I don’t post often, but today I needed to speak up, because I’ve just been let down — again — and I know I won’t be the only one this has happened to.
After months of chasing, countless phone calls, and confirmation from multiple care teams, today (5th August 2025) was supposed to be the first day of a much-needed two-week respite for me as the full-time carer for my wife. I’ve been in this role 24/7 for over 3 years now, and haven’t had a proper break in years.
Just like two years ago, when the same thing happened, they cancelled on the day. No warning. No explanation that makes sense. No plan B. Just — “we’re still arranging things” and “we don’t know where she’s going yet.”
They’ve had months to plan this. I made it clear that today was the line. I even pushed back a planned break (including travel up to Scotland to visit my son’s grave for the first time in 7 years) just to fit their schedule. I’ve now lost money, wasted my time, and been pushed even further to the edge mentally.
The worst part? This isn’t a one-off mistake. This is the second time in 18 months they’ve promised a break, only to cancel at the last possible moment. I’m starting to believe the system just isn’t built to support carers at all.
Has anyone else had this happen? What did you do afterwards? I feel exhausted, angry, and completely powerless. And I can’t be the only one.
Go to the L A website and make a Subject Access Request asking for all information on file covering two years. Then search for Adult Social Care Complaints and make an online formal complaint. As for “still arranging things” it sounds like they couldn’t organise a party in a brewery!
As of now, no one is taking responsibility. You speak to person A, they say it’s person B, you speak to person B, they say it’s person C, you speak to person C, they say it’s person A or B.
So I wrote to my MP, the same one who helped me in the past.
People think we are joking when we say 24 hour care.
We may not be runing around 24/7 but we are on call 24/7.
I normally get to bed around 4-5 am and up by 9:30 am.
The last time they arranged a sitting service as they screwed uop the respite, 6 hours a day for a week, I was asked to return home as the carer doing the sitting could cope over 28 times and it is on record.
Adult sociial services for the first 1 and as of October of last year they past it over to the care team and district nursing team.
Which feels wrong to me, The carers Center who arrange to cover cost of respite claim no one as even spoken to them until today and they can prove it, The fact they even admitted to not even to have arranged it at 4:pm after telling me at 8:am that they were arranging transport.
I sent an email explaining everything to my Local MP, and that I had the old email and text messages and they claim to record every call so there is proof that they opening and knowing lied about it a second time.
I understand completely. I am up at 06:00 every day 24/7. I pay privately for carers 4 times a day to help me. Costing a fortune. I work full time, home at lunch time to help. Carers assist with moving and handling, but i do washing, bodily functions and meds early morning, lunch and night… taking its toll on me…
Should be in bed now. But had a bad night getting my mum to bed, need to wind down. Sometimes I have to get nurses out through the night and then go to work. Sorry you are struggling too. Such a hard life.
The 2 years you have done, people will say thats not that much, but the truth is a full-time caregiver does 1 year in working terms, that same 1 year becomes 4.2 years worth of work, so in the last 2 years you have done almost 9 years worth of work.
24 hours a day 7 days a week = 168 hours
168 x 52 weeks = 8736 hours divide that by 40 hours then by 52 weeks =4.2 years worth of work.
now think of the carer than have been doing this for 10 20 years and one that person they care for passaway you don’t retire and say well I did 85 years of work no you get told to find a job.
It’s relentless and hard work. Whilst it can be rewarding, it takes over your life.
You have no life, and it feels like everyone around you has a normal life.
I find unhealthy coping mechanisms help, but at work cost to your own health.
I feel like a drink just to chill out. And then go to bed late even though I am exhausted.
Do you do the same thing?
I don’t drink, but now avoid going to bed as I know I won’t sleep well, terrible at the moment. Often rubbing in Voltarol at 4am! Can only sleep with the TV on.
I get to bed around 5 am and up no later than 9:30.
I care for my wife, who had a bad stroke 10 years ago.
I have only been seen as her full-time carer for the last 3 years; up until then, I was left to cope alone.
I don’t drink by I sneak out around 4 am to chill out while having a Cigarette. ; )
I am full time carer for my husband and its been for 30 years last May. Thats because of his stroke.I have to guess everything he tries to say because he cannot tell me the right word as speech is non existence.Yes its so difficult to do absolutely everything for Ian now as his right side is affected and he could fall over a feather now. Thing is I have never had carers at all ,my choice because I couldnt stand different folk coming in at times might not suit us and I have felt trapped not just going out without one of my daughters sitting with him after they have finished work.Not everyday I need to pop out but they come often through the week to chat as I cant have a normal conversation with Ian.People say take respite but no way could I do that ever because no~one would understand his needs.In the very early days he struggled without sticks cos hes so determined but for years now we use a walker in the house but cant take him anywhere now too awkward with catheter and too risky.The last time we had a holiday together which was a month before his stroke and only for a weekend was 1995. Our 60th wedding anniversary will be in March so half of our married life has been caring.Everyone seeing us though cannot believe I will be 80 in Feb and Ian will be 86 in March.I could write a book about Ian because he has never moaned at all even though I get so exhausted at times,but you should see his wonderful paintings hes done since stroke.Not able now as concentration is weak but I had to get him trying something as he cannot read ,talk or understand conversations.I keep sane with craft selling when I can for various rescue centres. Its so hard for carers but maybe for us we cope and laugh our way through with family,so we count ourselves lucky that way.I really feel for carers that struggle alone for years not knowing the help they can get if they need it. Oh ,I have been given the hospital bed for Ian now as for years nearly 30 I have never had a full nights sleep and with the guard up to stop him falling out as now I cannot lift him when he falls. At last I can sleep right next to him still but without worrying. Huge relief.As I say I don`t have the carers but I do have lots of numbers through community nurses etc to actually call out in an emergency and all carers could do this to feel safe. Sorry I talk too much.
How frustrating to be let down like this! Unfortunately my experience of arranging carers for respite proved disappointing. The carers did not turn up when they should have done and the various carers sent did not know of my mother’s care needs. I had a call on day two to inform me that she has had a fall. We had to come back early. The only real respite I had was when we arranged for her to stay in a care home whilst we went away. That was our first real break from our caring role. We could be sure that she was safe day and night.
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