[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 585: sizeof(): Parameter must be an array or an object that implements Countable
[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 641: sizeof(): Parameter must be an array or an object that implements Countable
Can I have a bit of a rant?? - Carers UK Forum

Can I have a bit of a rant??

For issues specific to caring for someone with dementia.
Apologies in advance if this all sounds like a misery memoir.

Mum has steadily worsening dementia although she won't accept the diagnosis. She was also diagnosed with breast cancer before xmas (i'm still not sure how the nursing staff at the hospital missed a lump the size of a grapefruit when she was an inpaitent for over 10 weeks).

I'm no different from so many people on here, struggling through during lockdown and gradually finding themselves running on empty but I'm stuck without a soul to support me. My Ghost Sister has done exactly what I predicted she would - taken the first opportunity to absent herself from the scene without the slightest bother as to how Mum's going to manage. We haven't seen her for three months and although she has spoken with Mum on the phone it's usually to wail about how bad her life is. She's never rung me to see how I'm bearing up or offered any kind of support.

I'm a key worker and until this week haven't been allowed to work from home so in between rushing back and forth to tend to Mum's needs, shopping and washing etc I've been spending my working hours dealing with frightened people and arrogant doctors (wonderful as a lot of them are, the ones I deal with are not the angels of current legend) I'm running up and down like a demented chicken trying to ensure that everything is done. Mum hasn't the first notion of patience any more and if she wants something done it has to be done NOW never mind that I am almost cross eyed with tiredness. And whatever happens or goes missing it's never her, of course. That is the dementia and I know she can't help it but, ye gods, it is exhausting when you've rescued her pills from the bin (where she never put them) for the 93rd time. I now keep them with me BTW. she goes from one ailment to the next in a Malaise Merry-go-round. In half an hour this evening she complained about her bladder - we had that sorted with some antibiotics from the doctor and despite her not going any more than me she still insists she 'keeps' going, she then complained about her knees but refuses to use the riser chair I got for her, then she had a headache, mainly because I mentioned i had one ....and round and round we go. I just think I've got one issue resolved and up it pops again. What worries me is that a lot of these complaints are just habit. Mum has always 'enjoyed' bad health and her griping about one ailment after another predates the dementia but what if there is something significant wrong and I miss it?

I feel like I can't call my soul my own at the moment. I'm now working from home which is great but also entails me running up and down between mine and Mum's to accomodate looking after her, usually lugging two massive cats with me because she wants me to stop two or three nights a week and I can't leave them home alone. I spend hours squaring her up and doing washing, shopping and cleaning but when I get to my own home it's gradually sinking into an episode of Hoarders because I'm too knackered to actually do my own domestics.

All the carer's advice I've read insists you should make time for yourself but since I can barely find time to blow my nose I'm not sure how I can achieve that.

I do apologise that this sounds like one great mound of self pity.
Nickii

This is an impossible situation to continue as something will give...and that is likely to be you.

Have you thought of getting carers in for your mum or has the covid situation made you think you should do it all to protect her?

I know a few people that have had carers regularly even through the pandemic.

I think at some point you will have to put yourself first. If you get exhausted and stressed it won't be good for your own immune system.

Your needs and health are important too.
Thanks for your reply.

The problem with carers is going to be Mum herself unfortunately. She likes to complain but any suggestion that she might need help is met with a blank refusal. She just seems to want every free second of my time and even when the Ghost wafts in she's utterly hopeless. She won't actually do anything. Mum was supposed to have physio on her return from hospital but I was at work when they called to arrange it and my blasted sister just handed Mum the phone. 'oh no, dear, I am fine, don't need any help.' So we never got the physio. When challenged all the GS said was that she didn't know who was calling. Of course the idea of asking never occurred to her. Mind you, I shouldn't be surprised. She's the one who stood in a room with two massive floor to ceiling wardrobes packed to the gunnells with clothes and announced on my arrival that she couldn't find any clean clothes for Mum. She expected me to have laid them out the night before and the idea of actually looking in the cupboards was beyond her comprehension.
Hi Nikki,
other carers of rellies with dementia, have told their relatives that the care support is of them as they need help. This might work for you.

Does your Mum claim attendance allowance? Some of this money could pay for a cleaner etc. Obviously, you would want them to take the relevant precautions re Covid.

If your Mum needs help with meals or personal care and you are at work, what happens? Does she wait for you?
Working from home isn't giving you a break (don't I know!) and your work sounds emotionally draining. You definitely need time for yourself, something I'm not able to get either at the moment and it a killer.

The good paid care workers are used to supporting folk with dementia, so I wouldn't worry. Leave them to grapple with your Mum. Personally I wouldn't be dashing to and from work to meet her needs. I would have care workers at set times and leave them and her to get on with it.

Whether you want to get this care in place now or wait until later, only you can decide.

Melly1
One way or another you are going to have to find some time for yourselfs otherwise you will have a nervous breakdown.

I ended up doing everything for my caree, 100 hours a week?

I would go around and there would just be so many jobs to do, my friend had paid carers but they just did so little, they just didn't have the time allocated but still managed to make a complete mess that I had to tidy up.

From the second I turned up honestly hours and hours solid work, then the bed time routine which again would take hours.
Then the same the next day, no breaks , no respite.
I did all the taking to the doctors/hospital appointments, helping going out for the day, no help with this was ever offered.

And like you say my house did end up into an episode of hoarders as I was too knackered to do my own cleaning/tidying up.

My friend died last year and I will say I am honestly very ill because of it all, the amount of stress I was under running on adrelaline then suddenly it drops.
You think life can get back to normal it doesn't not for a long time.

So you are not the only one, others have the same issues.

Your mum won't accept the dementia, "theres nothing wrong with me", but her dementia will get worse and worse, your situation will get worse and worse.

You are going to have say NO to your mum, you don't have to look after your mum, there is no law that says "you to have to look after your mum"

Your mum should be reasonable but all that goes out the window with dementia, the logical sensible thinking just goes with dementia.

Write a good letter to your mums doctor, talk to your doctor about your heavy care burden.

Write to Social Services, don't spare any details and give a date, on this date I am not willing to care for my mum anymore, my health is suffering.
It is the job of Social Services NOT YOU to do the looking after, but honestly from what you say a Care home/nursing home is the only choice for your mum.

Honestly you need to have your own life, spend time with your cats.

Otherwise your health is going to be destroyed like mine has.

And your ghost Sister, words cannot express, she should be doing her fair share but of course they don't want to.

You are muggins basically like Cinderalla, she did everything her sisters did nothing.

Well that's not right not fair on you.
I could have written your post some years ago, Nikki, although I did not have a ghost sister. I was an only child dealing with full-time job and my mum with dementia and various physical ailments.

A lot of what I would suggest will take time and effort which is precisely what you don't have, at least the former!

Make sure that mum is getting every single benefit that she is entitled to. Carers UK Helpline can advise. Claw every bit of money you can to make your life easier. I used mum's attendance allowance to pay for garden man and cleaner, for my house as well as hers! I also paid for a dementia sitter, a lady to come in and chat to mum once a week. Mum refused to speak to her of course and I had to tell her that she was training her for those old people who needed help!

Ghost sister will no doubt always be useless. Either ignore her entirely and accept that or tell her that you cannot continue exactly as things are and that you need to share the care. She will probably run a mile and/or let you down but it will give you the satisfaction of telling her. Tell her specifically what you want her to do. Give you an afternoon off once a week or ??

Finally, when you feel at the end of your tether, get on the phone to Social Services and tell them that you cannot continue and that mum is now their responsibility (if you mean it). It was only after sobbing down the phone to Social Services that I got respite. I spent that first respite hunting for a nursing home for mum. When she eventually needed it, I was glad I had put the groundwork in.

Sending ((hugs)). Unfortunately dementia tends to worsen people's bad traits in my opinion. In my case my mum's stubbornness was multiplied 100 fold but I guess that is what kept her going for so long.
Thank you for your support. I think the worst of it is the sense of isolation and the responsibility of having to remember everything. It's exhausting.

We may have had a small breakthrough today in that mum grumbled about how she couldn't remember things, I pointed out that she had dementia and she didn't instantly reject the suggestion.

I'd already been through this once before with my Nan who also had dementia (GS ran off like a scalded cat on that occasion too as I remember) so I can see a very grim future.

If I could get her out the house sometimes it would help. Pre lockdown the local memory clinic had all sorts on offer but she would not have a bar of them and short of performing extreme rendition and dragging her out the house in a sack there was no moving her. They are all full of old people she says. She's 83 :roll:
Nikki, in the care home my mum sat on the right hand side of the room as on the left hand side they "put all the old people and those who have lost their marbles"!!
Nikki
My hubby used to say the nursing home was full of ' nutters'. Not an expression he would use pre dementia!
My friends dad in the same home used to ask her to get him away from all the daft sods.!
We were pleased in a way that they didn't understand they had dementia.
Nikki ... I know exactly how you feel. I had 2 ghost brothers though! My Mum has been in care for about 3 years now but prior to that I did everything for her in her home for 10 years and had her staying here every weekend. It was exhausting. How I didn’t have a breakdown I will never know but I think I came close several times.

I think you need to tell your GS you need help and you need it now and you also need to get carers in to help your Mum even though she doesn’t want them. You simply can’t carry on like this. It’s just too much. Take care. Xx