Real stories
How to manage being a carer and working full-time
Mark Hatzer knows first-hand how difficult it can be having a job alongside caring for someone with dementia. Here Mark shares his tips on knowing your legal rights within the workplace.
My name is Mark. I’m 51 years’ of age and I’ve worked as a solicitor for 25 years. I’m also a carer for my 83 year old mother who has Alzheimer’s disease.
Finding the right balance between these two roles can be a real challenge, because being in employment and being a carer can often feel like having two full time jobs.
There are literally millions of people in the country who are in this position and who are forced to spread themselves (too) thinly.
Unless you’ve had to do it yourself, it is unlikely you will know how challenging and stressful it can be.
No matter how well you might think you are coping, eventually your physical and mental wellbeing will start to suffer, which is no good for you or the person you are caring for.
I thought it might be useful if I shared my own experience of what it is like to juggle a job whilst being a carer, and what your legal rights are.
Mark's top tips for carers who also work full-time
1. Talk with your employer about flexible working
It is important to know that as a carer you have certain statutory rights. These are in addition to any contractual ones you might also have with your employer.
Providing you have worked for your employer for at least six months, you have the right to ask your employer to work flexibly (providing you have not already made a request within the last 12 months).
Your situation might be helped by requesting flexible working arrangements such as flexi-hours, working part-time or working from home.
I'd recommend setting out in writing what it is you are proposing. Outline how this could impact on your employer’s business and how that could be dealt with. Your employer can only refuse you if they have a good business reason for rejecting your request.
Once you've put your request in writing, ask for a meeting with your manager or supervisor to discuss matters further.
I had to go part time a couple of years back, with the option to work from home if things aren’t going well. I don’t have to work from home very often, but just knowing it’s there is a godsend.
2. Establish what will happen in case of emergencies
As a carer you will frequently be faced with unexpected emergencies, which inevitably come at the worst possible time.
In the past, common emergencies for me related to unexpected care issues relating to my mum, or if she was having a bad day and had had a fall. (In addition to Alzheimer’s, my mum also has arthritis and epilepsy. We never really know what each day has in store for us.)
It’s a comfort to know I have the legal right to take a reasonable amount of time off work in the event of an emergency.
3. Check your employee handbook
The bad news is, unless your employers are willing to exercise their discretion and pay you for your time off work, you have no legal right to be paid (unless you have a contractual right which states otherwise – I'd recommend checking your contract of employment or staff handbook).
Quite often your contractual rights will be more generous than your statutory rights, particularly if you are a long-serving employee.
The carers I know are usually reluctant to invoke their rights as stated above; they fear prejudicing their position at work and their career generally.
But it’s worth remembering the protection we all have under the important Equality Act 2010. In a nutshell, carers looking after an elderly or disabled relative or friend are protected under the Equality Act from being harassed or discriminated at work because of their caring role.
4. Speak to the experts
Employment rights can be a minefield. There is nothing worse than being torn between a loved one you are caring for and trying to keep your job going.
So don’t forget, if you don’t know what to do for the best, then it’s likely someone else will.
Don’t be afraid to ask for help; I had to.
The obvious starting point for people like us is the Alzheimer’s Society who are always pleased to help, and will point you in the right direction. And they will always deal with your enquiry in total confidence. Likewise other organisations like Carers UK.
If things are getting really uncomfortable for you at work then give ACAS a try – it stands for the Advisory, Conciliation and Arbitration Service.
ACAS provide information, advice, training, conciliation and other services for employers and employees to help prevent or resolve workplace problems. Their employment experts will advise you free of charge and in total confidence.
And remember...
Always remember there is no reason to feel bad about the situation you find yourself in through no fault of your own.
The law is there to protect us all, so we don’t have to choose between our job and our loved one.
None of us are perfect – we’re all trying our best under very difficult circumstances, so remember - you’re doing a great job.
Advice for people living with dementia
If you have dementia and are still working, read our employment booklet for more advice.
Paul Townsley
saysHelen
saysHi Helen, we're very sorry to hear this, it sounds like a really difficult situation for you and your family to be in. Please know you're not alone and we're here for you.
We'd recommend calling our Dementia Connect support line on 0333 150 3456 and speaking with one of our trained dementia advisers. They can answer any questions you might have and provide information and support that's specific to your situation. More details about the support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line
We hope this helps for now, Helen.
Alzheimer's Society web team
Laura Campbell
saysThank you for sharing your experiences, Laura. It's lovely to hear you have those special moments to treasure with your mum.
You might benefit from joining our online community, Talking Point. It's the ideal place for carers and other people affected by dementia to share their personal experiences and offer advice and support to others going through similar situations. You can browse the conversations within the community or sign up to participate for free: https://forum.alzheimers.org.uk
And if you ever need to speak with a Dementia Adviser to discuss your situation or if you're seeking advice and support, please call our Dementia Connect support line on 0333 150 3456. (More information on opening times, and other methods of contact, can be found here: https://www.alzheimers.org.uk/dementia-connect-support-line)
Alzheimer's Society blog team
Kate Crowe
saysWe're very sorry to hear this, Kate. It sounds like you are going through a very stressful time. Please know that you aren't alone, and we are here for you.
We'd strongly recommend calling our support line on 0333 150 3456 to speak with one of our trained dementia advisers. They will listen to you and provide specific information, advice and support that's relevant to you. You can find more details about the support line (including opening hours) here: https://www.alzheimers.org.uk/dementia-connect-support-line
We hope this helps for now, Kate. Please do call our support line.
Alzheimer's Society blog team
Kate
saysBoth 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.
Hi there Kate,
Thanks for your comment, and sorry to hear that you have been struggling. It sounds like a really difficult time.
We'd strongly recommend calling our Dementia Connect support line on 0333 150 3456. One of our dementia advisers will listen to you and can provide information, advice and support tailored to you and your parents.
We also have some information on our website about benefits for people affected by dementia, and things to think about when navigating the cost of care:
https://www.alzheimers.org.uk/get-support/legal-financial/benefits-deme…
https://www.alzheimers.org.uk/blog/how-to-navigate-social-care-system-d…
I hope these are helpful, Kate, and please do call our support line if you need more specific advice and support.
Take care,
Alzheimer's Society website team
Laura
saysI 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 Laura,
Thanks for getting in touch. We're really sorry to hear about your current situation - it sounds like you are having a tough time.
We'd strongly recommend contacting our Dementia Connect support line. When you're feeling this way, it's really important that you look after yourself, and our trained dementia advisers can offer information, advice, and emotional support which you might find useful. More details about the support line, including opening hours, can be found here: https://www.alzheimers.org.uk/dementia-connect-support-line
You might also benefit from connecting with other people affected by dementia within our online community, Talking Point. Here, carers and other people affected by dementia share stories, advice, and offer support to others who may be going through similar situations. You can have a browse of other people's experiences, or sign up for free here: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…
I hope this is helpful, Laura - please do take care and don't hesitate to call the helpline if you need to.
Alzheimer's Society blog team
Lisa Kenny
saysHi 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.
This sounds like a really tough situation, Lisa. We'd recommend calling our Dementia Connect support line on 0333 150 3456 to speak to our dementia advisers. They can listen to your situation in more detail, and provide dementia information, advice, and support specific to you. They're available seven days a week: https://www.alzheimers.org.uk/dementia-connect-support-line
We hope this helps, Lisa.
Alzheimer's Society blog team
Tracey Maund
saysThank 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
Gail Elliott
saysI 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 Gail,
We're really sorry to hear this.
We're here for you if you need support or advice.
Please do give our Dementia Connect support line a ring on 0333 150 3456 and one of our amazing dementia advisers will be able to offer you advice.
Best wishes
Simon
saysHi 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.
Julianna
saysHi 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.
Mark Hatzer
saysDear Julianna.
Apologies for the delay in replying to you.
I was so very sorry to read about all your problems. From what you have said, I feel sure you must qualify for some sort of financial support. Please check out this link : -
https://www.gov.uk/carers-allowance
You may be entitled to the higher rate of Carers Allowance in view of your circumstances. Unfortunately even the higher rate is not a fortune but, it is a bit of a help, & it may make things a bit easier for you.
I think you would benefit from specialist legal advice & in the matter of your entitlement to benefits. Some solicitors specialise in this area – try to find one local to you who can offer you a free initial consultation with a view to putting you on the right track. Or try using the “Contact Us” section of the Alzheimer’s Society’s website – they are a really useful resource & they will be able to point you in the right direction.
I hope things improve for you & your family very soon.
Mark.
Amanda
saysHi 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.
Hi Amanda,
Thanks for getting in touch. I'm really sorry to hear about this situation with your mother - it sounds really difficult.
If you haven't already, I'd strongly recommend contacting our helpline to speak with one of our Dementia Advisers. It's really important that you look after yourself when you're feeling this way, and they can offer information, advice and emotional support which you may find useful. You can find the contact details here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Some people also find it useful to talk to other people going through similar situations. If you think this would be helpful for you, you can connect with others on our online community, Dementia Talking Point: https://forum.alzheimers.org.uk/
I hope this is helpful - please take care and don't hesitate to call the helpline if you need support.
Best wishes,
Alzheimer's Society blog team
Need help
saysJust 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
Hi there, thanks for getting in touch.
We're sorry to hear about the difficulties you've recently faced.
A person with dementia might walk about for a number of reasons - we hope this section of the website will prove helpful: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/wal… This information is also available as a free downloadable factsheet: https://www.alzheimers.org.uk/media/16676
For further information and advice, please call our Helpline to speak with our expert advisers: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Additionally, please join Dementia Talking Point to chat with other people affected by dementia: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…
We hope this helps.
-
Alzheimer's Society blog team
Shirley A Drake
saysThank 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.