working and caring - help!

Discussion in 'ARCHIVE FORUM: Support discussions' started by egg, Aug 2, 2004.

  1. egg

    egg Registered User

    Jul 31, 2004

    Thank you to all of you who replied to my first message.

    Now Question Two – this is my big problem at present ( I do realise that it probably does not seem big to many of you as many of you are coping with much much more difficult circumstances than I am) but still what I do about this one could have big effects on us all as a family.

    To recap (in brief) – I am 52 my hubby is 51 and has been diagnosed as having Alzheimer’s. He ahs been unwell for five years and not worked and was originally diagnosed with ME (that’s another story for later). So I am the wage earner.

    Now my problem is

    Whether or when to give up work?

    His first reaction was to want me to give up work quickly so we could have some quality time together before his health deteriorated. However that would mean a serious drop in income and also all my friends keep saying things like ‘don’t do it until you have to, you need work to keep you alert and interested etc’.

    My husband does not need me at home to look after him continuously at present but when I am at home he has a better quality of life as I can drive him out, organise cleaning or gardening together, etc etc and also we would like to visit a few places in Great Britain before his health deteriorates.

    The other problem is that as a teacher, the holidays are fantastic and thank God his diagnosis came just before the big holiday, but in tern time it is a nightmare as I work very long hours at school and then spend a lot of my evenings and weekends working as well or exhausted. I struggled through the last few weeks on pure will power. Since last September I have gone to work nearly every day feeling either stressed or ill or exhausted – can I go on like this? The quality of emotional support and physical support I can give my hubby in term time is poor. And if we have a ‘crisis’ like the lost spectacles or the telly tuning late at night it gets even worse.

    The issue is further complicated by having a 22 year old and a 17 year old living at home both of whom need some support from me for reasons I won’t go into. And a mother and mother in law in 80’s living 100 miles away (although they are quite independent at present).

    So sorry to ramble on but it is such a relief to pour all this out –

    Does anyone have any experience of how to cope with working and caring?

    Should I take some time off and ‘travel’ before it is too late?

    Should I consider part time work?

    If anyone has cared and worked I would really appreciate hearing how you coped and managed the situation.

    Has anyone been a position to ‘fulfil some dreams’ before the person they are caring for ‘s health has deteriorated?

    All suggestions would be appreciated and thank you for your time for reading all this!

  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    #2 Brucie, Aug 2, 2004
    Last edited: Aug 2, 2004
    Hello Egg

    The problems of partners of younger people with dementia - particularly the problem of needing to work - are rarely addressed anywhere.

    After Jan's symptoms became really evident and started affecting our lives [around 2003] - but before I made the diagnosis [around 1994] and way before the medical mob each had their turn at checking her out, ending with a diagnosis around 1998 - before that time, I did several things.
    • I told my boss at work, who passed word to his boss, the Managing Director
    • I said I wanted to keep working [no other choice at that time] but said I wanted to vary my hours from a rigid 9.00am-5.30pm; this was agreed
    • Later, I reduced my time and pay to a 4 day week.
    • Later still I simply worked from home and, as Jan's condition worsened, I did less and less work, and more and more caring
    • at the end of her time with me, before she went to the care home, there was 6 months when officially I was working, but I actually did an absolutely minimum - like maybe 30 minutes a day. The company knew this, but were very supportive [The MD's father had died from Alzheimer's and the caring had nearly killed his mother]
    I appreciate that, as a teacher, you will probably not have the leeway I had.

    I found the personal contact and support from colleagues at work helped me greatly when I was getting no support from anywhere else! The money kept us going, too.

    If you can do [and afford] switching to part time teaching, then that might be a good option.

    Jan and I did make two final annual holidays together, one in a 5* hotel in Crete, and one in our favourite destination, the Caribbean. Both were very stressful for both of us as Jan had started to forget where she was, and how to use cutlery, and could never find her room, etc. I was scared for her all the time and could never rest.

    Also, on the final holiday, we were fine flying to Barbados when we had 3 seats to ourselves, but when I asked, prior to flying, if it was possible to do the same on the return if there were seats available - and I told the holiday rep about Jan's dementia - she was alarmed and said "for goodness sake don't tell Virgin as your insurance won't cover it and they may not fly you back. " So we just said Jan was scared of flying and all was ok. That was our last flight together. A bit poignant as it was our 32nd anniversary that day and the flight crew gave us champagne.

    So, should we have done those last holidays?

    Yes. Wring every last ounce of value from your time together.

    When and if your husband starts having problems such as sundowning, or falling, or confusion - that is the time when you will need to escalate your ideas regarding full time caring, or whatever else is possible.

    P.S. I see from Magic's response there is another interpretation of your message about seeing things. I never wanted to travel without Jan, so the thought that I might see things unseen previously, while Jan was at [a] home never crossed my mind. I was in a very different situation from Magic!
  3. Jude

    Jude Registered User

    #3 Jude, Aug 2, 2004
    Last edited: Aug 28, 2004
    Dear Egg,

    It seems very sound advice to opt for part time work as your next plan of attack. That way, you'll still have some income and also more time to spend with your husband. Also, less worry and stress for you at work.

    You can't spend quality time at home if you are exhausted and there aren't enough hours in the day to do all the things that you are trying to do at present. Sooner or later you'll crash and that won't help either of you. You need to be fighting fit to cope! We are of a similar age and I just can't imagine how you can possibly cope with all the rushing around. You may also find later on, that your husband suddenly needs a lot more care. If this were to happen in the middle of term time, then you'd be stressed to the max.

    I know how hard teachers work - my father was one for 40 years. Opt for the 'happy' medium at the moment and see how things pan out later.

    Best wishes, Jude
  4. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    South Coast
    Dear Egg

    My husband's AD first showed up when he was in his early 50s (he's 61 now). When it became obvious that there was a real problem and he could no longer continue his professional work he was 55 and I was 54 years old.

    I was working as Director of an Arts Centre, a busy and stressful job with long and variable hours (sometimes didn't get home until midnight or later if we had a show on). How I managed to cope with the job and the grief I don't know - we also had 2 sons who at the time my husband gave up work were 21 (at university) and 19 (just about to go to uni).

    I carried on for another two years because I couldn't think how we'd manage without my earnings, but 6 years ago it became clear to me that I had to stop working to be with him, as life was too difficult for him at home all day.

    I looked into Carer's Allowance (pitiful) - he was already getting Incapacity Benefit and DLA - and realised that it wouldn't pay the mortgage and Council Tax as well as food, so decided that we would have to sell the house and move to a smaller one in not such a nice area, pay off the mortgage and have a little "nest egg" for emergencies, which I did a few months after I left work.

    I don't regret doing this at all, although money has been tight, but I did do one thing I am really pleased about - I booked a few days holiday in Florence the week after I stopped work, as my husband loved art and architecture and he really enjoyed it, although the memory of it is gone now for him - but it is still vivid for me.

    We managed somehow, and the time we spent together when he was still able to enjoy things and before his behaviour became too difficult was very precious.

    Alas, last year he deteriorated more quickly and finally (aged 61)was admitted to an "Elderly Dementia Assessment Unit" in an NHS hospital 20 miles away, where he remains as his behaviour is sometimes unpredictable and aggessive, just the opposite of his real nature.

    I thought that life was no longer worth living for some while, but after 3 months had started to come to terms with it, and coincidentally was offered a part time job related to my previous work, which I have done just over 3 months now. I still weep at times, and will always miss him, but visit 3 or 4 times a week and have occasional happy moments with him when I catch a glimpse of how he was.

    Unfortunately my health has taken a nosedive in the last 2 months and am now probably facing a major operation and other treatment which means that I may not be able to visit him for quite a while. I'm not surprised really, as the levels of stress and grief have been enormous for nearly 10 years now, and I guess it takes its toll somehow. I've had to give up the job, which I was enjoying and which was doing me good and helping to raise my spirits.

    Life's a bitch, so I would say take all the chances you can to enjoy your husband's company. Don't try to hang on to life as it was, just do your best with every day while you can. It may mean "downsizing", but actually I've found that is not important in the great scheme of things.

    You may feel that you don't want to make a decision now, but it will probably become clear to you when the time is right, but don't leave it too long - it won't do you or your husband any favours. I think the previous advice about gradually reducing your work hours if that is possible is good advice.

    Kind regards

  5. susie

    susie Registered User

    Nov 30, 2003
    Hello Egg
    I've been having the same thoughts myself about giving up work to make the most of our time together before the illness takes over completely and also to give me some time to catch up on all the maintenance jobs that David can' t do round the house. The big difference is that I am only part-time and due to retire in18 months. As he can be very very trying, I've decided we'll enjoy the time more if we have our own space. so I'm continuing to work but may reduce to 2 days if he needs more supervision or I'm finding coping difficult. Before you make the decision, do think about your pension contributions so you won't be worrying about money when you are further down the line with the illness.
    As a former teacher. I can appreciate the hours you are working and the exhaustion. Like all the other replies I'd say investigate all the work options open to you,supply work, home tuition or is private tutoring an option? What is a house but just a place to sleep in ,so what Ruthie did in moving may be an option for the future. The trouble with this illness, is we don,t know just how long we have of reasonable time left.
    When you've weighed up the options,if you still have doubts about working,give it up as you'll always think if only we'd had some quuality time together.
    Enjoy your summer holdays
  6. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    Endless dilemmas

    Dear egg,
    I have no idea how you manage to juggle a full-time teaching job with all your other responsibilities!
    I find my 'part-time' job a struggle (I leave at 8am and try to get back by 4pm), and I spend all my time away from work with my husband (who has AD). I have been secretary/bursar in a local village school for over 17 years. I have been
    the 'breadwinner' since my husband retired 9 years ago, but with our 20-year age gap, that was always on the cards, and never presented a problem. However, whereas I used to look forward to the school holidays so that I could 'attack' all the jobs at home, now I have to hold back, because my husband gets cross when he sees me doing jobs he feels he should be doing (but can't, because DIY and problem-solving does not exactly go hand-in-hand with AD). What's worse: during term-time, he copes reasonably well with his own (very slow) routine, but even a few days' holiday causes havoc, and last September, he could not cope at all once I went back to work.
    I am reluctant to give up work, as I feel that the more I am around, the less Tony is forced to 'fend for himself'. I am hoping that in due course, I may be able to reduce my hours in order to be a little bit more available during the day. At the same time, I had envisaged that, perhaps, he could be encouraged to attend a day centre while he is still reasonable active, and that would give him external stimulation which I would not be able to provide if I were at home with him. After over 12 months of writing letters and pestering the surgery, the CPN, the local Unit for the Elderly, etc., Tony was, at last, invited for a 3-day assessment (on 3 consecutive Mondays). They must count among the very worst days of my life: the confusion, the anger, the questions, the ups and downs - I am exhausted, and sad to say that he refused to attend on the 3rd Monday, was re-invited today, and refused again. He forgot from one Monday to the next what it was all about, in spite of the fact that he had had a great time on the 2nd day, and he held on to 'the devil he knows', i.e. his own routine, instead of venturing out with people he doesn't know into an unknown situation.

    I realise that now, I have rambled, and probably not answered your question at all, except to highlight that the dilemmas are all around us, and one of the saddest things for me is that my mate and partner is not 'there' for me any longer to help me solve problems and make decisions. :(

    Perhaps your best compromise may be 'part-time', providing your head and governors will let you .....

    Best wishes, Carmen
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Wasp it all about Alfie?

    Isn't it a classic illustration of the inability and lack of understanding of the condition, of the medics etc dealing with dementia - that they would try and split a 3 day assessment?

    These things are bad enough, and we feel dreadful anyway in putting our person through it. The strain of just getting them to one assesment is enough - to try and do it three weeks running is such a strain for the carer.

    Jan had three assessments [admittedly they were of 2 weeks each - and each of those was absolute torture for both of us] over 3 years and it was just horrible getting her to go to those.

    Bad as things still are, I wouldn't want to have to do that again.

    Now I have other problems - last evening I had a call to say Jan had been stung on the face by a wasp, though she seemed ok. Lots of wasps this year - I had the council in yesterday destroying two really active nests in my roof.
  8. Jude

    Jude Registered User

    Dear All,

    Reading your posts and life stories highlights just how much all of us have to sacrifice and all the dreadfully difficult decisions we have to make along the way. The courage involved to make such decisions and keep going every day is amazing!

  9. Claire

    Claire Registered User

    Mar 31, 2004
    Hi Egg

    I am in a similar position, although I am caring for my Mum, who lives with me. Over the last four years she has deteriorated steadily, which has caused pretty severe problems, especially since giving up work has not been an option, as I need to pay the mortgage! What I can say is that my manager and colleagues have been incredibly supportive, coping with sudden unscheduled absences and exhaustion. Without their support I think I could well have cracked. It is such a relief to be able to talk to people about the whole thing. Things have improved since Mum was found a place in a day centre - she has been attending six days a week, as I work over a six day pattern. She is now in emergency respite care following a fall, and it looks as if it may become permanent. Although I can now get a decent night's sleep and can begin to tackle the things left undone in the house, I feel pretty rotten about having to put her into care. Even in this my workmates are so supportive. Had I been at home without that support network, I don't know what I would have done. If you can work part time for a while it might well give you a good balance in what is always a difficult situation.

    Take care.
  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hello Claire

    sounds like both our employers were great in their support - I wonder how many such places there are. The workplace support network is very good to have!

    I was worried when Jan finally went into care, but apart from a natural wish to have her at home, she is extremely well looked after now, far better than I could have done.

    Don't feel rotten about your Mum going into care - you can concentrate on making her environment and your visits pleasant and at the same time escape the more wearing, constant things that seem so remorseless - and that stretch relationships so greatly.
  11. egg

    egg Registered User

    Jul 31, 2004
    working and caring thanks

    A big big big thank yuo to all of you who have replied to my plea for advice.

    it has been so helpful both practically and mentally and such a support to know that people out there are prepared to spend such a lot of time sending me replies.

    I will reply properly when i can 'sneak' some private time on PC!

    many many thanks in haste

  12. egg

    egg Registered User

    Jul 31, 2004
    thanks and more thanks

    A big thank you

    I have just read all your posts again
    It is a great support to hear how others have worked through many situations that I am going through or approaching.

    Thank you mjaqmac for encouraging us to travel so we are off to Wales next week for two nights (probably not quite what you had in mind!) to see an area that my husband has always wanted to visit and a steam train which is his great interest.

    And Brucie thank you for sharing all those thoughts and ideas. So helpful. I am seriously coming round to the idea of part time. Even my colleague (fellow teacher) who I met up with at school today to do some work in school (teachers do work in the holidays) asked me completely off her own bat ‘what will you do about work? .. so more and more people are saying the words ‘part time’. I need to do sums but maybe the sums will have to fit come what may.

    Also what is sundowning? Sorry to be so thick

    Also I have ordered the book ‘learning to speak Alzheimer’s’ so maybe I will not have to ask so many questions soon.

    Sussie – yes I have telephoned about supply but no moving is out as I think it would completely throw my hubby off course to cope with a new house and a new place and yes the trouble is we don’t know how long we have got to do things but do we want to know? – it’s all lots of different feelings and emotions.

    Carmen – how good to hear from someone who understands the DIY thing and also the difficulty of school holidays becoming yet another repeat of term time with me rushing around doing things and hubby sitting ‘waiting’ for me!

    I am clinging onto some work at present for my mental stimulation and see how things go.

    My head teacher has been very supportive but I think a time will come when it is not fair to the children or school if they have to ‘carry me’ and I would like to be pro-active and ‘do something’ before that situation is thrust upon me.

    Sorry I have rambled on so my apologies to any of you who have ploughed through this lot. It has helped such a lot writing it all down -

    Oh one last thing – I had some sort of posting / email to say Brucie that you had sent me a private message

    - I can’t seem to get to see it so please excuse my apparent rudeness in not having replied.


  13. egg

    egg Registered User

    Jul 31, 2004
    private message

    Thanks Brucie

    I managed to find it

    but now i have lost it again!

    I have taken on board what you said - sorry for any confusion i caused.

  14. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    Hi egg

    please don't feel guilty about your Mum having to go into care. Mum lived with us for 8 years , 5 of them with Lewy Body dementia and went into care last October after a month in hospital following a rapid deerioration in her mental and physical health. I worked part time anyway because I have a young son, but did reduce my hours a little. I clung to my job like grim death, with the backing of our GP, because I realised that even if I did give up there would come a time when I could not manage to look after Mum at home because of her immobility and incontinence and because we need the cash. The period while we looked for a home must have been the bleakest in my life apart rom when my father died. We were lucky to find a nice EMI place with vacancies and Mum now has the constant care she needs, and I was saved from a nervous break down. Sometimes you really do need to put yourself first before your own health goes,
    love and best wishes

  15. Jude

    Jude Registered User

    Dear Egg,

    Glad to hear that you are feeling a lot better about going part time. It really will give you some much needed space.

    Sundowning is what happens to some AD sufferers late afternoon/early evening. It involves wandering around the house becoming agitated, going to the loo 20 times in half an hour and generally getting twitchy. My parents usually start this about 4.45 just before dinner. They usually eat around 5.15pm, so I wonder if it's due to low blood sugar perhaps. Occasionally they start up again just before bedtime, presumably because they are tired at that stage.

    My mother also exhibits similar behaviour in the morning before breakfast, but is fine as soon as she has eaten.

    Hey - don't worry about asking so many questions. I've been finding out about AD for the last five years and still ask lots of questions too. It's the only way to learn!

    Best wishes, Jude
  16. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Hi there Egg - we're just back from holiday and I'm slowly getting round to reading all these posts! I'm in a similar situation to Ruthie as my husband is 21 years older than me. He was diagnosed with AD 3 years ago but we kind of knew that was what was wrong for a while before that. We are very lucky as his progress with AD is very slow at the moment but I know I will be facing the same decisions as you are. I am a headteacher in a primary school and like you work very long hours and the job is to say the least stressful! I have to continue with it as I am the main breadwinner but the main thing about it is that it's because of the job we can still go on good holidays! As long as Bill is able to enjoy being away we will continue to do this. We both know he doesn't remember what happened or what we did but he does still have a real feeling of wellbeing and enjoys what we do while we are there. (We're off to Egypt again in the October hols!) As for travel insurance I declared his AD when we took on new yearly policies and this didn't seem to be a problem. It's even written on the insurance schedule - whereas my nasal polyps aren't covered if I have problems with them !!!

    I know what you mean about coping during term time - we work a system of a large page a day diary in which I note down all of the things Bill has to do during the day! This means that the date is always visible and he goes through the list and ticks them off as he goes. He also writes any messages or notes for me on the page and we look through it when I get back in. So far the system is working well - I don't know how long it will continue but as long as it does we'll use it. I know when I go back to work in two weeks time he'll be a bit more depressed and it will take a while to get going again but hopefully we'll get there.

    I think everyone's situation is so different that what we all decide to do has to be what is best for us. I won't give up work and I can't be a part time HT so I'll keep going until I have to make other decisions.

    Sorry for the ramblings I tend to forget the main thread of the original post when I'm responding!
  17. AngelaH

    AngelaH Registered User

    Jul 31, 2004
    egg: working and caring

    I know just what you mean, but your message should say: paid and unpaid work, because the caring is going to be even harder work (24/7) than your professional work!
    I think you should talk to your headteacher and to your Union (I assume you belong to one?). I was in a similar position to you, three years ago, except that I was caring for my father not my husband, and two years ago I decided (I am a bit older than you) to reduce to 0.7 for two years and then retire early at 60. My father died three weeks ago and I will retire in another two months, so then I will be a retired ex-carer - a novel experience!
    With hindsight, I think I'd have liked to negotiate more flexibility. The last year (I'm a university teacher) has been really hard, with one care crisis after another; in retrospect, I wish I'd negotiated the year off, with the option to return when things got better, but the hard thing is we never know how long the situation will last. Will a term be long enough, or will I need longer? So I don't think there is a perfect solution, but for the sake of all those other carers out there who will follow in your footsteps, take the courage to talk to everyone in officialdom. This problem is one they need to face now, in order to start to devise flexible solutions. While there is talk of postponing the retirement age, we need to make sure that 'caring leave' becomes as much a possibility as 'maternity' or 'paternity' leave!
    Just keep reviewing your options. Don't feel trapped. Good luck.
  18. Jude

    Jude Registered User

    Dear Izzy and Angela,

    Welcome back Izzy. Glad to hear that you had a great holiday. I've missed your posts recently.

    Dear Angela,

    It was good to read your post. I tend to read most posts about teachers, as my father was a teacher for 38 years.

    Your comment about 'carers leave' is an excellent idea. Is there any way that all teachers on the web might combine and lobby the powers that be? One of my very early posts here was a comment that so many teachers seem to be afflicted with AD - many more than in other professions.

    Just a thought.


    Your comment about
  19. AngelaH

    AngelaH Registered User

    Jul 31, 2004
    Dear Jude,
    didn't I see something in the papers recently about the government starting to think about more flexible working patterns for carers? But I don't get as much time to read the papers as I'd like. I hope that the Alzheimer's Society will add its voice to any campaign or consultation to urge that all carers should have the right to more flexible work/leave patterns.
    I don't think it's just teachers who need this! Maybe teachers are just more articulate. And in any job where you take work home, there are additional stresses when home is no longer a place to relax but a place where you have extra stresses and responsibilities.
  20. egg

    egg Registered User

    Jul 31, 2004
    sun downing etc

    Thanks Jude

    I have now read all, well nearly all, of the Alz Soc web site and am more educated. I am trying to take this one step at a time as if i think about all of it it seems an enormous big thing. Someone i spoke to recently seemed to think (well her manner gave that impression) that i was sticking my head in the sand rather than facing up to the diagnosis but i can only cope by thinking what is the next step ie the work thing and trying to sort out some home things to enhance quality fo life for my husband - am i being odd and not accepting what is in front of me? Trouble is at the minute, don't know why but i am convinced that i am doing it all wrong.

    sorry rambling again


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