphasize that your caring role will be much easier for you after your op when everything's healed, also the problems in that you have to book care, which has to be done way in advance, before your op and it would be much better for you to get it all sorted well in advance ( but not a year!)
Good luck!

Thank you so much for your kind post, it really helps to know the understanding you get when you post on TP. Nobody suggests you pull yourself together, nobody thinks you're exaggerating, and kindness shines from every post.

Could I talk to my surgeon? Methinks I would have more chance of getting an audience with the Pope, or Simon Cowell saying I'm the winner of Britain's Got Talent!

I'm going to the hospital next week, and will endeavour to speak to someone, who will no doubt check with their Supervisor, who will check with their Line Manager, who will check with Uncle Tom Cobley, who will pass out in shock because I've requested to speak to my surgeon.

"My surgeon" gives the impression that we know each other. Alas, each time I've been to the hospital, I've seen someone different. Last year I had an operation on my foot. I had to laugh when I went to have the final checkup, because the surgeon said "if you have any problems, don't hesitate to pop in and let us know". This gave the impression that I could actually do that!

Nobody can see anybody, except in A & E, unless they have a referral letter from their GP, who will then contact the hospital, who will eventually contact the patient with an appointment in 6 months.

But I shall just pray for saint-like patience over Easter, and, more than anything else, that I could have a few hours uninterrupted sleep.

 

[blandford516]

Hi Scarlet123,

You really are amazing you are doing far more than I could . I did try with mum but had to admit I could not cope and feel a failure because now she is in a home ,but she is safe and sort of happy . You are going through all this and still have a sense of humour !! I know the humour is just a front like all of us it keeps us going ! wish you all the best and I am not going to wish you Happy Easter because statements like that are usually from people who have no comprehension of what it is like to care for someone with Dementia . I would say try and catch up on your sleep as best you can and ask for help if you need it . You are not a failure rubbish carer at all . You are there because you care and you are doing your very best . No one could ask for more .
Best Wishes x

 

[bilslin]

Hi scarlett123 I thinking your doing a great job, I care for my mum, don't live under the same roof, just across the road, but I can get into bed at night a try to get some sleep. Wish I could say more but everyone's said it all. Hopefully your get your knee sorted out soon and get a break that sounds like you deserve. Sending you hugs. thank goodness for TP. Linda xx your doing a grand job

 

[sistermillicent]

Scarlett, it is worth trying to get in touch with your surgeon's secretary - ring the hospital and don't explain who you are, just ask to be put through to Mr....'s secretary then explain your position and ask if he can ring you back. My colleague did this and it worked. If that doesn't work write him a letter.