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Giving up work ... giving up last link to 'normality'?! - Carers UK Forum

Giving up work ... giving up last link to 'normality'?!

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I've been caring for mum with VaD for nearly a year and a half now. She lives with me and has been doing so for several years now, so we've had around 9 years pre dementia and then just under a year and a bit with dementia (following a suspected TIA). I appreciate that things were probably building up to this over many years, but within three days I went from living a fairly normal life with my mum to a total, for me, crisis - three hospitalisations while they tried to find out what had happened, shock for me, behaviour from my mum that I never, ever imagined that I would witness and then Social Services, Mental Health team, etc. So now we have support from a very good care agency and, miraculously, I was able to return to the job I had to give up when she had her 'episode'. I only work a few hours a week, but I think it's one of the things that is helping to keep me sane in all of this!

Just lately I've been feeling very tired, finding it hard to motivate myself, find it really hard to get out of bed in the mornings. This is all so unlike me, but it's happening. I guess it's because the situation is wearing me down, both phycially and mentally (and I know the 'mentally' will eventually start to have an impact on the 'physical'). I really feel like giving up the job. It's only a few hours a week, but with that and my Carers Allowance, I manage to get by (with some financial input from mum, which I 'control' via a PoA).

My worry is financial. I'm in my early 50s so retirement is a way off in the future. I wouldn't qualify for any benefits other than CA as I have some savings, and I know I'm lucky that I have savings, but if I start living off those now, what happens if I ever need help in the future? I have no children or other family to help me. We are lucky in that mum qualifies for funding by the LA for her care needs and she gets full Attendance Allowance (and I've applied and got every other exemption or discount that she/we qualify for), but even so, I can't survive, even basically on £62.10 a week. I can't even downsize the house now as it would totally disorientate mum and cause me no end of problems (and how on earth could you go through that process anyway with a person with advanced dementia?!).

It's a dilemma, and I know I'm not the only person on this position. It feels very unfair that I worked hard and planned well for my future, but now my 'financial future' is at risk because mum happened to get dementia. I can't contemplate a care home for her, not yet anyway, and she's not ready for it. Maybe some way down the line ....

What do people in my situation do? Maybe I'm just having a bad week, but it helped to write all that down!
Hi Maz,
Personally I don't think giving up the job you do for few hours of a week would help and doing sowill throw up more problems than it will solve. Not only will it give you money worries, it will also make it much harder to return to work later down the line.

It sounds like the "issue," (your mental wellbeing,) is making it harder to get up and do the job, rather than the other way round.

At least a few hours a week at your job, gives your brain a break from caring and let's be honest caring for someone with dementia isn't at all easy.

I'm sure others will be a long with advice but in the meantime, have a look at Bertie bear's thread if you haven't already done so: https://www.carersuk.org/forum/support- ... mood-12505

Melly1
Maz,

It sounds to me as if you need the job for more than just money. It can also be a lifeline to keep a link to normality. Caring for someone plus working is exhausting. Have you considered a trip to the GP, to check that your iron levels are OK and that it is not depression?

I too needed to carry on working for both financial and emotional reasons. It is exhausting but all I can suggest is looking after yourself as much as possible and taking breaks where you can. Would your LA fund a period of respite care so that you could think about what you really need to do? In my case, antidepressants were necessary but even if not, making sure you are in the best physical and emotional shape you can be will be necessary to care for your mum in the longrun.

Take care, anne
Hi Maz
Have you thought about asking for an updated Carers Assessment? SS should be doing all they can to keep you in work. Perhaps they could cough up for a sitter so you can get some break for leisure or exercise too. All work and caring and nothing else is very very wearing.
I also think its typical to feel flat and down once the shock and new routines fall into place. Adrenalin would have been helping you along but has probably ebbed away.
Some people call it COCS Clapped out carers syndrome. It's very common. :)
Hi Maz
My situation is very similar to yours. Gave up work and now work part time and now even more part time. Carer for Dad with VaD and nearly 50 myself so as you say no where near retirement.
I plan to keep my few hours going come what may. A link to the outside world, friends, good environment and rewarding work as I do care work for others since giving up the old job.
If and when our caring role comes its conclusion , it will be good to have employment history and a foot in the door if you need to work more hours.
I really wouldn't advise giving this up. Have you looked to other types of support while you are out at work? I have carers in so not really financialy worth me working but good for my sanity, self worth etc etc.
Maz, Social Services are supposed to support people who want to work. Mum should have an updated Needs Asssessment. which you need to attend so mum doesn't tell fibs about what she can do.
Hang onto your job, but consider asking if you can reduce your hours. Whose house is it?
Thank you all for your kind replies.

Giving up the job is probably the last thing I should be thinking about. I remember how elated I felt when the boss called me last summer to ask if I wanted to go back! I will probably keep it going and just try to ride the 'waves of despair' when I feel like I was feeling this morning.

I think Melly is right - it's my mental wellbeing that is at the root of this. I'm trying to pursue some counselling. I don't know if it will help, but no idea what else to try to improve my mental wellbeing! I don't want any medication. I would rather talk. I do however feel I will probably have to find someone privately, I seem to go round in circles trying to get help via the NHS. Last time they tried to insist I had to go at the same time each week (I can't, I care for a person with dementia and rely on carers!) - I'm going through the loop again on Wednesday by phone, but I have already seen the website say that if I can't make one of two appointments that they offer me, I'm out - what chance of my carer's availability matching the two appointments they offer me? It seems to support my view that any NHS counselling service in my area has no interest in supporting those carers involved with dementia.

But, I digress! I have been to my GP recently - to ask for the counselling as above, and also to ask for a check over. I'm going in for that tomorrow. I really have no idea if this will throw up any physical issues - who knows what months of stress and anxiety have done to me.

I do get breaks when the carer is with mum and I also get three hours a week respite for me - I sometimes bundle this up and have a full day - I'm due to do that this week. It does help, but I guess it's normal to feel down at times.

Mrs Average - I had another Carer's Assessment last week. To be honest the help we get is probably enough to cover my work hours and the time I need for appointments and also just for some breaks. I'm not sure any more will help. I think your comment about the adrenaline ebbing is probably true, it's all routine now, endless, endless routine with no end in sight! I probably am becoming a bit of a 'clapped out carer'!

BB - mum can't do anything any more and, sadly, is unable to really answer any questions anyway. Fortunately I have both PoAs for her. I'm not sure I could reduce my hours any more - I only work 8 a week as it is. The house is mine.

I really wish day care had worked with mum, that would have been wonderful - to drop her off and feel the freedom of driving away, or having time to myself at home. I tried it for a few weeks but they couldn't cope with her in the end as she got more and more agitated as I wasn't there! It may be that I try it again at some time in the future when the dementia moves into a different phase. It would be a bit of a 'halfway house' between caring for her at home, and a care home environment. She's just too 'aware' at the moment to settle anywhere like that. It's a real shame as there are two good local homes who both take people for a full day. One of the 'day care' centres I tried was actually only for 5 hours and it took me 4 hours to do the there and back every day! One of the local homes isn't a secure one. The other is. Mum is actually on the waiting list for both for a permanent place (I like a back up plan!) Maybe one day I will try her at the secure place again. They were really good there, but I was in a really bad place myself then, not really understanding what had happened to mum practically overnight, so I probably gave in to mum's resistance a bit to easily. Might phone them as they only have two of these 'day care' places - they effectively just absorb these two individuals into the care home's activities for the day, and there's no set time - I could drop her off at 8 am and pick her up again at 8pm!

Well, if nothing else it helped to write it all down and receive your replies, which, after all, is what this forum is for! Many thanks again, and apologies for the essay!
Counselling was a life saver for me. I had a few free sessions via a carer organisation, but just as I felt confident to share my deeper thoughts my free sessions ended and he left. Now I see someone privately, £30 an hour at the moment, but I know when I need to go, average only about 6 times a year as a rule, and we just pick up where we left off. I'm a very private person in some ways, used to soldiering on, sharing how I'm really feeling rather than my "brave" face is difficult. I can tell my counsellor my true thoughts.
Hi Maz
I read that you dont want medication but it maybe that a mild short course of antidepressants would just be enough to lift you out of low mood. After all low mood is chemicals in the brain not working properly, so if GP does suggest it don't dismiss it out of hand.

other mood improvers that work for me are yoga or any kind of exercise that also needs my brain such as aerobics class where I am so busy trying not to fall over my own feet that all my other troubles have to disappear. :lol:

Also, just asking, but long since you had a holiday?

Xxx
MrsA
BB - I think counselling would really help me to 'offload', but how to find someone good? The GP said that if the latest referral does not work out, then I'm to go back to him, which I will. He did say it could be hard to find someone good and 'relevant'. I'm not out to find someone who understands what it's like to be a 'dementia carer', but just someone who understands how difficult it is, and who may be able to help me talk things through. I do have several good friends who I chat to in person, on the phone and via message/email, but they are obviously not professional counsellors (though conversations with them do help me a lot).

Mrs A - my last holiday was a week in April 2016. Holidays are out, too stressful, I'd rather not go. There will be all the pre-organising, then there'll be the trauma of the respite stay and calls throughout my holiday as they won't be able to cope with mum. Then there will be the fall out on return as it will completely disorientate and unsettle her and I'll have weeks of settling back in at home (this is what happened last time). I just won't enjoy myself. Again, maybe when mum's dementia is in a different stage. In any case, it seems impossible to make a bookable holiday tally with a respite booking in this area! I hear what you say about anti-depressants, I won't dismiss the idea completely, but would rather not medicate myself just yet.