Not a carer, not yet a sandwich


I know I should think about the future, but for some reason I’m postponing this. >

My toothache analogy … painkillers only provide a temporary respite … a visit to the dentist is almost inevitable ?

Chris, won’t be what? Unfair?
Your sure?

As sure as I would ever be … having been involved in the last back in 2008 - 2009 … as part of the CarerWatch group.

As posted on the main thread , no CarerWatch around this time … nor ANY of the individuals from our supporting organisations
… for the new kids on the block , an urgent perusal of the archives will be needed for them to fully comprehend just what’s
at stake here … for the carers of 2019 , and for those yet to join our ranks over the next decade and more.

However , a very rare beam of sunshine … posted yesterday :

You are totally right… I have to get myself together and sort out all the paperwork and all that legal crap. Thanks for bringing this up!

Not too many painkillers , mind … ?

Hi, it’s me again. A lot have changed since may, unfortunately for the worst. My mum has suffered a massive stroke, her left side is paralysed, she also has memory problems and cannot see properly. Because of that I’ve become her 24 hour carer.

I can manage all the physical symptoms, but I’m really struggling with the behavioural stuff. She changed a lot. Screaming became the norm, she is impulsive and aggressive. I’m tired and frustrated. Don’t know what to do.

Evie, I’ve just replied to your other post, maybe the mods can merge the two? Some fo the info you’ve already given us.
If you could answer the questions about discharge, it would help.
If you have a mobile phone, try to record mum’s behaviour. It’s the easiest way of getting the medical profession to understand what is going on at home.
Contact Social Services and ask for an urgent needs update. You CANNOT be forced to care.
If it’s getting too bad, ask for “Emergency Respite Care” or dial 999. She may not be admitted to hospital, but this should “fast track” some action.

Hey Evie

it sounds tough. If you are caring 24/7 this is too much for one person. Particularly if your Mum has challenging behaviour. No one can care for another person around the clock for any length of time.

Have you had a social services needs assessment recently? If needs have changed you should be entitled to one urgently. Call your local social services department and ask to speak to duty social worker and say you are at breaking point.

Also see if you can get your own GP onside. Make an appointment and explain to them how stressed and run down you are. Is your GP the same as your Mum’s?

What would you like to happen? Be honest, we won’t judge? Would you like help coming in or would you prefer your Mum go into a care home? If the latter you might have to get tough and say that you can no longer care for her. A couple of weeks respite care in a care home for your Mum might be worth considering for now so you can rest and consider what you want to happen going forwards? Again you may have to push for this and say you are at your wits end. But social services should be able to organise this.

Sad to hear you are having such a tough time.
Definitely get a needs assessment, as advised by others.
Strokes can cause aggressive behaviour, especially if the front lobe is affected. Also delirium may be the cause. These things and others definitely checking. I never say lightly about the need for a care/ nursing home. However you may have to consider that option, as needs and wants are not the same.
Take care of yourself. That’s a need!

Thank You so much for reply. I don’t blame the doctors, because the aggressive behaviour started at home. At hospital she was sedated most of the time, but I just can’t bring myself to do it at home. I would like to try something else, don’t know what. I have to do my research.

Yes, I know I can’t be forced to take care of my mother. But for now it’s the only option. I’m struggling financially, also I don’t want to leave her. The thought of it just breaks my heart. I hope you understand.

A head / heart conundrum … logic v. emotion ?

Evie, the roles of parent and child have been reversed, and it is up to you to make the best decision for mum.
If you have medication to sedate mum, but are not using it, then think again.
If it makes it possible for mum to stay with you longer, surely then the medication is the best way of achieving the best for mum?

If you are struggling financially, then that needs to be reviewed.
Does mum have over £23,000 in savings?
If not, then Social Services will pay for some or all of her care, either provided by someone else, or possibly by you.
This is a step by step process, starting with a Needs Assessment, SSD costing those needs, and then discussing with you how her needs can best be met. Paying you to care for mum may be an option.

Have Social Services done a Needs Assessment?

You’re absolutely right. But my mun hates being sedated, I tried once and she begged me not to do it. It was heartbreaking. I thought I can manage without the medication, but I have to think about again.

I don’t know how people do it, you are saints.

You hit the nail on the head once again. Is there an easy answer? Hahaha, just kidding I know there isn’t. Life is hard after all.

Beats hitting me thumb ?

Evie, maybe the medication needs a review from the GP?
What is appropriate in a hospital setting isn’t necessarily appropriate at home?

After my husband died, I just couldn’t sleep. My GP gave me something that made me more relaxed, so if I didn’t actually sleep, I could relax quietly in bed. I only needed half the lowest dose to achieve this.
Have you tried giving mum a half or quarter dose?
I’m not a medical person, although long ago I worked in hospital administration, so picked up bits and pieces of useful information.

Have you asked your GP or Carers Support worker for counselling? It might make you work out your priorities and make you feel more confident that you were doing the right thing. I had a counsellor when my mum was very ill, her doctor told me she had less than a year to live. The counsellor’s support was invaluable.

We totally understand that these are not simple decisions. And we are here for you through this tough time. It is understandable to want to keep her at home for as long as possible. She is still your Mum and you love her. I feel the same about my Mum. But to keep her at home you HAVE to balance her needs and your needs in order for you to be able to carry on. Even if that is just getting some time to yourself regularly.

Could some additional help in the home make things easier? Are there any particular triggers for her difficult behaviour. (With my Dad it was personal care. He was often more compliant to outsiders.)

So sorry things are tough at the moment.

So I don’t know, if I could keep this up longer. Right now I’m off my job, because I have to take care of mu mum. She refuses me every minute of every day. It’s difficult to get her to eat, wash, go outside.

The aggression issues subsided a little bit, thank God! I’m thinking about getting some professional help as I have discussed it with my husband and we decided it’s time. It still breaks my heart, but I have to be pragmatic and need to go back to work (part-time for now) . Can you please give me some tips as to what kind of help will be the best? I’m thinking about domiciliary care.

Has she had a Continuing Healthcare Assessment recently? That would be free care, whatever she needed.

Drum roll and … CHC / NHS Continuing Healthcare.

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