Challenges of life

[caroline_1702123456]

I am a carer and juggle full time work but who cares for me, Carers assessment waste of time a) have to book annual leave to attend, b) they cannot do anything as managing the daily juggle. I am lucky mum does not need personal care and is bright but has arthritis and registered blind. I saved very hard for holiday last year but not again because the cost of home care no financial support and it took three months to plan as had to ring numerous care agencies and try and get a package in place for week while away. It worked out in the end but the whole experience and cost has put me right off.
I just mange on my income and mums pension but I am a JAM just managing energy costs high, lost carers element on council tax this year due to welfare cuts, I have a small mortgage we cannot move or sell to improve the situation as she furniture walks in the home and knows where everything in if we moved she would lose her independence which would be dreadful and not give her the dignity.

Yes I moan but life is a great struggle and tiresome at times there is no pleasure it is is about living day by day

[Anne001]

Hi Caroline,

Welcome to the Forum. I too cared for my mum and worked full-time. It is a relentless slog. Does your mum have anyone come in when you are at work? Is there any way you can work from home at all from time to time to save your energies?

I have no bright ideas as I know how hard it is. All my annual leave for approx 6 years went on mum's hospital and social care appointments. All I can say though is take pleasure in small things, is there anyone who would sit with mum to give you a break for an hour here or there?

Anne x

[bowlingbun]

Caroline, you should NOT have had to take annual leave for a Carers Assessment, as you are "disabled by association" under the equality act, and so your employers have a duty to make "reasonable adjustments" for you, in the same way as if it was you were disabled yourself.
Are you sure mum is getting all the benefits she is entitled to?
I'd strongly recommend your rang or emailed the Carers UK forum, especially about losing your carers discount due to cuts. I'm not sure that's right.

[Mary_16121]

Start with a smile!
I recently had to close my shop ( the only one of its kind in the UK) because my other half was extremely ill, had major emergency surgery resulting in a stoma and a bag. He was also diagnosed with vascular dementia and brain atrophy - this became HUGELY worse because of his illness....
I am trying to work from home let's have another smile...
Last week ( I am a genealogist) clients came to see me for an appointment at home - I am trying to appear as professional as I can to the resounding noise of my other half snoring - he sleeps quite a lot - he then without shame wanders through in just his dressing gown - unclosed - displaying all that nature endowed him with plus his ostomy bag !!!!!! need I say more....

[Mary_16121]

I am a carer and juggle full time work but who cares for me, Carers assessment waste of time a) have to book annual leave to attend, b) they cannot do anything as managing the daily juggle. I am lucky mum does not need personal care and is bright but has arthritis and registered blind. I saved very hard for holiday last year but not again because the cost of home care no financial support and it took three months to plan as had to ring numerous care agencies and try and get a package in place for week while away. It worked out in the end but the whole experience and cost has put me right off.
I just mange on my income and mums pension but I am a JAM just managing energy costs high, lost carers element on council tax this year due to welfare cuts, I have a small mortgage we cannot move or sell to improve the situation as she furniture walks in the home and knows where everything in if we moved she would lose her independence which would be dreadful and not give her the dignity.

Yes I moan but life is a great struggle and tiresome at times there is no pleasure it is is about living day by day

I wish I had more welly than I do - CARE IN THE COMMUNITY - is just so much rubbish. Why does the Carers Allowance stop when you draw your pension. I have contributed to my pension, I am entitled to draw it, my caring commitments have not changed because I am older - they are harder and more difficult.
nuff said

[Mary_16121]

OMG am I fed up to the back teeth - spent the morning sorting out the swimming activities for my other half - after the caring providers think it is ok to send a man with dementia into a swimming pool and sauna unsupervised whilst the enabler/carer stays outside the building lounging around his car ( know this because I saw him) - next go the the cemetery to put flowers on my 13 year olds grave because its his birthday - next coming home and bump into the handyman for the agent through whom we rent our house. Some local ******** has complained to the landlord because the garden hedge has started to grow... and it needs trimming back errm how insulting that the agent then messages the handyman with the section of the lease saying we should get it done.... freaking hell...I am stressed as hell, my other half is recovering from major surgery and has 2 sorts of dementia, and I HAVEN'T NOTICED THE HEDGE and really, could this lovely person who wants it trimming not just knock on our door and tell us rather than sneaking to the landlord who reports us to the agent........oh I hate being a tenant..... and everyone knowing our business...... oh well, it is only 11.00am there is plenty of time for something else to happen today rant over for now

[Henrietta]

Hi Caroline
I remember what it feels like working full time and taking all your annual leave for hospital appointments etc. My advice would be - put some time aside to think outside the box- apologies fo rthe awful phrase. At some point in the future things will need to change and when is really down to you. Do you love your job and can't live without it or do you turn up just to pay the bills?
Is mum old enough to claim Attendance Allowance ? Would you be better off claiming carers allowance and working part time? If you love your job , then you must bite the bullet and fit in some quality time off to arrange things for mum. Get the most of a carers assessment and a needs assessment- two different things best done on different days however irksome that is leave wise. Do your research and make the most of the appointment time and get what you can organised all at once.
Have you thought about sitting services, day care centres, looke dito charities specialising in mum's condition to see what they can offer.
I had an ok job before I left work but commuting expenses, dog sitting expenses, care expenses etc meant that I was actualy better off financialy leaving work and getting Dad's AA, my CA and part time work with no expenses. Depending on where you are in the post code lottery various services and discounts will be open to you as a carer.
It sounds as though your mum would be self funding? It is worth doing some research and getting a good care agency in- perhaps they could do the assessment one evening or at the weekend?

[yvonne_16091]

Mary_16121
Hi,
I have only just joined this group but feel like you do,annoyed that I cannot get carers allowance as I get a pension.I am not married to my caree he is my partner.Sadly his daughter does nothing for him, she thinks that a pop in for 5 minutes is all that is needed, until she needs a loan or to borrow something and she can be here for a couple of hours.I never get any offer of help and it is making me very depressed.I have had two hips replaced and a knee and am waiting to have the other done but am terrified as I know I will not be able to bend or kneel down to help my partner and having a back issues as well does not help.She used to come with her husband to cut our three big lawns but then that got in the way of his cycling races and her gym and park runs, so now I have to do that as well.
How can I stop myself feeling so bitter and I know I am beginning to hate her for her lack of concern for her father who has advanced Renal cancer with lung and liver mets? Somedays it is hard to get out of bed. I try not to show it in case it upsets him, and he feels it is his fault.
It does affect me especially as he has started to moan and shout at me which he has never done before. I tell myself it is because he is in pain.
I would appreciate any advice from other carers with similar problems.
Yvonne

[bowlingbun]

Stop trying to be Superwoman and start yelling for help. You know what you should and shouldn't do after knee surgery! If you don't feel appreciated, don't want to stay, then start planning your escape. You do NOT have to do the lawns. Leave them until he pays someone else to do them, or pave over them. Seriously, if he can't deal with the garden then the long term options are moving or getting a gardener.

[Mary_16121]

Yvonne

Oh, how I wish I could change things for you and for me! Partners !!! It is a very one sided partnership isn't it - mine is anyway and I am sure yours is too. I do not think I get anything at all out of my relationship now.

I cannot afford to leave, I don't think I want to stay, I feel sorry for him, but I cannot see the road ahead for all the problems in my way.

I think you feel like that too.

I was talking to a lady in our village, and she knew of someone who was 'just a partner' and when her partner was diagnosed with dementia, the first thing she did was to finish the relationship by text message - I wish I had not been told that!!!