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Give up work to care?

Discussion in 'I care for a person with dementia' started by badger30, Mar 6, 2019.

  1. badger30

    badger30 New member

    Mar 6, 2019
    1
    Hi,
    Has anyone ever made the decision to give up their job/career or reduce their hours or take a career break to devote more time to caring for a loved one?
    I need to increase my Dad's carers to twice a day and putting the cost aside, I know I can at the moment do a better job myself. However, I know things are likely to get more difficult in the future and would welcome anyone's advice who has faced a similar quandary.
    Thanks in advance.
     
  2. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,547
    Hi @badger30 I gave up work a year ago to look after dad but it was necessary as I was a complete wreck and could not cope.

    Yes I saved dad from paying for carers and eventually going into a care home but it has cost me enormously financially. I agree I have done a better job than paid carers could have done.

    If you do give up work make sure that you have some kind of income because carer's allowance is rubbish and I had to fight to get that.

    Do you have any other family members that could help you continue to work by helping out here and there.

    A year ago I was able to go home at night and dad was not too difficult to care for. Now it is 24/7 and it will not get better with time .

    Only you can decide but do think about it first. My job was rubbish really but if it had been a decent career I may have thought differently.
     
  3. Tin

    Tin Registered User

    May 18, 2014
    4,826
    UK
    Five years ago I gave up work to care for my mum. Financially we were ok, although I did not think too much about my own future I was aware that I would face some problems. Mum died in November 2018 and i had to face up to the reality of no income and at 64 having to look for some form of employment. I am living off savings at the moment, but disappearing fast. A small inheritance will come to me sometime in the future, but it is only a share of the sale of a bungalow and that is not happening fast!
     
  4. canary

    canary Registered User

    Feb 25, 2014
    10,531
    Female
    South coast
    I took early retirement 3 years ago as both mum and OH needed caring and I was on the brink of a nervous breakdown.
    I took a reduced pension and fortunately the house has no mortgage, so we can survive on my pension, OHs benefits and carers allowance. It does mean that I will never have the pension that I would have had if I had continued working until I was 66 (Im 63 now), but as @Sarahdun said - we dont spend much money on things like clothes, going out or holidays.
    My biggest problem is social isolation and coping with him 24/7
     
  5. lis66

    lis66 Registered User

    Aug 7, 2015
    260
    Hi bagder30 I'm in the same position as you I've been off work since January since dad was admitted to ICU and mum with AD stayed with me ,I really don't know what to do ,they are both back in their own house with carers four times a day ,plus I'm there everyday also and running errands as dad hasn't went out on his own yet I can't afford to give my job up ,them being in the house is an accident waiting to happen ,and if I go back now I cant take time off again it's so hard to know what to do for the best
     
  6. Juliematch

    Juliematch Registered User

    Jun 24, 2017
    79
    Hi badger30. I gave up work 18 months ago to look after my dad who lived with us.I was close to carers breakdown trying to juggle work,careing, babysitting a grandchild and something had to give. Being around Dad all day everyday was so hard.I seemed to spend all my time trying to keep him occupied .I so missed the company of my work mates .I felt isolated and didn’t have any life of my own. Everything revolved around him.Dad has now gone into a care home and as I’m only 59 will have to start job hunting again. I miss him so much but I am now his daughter, not his cook, cleaner, social secretary, nurse,etc. I have lost my confidence (in the world outside of dementia ) and I am finding it very hard to make myself go out. What ever you decide , don’t forget to have some time for you , out of the caring role and keep posting , it’s a great place to get advice. I wish you well in whatever you decide .
     
  7. Amelie5a

    Amelie5a Registered User

    Nov 5, 2014
    88
    Scotland
    I didn't actually give up a job to look after Dad - but he was very much part of my thinking when I stopped work for other reasons.

    Dad was diagnosed early in 2014 and doing OK without much support. But towards the end of that year I was able to take early retirement, aged 59. I'm lucky enough to have a private pension but it was clear Dad was going to need more and more support and I'd resolved I wanted to be around for him.

    Throughout 2015 I had plenty of me-time, got to travel but also found myself spending more and more time with Dad who lives 150 miles from me.

    Come the end of 2015 Dad had an accident and I found myself staying with him almost full-time.

    But what I never anticipated was how long my commitment to him would be. I'm still caring for Dad in his own home and rarely get to my own. His dementia has definitely worsened but he's content still in his own 'space'. His overall health has deteriorated too. But still we plod on together.

    Dad is almost 92 now and who knows what the future holds.

    So based on the above, my random thoughts are : it's 'easy' to slip in to caring, turning your own life upside down in the process. There's some kind of catalyst - in Dad's case, the accident - and the human response is to step in and provide more support. But the demands just keep on growing, and bit by bit, you give more and more of yourself to the issue.

    You could be facing a very long road ahead. Maybe weigh up how will you be affected financially if you're still caring 3,4, or more years down the road?
    Of course, everyone's dementia journey is different. But in Dad's case, on we go....
     
  8. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,547
    Yes as @Amelie5a said it is very easy to slip into caring for a parent and then it is all engulfing and you can find yourself doing much more than you ever expected and who knows for how long.

    I know that if dad has another incident that causes a downturn in his dementia then it will almost certainly be a care home for him as I don't think I could cope if he gets too much worse.

    I am 62 years old and won't get a pension until I am 66 but I will get the full pension because I topped up one year with a small amount. It is still a long way off though and the thought of job hunting is not something I would look forward to, I don't look forward to signing on for job seekers either.

    I never expected to be in this position at this time of life and it is hardly my fault but it is what it is.
     
  9. Fullticket

    Fullticket Registered User

    Apr 19, 2016
    462
    Chard, Somerset
    I was made redundant at a time when mum needed caring for full time, so I moved her in with us (partner's agreement obviously!), we moved house 160 miles away to accommodate a downstairs bedroom and bathroom and so had to make new friends and start a new life.
    Fortunately I kept up a part time job I did from home as I did not have state pension coming in at the time.
    Fifteen years from starting to care for her in her own home, five years down the line from moving and mum has died. Would I have done things differently given the chance again?
    No need to think it through seriously as it will never happen but the things that impacted on me the most were:
    How long is this going to go on for? You can love someone to bits but the daily grind of it getting worse and worse and not seeing any light at the end of the tunnel is, to put it mildly, depressing;
    Not having that eight hours at work when all you could think about was work so letting all the anxious thoughts/decisions tick away in the background;
    The endless to-ing and fro-ing with social services, the council, etc and the total lack of communication between the various agencies;
    Being 'allowed' a certain amount of weeks of respite but not being able to take them because the care home didn't have any beds you could book in advance, so respite became a phone call, an offer of a bed for a week and a quick shoving of things in a suitcase;
    Not being able to plan a holiday (see above);
    Not being free to go for a walk (and so piling on weight), meet with friends for a simple coffee, etc.
    Looking back at that lot of whingeing (!) I probably would have done the same as who can abandon a parent/partner in need?
     
  10. pitufi

    pitufi Registered User

    Nov 29, 2015
    49
    London
    I’d say look at your own situation first. Do you own your own house, are you able to live off savings if need be, now or after they pass. Will you have money come your way thru somehow? Can you afford to give up your job for however long.

    I cut my own hours to less than part time at work, I am self employed, to take care of mom for as long as I could before she had to go into a care home and I hadn’t assessed my own situation beforehand. I had very little savings, no property, my mother had none either so I couldn’t look to that to help me eventually either.

    It wasn’t the wrong choice for me at the time but looking back at how much I sacrificed without thinking long term ... I haven’t really regained my finances back and doubt I will for a very long time if ever to be honest. My mom is safe and happy in her new care home and my life has regained some sort of normality in recent months now that’s she’s settled at her new home.
     
  11. gotanybiscuits?

    gotanybiscuits? Registered User

    Jan 8, 2017
    1,014
    Male
    the beautiful south
    As above, so much depends on your personal situation.

    I've given up work, & moved-in with my Dad.
    I lived 2hrs away, & visited for 2.5 days every weekend; morning/evening carers were already employed.... but I was still getting phone calls from the Police, at all hours, regarding his whereabouts & allegations.
    I was put in an impossible position at work, & (lotsa extra background too!) ended-up having a breakdown two years ago. Dads needs seemed to dominate my 'recovery', so I simply didn't resume work when my sick leave finished.
    If I'd had a large/strong network of friends, or my employer had made me an amazing offer, then maybe I would have taken a different path. But I don't believe Dad was ready to be put in a Care Home back then, & I'm sure that this house is still the best place for him now.

    No real plan for the future, just taking it as it comes!
    Yes, I'll need an income when nature has taken it's course, but at the moment - every day's a challenge.
     
  12. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,178
    Female
    Chester
    My mum had a crisis just over 5 years ago and clearly couldn't return to her house, she had been a hoarder for all of my living memory, had turned the electricity off a least 18 months before crisis (police were aware and said she had capacity and it was her choice - my opinion of that is a whole different story).

    She was staying with me for christmas anyway (she got lost driving to my house) so that bought us initial time to find solutions. Initially I thought about finding her somewhere to live near to her house, as she had a strong social circle that would have provided support, assuming she let them, but quickly realised that I would have to go down at least once every two months (I was assuming at this stage my brother would share this load) and additionally for all medical appointments between us. It would have been a 7 hour round journey, and with children aged 8 and 12, with massive commitments to the older ones sporting interests, I couldn't have done it and carried on working. She then alternated between myself and my brother for a fortnight at a time and due to our children and her behaviour with them, this was hard going.

    Mum wanted to live with us, we do have a spare bedroom, and that is where she had slept over Christmas, but this clearly wouldn't work, as she just didn't understand how the kids lives worked, partly due to living in the past (not sure this was dementia - she was like that when bringing me up) and partly not able to be age appropriate with them in grasping what they do (eg treating 8 year old as a 5 year old). I might have considered it if the kids were no longer at home.

    I had little knowledge of dementia at the time, but given she had clearly had issues for at least 3 years and probably 5 when she could have been diagnosed, I assumed she might deteriorate quite rapidly.

    I found her a flat in a sheltered extra care social housing complex, and it was an initial big upheaval for her, but once settled she loved it, and was aware enough to thank me for finding somewhere so nice. I still do her shopping, and pop in once a week and take her to all her appointments but she doesn't live with me. She joined in all the daily activities, and loved them, and got to know all the team of carers, this means as she has slowly deteriorated the carers know her well (she is in her own flat, and started with 2 15 minutes morning and evening med prompts, she is now upto 10 hours of care a week, getting herself to the restaurant downstairs for meals).

    She is far happier in her own flat than she would have been sharing a house with just myself and my husband, she has her own space which she enjoys.

    5 years down the line she has deteriorated but is still relatively mobile (she uses a frame but her knees were shot with arthritis anyway and she needed an op at time of crisis) and doesn't need much personal care (a weekly shower prompt which isn't always successful), with carers providing meds and ensuring she has meals - she still sorts out her own breakfast. I had expected her to need a care home by this stage, so I am now wondering if she has another 10 years or more to go. Her health is much better as she is in a safe well heated environment, doesn't have access to out of date food, has regular Drs appts and takes all her medication. She lost a lot of weight just before the crisis, I think due to food poisoning, and this ironically improved her overall health status, with lowered blood pressure and she became more mobile initially as there was less weight on her worn out knees.

    She has accepted the choices I made for her, whereas if she was living here she would have argued and got very cross and nasty if things weren't done her way, and this would have left all of us with a poor quality of life.

    Before giving up work, think about how long you might be doing this for, are there any other solutions - sheltered extra care is a good halfway house, which actually can considerably delay a move into a care home, try to arrange day care so you do get some time to yourself, and find sitters, from reading TP the sooner outsiders are introduced the easier it tends to be.

    I was 45 when the crisis happened, and never thought mum would be so well now. Is this what your parent would want - you sacrificing your life for your parents.

    Personally I have lost several years when I had expected to have free time to myself, spent clearing mum's house, and running round after her, everything I have done has eaten into 'my time' just as I expected to get more as children became more independent, and even though she doesn't live with me I am well aware my quality of life is much poorer than it would be if she hadn't got ill. I am less fit as I get less exercise, I abandoned one of my sports, which I had continued as a hobby - although hope to return to it. You will spend a lot of time looking after a parent even if they don't live with you.

    For me the bottom line is mum is actually happier having not living with me than she would have been and I have my life still, my kids have their childhood, mum actually understands I have my life and is aware enough to want this for me. The decision was made easier as it wasn't an option to get her back in her house, and also from working with many housing associations I was aware of the support offered by sheltered extra care (not sheltered) and this was my first port of call when looking for something for her.

    I just wanted to write a perspective of someone who didn't go for the live with parent option. I apologise for it being a bit disjointed.
     
  13. Whisperer

    Whisperer Registered User

    Mar 27, 2017
    91
    Male
    Hampshire
    Hello
    There have been a lot of good posts on this thread but this is my experience.
    1) I had a fairly demanding and stressful job, mum was going downhill fast, I suspected from being alone all day and not eating or drinking adequately. The blood tests showed impaired kidney function was getting worse, her mental confusion growing, etc. I took the decision to give up work in April 17 hoping to get some part time work to fit in around looking after mum. In November I got a seasonal job in retail working two nights a week, which luckily became permanent and at only six hours per night let’s me work around mum. I had paid in enough to get a full state pension, had saved into a private pension all my life, had no dependants or partner to consider. In short the ideal position to decide to care for someone I really loved. Her condition has improved somewhat, now eating and drinking adequate fluids, medications are taken correctly, kidney function improved. The dementia advance has slowed but is still there at a reduced rate. A positive result but anyone considering giving up work or reducing hours worked please consider the points below.
    2) Crucially are you doing this for a loved one or because you feel you have to? Be brutally honest with yourself. Dementia will ruthlessly expose any prior weaknesses in a relationship. Giving up income, potentially reducing pension entitlements, saying goodbye to a social life, increased feelings of isolation, etc, may cause resentment to develop in you if care is based on obligation not love. Caring in the later stages of dementia grows in demands on the carer, emotionally, mentally and physically.
    3) Research what dementia can lead to and be clear in your own mind where your cut off point is? Being repeatedly asked the same question, being treated with suspicion by the PWD, increasing mobility issues, etc. No two Dementia sufferers are identical but there are fairly broad stages of the illness. Think carefully on what you may well face. I have read widely, used this forum, undertaken Future Learn related courses, joined a Carers group, etc, but only now start to really understand what this illness is about. I have no relationship distractions and will help my mum all I can. My luck at one level having only me to consider. That said isolation is the downside. It snaps two ways. That said I have met some other wonderful Carers. The care group has a rule ”what is said in the room stays in the room”. Meeting them has given me far greater insight into life, people, etc, in a way I never would have experienced without caring for my mum.
    4) No one can care for a PWD on their own, certainly not in the later stages. At some point you will need to reach for outside help. Be realistic in what you can bring to the situation. Are there any siblings who can share the load?. If so get it clearly agreed what support they will give now and increasingly in the future before giving up work. Otherwise you may find they “fully appreciate all you are doing”, but effectively put everything on you. They keep their full salaries, holidays, relationships and could arrive to give you the “benefit of their wisdom” on a subject in reality they know virtually nothing about. There are plenty of threads here about absent siblings (often referred to as helicopters). It happens and can cause bitterness and resentment in the carer.

    Please understand I do not regret my decision. My part time job gives me a significantly reduced income, works around mum, an outlet outside the caring role. My siblings help if required. My pension position was good. I had no other relationship or child responsibilities, I really love my mum and wanted to help her. My position was pretty ideal to take on a caring role. Not everyone starts from that base. My mum now has virtually no short term memory, no understanding of her reduced mental capacity, asks the same questions repeatedly each day, relies on me to make her world work, not really understanding that reality so I get virtually no thanks. I accept that is due to her illness and I accept harder days will come in the future. I am grateful I can care for her. Torn between caring and a partner or children would make matters much harder. The emotional demands of conflicting situations would be difficult to balance.

    Please do not let me put you off caring by reducing working hours possibly to zero. Just think carefully. I now stack shelves but I walk out of the job at 5am with no baggage. My prior work preparing projects, working adhoc hours just made caring as required impossible. What are you willing to take on, what are you willing to give up beyond a pay cheque, brutally honest are you doing something you may resent having to do? Park the guilt monster and think logically. It maybe the last chance you get. Whatever you decide I hope the future works out okay. Sorry for the long post but it may help others in the future, as well as giving you food for thought. Taking a caring role on is a deeply personal decision. There is no right or wrong answer, just what will work for you in your unique circumstances. No two PWD are identical, I have often read. I would add no two Carers are really identical.
     
  14. mancmum

    mancmum Registered User

    Feb 6, 2012
    388
    Check and double check any financial calculations. I had thought I would have my occupational pension and counted on it. I gave up paid work to care for my father for 5.5 years. Turned out despite having made contributions I have been denied access at 60 to my pension. Also my husband has developed a different degenerative condition and we don't have the retirement we planned. Just saying you can plan and plan but sometimes life doesn't deliver what you planned. However, we did do it for 5.5 years having seen how he has deteriorated since going into a home and I know we gave him 5 + good years. My son has a job as social worker because of it. My kids learned about what a family can do for each other. But I never want them to do this for me.
     
  15. Karen200

    Karen200 New member

    Dec 14, 2018
    1
    Hi, I gave up my Job to care for my mum four years ago I was a trained nurse as I worked in various nursing homes I did not want her to go into a home so I moved her into my home she is 91 years in May she was diagnosed five years ago. I do have concerns as when my mother eventually dies I will have to go back to work as I am single and 56 years and live rural place jobs are not easy to get. I am now off the nursing register but I do know I don’t want any caring type of work. Yes we are saving the government a lot of money by looking after our families but it comes as a great cost. I suppose their is no point in being concerned at the moment thanks for listening..
     
  16. buttercups

    buttercups Registered User

    Dec 31, 2015
    22
    Hi Badger30,
    I dropped my working days to care for my mum, who now lives with my husband and myself. I now work two days a week.
    My job which I always took pride in, now takes a back seat and I often go into work absolutely shattered from sleep deprivaton, lucky if I've showered and out make up on. Which is not like me! I am exhausted.
    Mum's been with us for a year now and it's been the hardest year of our lives. Mum is very bad, agitated, disruptive demands attention. Unbelievable BUT o wouldn't have it any other way. She was a lovely mum and I couldn't see her in a nursing home.
    Plan b might arise and we might have to put her in my, nobody knows what's round the corner and it could make me or my husband Ill.
    But we will plod on. It really is a long horrendous disease and there is no easy answer.
    Good luck with your decisions.
     
  17. Einstein's bicycle

    Einstein's bicycle New member

    Jun 20, 2019
    5
    Hi Badger30,
    I am now month 4 into a career break and have discovered that I am homesick for my own home, husband and children. I do not live on mainland GB, so travel is significant and I thought a career break would simplify things. Mum, 87, with Alzheimers, broke her hip at the start of my career break so I then thought this might give a time limit. She is now recovering well and I find I cannot spend the next unknown number of years with her in the old family home. I am putting carers in and am likely to bale out, and maintain my easyjet flight club status instead.
     
  18. canary

    canary Registered User

    Feb 25, 2014
    10,531
    Female
    South coast
    Hello @Einstein's bicycle and welcome to DTP.
    We can only do what we can do. Caring doesnt just mean the hands-on stuff, it means making sure that they are kept safe and looked after. Im glad you have managed to get carers in.
     
  19. MrsV

    MrsV Registered User

    Apr 16, 2018
    97
    #19 MrsV, Sep 12, 2019
    Last edited: Sep 12, 2019

    Hi Badger,

    Mum has dementia and is 83, and lives alone. There is only my sibling and I, we both work full time as do our husbands, we have our own families, I'm a new grandma and want to spend time with my grandchild too, I don't want to be robbed of that time, its not fair to expect me to. Not to mention we still have our mortgages to pay, mine for another 10 years. So giving up my decently paid job that I enjoy isn't possible. I'm trying to build up my pension so I have some sort of decent retirement (years of being contracted-out, plus the great State Pension rip off of women born in the 1950s having to work 6 years longer means its impossible financially). So in our own situation, with the best will in the world Mum will have to have carers coming in, until the money runs out, and when the time eventually comes move into residential care - then the battle with who pays for her care will begin as we own mums house, but that's another story. You also have to think of yourself, your health, and your wellbeing, your relationship, your children etc. Also you are entitled to your own retirement, and enjoying your later years of your working life. Its quality of life too. A tough choice for you I guess, not easy. From what I've read on here, other peoples experiences of dementia, it appears that it can consume your life, sacrificing the last of your middle years, your relationship could suffer, and the sheer workload that people have to endure sounds terrifying.
     
  20. MrsV

    MrsV Registered User

    Apr 16, 2018
    97
    Good for you.
     

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