Thinking about giving up work to full time care for Mum- experiences and advice please

[Ghostofallnightmares]

Hi everyone,
My Mum has had Dementia for a few years but after a fall and hospital admission it seems to have accelerated rapidly to Stage 6(?)
She's at home now having been discharged, with 4 brief carer visits a day. I was able to stay fr the first 4 days full time with her, but we were literally downstairs in a small house all that time.
She's on her feet but nowhere near as steady as she was and is unable to make tea or drinks or anything. She hates adult incontinence pants and there are issues with her in the day and night trying to get to toilets, removing the pants etc.
Long story short, it's definitely looking like she might need full time care.
It all feels so fast - out of hospital on Thursday and now family are talking Care Home. I do not want to put her in a Home. I want to care for her but I'm scared . How do you know if you'll cope ? What's the reality ? I'm told by family it'll break me , but I want to try .
I'm so scared and upset and it's all so fast .
I don't know if you can give me advice? I've been beside myself for days.
There are no good choices are there in this game 😭
She's 88, Type 2 diabetes and survived cancer twice. Not to be harsh but her life might be limited. Who knows?

Does your mum have “funds” for want of a better word, to essentially pay you to do it? I think it’s amazing you’re considering this, you sound so caring. I’d be nervous of getting into financial difficulty if you didn’t have your wage though? If her estate can cover you for that, would it be worth a try to do it and see how you get on? Care home at some point will always be an option

Why don't you want her to get 24 hour specialist care?

How would you make sure there was back up for you if she can't be left alone and e.g. you need to go somewhere for a few hours, a day, a night?

Can you afford to give up work and if not what are you plans for funding?

Family can't just help themselves to money in this situation if the person hasn't got capacity to agree to it. Even if there is an LPOA the court of protection usually needs to agree family care payments.

Kindly, please don’t do this. With dementia things can change so rapidly and you may be able to cope one day and then the next you might not be able to. You might give up work and then very quickly realise you didn’t need to. We thought the best thing was to keep my mum at home as long as possible (I also considered giving up work), we were so wrong about that. She may well get to a point where one person is not enough to look after her at home. Care homes are not all bad, you might find a lovely one (they definitely exist)

also to add, it is MUCH MUCH harder to find a care home once the dementia is advanced to the point where you can’t cope at home anymore

Hospital admissions can highlight just how far the dementia has progressed - while at home, the person can bumble along in their familiar surroundings and the situation seems to be on a plateaux. Put them somewhere different and the real clinical situation becomes clear.

I'm not clear if you're also suggesting moving in with your DM too - that is a massive step and really not to be taken on the spur of the moment. As regards your DM's condition the very sad thing is her condition will get worse - incontinence, wandering / immobility, distress, not eating or drinking.

Pls don't give up your job. Could you ask for a period of un paid leave, where you trial it out ? Maybe use this time to find a care home for her ? If finances allow could she afford a live in carer ?

Your family are right, please listen to them - caring for someone with dementia is all consuming, exhausting and very hard emotionally. To take on this responsibility for by yourself would be so hard.

Everything @Lampan says is correct, we were broken by caring for DF it is not easy and once SS see the family are caring your left to it and if you start to struggle you will have to beg for help and fight them on top of caring.

Find a place for her with good care of you / she can afford to. Visit her often.

I can’t emphasise how much my stress levels dropped once we found a lovely care home. Obviously putting someone in a home is extremely sad and there are massive feelings of guilt and loss, but it’s the best thing - to be cared for my trained people in a setting where she is far less likely to come to harm. Normal homes can be dangerous for dementia patients.

I feel for you, OP. It is a horrible situation to be in.

My cousins fully intended to look after their much-loved DM once she became unsafe in her own house. One of them adapted their own house in order to do this, but her decline at that stage was so rapid that within a month or so of her moving in with them it became clear that this wasn't working. At night, they literally had to lock her in her room so that she couldn't wander into the kitchen and turn on the gas cooker or other appliances, and she even managed to get out of the house one night and police help was needed to find her. Fortunately, she was uninjured, but it wasn't something that could be allowed to happen again. And her personality changed. She had always been the kindest, gentlest of people, but at this stage of dementia, she started to get quite nasty when thwarted in some way.

A nearby care home where family could visit as often as possible was the only answer. She has been there for about 5 years now, the last three of those in what was described as the final stages of this awful affliction, confined to a chair or bed and completely unable to speak ( although she expresses sadness or anger through the noises she makes). On a good day she does still occasionally show signs of recognising her visitors.

Before you make any big decisions about giving up your job, is there any way you could take, say, a fortnight or even a month's leave to do a trial run, to see how you cope? Bear in mind too that sadly that the task could become much more challenging much faster than you expect.

OP, kindly, be aware that becoming a full time carer for a parent will change your relationship with them for ever.
Also, have you had any training for this? She needs trained, possibly specialist, care. The best thing you can do for her is to ensure she gets the most appropriate care. That might initially be in her own home, but it may also be in a dementia care home. You may not be the best carer she could have, but you will be the best advocate for her needs, which are likely to change over time.

Remain her daughter and get someone else to do the caring. If funds allow pay for a care home or additional care at home. You can pay for company calls .

Do not do this. Sadly, the condition only goes one way and the care needs will grow

She might live another 10 years.
Get her full time care and visit often.
Refusing continence pants is just the start
Visit care homes and find a nice one

Find a good care home, and let her be nursed by professionals.
You'll be worn down by this if you try to do it all yourself.

It's relentless. Time-consuming. Wearying.

You can visit her frequently and enjoy spending time with her.

OP, your mother will be much safer in a home.
Everything will be arranged and adapted to minimise the risk of falls.
She won't have access to potential hazards such as the gas hob.
She'll have 24 hour care from a team of carers, not just one person trying to do it all.
Staff will be trained and experienced in dementia care and a good home will provide a range of appropriate activities for residents.

If you give up your job, (and your home?) what will happen in the future?

Would your mother, when she was well, have wished you to do this, risking your own health and financial security?

I always thought Îd look after Mum who has dementia in her twilight years and took a couple of months off about 18 months ago to move in and dedicate myself just to her. She was probably about stage 4 then. It did indeed nearly break me . People do it but it’s really really hard for one person to manage alone, so much harder than Îd imagined. Good luck OP with whatever you decide.

What kind of job do have op? Is it the kind where you could take a leave of absence instead, like a sabbatical. Then if circumstances change you have your job to go back to.

Or do you have good sick pay, get signed off by your doctor. My dp had nearly 5 months off when his mum was dying (and then died). It was really tough on him and he wasn't mentally well enough to care for her and keep working.

I became a full time carer to my elderly dad who was put on the end of life pathway a couple of weeks into the first Covid lockdown and lived another 13 months.

I loved the bones of that man but that 13 months cost me a further two and half years out of the workplace with cPTSD, panic disorder and GAD.

If would seriously advise you to consider the absolute worst case scenario and how long it might last for before you make such a huge decision.

Be wary of this. My employer forced me into an unpaid sabbatical when I was signed off with stress due to my caring responsibilities.

This sort of thing may well not be legal but believe you will not have the time, money or energy to argue your case.

It will potentially break you.

Care home with lots of visits from you. You can just focus on nice things and drinking tea/eating cake then.

I agree. Our DM ( who we said would never go into a carehome) is really happy and settled n hers. It’s small and homely , she’s made friends with people with similar dementia illnesses and in her age group. We are amazed at how quickly she took to it. She’s washed and nicely dressed ( we were struggling with that) eats her meals with other people, sits calmly and chats ( a bit nonsensical most of the time but that’s fine) does simple activities . She seems really happy. I think she feels safe. We are relieved and grateful to see her happy and secure.

Hello everyone and thank you so much for your replies.
She really only has a small house as an asset . That's all she has really. She willed it to her grandchildren so it's heart breaking to think it's all she had and worked for and it'll go.
I could have 6 months full pay sick leave at first as I'm in bits... I'm 58 and was considering retirement anyway so I could do that as an option.Financially we'd be okay if I took a sabbatical as an option also.
I asked for your advice ..but it's so not what I want to hear...but absolutely what I need to hear.
A lot to think about it. I'm just not there yet in my head for the home. It's coming to terms with it I suppose.

Kindly, op, it seems unlikely that you would get 6 months of full pay sick leave without some kind of return to work assessment etc.

If the monies from her house are spent on her care then that is a good use of what she worked for.