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New member, but long time carer, struggling badly.... - Carers UK Forum

New member, but long time carer, struggling badly....

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211 posts
Hello all,

I have been a full time carer for my mother of 91 who has severe osteo arthritis in both knees & right hip. I live with my mother, and have done since 1994 (arthritis developed in 1997) and gave up work in 2013 when her mobility got so bad she needed 24/7 care. I havent had a holiday for 22 years but we have always been so very close & we love our home & make the most of each day. She was always very bright, alert & smartly dressed. Or until very recently.

In July mum's right hip finally crumbled and she lost the ability to use her walker to shuffle round the house, so she has been dependent on me to do almost everything for her now although she can still transfer to commode (just) by herself. I know this has affected her mentally badly - and i have tried everyone & thing I can think of to try to help her mobility, but to no avail.

Three weeks ago, she started having strange 'fits' where she suddenly couldnt use her remote control for the TV for example. This has lead her to get very aggressive (she never was) and also has started accusing myself & the district nurses of attacking her. She has no idea of day of week it is, will rarely now get dressed or let me help her dress. All she wants to do is smoke (she got through 97 ciggies on Sunday - though she was only ever a 20 a day lady) and smokes through the night (even starting a small smoulder one morning at 5am)

I've tried to get my GP on board for some help as i don't have any idea what I'm dealing with now. Her behaviour is so erratic & aggressive in just weeks, yet UTI test has come up clear. Please - can anyone tell me ...can dementia change someone so quickly, so much? I am struggling to come to terms with this for her & can't sleep or eat now with worry. Any support so much appreciated right now xxx
I am with you on this......

My partner of 7 years has changed hugely and dramatically this year. HIs extreme ill health that led to life changing and life saving surgery, brought with it a rapidly progressing dementia.

He is still only 71 so not an old guy really. Your Mother's health has taken a down turn - any health problem, even a cold, can cause an underlying dementia to progress very rapidly. This is what I have found anyway. The man sat in our lounge as I type, bears no resemblance to the man I lived with 1 year ago.

I suggest you make an appt to see the GP, and take with you a list similar to one I did a few weeks ago. There are 2 columns in this list. One headed " What Mother could do a year ago" and the other " What Mother does now" and then you list comparisons. For example, a year ago, could walk about, wash and dress ( or whatever) and now virtually bedbound, not dressing, not eating well.

The two lists will give the GP something to 'go on' - you also need to flag up what your Mother's awareness of safety was/is because if she is smoking like she is, then that is a very real danger......

Good Luck
Do you think she might have had a stroke, or some 'mini-strokes' that have 'blasted' her brain??

A scan might reveal it, if she could cope with that of course.

If it is dementia (vascular) and it is 'aggressive' the GP may agree to put her on a low dose of something like diazepam to 'calm' her. The risk of diazepam, which is also a muscle relaxant, is that it can make them wobbly and prone to falls, but if your mum has now become mostly immobile anyway, that may not be a problem in practice??

My MIL with vascular dementia is on a low dose daily of diazepam, and this helped to become less 'agitated' (she went through a phase where she kept trying to 'escape' from her care home)(poor soul, but there it is). I do believe the diazepam makes her 'happier' and at this stage of their lives, where the end is hoving into sight, and their poor minds and bodies are wearing out more and more, that being 'happy' is really the priority.

I completely agree the smoking is very dangerous, but probably really on on account of the risk of fire - whatever damage it's done to her is probably WAY beyond repair, and now, again, if smoking makes her 'happy' - and you can stop her burning the house down! - then would it be so very bad (if not cheap) to let her smoke? That said, if she does now have dementia, maybe she's not actually getting any pleasure, it's just become a 'habit'. My MIL 'fiddles' with things - many folk with dementia do. She will take a box of tissues, pull out one, fold it up, place it aside, take another one, fold it up, place it aside - it's a repetive behaviour caused by the poor 'fragments' of her brain. Maybe the physical act of cigarette smoking is now that for your mum.

She's had a devoted daughter in you and now, if, yes, the end is coming into sight, then given how dreadful dementia is, please, please don't try and 'keep' her longer than her poor mind can cope......when dementia sets in, the 'kindest' is to let nature take its course. I've seen my MIL go from an intelligent, self-reliant, totally independent and extremely competent woman to an empty shell - it's dreadful and heartbreaking to see. I can only pray that she is soon released from the dreadful state she has reached.

Kindest wishes to you at a sad and distressing time - Jenny
Hi Diane,
I would like to say how much your love for each other shines through your post.
Did you know that the over 85's are classed as the "very elderly" and that once you pass 85, problems rapidly increase? Mum is paying the price for living much longer than average.
It's now really important that you get every bit of help you can, both practical and financial. Is mum claiming Attendance Allowance? Do you have Power of Attorney? Is where you live mum's own home, or jointly owned, or rented? Does mum have over about £23,000 in savings?
You need to try to accept the future, as mum declines, and later. Better to plan in advance, than have something hugely difficult dropped on you without warning.
You also need to start looking after yourself as well as you possibly can. Even if you can't manage a holiday, you do need to have regular "time off" from caring.
What do you want to happen now? What would make life easier? Is the house well suited to caring for someone wheelchair bound, for example? Do you have a walk/wheel in shower? Dishwasher? Washing machine? Easy to care for garden? These are just a few ideas, everyone's situation is slightly different.
Sending ((hugs)) Diane and I agree your love shines through.

Your situation parallels my own in some ways. Mum broke her hip badly and never really recovered. The dementia seemed to increase as she partially recovered. Looking back, I suspect it may have been there prior to the hip breaking but certainly it was far far worse afterwards. I was told by the consultant that anaesthetic can worsen the condition ...

If your mum has not had a diagnosis, I would start there with the GP. There may be medication with the GP. If vascular dementia, a brain scan can confirm that. Incidentally, it may be worth going to the GP on your own behalf too. You need to take good care of yourself in order to get through this.

Very tough for you. On a practical basis, if you don't have Power of Attorney, now is the time to arrange it. Once the dementia diagnosis is confirmed, it may be too late.

If you have any specific questions or just want to vent, please ask away. Many of us have unfortunately been in your shoes.

Take care, Anne x
Thank you all for your kind comments & support. I am so sorry it has taken me so long to reply, but things got far worse after I had posted up my original thread.

My mother's 'dementia/pyschosis' actually turned out to be a very bad urinary infection that two doctors & three nurse visits hadnt bother to test for, despite my constantly flagging the problem up and telling them how much I was on my knees emotionally. But Sunday evening mum had raging temperature, couldnt stay off her commode and was just raving & crying constantly, She has no mobility at all now apart from being able to transfer from chair to commode - two small steps - and that's it.

So I had to call 111 - and by 12pm two out of hours doctors had arrived, tested for UTI and given us some Nitrofurantoin.

We limped through another night of hell as the meds kicked in, and by yesterday the pyschosis had gone but this was replaced by stomach cramps and a burning in her chest - by yesterday evening she was being sick, and by 6am today she couldnt even keep water down. I wanted to call an ambulance but she is terrified of dying in hospital so I'm sat here waiting for a doctor to call (again) and to see where we can go from here. I feel like I'm in another world, I'm exhausted mentally & physically, even the dog is ill now. Sorry to rant......I just feel so alone - no family left & nobody wants to know friend wise, but I can't blame them for that... thanks for hearing me out, bless you xx

PS I am 57, we do get attendance/carers allowance. Mum wont entertain power of attorney, wont talk about 'what happens after' If I could even get her in care it would have to be self funding and thus after a couple of years, I'd have to sell the house. Its a miserable time!
Diane - I couldn't just 'read and run'. What an awful time you're having, even your poor dog.

I can't really offer any suggestions but I'm sure others will be able to. I do hope the next doctor can do something useful.

Diane, I honestly think you should call for an ambulance next time. It may be time mum has a thorough examination.

As for selling the house, that's not true. While mum is living in her own house, the value of the house is totally disregarded. The LA should do a formal financial assessment, if mum has a modest income and savings below £23,000 approximately, then the LA would pay for some, or all, of the care she needs.
You sound too exhausted to go on. It's not up to mum to say what she will/won't accept, it's up to YOU to say what you can/can't do. The only power she has over you is the power you let her have. Think carefully about this. It's true!
When did you last have a holiday?
bowlingbun - Doctor has been and gone - has actually done his best - wanted Mum to go into hospital for checks but she hit the roof - and as she has 'capacity' he can't make her go. The meds obv werent suiting her and we now have some others to try. Meanwhile - she's back chain smoking again (up to 75 a day yet snorts at me that I'm imagining it and they'd 'laugh at me' for disclosing this. Its easy to say don't buy them - but life here is hell if she doesnt smoke. I know she's a very ill lady mentally (she thought the fireworks on Saturday night were the police 'signalling' to her regarding this new conspiracy theory she has that one of the district nurses is trying to 'take over the house'. I was pinning my hopes it was the UTI causing all this but I'm now having my doubts.

I've not had even a night away from home since 2005 let alone a holiday. Mum did go into respite foe 15 days in August while some building work was being done but insisted I went to see her 3 times a day or got the nurses to call me if I didnt show up or was late so it was worse than her being at home apart from the fact she couldnt wake me up on the hour every hour as she does at night.

She's now very much bright eyes and bushy tailed, smoking away, me exhausted as usual and is furious with me that I thought she should go into hospital. Thing is - even if she went in - she'd discharge herself because she can't chain smoke (has already happened) so I honestly don't know what to do now....except pray!

PS she has more than 23K savings - I think she has about 75k. I can run the house myself alone (just) but I thought at nearly 57 they'd take the house into account for fees & I'd be homeless too, as care home costs are prob about 900 per week?

Starfish - bless you - thank you for thinking of us - my dog doesnt even want a slice of sandwich beef - so yes, very poorly :( xxx
While she is living AT HOME the property value is disregarded, If she went into residential care then it might be considered, but a financial assessment would only be done once she had got down to the £23,000 area. I can't remember the exact age, but if you are over a certain age, then the value of the property would be totally disregarded.
If you took a holiday, could she manage alone? If not, she can either choose to stay there with support from a care agency or live in carer, or have respite care.
From what you describe, you are caring far too much, She should be giving you a lot of money every week to care for her, because the sooner she gets to the £23,000 limit the sooner the LA will start paying for her care at home. Then you can build up an Inheritance tax free nest egg for your future. However would mum even consider your best interests? Would it be unfair to say it sounds she delights in making life difficult for you?

It's NOT up to her to dictate to you what you can and cannot do. It's your call. You CAN go on holiday and there's nothing anyone can do to stop you!
211 posts