Since my grandfather pulled something in his back by moving furniture (despite me and my grandmother screaming ay him that he couldn’t do it and we should get professionals to do it). As a result he is unable to do anything and therefore has moved from a carer for my grandmother alongside me to a caree. This means that my nights are as follows:
I go to bed, it takes 30 mins for me to settle, ten minutes later I am summoned as my grandmother is not comfortable, I got back to bed, another 30 minutes to settle, anything up to two hours later, another summons to deal with cold bottles, another thirty mins to settle, anything up to two hours later another summons.
Last night I was summouned seven times between 11.00pm and 5.00am, that’s 7 times 30 = 3½ hours that I was not asleep. What can I do to impress anyone (council, relatives, or them) that I need my sleep?
Welcome to the forum,
You CANNOT keep on like this! Feel proud of what you have done for them, it may be time to hand responsibility over now, so you can have a life of your own at last.
Ring Social Services and insist on an URGENT needs assessment for your grandparents, and Carers Assessment for you. You CANNOT be forced to care for them, or anyone else.
How old are you?
A bit more information about them would help us make the best possible suggestions. On the forum, we all understand that however much we want to help, elderly frail people may require a TEAM of people to care for them, in residential care. It’s OK to say “I can’t do this any more”. I had to, it wasn’t what mum or I wanted, but it was what she needed.
Try to focus on what they NEED rather than WANT.
How old are they? What is wrong with your grandmother?
Do they own their home, or rent it?
Do they have over £46,000 between them (Yes/No)
Does anyone have Power of Attorney for them.
Does your grandmother receive Attendance Allowance?
Why are you, not the child of the grandparents, caring for them?
Mmmm … element of kinship caring here … normally grandparent the carer … the reverse also applies.
Good advice from BB ( As usual ) … the " Kinship " angle will give you an edge when contacting the LA as this post
will intimate.
If needed , separate thread on the basics of kinship carers and , perhaps , more importantly , the difference in both
support services and under law between kinship and family carers :
https://www.carersuk.org/forum/news-and-campaigns/latest-caring-news/kinship-and-or-family-carers-guidance-news-articles-support-31009?hilit=kinship%20carers
Several useful links within that thread … do not ignore them !
For example :
__
Kinship care ruling could cost councils dear.
A ground-breaking case on kinship carer payments could leave local authorities with a huge bill, social care lawyer and Community Care contributor Ed Mitchell has warned.
In essence , the difference that LAs need to observe when dealing with family … and … kinship carers.
Most kinship carer arrangements are informal … under the radar of both our own supporting organisations … tends to be family carers only , ignoring the numerous kinship situations … and the local LAs.
If neither of them has dementia, just ignore their calls. They should be perfectly capable of understanding you are NOT ‘on call’ throughout the night.
if they have dementia of course they won’t understand this.
You will have to be ruthless. And probably buy earplugs.
Either that, or, as BB says, you simply ‘walk away’ and they go into residential care.
Grandmother: 93, double hip operation (2001, 2015) cannot walk more than 50m from bed to bathroom to chair
Grandfather: 93, injured himself moving furniture, prior to that very active indeed
Neither have any form of dementia
Both are very independent and stubborn
Council say WAIT
Council say WAIT
Council say WAIT
(Result of three phones calls on this issue)
Grandmother summons because grandfather cannot do anything.
I am grandson to them both
Yep … that kinship element … use it !
The LAs are on notice under law … a Joker if you like … a family carer has to make do with the normal 4 suited 52 card pack !
Wait for what???
They have a duty to do an assessment, especially where vulnerable adults are concerned. Have a look at the LA website, find how to contact the Complaints Officer at HQ, and make a formal complaint. (I can do it online in Hampshire).
Incidentally, has grandad seen a doctor or ambulance staff? He needs to be checked out, at very least.
As grandmother cannot look after herself, tell the council that either they arrange help or EMERGENCY RESPITE.
Don’t ask, lay it on thick, and tell them they MUST DO SOMETHING TO HELP.
I have the same problem lack of sleep, my caree just can’t go to bed at 8pm like the council seems to want as they then cannot get out of bed BEDBOUND.
So stays up late but cannot manage to get into bed themselves, needs someone else to help E.G. me.
But then wakes up in the night needing the toilet bedbound, cannot get out of bed. There have been various suggestions using a she wee but just not realistic to use one of them.
We have an intercom set up like a baby alarm and I dash around, they just have no family to help, live on their own, were able to cope years ago. But old age etc means of course they need more help, what does the council do cut the help well that’s helpful.
Surely the council should think of our wellbeing, that’s what the Care Act is all about.
It is unrealistic to expect a carer to be up EVERY night, the odd weekend off but no I get no help support respite.
I am just exhausted and so is my caree, they have been disabled from birth, and as they have got older, their disabilitys have naturally got worse.
2 people are having their lifes ruined because of the lack of help.
Deciding that I needed documentary proof, I bought a cheap fitness tracker over the weekend and last night was able to sync it with my tablet. Based on a score of 0 - 100 where 0 is no sleep at all and 100 is eight hours of deep sleep, last night (when I was summoned a total of eight times from 9.30pm to 5.30am) scored a 15. When this person comes from the council (at some point) to assess respite I shall show them that as “documentary evidence” that unless we get a second carer in for eight hours during the day I will never get a good sleep ever again
Harry, what a brilliant idea to use a fitness tracker to PROVE that you have had no good sleep at all. I’ll remember that for others with the same problem.
You not having any sleep ever again, is NOT AN OPTION.
It proves that your grandparents URGENTLY need residential care, or overnight carers.
(If they both moved out, would that make you homeless?)
Following the meeting with the council person we have come to a compromise. When they have a sleep in the afternoon, I have a rest and they promise they will not summon me in the night unless there is no other option. By having a rest in the afternoon, I find I am able to carry on until at least 1.00am and therefore will see what happens today.
We have come to a compromise. Whenever my grandparents go to sleep, I go to sleep. The only problem is that this means I am trying to cram a 40 hour day (my grandparents 24 hour waking day with sleeps at random intervals and my 16 hour day) into a 24 hour day and it is impossible. For instance, I have not had a shave in a fortnight (and look a scruff), I have not had a shower for ten days and most importantly of all haven’t tidied my room in over three weeks. (case in point: I started writing this message at 12.50pm thinking I had ten minutes, I finished it at 1.10pm having done two sets of puddings, two cups of tea and my own lunch)
Harry, that is NOT sustainable!
Tell Social Services that from a given date (end of the month?) you REFUSE to care for them any longer unless they draw up a proper care plan for two people who both really need residential care, from what you say.
And Ceredigion’s answer will be “residential care” which is the last thing any of us wants.
This evening, I was on the verge of crying over this and told them both straight out that I was scared of what might happen if I was doorbelled again tonight (for the 14th straight night) and I think, finally, the penny has dropped. My grandmother has agreed that she will not doorbell me after midnight if I agree to be summoned before midnight (which I can live with)
Sleep atleast 8 hours a day for a healthy and better life.
Harry, have Social Services now done a Needs Assessment for them, and a Carers Assessment for you? They cannot refuse to do these, and written copies should be provided afterwards.
I make it very clear that my bottom line is getting enough sleep. If you don’t let me sleep you will end up in a care home. Works most of the time so long as you stand firm and stick to your guns. It sounds like your grandparents are the ideal role model for sticking to your guns. Give them a little leeway at first while they adapt but stress that it cannot continue for long. Unfortunately I don’t think not making your grandmother comfortable is an option. Perhaps an ot could review what equipment might be available so she stays comfortable without needing carer involvement.