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Many of us are carers now and so this category is for carers to share their thoughts and experiences

TOPIC: Looking for others who are/were caregivers for spouses

Looking for others who are/were caregivers for spouses 2 months 2 weeks ago #3100888

  • weatherpoet
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I realise it wouldn't sound it in my post but I'm involved a lot in the local community, more than I've ever been, and I reckon I'll be doing a lot more soon too so I actually know a lot of people although generally speaking they are nearly all 20 years or so older than me because they're all retired, carers or their cared fors. I also belong to groups and hold groups which I enjoy and they also distract me from the feelings I hold inside when I'm at home in my caring role and the feeling of being alone returns.

Evening groups have always been a problem though as much as I've tried which is frustrating because I'm left with all the chores such as cooking to do before or after I go out. There is no one to cover so it's meant I go to bed really late by the time I've finished everything. It's not just cooking and clearing up though, it's also work I need to do for the distractions that help me as I have to prepare work for the groups that help me. I'm also involved in a lot of new work too. Generally I keep very busy.

Other than having to do virtually everything in the house, I'm not allowed to sleep until around 6am every night so I'm always tired which means I have to push myself to cope. I've often said I'll sleep in a tent or in the car but it is rather cold so I find it easier to put up with it. If I do try to go to bed at a normal time or even if I manage to do everything so I can get to bed earlier, I either can't sleep because my body clock is up the creek or I'm constantly woken up by bangs in the night despite my verbal frustrations at being kept awake. People have no idea what it's like when you're not allowed a normal sleep pattern and how you feel dazed all day. I have no idea how nurses cope with their long night shifts. I would love to have a "night nurse" so I could go off somewhere to get into a decent sleep pattern but there's no way one would be provided and unfortunately nor could I possibly work to afford to pay for one. We're only allowed 12 hours a week as support and whenever I've asked for more they've told me we're lucky to have that much and they then "suggest" ways they can cut us back further despite them knowing how severely mentally and physically disabled she has become. I know I "could" leave but...that's another story full of reasons why I feel I can't and never could. The easiest way to explain would be to say if you found a sickly kitten in a gutter and tried to look after it for 28 years despite it's constant scratching and not wanting anything more than someone to do everything for it, could you then throw it back in the gutter knowing it would drown in the first storm, walk under a car voluntarily or end up starving because it couldn't look after itself? True, I shouldn't be held to ransom but I would still have my own conscience to live with. I often feel I live with a robot for lots of reasons but even a robot feels things. This is what I would have to live if she went into a home which she would have to and I couldn't cope with that on my conscience... A.I.

I have often thought of creating a blog for my poetry but I've never got around to attempting it and I feel I need some guidance on that?

I just feel I'm always running on empty with no one to top me up. It's nice having friends but friends can't always provide the fuel required to feel whole.

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Last Edit: by weatherpoet.

Looking for others who are/were caregivers for spouses 2 months 2 weeks ago #3101293

  • pascalou
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It is nice Poet to see you do have some kind of social life at least and your poems and photos are always beautiful, but you must be physically and emotionally exhausted and this sleep pattern could seriously affect your health.

Did you discuss it with your wife's physician maybe he would prescribe her some sleep pills which would highly benefit to the both of you?

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Looking for others who are/were caregivers for spouses 2 months 2 weeks ago #3101694

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Being a carer is not a chosen profession but something that happens by circumstance when a partner wishes to carry on living in their residence as opposed to a residential; home. Having made the decision it is a 24/7 occupation and in my case allows me about 3 hours twice a week respite. We do have the minimum amount of carers visiting each day for 2 sessions of 30 minutes but not enough to upset the running of the house., To the people who say it isn't a 24/7 occupation I challenge them to try it . However I must admit that it might be different if the partner had terminal illness or Dementia. At one time I had 12 nurses and carers visiting each day and I was glad when I put astop to that and minimised their visits. Each to their own I guess .

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Looking for others who are/were caregivers for spouses 2 months 2 weeks ago #3102000

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Hello Pascalou,
Her medication acts like sleeping pills due to their sedative effect. The problem is if or when she takes them as she doesn't take them regularly or at times she's supposed to which means that even if I do have one night that I can get some sleep at a normal time, the following night is always totally different so there's no routine whatsoever. I just work around her.

It is definitely a 24/7 occupation because even when you get out, you go back to what's been left. I enjoy getting out for a break but I know I'll be left with everything to do when I get back, even if it's just the cooking and washing up because all the cupboards have been emptied. It's impossible to have someone cover all the time. I think that's when it's nice to have a son/daughter who can share the load...I've often fantasised it would be lovely to have a nice female au pair....no chance...but it gives me nice thoughts. My dreamworld is always a happy place to visit.
The following user(s) said Well Said: pascalou, Bonnie12

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Looking for others who are/were caregivers for spouses 2 weeks 4 days ago #3146408

  • woodsaw
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Hello Weatherpoet,

I do not think many in our situation get help from son's or daughters, I think you will find most in this situation find families desert them quicker than that as friends or people we thought were friends the job of carer is a lone one and 24/7 whether you are in the home or out not one that can be walked away from, It is with u full time the carer is the last person to get any thought or consideration!

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Looking for others who are/were caregivers for spouses 1 week 6 days ago #3147895

  • jennilin
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I agree Woodsaw I do get support from daughter but she has her own young family to care for, so at the end of the day the main carer is me .. You and I didn't choose this , we weren't prepared for this , we have difficulty coping with this, it rules our life, but the bottom line is do we care for our partners or do we walk away.. I can't personally walk away so I just have to deal with this the best way I can. I have good days and bad ... but most people have those days, not quite as bad as we have , I agree but we cope. Not everyone can do the caring role , it takes a sensitive,intelligent,tolerant person to deal with it ...not many people have those traits . xxx
The following user(s) said Well Said: Rosie 2 UK, woodsaw

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Last Edit: by jennilin.

Looking for others who are/were caregivers for spouses 1 week 6 days ago #3147908

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Hi Jennilin,
I never thought I would do the caring thing when we first knew of this wicked Disease but here many years later I am, I do not find it easy but I do it and could not think of not being the one doing it now.
I do get very low and find some days a struggle Thinking the main thing being its a lone Job with no warmth to go with it.

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Looking for others who are/were caregivers for spouses 1 week 4 days ago #3149486

  • Bonnie12
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Been a carer for 14+ years. His health is getting worse. The loneliness is the worst. I always thought that as I gotolder and the children had grown up it would be time for us. Dont get me wrong my hubby can walk a little but not to the extent we would like too. Imagined walking the moors were we now live but that doesnt happen.
I feel cheated.

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Looking for others who are/were caregivers for spouses 1 week 3 days ago #3150241

  • JUJO
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It truly is a very lonely life being a carer,but when I was a carer,there wasn’t as much help available then as there is nowadays,also,definitely no internet,
There is Carers websites,for interacting with other people who are going through exactly the same as you.

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Looking for others who are/were caregivers for spouses 1 week 3 days ago #3150264

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If things keep going the way they are, we'll be going back to having to fend for ourselves.
We asked for help 2 months ago. We're still waiting but we've been told we're such a low priority due to the lack of resources, they're only able to help those sitting on a ledge.
There is no "sit down, let's discuss things and make a plan that we can work together with to move forward". If any help is offered, it's a quick call from someone who doesn't leave their name or number with a suggestion how help can be obtained without them having to be involved...and that help offered, just makes things worse because the person either hasn't been briefed properly or more likely, simply doesn't have the time or resources to offer what's really needed.
As for the carer, I'm getting well-used to just getting on with coping alone and not relying on those who are supposed to be offering support because you end up fighting them because they only give reasons why they can't help, although of course I realise it's not their fault when they don't get adequate funds to offer what they would wish.
I care for my other half and always will but my engine daily runs on empty because I never receive what I need to keep going. The internet has offered a link to those in the same situation that otherwise you would never know exist but a computer can't hold you or offer a shoulder to lean or cry on when it feels there's no hope of finding the happiness a person needs from another human being to find enjoyment in life.
This song just describes how I feel...perfectly. Bad wine and Lemon cake
The following user(s) said Well Said: Bonnie12

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