You pay over 1,000.00 a week for a live in carer. Yet here I am on call 24/7 with 62.70 plus working tax credit … Bl**dy h*ll.
I am so tired today as mother woke me three times last night. ‘Its the middle of the night Mother, I need to sleep’
“Sorry darling I didnt think of that”
Herein lies the problem. She really didnt think of that. I will go crazy if this carries on.
Want to let out a room. Would be ideal to let to a carer for reduced rent but not sure how I would find someone like that. Still need one carer 4 times a day as well.
Mother tried to scratch the carers tonight, i hate all this.
Hi Jaqueline
I am wondering if you are approaching the end of life stage for your mother. I know it is not what you are wanting to hear but in a way it is a conclusion to the ever increasing stress. I am not saying that to alarm you but you are echoing my own words and thoughts from exactly a year ago that I can not but draw comparisons. I was constantly wondering “how long?” and “is this it?” but no one professionally would offer an opinion. I found Dad was doing all the same things as your mum and I was in roughly the same circumstances as yourself. I eventually admitted Dad for respite care in the first week of December, he was still eating but falling more than once a day and ignoring everything anyone said to him, he was calling people who had passed away years ago in the last few months and mixing me up with his mother and wife. He kept asking to “go home” and not knowing anything about his real home where he had lived for 60 years. He never slept , was doubly incontinent and needed 24/7 care.
Just so you have a story to compare against, after Dad went into the care home he continued eating bits for a week, had a couple more falls, was reassessed as bed only with sides always up, his eating tailed away, he shouted less and less and to put it simply faded away over the next 3 weeks.
The only advice I can offer which may upset some people who have not lived through the same things is to discuss the "DNR"and “AND” forms with your mum’s GP and consider whether you wish for further interventions should your mother 's condition worsen. I hope that is not too upsetting for you and I am only saying it because no one said it to me and sometimes it is what you are wanting to talk about.
I’m sorry my rambling is mostly ignoring your question but every other decison you make revolves around the "how long " question. If I had known 6 weeks before dad passed away what the time scale would have been things would have been so much simpler.
Thank you for your reply Henrietta. The thing is she is fairly normal and we chat and have a laugh most days.
She is bed bound (2 carers four times a day) and her only exercise is being out into her chair (via hoist) each day.
The personal care distresses her soooo much. She is better if I am there but I dont always want to be.
I already have dnr in place. Carers reakon dementia and the mental health nurse has assessed her and she has tablets for memory/anxiety.
In many ways death would be a release for me as well as very upsetting. If only Mother could come to terms with having personal care …
Feel bad for her.
Sorry about your dad. Are you still a carer for someone?
Could sleeping pills help your mum to sleep through, and give YOU a good night’s sleep???
Time to be ruthless!
Yes. Sleeping pills could be helpful. Its only once in a while that she wakes me at night atm but good idea if (hopefully not when) that becomes more frequent.
Its mainly the relentless being on call which gets me down.
Have you considered having an overnight carer, rather than living in?
Would be lots cheaper. Two nights a week and the day in between, so you could catch up on your sleep and have a proper “day off” a week.
Ideally I would have someone one week a month so that I could go away. But 2 nights is a good compromise.
Sleepovers … not without much controversy in recent times ?
https://www.carersuk.org/forum/support-and-advice/all-about-caring/direct-payments-employing-anyone-for-sleepovers-beware-court-case-28622?hilit=sleepovers
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Carers denied millions in back wages as court overturns decision that sleep-in shifts should attract minimum wage.
Significant victory for struggling care sector which warned two-thirds of employers faced bankruptcy if decision was not reversed.
Hi Jaqueline, sorry if my post was inappropriate but there are so many things you say that remind me of where I was. No I am no longer a carer but I do still do paid care work. I may think about changing jobs next year but I have been too busy with house projects this year. I am also doing some paid support work so I am thinking of maybe doing more of that, but I don’t want to have to think at all until next year!
I think the idea of overnight carers every now and again is a really good compromise. I think my advice might be not to spend too much on holidays yet (given the main target of 60). It would be silly to spend £100s on a few weekends away that became the critical sum just as you were reaching 59 3/4 if you see what I mean. Make sure you take breaks but keep your eyes focused on the magic 60.
We will be out of funds long before I reach 60 so a few hols wont make much dofference from that point of view.
Your post was fine. Not inappropriate.
Paid care work … What is a support worker? Hope your plans go well for you in the new year.
Hi Jaqueline
Support Work covers a multitude of things but I am just doing the easy end of the scale, a lady with mild learning difficulties so support with shopping, ferrying her to and fro and reminding her of life’s basics like shopping, washing etc. Very relaxing after dealing with full scale dementia plus multiple other conditions in the mix for ten years!
If you book for two nights away (cheapest deals mid week not weekends) that means Monday travelling to the hotel, Tuesday enjoying somewhere new, Wednesday travelling home. If you stay about 60-90 minutes away, and leave early, that is almost three whole days away. I did a number of 2 day trips away, found three 2 night trips were better than one longer trip.
From home, near Southampton I could be in Axminster, Brighton, or Swindon within 2 hours. Lots of different places to explore.
Recently I found a Premier Inn in Seaton, Devon for £29 a night in January. Devon in winter can be lovely, crisp mornings and clear days. With short trips you can even watch the forecast and book accordingly!
H. A support worker job sounds really good.
Bb. Yes two nights would be good. I really want regular contact with my friends in Wales … Not driving makes the journey last all day, literally!
Worked out that having 2 carers fiur times a day is costing as much as a live in carer … Ish. Want to find out kive in carer costs to double check. Would be great to be able to get out more …
Will ask current agency about live in care from 2 nights to a weekly amount …
You could probably cope, couldn’t you, having ‘days on’ and ‘days off’…ie, days when NO carers come in at all and you ‘do everything’ (is that possible?) and then days when you do nothing and the live-stay over carer does ‘everything’ (to give you decent ‘time off’).
Would the costs be the same do you think?
One thought, might be impossible but here goes - I know that you can get ‘overnight hospice nurses’ to stay over night ‘for free’ IF the patient ‘qualifies’. I’m wondering whether having that ‘in exchange’ for a sizeable donation (but LESS than the commercial hire cost!) would help the money go further? Hospices might not go for this if your mum is not ‘ill enough’, etc. Worth checking out though?
Agency are getting costings done for me today.
They will train me to use the goist as well so that we wont need extra carers as often.
Wonder if the council will pay … Not long now til the savings drop below the magic threashold.
I still think you should have a reassessment for Continuing Healthcare.
Just been reading about chc and will be contacting our gp asap. Thank you Bowlingbun.
There is a lot to this caring business.
Yes, and no one tells you much, because they are worried about their budgets!
It always comes back to money …
My mum is incontinent, immobile and has early stage dementia. Hopefully chc funding will apply. No idea how strict they are but prob very due to … Money. Cant find a pound sign on my key board just a dollar one!!!
The criteria is supposed to be more than Social Services can lawfully provide. Look up the CHC Framework, long winded I’m afraid!