Real stories

How to manage being a carer and working full-time

Although my mother (69yo) doesn't have alzheimers or dementia she has COPD, diagnosed with lung cancer 2 years ago but in remission now, and is on constant oxygen. I work full-time and recently went to my employer (Amazon) and asked to switch to a flex schedule. I provided them with proof of my mothers ailments as she was just discharged from the hospital. They said they need proof i am my mothers primary caregiver. I have searched and searched for a document for proof but can't find one for a unpaid caregiver. I created my own simply stating i am providing unpaid home health care for my mother. I then took it to her follow up with her doctor. Unfortunately her doctor isn't very smart and refused to sign it because she said i could to exploit it for an unknown amount of time off. She couldnt get it thru her head when i was trying to explain i don't want any amount of time off, I only want to change my schedule. She wouldn't listen and just said to bring her a FLMA form and maybe she'll sign that. Im in the USA and the FLMA is the Family Leave Medical Act which is for taking a leave of absence. She said that way i couldn't take advantage of taking more time off then needed. (Still couldn't understand i didn't want to take a leave of absence) Sorry i just had to vent to someone. So thanks for listening to my rant.

I run my own business. If I don't work, I don't get paid. Trying to juggle this and co-caring for my parents with my sister is exhausting. My business is flat-lining as I can't devote time to it.

Hello fellow carers, Just wanted to tell you of my situ. 83 Yr old widowed mum was diagnosed with alzheimers and vascular dementia august 2021. Had 2 years prior of mild cognitive impairment. My only sibling lives London, singe , no kids, teacher. I found myself doing more and more following her heart attack 8 years ago. I suffer poor mental health myself from time to time, to which my partner, mum, friends and workplace have always been very supportive of. Tragically, my said partner of 35 years left me for another at Xmas 2021...4 months after mum's diagnosis. We had indeed been having a very tough time in our relationship, what with covid , lockdown, furlough, myself having to work right through ( full time residential worker, unpredictable mixed shift pattern) plus try to care for mum , her isolation, terrible winter , menopause, it was horrendous on everyone. I fell to absolute pieces and am still pining for him, our old life, everything. I now find myself living with mum, surrounded by bits of furniture from my home as I await sale, being main carer, still trying to juggle my 28 hr job, caring for adults with complex needs. I have maximised all benefits and have recently been awarded more care hours for mum, but, my god....I don't need to start explaining to Al of you fellow carers all the ind and outs, happenings, intrusion, guilt, agitation on both sides, resentment, 24 hr on call, attending to absolutley every physical intellectual social and emotional need, emergency, appointment, Advocacy, being nurse maid, " mother", comforter, decision maker, banker, accountant, advocate, entertainer, cleaner, shopper, secretary, receptionist, planner, fixer, care assistant, cook, driver........ And folks only ask " how's your wee mum?" But that's OK, I get it, and I don't have any time to tell them about how I am anyway. But how am I? Well us fellow lone carers with their own mental health issues, still working in jobs that have a constant mix of unpredictable shifts, going through a long term break up that was not their wish ever, forced sale of their family home, living full time with elderly mother with said diagnosis plus heart disease and osteoarthritis and no siblings within 400 miles.....Well, its not hard to work out how I am. And how is mum? Well I love her so much that I have sacrificed virtually all of my life for her. I don't mean this ever to sound dramatic , it's fact. There is no room for " me". We carers all know this. Tell me....is there carers out there who are finding this a breeze? Who think "yeah it's hard , but its not that hard" if there is, I want to know how to care like they do. We carers deserve our lives back! We have still a long way to go, we are living constantly , every day without an end in sight until the very end of life, and the We must go through terrible grief all over again..... Yes, I have friend who sit with mum for 3 hours when I am backshift, and occasionally , when im off work, tk give me some time out with friends, stole time, 3 hour deadline time, leaving mum annoyed and upset . Yes, I have carers that come most days for 3 hours when I'm at work to be with mum. Yes I have homecare administering meds and reheating prepared foods for mum when I'm at work. Mum still uses loo independently but has started to have urine accidents, dislikes showering, washing hair, cries alot for my long deceased grandparents, has wandered twice ( have tracker and Herbert protocol in place) cannot prepare food, but still loves to gang washin out and is the most beautiful human being who I jump into bed with every night to have a wee snuggle and loving mother daughter chat with....this makes it all worthwhile, when shd always, still recognises me at night, where I feel her contentment , where she can recievd and give love....God bless these moments, I treasure them like a rare diamond, for these moments are priceless, ofcourse, and one day they will be no longer..... I keep saying " I need to get organised" with this, that and the next thing....I have so so many things on my never ending, ever increasing to do lists. I honestly cannot take another person saying " have you tried this, that, phoned this helpline, joined that group, emailed these organisations, dwp, CAB, social work, gp, private, voluntary, official, non official, alternative care, counselling, coffee mornings, singing groups, day care, befriended, PIP, Advocacy, POA, ACAS......honestly...I have spoke WITH THEM ALL!!! And very wonderful they all have been. We are all just sounding off here really. We know it is what it is, this is our loved ones path, journey, our journey too......... We just need a cure.

Hi my nsme is kate and i am a 51 year old working fulltime and also caring for my husband who is a 76 year old with Parkinsons disease and other multiple comorbidities. I am off sick at the moment as my hubby was hospitalized as he nearly died of aspiration pneumonia. I cannot afford to lose my job as i am the main breadwinner. I am constantly off work with one thing and another regarding my husbands needs. He does have carer's four times a day,however it's still really difficult and it is now affecting my physical/mental health also. Please help i feel so alone.

Both my parents have Alzheimer’s my dad has bladder and prostate cancer as well as other issues .They live independently and are ok as they have help .
I work full time and live 98 miles away but spend 2 nights a week with them … to help out with hospital appointments,help at home etc .. I feel awful and it breaks my heart to say but it’s costing me a fortune and to be honest as I live o my own ,I am really struggling.My parents receive attendance allowance which covers other help , but is there any support I can get financially.

I have worked at my company for over 20 years, I lost my dad in January and my mum has dementia, I am a team leader so my job is to support others, but I have been signed off for the past week as I find it so hard. Unless you are in the situation with your parent with dementia I don’t think you can understand, i never would have; I just cry all the time, it breaks my heart.

Hi i have an 11.5 hr contract at work. Im always put in a lot more. I have 2 young children and care for my mum with althzeimers. I cant do all these hoursnand dont know what to do.

Thank you so much for the information you've provided, I'll be feeling a lot better when returning to work knowing all this, take care and stay safe

I worked for well known charity no problems but got made redundant now work for partner charity same location less hrs so perfect added to travel 2 weeks for training but now been told it could be months before my allocated place of work be available I can't keep travelling to far and complicated for care needs of partner told them I was a carer on application form references will prove it's never been an issue until now having to travel can they withdraw my employment offer have offered to go without pay on job retainer until my allocated work place is fit to open

Hi Mark,
I read your article with interest as I am in the same position, 46 and working as a Lawyer. It certainly is very challenging.

Hi Mark .. well not sure where to start. I'm a 54 year old in a full time demanding job role. I m currently caring for both my parents at there home. My father has Dementia and my mother is house bound with COP constantly on Oxygen. We don't have cares. Every day thou a challenge, I get through it. I live with my parents in a back room, I'm studying at the moment to achieve a qualification. supporting my youngest through college soon to change to University. What's killing me is no financial support. I pay to live here, pay for my daughter who lives with her father as this house only has Two small rooms, I pay for my own food. I'm unable to think about anything other than work and home. I'm drowning!! It's lonely, hard and some day so stressful. I'm paying off a car, loan and as I said supporting my daughter.. where is the fairness.. I want to continue my parents support, but it's driving me in to more debt. I'm exhausted mentally and physically. I worry daily about my job, them and definitely not forgetting my own family. I'm sure I'm not the only one in this situation. My employers are understanding at the moment, but this is bound to change however I cannot afford to lose my income.. can a full timer not claim any financial help ? What can I say to my employers ? I forgotten to mention, I've been with my employers over two years as there sales manager.

Hi I feel so alone. I am a nurse and work full time with elderly people in a care home. I am really struggling with my 81 year old mother who has Alzheimer's and lives an hour away on her own. She is relying on me for everything although she has carers twice a day. It has got to the stage where she cannot accept she is incontinent and throws her clothes away rather than wear a pad and wash her clothes. She is in a wheelchair and an amputee. She cannot work out the tv remote or simple things like turning on the radio. She is desperately unhappy because she lives in squalor due to hoarding. She doesn't understand the value of money anymore. I have brother and sister in law living nearby but rarely visit or phone. I feel like I am cracking up. I have asked mums social worker to find mum a care home but I have no voice as I don't have power of attorney. Nobody has and now it's too late. All my free time is taken with either going to take mum out or phoning her and trying to help her cope with whatever has happened over the phone. My marriage and my sanity will suffer if I don't handle things better.

Just got back from Cornwall with two good friends and hubby 55 with alcohol related dementia has not drank for three years now (I think he has forgot the addition) But he run off twice left us looking for him just about to inform police as missing by chance found him plus nor tantrums then 10 mins from home has a wobbly and wants to get out of car on M2 I can't go on help please

Thank you to Mark for sharing this information. I have a full time job, have been an am mum's (now age 94) registered carer' from the start @ 7 years plus now, I was overseeing her lifestyle, wellbeing/safety in her own home, bringing her home with me at weekends, whilst working fulltime, keeping my own home too. Mum is now has now moved to a 2nd Care Home, (whom I visit most evenings after work). Mum had to be moved as a matter of emergency from the first place after a really bad fall for her own wellbeing and safety but since the fall she now has Psychological problems, she has good and bad days, to say the least! I knew nothing about Alzheimer's Dementia when mum was diagnosed and her life style began to change, to be honest, I couldn't comprehend it and struggled to cope and still do, I still have problems mentally with coping with mums Alzheimer's Dementia, it is so diverse and emotional!!!! As Mark says it's hard for people to understand if they haven't had to go through it themselves. It's great now that Alzheimer's Society is now making everyone aware of this god awful disease to help raise money to find a cure.