A small escape

[Wildwoodflower]

Sometimes you just have to get away. Even if it is only for a few hours. Today has been pretty awful.
Dementia has turned my kind and loving mum into a cruel, manipulative, narcissistic monster. As her sole carer, I get the brunt of her furies and spite. It is truly exhausting - and as someone who used to work 14-hour days in an excessively high-stress profession, I know a bit about exhaustion.
So, after a morning spent unpicking her finances with the bank and later an outpouring of such horrible, poisonous and entirely invented nonsense about how terrible I am that I just wanted to cry, I told her she was on her own for the afternoon and now I'm sitting in a car park writing this. And you know what? In a moment I'm going to go and do something nice for myself. Then I'm going to call in on some friends. My mum can go stew ... well, realistically she'll have forgotten all about it by the time I get back, but you know where I'm coming from.
Anyhow. If you can - and I know it's not always possible - take time for yourself. xxx

 

[CAL Y]

@Wildwoodflower . Good for you. Enjoy your afternoon.
Sometimes we just need to escape.

 

[kindred]

@Wildwoodflower . Good for you. Enjoy your afternoon.
Sometimes we just need to escape.

Sometimes you just have to get away. Even if it is only for a few hours. Today has been pretty awful.
Dementia has turned my kind and loving mum into a cruel, manipulative, narcissistic monster. As her sole carer, I get the brunt of her furies and spite. It is truly exhausting - and as someone who used to work 14-hour days in an excessively high-stress profession, I know a bit about exhaustion.
So, after a morning spent unpicking her finances with the bank and later an outpouring of such horrible, poisonous and entirely invented nonsense about how terrible I am that I just wanted to cry, I told her she was on her own for the afternoon and now I'm sitting in a car park writing this. And you know what? In a moment I'm going to go and do something nice for myself. Then I'm going to call in on some friends. My mum can go stew ... well, realistically she'll have forgotten all about it by the time I get back, but you know where I'm coming from.
Anyhow. If you can - and I know it's not always possible - take time for yourself. xxx

Oh so welcome to our forum, you will find great friendship and support here! I love it that you are going to do something nice for yourself. Thank you.

 

[Sarasa]

@Wildwoodflower , well done on getting away and doing something for yourself. I found it so depressing when I tried sorting stuff out for my mum and she thought I was being unhelpful and unkind so difficult and I didn't live with her and only went to see her twice a week.
Do you have any help coming in, and it sounds you need to factor in regular breaks away to stop you burning out.

 

[DreamsAreReal]

@Wildwoodflower I hope you enjoy your me time! I agree, sometimes you have to just go off and look after yourself. You can feel the stress building up, like a dam about to burst. I took two whole days away this week and felt so much better for it.

 

[Wildwoodflower]

Bought myself something, then met with friends and chatted for a couple of hours. Feel much better.
Thanks all! x

 

[Starting on a journey]

You must have breaks, every day otherwise it’s a 24/7 job. If you were at work there would be mandatory breaks!
On today’s break I went to the council tip and then for a coffee…,,,living the dream

 

[CAL Y]

@Starting on a journey . It’s amazing how the smallest things become much appreciated and enjoyed.
One of my respite trips was a 50 mile round trip to the hospital to have 6 injections In my neck.
Living The dream indeed.?

 

[Duggies-girl]

@Starting on a journey . It’s amazing how the smallest things become much appreciated and enjoyed.
One of my respite trips was a 50 mile round trip to the hospital to have 6 injections In my neck.
Living The dream indeed.?

Cup of coffee in Asda was my regular break. A 50 mile round trip sounds like pure self indulgence, I hope you took sandwiches and some good music. Not envious about the injections though.

 

[CAL Y]

Cup of coffee in Asda was my regular break. A 50 mile round trip sounds like pure self indulgence, I hope you took sandwiches and some good music. Not envious about the injections though.

@Duggies-girl . ??. No sandwiches but that couple of hours used to be absolute bliss.
It was also a relief to just drive by myself without having to listen to MH telling me how I should be doing it.
I was often sorely tempted to bite back at him and say, at least I still have a license but that would have been too cruel.
Im now concentrating on re discovering myself and trying not to feel too guilty for having fun again.

 

[Wildwoodflower]

I hadn't been prepared for the relentlessness of it, but then how could you be?
My mum has been living with me now for two-and-a-half years during which I have had one night away.
It's the personality changes in my mum that has floored me, however. Here's an example from earlier this morning.
I have to lock the bathroom door if I am to be able to use the loo or shower in peace; if I don't my mum will walk in. Okay, not in itself so terrible but the end of any kind of privacy is cumulatively soul destroying. This morning I was getting dressed when she walked into my room.
"We've talked about this," I said to her gently. "You need to let me have a little privacy when I'm getting dressed."
"Shut your mouth," she said. "Who'd want to look at you anyway?"
My mum, the woman I loved, would, never, NEVER have said that. I know it is the disease talking and not her, but dammit that doesn't shut down the pain of hearing it. I don't think I'll ever get used to that.

 

[Jaded'n'faded]

I sympathise so much. I couldn't do hands on caring with my mum (though it didn't actually arise) and she was in a care home for her last three years but I remember well those cutting comments. 'Who's going to look at you?' 'Nobody cares what you think.' 'You've let me down and I never want to see you again. Get out of my sight.'

That sort of thing. I'd spent the previous 5+ years being SO nice to her. We were never close but she came to depend on me so I visited regularly, took her on holiday several times, sorted out her various problems, listened sympathetically to her increasing paranoid phone calls and was generally a Very Good Daughter. In return I was vilefied.

So often the things she said took me right back to being a teenager/young adult and left me feeling worthless and hopeless. There were times when the only thing I could tell myself was 'at least I'll get some money when she dies'. Awful I know, but it was said to myself not to her, and by god - it helped!

 

[canary]

I agree - the hurtful remarks are horrible and cut you to the bone.
Unfortunately, they often lose empathy quite early on and as the disease progresses their world narrows and narrows so that all they can see are their own wants, needs and comforts without any understanding of others needs, or even that they have needs.

BTW @Wildwoodflower - it sounds like your mum is reaching the shadowing stage (aka the "velcro" stage) when they develop a fear of being on their own and want someone within eye shot literally every minute of their waking day. This means that they tend to follow people around to keep them in their sight and if no one is there they will go looking for them. I remember when I first joined being horrified when one member said that she could no longer go for a private wee, but had to take her husband into the bathroom with her as otherwise he got too distressed.

 

[Wildwoodflower]

Thanks, all.
A better day today and we nearly made it to her bedtime without a major blow-up ... and then she decided that she'd like to read all the texts on my phone.
"Mum, it's like asking to read someone's diary. You just don't do it."
"But I'm your mother!"
"It's still no."
Stomps off to bed in a towering rage.
Mostly it's really not funny, but just sometimes there's a dark comedy to all this.

 

[billcard]

Sometimes you just have to get away. Even if it is only for a few hours. Today has been pretty awful.
Dementia has turned my kind and loving mum into a cruel, manipulative, narcissistic monster. As her sole carer, I get the brunt of her furies and spite. It is truly exhausting - and as someone who used to work 14-hour days in an excessively high-stress profession, I know a bit about exhaustion.
So, after a morning spent unpicking her finances with the bank and later an outpouring of such horrible, poisonous and entirely invented nonsense about how terrible I am that I just wanted to cry, I told her she was on her own for the afternoon and now I'm sitting in a car park writing this. And you know what? In a moment I'm going to go and do something nice for myself. Then I'm going to call in on some friends. My mum can go stew ... well, realistically she'll have forgotten all about it by the time I get back, but you know where I'm coming from.
Anyhow. If you can - and I know it's not always possible - take time for yourself. xxx

Fortunately I don’t get the changing moods you’re experiencing because my wife sleeps 22 out of 24 hours a day. No one seems to put much emphasis on this and does anybody if it in symptomatic of dementia. I do get very tired (82) and very little respite just occasionally have to go food shopping and that’s it. She has fallen and the other day found her fast asleep at the bottom of the stairs on the hall carpet. She hadn’t fallen down the stairs but just lay down and dozed off.

 

[Cat27]

Welcome to TP @billcard
I‘m not surprised you get very tired. You’ve got a lot to cope with.
Please keep posting as you’ll get lots of support here.

 

[Izzy]

Welcome from me too @billcard .

 

[Shedrech]

hello @billcard
a warm welcome from me also

to be honest, you sound exhausted
it is not unusual for those with advanced dementia to sleep a lot .. maybe speak to your GP for a check-up, though, just in case
and it's a worry that your wife has fallen, and you found her asleep on the floor ... you must be careful if you are helping her to get up, if the both of you fall you may be hurt ... consider calling 111 as paramedics can lift safely
it sounds as though you need more support ... do you have home care visits? ... your wife has a right to an assessment of her care needs by your Local Authority Adult Services, and a Carers' assessment for you ... from this a care package is put together whic mught include some respite for you
please don't worry about finances, your home will not have to sold to pay for care fees and the LA may well contribute ... I hope your wife receives Attendance Allowance and you have a reduction in Council Tax (it all helps)

Admiral Nurses are there to support carers ... give them a call for a chat

Admiral Nurse Dementia Helpline

Call or email our Dementia Helpline/Alzheimer’s Helpline for reassuring and practical advice from our specialist team of Admiral Nurses.

www.dementiauk.org

 

[Wildwoodflower]

Hello @billcard , I hear you loud and clear.
I'm just a stripling of 57 and I find it hard to cope. I'm pretty sure it's not going to be easier at 82.
Along with everyone else here, welcome and I am certain you will find wisdom and kindness that will help you navigate the difficult days. xx