Hi Anyone
I’m a bit new to this online forum and a bit of a dyslexic dinosaur with technology so apologies on grammar or id I’m on a wrong page or something( I’ve had to call grand daughter to fix the spell check its disappeared.
I 've been caring for my 79yr old mum for 5yrs, she’s had various acute and chronic ailments for many years and was on remission from lymphoma 3/4yrs. During chemo I stayed with her constantly then when remission was accomplished i weened her off me living with constantly back to 2/3nights a week, for my sanity and hers. I worked full time then in NHS different hospital from where her treatment was given we had quite a few A&E visits sometimes I had 24hr days in various hospitlas, so I suppose it was a trial run up for what has been happening of late…
The long and the short of this is I burnt out and had to go on sick leave on the 30th June after daughter having and emergency caesarean thank the lord daddy made it 10hrs before delivery on the 15th June and mum got diagnosed with nocturnal apnea and is on nightly ventilator plus her cancer has came back stage 4 in both lungs on the 17th.
I have such anxiety and tired, I am still off work, they are on my back because its long term and they have suggested I take all annual leave then unpaid leave I would like to accommodate them but how do I survive financially I have tried contacting all bodies Citizen Advice ,gov.org, etc its so confusing and its taking ages because of covid
Mum had never got any benefits in her life because of her pension or I. we got a letter the other day that she is able to get attendance allowance. But I’m looking for myself to cover bills house etc has anyone been in my position I had my stage 2 long term sick meeting today and I am worried sick that the next time I talk to them I will have lost my job. so are there any benefits or grant that I could apply for t help in my situation to spend time with mum in her last months or year
As I said its exhausting this to wrtie with dyslexa to boot lol
Kind regards C
Welcome to the forum, I just wish you had found us sooner.
One disadvantage of being seen as a “capable” person, is that everyone thinks they have a right to a slice of you, and you feel you should help.
STOP helping anyone, right now.
Let them all get the services they are entitled, to, and start nursing yourself back to good health.
It is time mum either moved into residential care, or had lots more care at home. NOT from you.
It’s incredibly sad that no one told mum she was entitled to Attendance Allowance a long, long time ago.
Mum should have a Needs Assessment from Social Services.
With regard to your employers, you are “disabled by association” and they are required to make “reasonable adjustments” for you, as if you yourself were disabled. Talk to ACAS concerning your legal rights.
Thank you BB for your reply I will definitely chase up on the ACAS for more info on that. At this point there would be no way of mum going into any care at this late stage of her life as her wishes are to stay at home till the end and a promise is a promise I have to keep.as she had been a rock.
I would like to take the unpaid leave to look after mum and i wonder what support is available to be able to do that.
Have you asked for an NHS continuing healthcare assessment? Help to share the care at home.
You cannot keep a promise if you are dead! My husband died, I nearly died. I know other carers who have died before their carees.
Hi Catarina, welcome to the forum
It sounds like you’ve been dealing with a lot, you’ve come to the right place to get support from people who understand exactly how you feel and what you’re experiencing.
Alongside the advice you’ve already been given I would recommend you have a look through our advice and support pages here:
and contact the helpline with any questions.
Best wishes
Jane
Good morning BB
Thanks again for more advice I shall add that to my list today we have hospital appointment later today. Being off work at the moment has helped with the anxiety of my job and at the moment mums condition is in a manageable state, I’m getting some comfort from mindfulness exercises so far as I’m not interested in any drug route that has been offered, even your replies to my posts are a blessing thank you
8 years ago mum was a victim of fraud over the phone and in person the culprits have never been caught and swindled her out of £16,000 pound of her savings, not surprising her health and mental shock took a grand uturn on a once strong, loving, helpful force to be reckoned with I can do anything attitude. 2yrs after she was diagnosed with 2 different cancers she is untrusty of strangers and wont take calls unless she knows 100%.
She isn’t palliative yet but I have told her that I will need the Macmillan when the time comes and I am in touch with them monthly, she knows them from previous.
kind regards C
Hello Jane
I called Carers UK and the kind lady gave me a number to to try also, I’m actually about to do that next if they are busy I will click on the address and have a look for sure sometime its daunting for me reading, thank you for your response its greatly appreciated.
Kind regards Catarina
Hi Catarina, good to hear that you are in touch with MacMillan, they do such good work. We are fortunate to have a wonderful hospice with a day centre where I live.
HaHa BB
Great minds and knowledge is power, that is my plan to get mum to the day centre in a hospice. My friends husband passed last year and the hospice where he was was beautiful and marvellous and a great experience for all friends and family a lot different from mums day. Mum is the last in her generation left and I will be the last in the tradition of the old ways in our family, all our cousins, siblings and myself are resolved not to have the old traditions carried on, but in the mean time my priority is to take care of me to take care of her time out from work avoid covid. I’m feeling better already I can see a tiny speck of light. have a good day and I will get back to sourcing all these many web pages thank you
Kind regards C
Hi,we all know how you feel,I’m looking after my 93 year old father(I’m 54 now).never really had a social life in years(friends/partner seem to drift away) .my problem is ,I’m always frightened to o ask for for help.you will meet some nice people on here,hope 2021 is a better year. Ian x