I think I just need somewhere to let off steam, and write how I feel, but if you have felt similar or want to reply thats fine with me. I just feel I’ve kept going and going, on adrenalin for at least 3 years, my caring roles have been very important to me, they have given me so much. I could say I loved caring for my mum, when she needed me in her last years, and now my dad, and partner. But probably I just stomach the difficulties too, and don’t complain about them. Now I feel exhausted, and can’t keep it up, and I sometimes really mind not having more of a life of my own. I need time off, but its hard not to feel selfish and guilty. I have been pleased and amazed to have stamina, but now its letting me down, and my heart body and soul somehow need recharging. I don’t like that I get irritable with the people I care for when I am this tired, but it feels mean to tell them how I feel. I think I might feel better just having got this off my chest here, where you are all carers!
Hi Dishrag, welcome to the forum.
Yes, I know that feeling only too well! I call it the Clapped Out Carer Stage, when you’ve done too much for too long for too many people.
Do NOT ignore the messages your body is sending you. It’s pleading for rest and relaxation, and YOU are the only one that can arrange that.
Tell us a bit more about who you are currently caring for, age, disability, relationship?
A bit more about you, age, and do you live with your carer?
When did your caree last have a Needs Assessment from Social Services?
When did you last have a Carers Assessment from them?
I’ll be back later.
Dear Bowling Bun
Thank you!
My partner has secondary progressive MS. He likes to do things himself, but after 20 years since diagnosis that’s very gradually getting less and less possible. Interestingly it is just since for the first time we have a few hours a week help for him at home, when Im at work part time, that I feel collapsed! My dad lives about 1 1/2-2hours away. I organise all his care etc and spend one day a week with him. He is over 90, and needs 24 hr care … does this answer ?
Put simply, you are doing too much!
Where amongst all this is there any time for you?! How old are you?
I’m now 67 and have had various operations, my energy level has nose dived in recent years.
As your husband and dad need more and more as they get older, you have progressively less energy to deal with it all.
Work is possibly an escape?
Is it realistic for dad still to be living alone at 90? 4 hours driving on top of being with him all day is really two working days in itself!
You are being very supportive, and yes you sound as if you’ve been there. I am nearly 64 now, and for the first time my own health is beginning to fail. I have rheumatoid arthritis, which has started to affect a hip, and so I’m on pain killers etc. I have always been able to rely on my health until now. I don’t like having to do less for my dad, and letting others take over more, but I’m having to. You are right I am doing too much, its just hard to adjust to being older etc myself I guess
Hi dishrag it sounds like u av done a brilliant job supporting the people u love but u matter as well n u av got 2 keep well 2 carry on wot u r doing I agree with bowling bun that u need those assessments they may help u I’m a Carer 4 my mom n I know it’s a very hard job I wish u all the best xx
Until very recently, you would have retired at 60, a “pensioner” yourself.
You have nothing to feel guilty about. Dad is now paying the price for a long life, disability and infirmity at his great age are normal, and so is his need for increasing amounts of care. He needs “someone” to care for him but it does NOT have to be you!
Nothing will change unless you make it change. He probably doesn’t realise how much you are doing for him - another trait of old age too, I’m afraid. So start by thinking about what you do that someone else could do just as well, cleaning, cooking, shopping etc.
Please feel proud of all you have done and are doing, not guilty about what you can’t do. You sound like a lovely person. Please look after yourself too, it is really important. If someone is doing the physical care for Dad it frees up sometime to spend “nice” time with him, but this doesn’t have to be a whole day a week at expense of time to yourself. Could you claw back half a day for yourself to do something that will unwind and relax you? Swimming might be good for your Rheumatoid Arthritis? Or just a regular coffee with a friend?
Thank you all for such helpful replies. I have been thinking about them. I lost my previous reply, so trying again. I love the title ‘Clapped out Carer Syndrome’, which definitely has been me.
I am trying to take your advice and thinking of more things that others could do instead of me. It is hard to get used to, and I still find myself doing things I could ask paid carers etc to do, but its a start.
Yes work is saving me from being even more overtaken by exhausting family caring, but you’re right I do need to do something else thats for me. I do have ideas about what I’d like to do, but I have found it hard not to cancel my things.
And yes the long wait from 60 to 66yrs to state pension feels tough.
I did have a carers assessment several years ago. It was very helpful then, but even though things have changed a lot, I haven’t bothered asking for another one, because I don’t know what good it would do me? Some very nice supportive people at the carers centre used to do them, but now they are meant to be done by overworked social workers who seem keen not to do them!
ps yes swimming would be good…
There is a LEGAL DUTY for Social Services to undertake a Carers Assessment when asked. They can’t just not do them!
Write, and send the letter by Recorded Delivery, and keep the post office slip with a copy of your letter. Explain how long it is since the last one was done and you need another asap.
__
Under the Care Act you are entitled to a carer’s assessment where you appear to have needs, this matches the rights to an assessment of the person being cared for. … The person you care for is entitled to a ‘needs assessment’ if they appear to have needs for care and support.
hey Dishrag - (love the name by the way, it is often how I have felt)
Glad you are thinking this through. Please find that time for yourself. It is vital for your own health. If it feels daunting, start small and build up. Half an hour this week sitting in a coffee shop on your own with a magazine or listening to some music not thinking about caring. When things were really bad I used to sit in my car before the school run and eat sweets for 20 minutes as was the only place that kids, elderly parents, cat and dog and all my other responsibilities couldn’t reach me!! Things were terrible at this point, but they are better now with help from the forum. I now have a part time job and do all sorts of indulgent things like meet friends for a coffee and have my hair cut (it had been 18 months between appointments at one point when things were really bad). I really hope things can get better for you xx
I too used to make plans and then cancel them when carees had a problem.
Now some things are “NON NEGOTIABLE” especially holidays abroad so I can escape everything and be the real me. I was once all packed to go to Crete, an hour before I left, suitcases ready in the conservatory for collection, hair and nails done, showered, travel clothes on. House tidy, dishwasher empty, nothing on TV, so quite by chance I opened my lap top. To my horror I discovered that the care agency hadn’t arranged any care for my son with LD, living in his own flat, for the following weekend!!
I wrote blistering emails to SSD and the agency, but nothing was going to get in the way of my trip.
If I loved everyone enough to put their needs first for most of the year, they should love me enough to let me go, and SSD should make appropriate arrangements to ensure my son’s needs were met.
Hi Bowling Bun, it is inspiring to read your experiences and commitment/advice. It can be so hard to walk the tightrope between things I feel I should, or want, or need to do for myself, and wanting to be there for, and spend time with, my elderly dad, and partner. I find a few professionals, social workers for example, look to me to do a lot more. Maybe I should, but they do so without support or interest in the effect on me, or us. For example a recent OT made it clear I should have helped my partner sell up and move to a more appropriate home, and should be doing that now, instead of keep trying to adapt present one. It will not be so easy, my partner has lived there 30 years, knows all the neighbors, etc. It is also sometimes not so easy to live with not doing things I could be doing now, if life was different and I didn’t want to care for dad and partner. I can feel torn in two. I almost always come down on the side of wanting to care, but it’s how to find enough time, energy and outlets for the rest of me! You sound so good at it, you have worked out a very positive attitude, which I don’t feel I have
I get torn too. BB and others have helped me to realise that I’m still entitled to do something for me.My hubby would want that. Today, I’m not visiting him,.the hospital are caring for him extremely well. DD 1has invited me to dinner, granddaughters will be there, and I don’t see them often. I don’t cook a ’ proper’ dinner for myself any more, so my daughters dinner will be so enjoyable. Veg galore! Sad that I’m no longer cooking for hubby, he so loved my Sunday lunches. Not going today won’t change that. I’m on the end of the phone too.
Believe me, I am NOT good at it, but counselling really helped me. I’m “Work in Progress”!
I’ve just got back from taking my son with learning difficulties back to his flat. Usually I enjoy the drive, as it usually takes me right across some of the best bits of the New Forest, but today I came through the back roads to avoid the holiday makers and traffic. He keeps his place like a palace, my kitchen looks like a grenade has gone off in it.
On the other hand I produced 24 hot cross buns, a fruit cake, marzipan, some lovely gammon, and roast beef and Yorkshire puds I don’t have the energy I used to, sadly. Major surgery saved my life and I have to be content with still being here, even if I can’t do as much as I’d like.
My “boys” (42 and 40) know that I either have a semi tidy kitchen and don’t bake, or make lovely food and leave the kitchen till later. Baking wins every time!!!
Tomorrow, I’m “on strike”, kitchen closed.
I
Oh wow thank you everybody for your posts and comments. It’s great to have the support. Ok I will get carers assessment, and I’m really glad you like dishrag, and that I’m not the only one who’s felt like that! I like keeping the tag, to remind me how I felt when I first logged in here. I am still very tired but some things are getting better. I can’t believe how much difference it makes now my partner has a few hours help a week with direct payments. It’s early days, and I still have a lot to do, but it is such a relief and a boost to come home and some things are done! It took me years to persuade and help my partner to accept help from anyone but me, but now so far that seems to be going well, especially now he’s got the hang of the idea that it’s for me! Thank you again everyone. I’ll be back!
You are so welcome and I’m so happy you are getting a bit of help. The real battle is often getting the caree to accept this Hopefully you can now edge a little more support in on top of this too. xx
Hope all goes well for DR.
I’m 85 and my husband’s full time carer.
He’s just been diagnosed with polymyalgia rheumatica. He’s had such a rough last 2 years.
It’s tough because we both get so tired.
It seems we are not entitled to any financial help. I pay someone myself to come and do 1 hour a week’s cleaning as I am finding it so difficult. My back just gets worse and worse.
I’m just immensely grateful to our GP who has diagnosed the problem and gone out of his was to give time to prescribe, do more blood tests and keep a check on things.
We are fortunate to be registered with a simply wonderful medical practice and I am so grateful.
Best wishes to you. 