Can I ... Should I?

[canary]

It is OK to think these things, Sam. I suspect that we have all thought them.
This is why I get so cross with the "Living Well With Dementia" line.
(((((((((((hugs)))))))))))

 

[Norfolk Cherry]

It's so hard keeping going Sam, you are doing a brilliant job, but I too have plenty of these sorts of thoughts. I'm sure many people reading this do too. Dementia is heartbreakingly sad and soul destroying. I don't live with my mum, so I get a break, but of course, she is in my head all the time. I'm trying mindfulness meditation using you tube videos and I think it's helping. But my go to rescue thought is that one day she will need to move to a care home. Even then, I see from here, the sadness and worry will not be over. Can we come out of this the other end with our mental health intact??!! I just read on my other site about an idea where you take a photo of three things you are grateful for every day? Might try that. I hope you have a better day, mum's coming round to watch the Royal Wedding. Take care.

 

[Sam Luvit]

Morning @Amethyst59

Yes, those sweet moments do make it feel better, I just wish they were more than moments

 

[Sam Luvit]

Squishy hugs Sam

Right back at you @2jays Hope you are doing ok

 

[Sam Luvit]

Morning @Margi29

Thank you I wish I felt like a good person, I just feel like a fraud. I really don’t have a clue what works anymore

Oh well. I’ve put the royal wedding on, so let’s hope that makes her happy today.

 

[Sam Luvit]

The more I read about people’s search for a decent care home, the more I see they are run as a business @Margi29 :-(

The first sounds like a “medicate & leave” place. They just want the easy to handle, no effort required. Not at all what a caring daughter is looking for

The second probably has to work harder to attract if it’s difficult to visit in winter, but does show the stench of bodily fluids is not an inevitable in care homes, so that’s a good thing

That third one sounds terrible, if CQC “passed” them, that can only show what a tick box exercise that is. They do their paperwork, follow procedures etc, but I don't think “caring” is on the list they are checking. No wonder so many people say ignore the CQC report & look at a place to see if the staff care It never ceases to amaze me how some people (your brother being an example), just don’t see the emotional side of a care home, they just see the cost & distance

I’m so pleased you found the fourth & visit it that day, it must have been such a relief to find a place that is about care, I know it’s not yet for your Mum, but it’s got to be an enormous weight off you to find something you don’t want to run screaming from. Fingers, toes & legs crossed that the coffee morning goes well & she likes it. Don’t forget, she may need a few weeks to settle in with new people, but she’s such a friendly lady, I’m sure friends will be found quickly.

Id love to have seen your brothers face when you told him he’s paying for at least the first year

 

[Sam Luvit]

Who in the world lives well with dementia @canary ??? Her own GP made me want to slap him, when he said “she’s just got a bit of memory problems, it comes to us all, as we get older” This was 18 months after diagnosis... silly, silly man

I’m now looking for a new GP, as Mum has finally said she wants someone different. Very hard to find though, everyone I ask tells me who not to go to, rather than who to try

 

[Sam Luvit]

Morning @Norfolk Cherry

It is hard to keep going, knowing it’s going to get harder, she’s going to get worse, my world getting smaller every week. I talked to a lovely guy yesterday who cared for his mum for 7 years. 7 years. The thought of 4 more years had me wanting to quit now. But it could be 7 months or 17 years. It’s the whole uncertainty & the certainty that only death & most likely lots of anguish is in our future. If I’m struggling now ....

I did long distance caring, it’s no easier than living with Mum. I was worrying al, the time. If she didn’t answer the phone I was freaking out. Living with, distance caring or care home, I can’t see any being easier than the other.

TV blasting out, mums grinning away at it all. I’m off to walk pooch

 

[Norfolk Cherry]

Yes, it's the 7 or 17 years that gets to me too! Whatever the outcome, it's rubbish!! Remember those days when we didn't know about dementia? I remember what it was like before my dad died when I didn't understand what the death of someone you loved even meant?
I'm beginning to feel more like an 81 year old woman with dementia than a 58 year old woman with (the rest of) her life ahead of her! Right, off to think of three things I'm grateful for and do some breathing. I'm gonna try this Buddhist thing, see if it helps

 

[Sam Luvit]

Evening @Norfolk Cherry

I used to half listen to Mum talking about some of the “inmates” at the EMI homes she worked in. I was appalled at her calling them “inmates”, but she said they were like prisoners as they were locked in, although at times, she felt like she was locked in too. Her lament was often “don’t let me get Alzheimers, it’s a cruel disease’ How right she was. I was ignorant of what it really was till these last few years. I wish I was still ignorant

I’m sure I’m the 83 year old in the house, my youthful looks are long gone, energy levels depleted. While Mum has aged, she’s still probably healthier than I am, no stress of bill paying, no answering those wretched cold callers, no stress of getting anywhere in time. She just mozzies on in her own world, moaning about things I’ve not done, without noticing what I have done. I may be collapsing in a sweat puddle after mowing the lawns & dragging the mower around, but she only sees a distant bush that needs a trim, no wonder I’m exhaustipated

3 things I’m grateful for .... ummm. ... errrrr .... I’ll get back to you in that

 

[Norfolk Cherry]

Evening @Norfolk Cherry

I used to half listen to Mum talking about some of the “inmates” at the EMI homes she worked in. I was appalled at her calling them “inmates”, but she said they were like prisoners as they were locked in, although at times, she felt like she was locked in too. Her lament was often “don’t let me get Alzheimers, it’s a cruel disease’ How right she was. I was ignorant of what it really was till these last few years. I wish I was still ignorant

I’m sure I’m the 83 year old in the house, my youthful looks are long gone, energy levels depleted. While Mum has aged, she’s still probably healthier than I am, no stress of bill paying, no answering those wretched cold callers, no stress of getting anywhere in time. She just mozzies on in her own world, moaning about things I’ve not done, without noticing what I have done. I may be collapsing in a sweat puddle after mowing the lawns & dragging the mower around, but she only sees a distant bush that needs a trim, no wonder I’m exhaustipated

3 things I’m grateful for .... ummm. ... errrrr .... I’ll get back to you in that

Yes, it's rubbish. Today started at 8, plan was to do grocery shopping, collect mum and bring her to mine for birthday lunch and the royal wedding. Drove to supermarket, shopped for mum, shopped for us, got to checkout, no purse. Drove home to fetch purse, and could hear grinding noise coming out from under the car. No time to stop, might miss wedding! Drove slowly, got to mum, got her out of there, home, made lunch,

Evening @Norfolk Cherry

I used to half listen to Mum talking about some of the “inmates” at the EMI homes she worked in. I was appalled at her calling them “inmates”, but she said they were like prisoners as they were locked in, although at times, she felt like she was locked in too. Her lament was often “don’t let me get Alzheimers, it’s a cruel disease’ How right she was. I was ignorant of what it really was till these last few years. I wish I was still ignorant

I’m sure I’m the 83 year old in the house, my youthful looks are long gone, energy levels depleted. While Mum has aged, she’s still probably healthier than I am, no stress of bill paying, no answering those wretched cold callers, no stress of getting anywhere in time. She just mozzies on in her own world, moaning about things I’ve not done, without noticing what I have done. I may be collapsing in a sweat puddle after mowing the lawns & dragging the mower around, but she only sees a distant bush that needs a trim, no wonder I’m exhaustipated

3 things I’m grateful for .... ummm. ... errrrr .... I’ll get back to you in that [/QUO
Haha, I am laughing about the distant bush, that will have to do for today.

 

[Sam Luvit]

Hi @Norfolk Cherry

Sounds like my day’s :-(

Up, brush teeth & make coffee ... tum de tum ... Carer arrived. Oh good, it’s a new one ... here’s the phone, here’s the book .. Mum has Alzheimer’s please don’t rush her (she hurries & it goes wrong), healing broken wrist, etc etc.

Check everything is ok, make breakfast, walk pooch, load dishwasher, strip beds & load machine. Weed the boarders, check TV right channel, settle Mum ....wedding over, offer drinks etc (NO). Sulks.

Sort dinner. Serve up. Knock on door & evening Carer is here. 30 minutes early. No, it is not ok

Office changed times but didn’t tell me.

Aaaarrrrgggghhhh

Dinner back in oven, Mum sorted in 20 mins, not right, but that’s how it goes.

Dinner. Mum picked at it & moaned about the carers

Walk pooch. Wash up, clean up.

Spent an hour trying to get Mum to go upstairs as she kept saying she was going to bed. Well, blooming go then.

She wants me to get a gardener to cut the grass as I’ve not done it. She’s happy to pay £25 to someone to cut the grass, but it just means she will find something else I’ve not done

I did a year with one short break. Then another 18 months & a disaster break. 6 months later I had a fab offer, but I was so tired & stressed I was lousy company. 2 months later I’m begging to go away again

When you “work” you get a min 20 days holiday (working a 5 day week, that’s 4 weeks) wouldn’t it be amazing if carers got even 2 weeks respite cover a year, be that Carer visits or respite in a care home, it wouId be a real break. Well, I can dream lol

 

[Mudgee Joy]

Hi Sam and Norfolk
You are both talking what I am feeling - it’s not his fault but I am struggling to be pleasant through the many chores- I too feel old before my time - real respite for a week I think would give me back my strength - but that’s not an option for now.
As to the 7 years or 17 - by then I’ll be past caring I suspect .
Best of luck to us all!!

 

[Norfolk Cherry]

Hi @Sam Luvit and @Mudgee Joy, I actually stopped writing my account of yesterday and hadn't meant to post because it sounded so dull and boring! But the thing I notice is that when I've finished my day with mum, even when I come home, I feel so drained and empty and just sit watching TV mindlessly. I feel my life is disappearing into the black hole of dementia. I'm giving up my job in July so that's another life line gone as well as the financial freedom it gave me! There are times when I enjoy making her happy and getting her laughing at things, and I know I don't have to do this. I could move her in to a home, but that's the problem, then I feel I shouldn't moan. Especially when I know of all you peeps out there living with your PWD's and dealing with double incontinence, violence, all the things I read on here. Sam, you are right, if we got proper breaks, we could do this, but we are powerless because we are all isolated and can't mobilise to protest effectively or go on strike. Mudgee, I hope you can find a way of getting respite? I love this site though, it's helping me no end and I wish there was a like tab, so you could appreciate people's comments and make them aware you are reading. Right, off to sort out the next muddle and water the rainforest of plants she's accumulated from the garden centre..I hope everyone's day goes ok

 

[Mudgee Joy]

I like the idea of the “like” button- or we could have a “ me too” button!!

I do love my OH And I know I would miss him terribly if he wasn’t here - but I’m afraid of the future possibilities - we are probably all afraid of the future and just managing the present - and we have formerly lived lives where the future was full of potential and Happy possibilities!!

I wish I could I really calm down , stop being so anxious, accept the present and live with that !!
It would be very hard to give up my work even though it’s often hard to fit in! It takes my mind to a different place and helps me keep resentment confined.
All the best !! MJX

 

[kindred]

It is OK to think these things, Sam. I suspect that we have all thought them.
This is why I get so cross with the "Living Well With Dementia" line.
(((((((((((hugs)))))))))))

It's manipulative, Canary. Lovely to read you, by the way. If the emblem was dementia sucks, then I suppose it would lower morale for newly diagnosed people. The basic thing is there is no money or will to pay for proper social care to help us, so by perpetuating the idea that dementia is no big deal for carers, we are kept in place proving billions of pounds of mental and physical nursing care. It seems to be OK to write off our lives as of no consequence. Outrageous. Also, people rarely see anyone in middle stage dementia so the idea of just getting a bit silly is rubber stamped by the few people folk will actually see out and about. Oh to have a BIG PLATFORM to say this. Thank you so much for posting!!

 

[Norfolk Cherry]

It's manipulative, Canary. Lovely to read you, by the way. If the emblem was dementia sucks, then I suppose it would lower morale for newly diagnosed people. The basic thing is there is no money or will to pay for proper social care to help us, so by perpetuating the idea that dementia is no big deal for carers, we are kept in place proving billions of pounds of mental and physical nursing care. It seems to be OK to write off our lives as of no consequence. Outrageous. Also, people rarely see anyone in middle stage dementia so the idea of just getting a bit silly is rubber stamped by the few people folk will actually see out and about. Oh to have a BIG PLATFORM to say this. Thank you so much for posting!!

I totally agree with @kindred

 

[Margi29]

Morning @Margi29

Thank you I wish I felt like a good person, I just feel like a fraud. I really don’t have a clue what works anymore

Oh well. I’ve put the royal wedding on, so let’s hope that makes her happy today.

I went to mums, she was watching royal wedding, I asked ' who is getting married mum ?? '
She looked at me as if I was stupid, and said ' the ginger one, prince Harry '
I had to laugh, at least she knew, bless her
I always shed a tear at a wedding, even shed one yesterday
Then had a day out at a 1940s day in Haworth ( bronte land ) sun shone, good day.

Tonight I'm at mums, so hopefully Margi is not in an absconding mood, and maybe sleep part of night, work tomorrow. Actually starting at lunchtime till evening, not vampire hours for a change

Ps I wish we had an agree button on this site, so many posts but don't get chance to reply and actually acknowledge.

 

[Sam Luvit]

Hiya @Mudgee Joy

I’m sure my ranting must annoy some, but it’s better than saying it to Mum & there’s only so many times I can phone big brother & scream about our mum. It has to come out somewhere & here is where for me :-(

I’ve no chance of real respite, but brother is having to step up every now & then. The need is getting closer together though. Oh well, at least he only gets a week, I get months on end

I struggled to be pleasant today, Mum was “lurvely” to eldest, the vitriol to me. Thankfully he believes me. I think there are days when that straw & the camel mean so much. Today was such a day.

 

[Sam Luvit]

Sometimes @Norfolk Cherry it just helps to post, to get it said so to speak. Feel free to chat about whatever you need to. We all need the release & at times focusing on someone else really helps me

I live with Mum, so no day off etc, but after she’s toddled off to bed I curl up in the lounge & watch rubbish. I don’t take it in, I just let it wash over me. Sometimes I leave her reading & go & watch TV, just because she leaves me alone. I try not to think about how life is passing me by, the things I wanted to do, but now cants be a&53d to do.

Lol. I thought leaving my high pressure job wouId mean I had less stress. I really hope you’ve thought it through & have considered all. I’ve done voluntary work & “helped a stranger” just to get out the house. Hard though it is, I’d stress the importance of getting out & doing something that has nothing to do with dementia for the sake of your sanity.

A lot of the time, getting Mum to laugh means the world to me, in my darker moments I just don’t care. I wish we were treated as important, but by the time we really need the help, we are too tired to do anything but get through the day. Questions about what plans I have fir the weekend, Bank Holiday etc just flummoxe me. Why would I have plans, it’s just another 24 hours to get through

Sometimes I look at number of views, I wonder who reads my ramblings & if they scratch their heads or if it helps. It wouId be nice to know if it helps & maybe a “like” button wouId show who reads etc. Not sure a “dislike” or angry face would though lol