working and caring - help!

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

  1. egg

    egg Registered User

    Jul 31, 2004
    36
    Birmingham
    carers' leave

    What a great idea

    I telephoend my lea today to ask re situation but apprentually it is up to the head as i was wondering if there were any national guidelines.

    i asked if i could look into having say two months off to travel as i wonder if we can wait until next summer to fulful my hubby's dreams and this summer we only had the diagnosis a week before the hols and the person i spoke to was rather surpirsed! seemed rather taken aback at my idea - i am not trying to be greedy and i don't want pay for the two months but i would quite liek not to have to resign as will i ever get a job again at 52 when younger teachers are so cheap. I just want my husband to have some happy time - i know he won't remember them ( but he still remebers holidays and trips at present and they are his main source of enjoyment ) but that isn't the point - its quality of life now.

    Trouble with carers leave from what i have read the length of caring times vary so much.

    interesting idea though

    egg
     
  2. egg

    egg Registered User

    Jul 31, 2004
    36
    Birmingham
    ideas for

    thanks for your reply.

    You have some good ideas.

    Trouble is my hubby seems very very reliant on me at present - maybe shock of diagnosis etc and so although practical things help they are not really my only problem. And when i am doing my homework he just sits there waiting for me to finish which pressursies me as well! What do other cared for people with early stages of AD 'do'? Has anyone any ideas or tips? I am also woried that my husband is over reliant on me - has anyone else found this? - once again i am asking about people with early stages AD.

    Any advice appreciated.

    egg
     
  3. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,252
    Female
    Dundee
    Hi Egg

    I really understand what you're going through. Every day is a concern for me in terms of what my husband will do to fill the time. He was never interested in clubs or groups and won't consider going to any centres or anything. He is still capable of doing DIY - I don't think it's to the standard he used to be capable of as he was very particular - but I don't really care! Our rooms have painted and repainted/decorated rather a lot over the last 3 years as he does enjoy decorating. Recently he got interested in jigsaws and I got loads from a website. He has gone off these recently but I hope he'll go back to them in the winter. He still does the garden - not always what needs to be done but again - who cares?! He used to really enjoy crosswords but he really can't do the cryptic ones now - he still gets some of the clues but he tends to do the easier ones and we sometimes buy puzzle/crossword books. He went through a period of being really depressed and he then had regular visits from a very good male CPN - this meant he was able to talk about lots of things from the past - eg his National Service etc. He was also prescribed something called Cipralex which seemed to help with his depression and I think it has kept him more focused.

    There's no getting away from it that it is difficult to keep him occupied with things that he believes are valuable - I think self esteem is a big issue and it's hard going trying to keep his up and also maintain my own sanity! I think it has become a bit easier over the last year or so. I did find the first year after diagnosis very hard. I think I spent more time worrying about the future and I now put my energies into making sure the here and now is good for us both. It may be putting my head in the sand but I know I will deal with the changes as they come along. There's a saying in Scotland - 'What's for ye will no go by ye'! I don't know if that means anything to you but basically it's what will be will be!!

    Take care

    Izzy
     
  4. AngelaH

    AngelaH Registered User

    Jul 31, 2004
    22
    London
    Dear Egg,
    Full marks for trying! It was very brave of you to phone the LEA and explore the possibilities for some 'paid leave'; even if you didn't come away with an obvious answer, it has given them something to think about and every time you ask, it is easier the next time, like a rehearsal.
    But about your feeling that your husband has become very dependent on you, how about finding ways to get him entertained that would leave you some time to yourself? It may be worth exploring finding someone he can relate to - like a Crossroads volunteer? - who could get to know him now, before he becomes too disabled, and who can build up a relationship with him, just for a few hours every week. It may be helpful to explore ways of expanding his circle of acquaintances and activities now, while he can still enjoy these experiences.
    Your ideas for holidays are wonderful, but you may find that staying in strange, new places becomes more challenging if your husband finds it too disorienting. Short breaks may be just as much fun as long ones.
     
  5. AngelaH

    AngelaH Registered User

    Jul 31, 2004
    22
    London
    Izzy - you're amazing!

    Being a primary school headteacher AND caring for your husband with AD - you're fantastic! I really admire you! Enjoy the rest of the holiday!
     
  6. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    785
    Buckinghamshire
    Dear Egg,
    I echo Izzy's post completely, and I am also guilty of trying to plan ahead to stay in control. It simply doesn't work.
    Angela's idea of 'caring leave' sounds brilliant, but is probably not going to sound very practical from the employers' point of view (especially in a school situation, which is notoriously inflexible due to budget constraints etc).
    My 'solution' to my husband's increasing need to have me within his view was to replace my ancient PC with a laptop. It's been a very worthwhile investment, although it doesn't solve the problem completely: it is hard to tap away and listen to a conversation at the same time! I don't log onto the internet while we chat, and therefore make time for AD TALKING POINT around bedtime, which means I often don't turn in until Tony has dropped off. As I always get up before him, he has now started asking me where I sleep at night ....... One step forward, another step back?
    As for time-fillers, I try whatever comes into my head, sometimes it works, sometimes it doesn't. For weeks, my husband felt great about cutting up garden rubbish for the tidy tip. Often, his gardening gloves got shredded in the process, but as long as he was happy, I didn't care. Then he lost interest in that from one day to the next. It's an on-going challenge, and this forum often manages to generate new ideas, which is a godsend.
    All the best,
    Carmen
     
  7. egg

    egg Registered User

    Jul 31, 2004
    36
    Birmingham
    thanks

    Izzy Carmen and AngelaH thank you so much.

    I read your ideas and identified with it - I have incorrect gardening, poor decoration etc etc and I feel so re-assured that it isn't me. Some days I wonder if I am getting it all wrong like today, when he was so upset as I got the school work out and school and going back to work has become a reality rather than just a thing in the future. Your ideas are fantastic and very appropriate for the stage my hubby is at. I don’t creep down stairs as I used to on Saturday mornings to have some ‘me’ time in dressing gown before he woke up ( he has been ill for five years before the diagnosis) as he seems to have developed some new radar system that tells him I have got out of the bed! - so he gets up too – but I do sneak an odd typing moment when he is having a rest - trouble is I need a wind chime or something on dining room door so I know when he may come in and see this forum! - Oh dear I used to be so ‘honest’! closing in haste

    egg
     
  8. AngelaH

    AngelaH Registered User

    Jul 31, 2004
    22
    London
    term time looming!

    Dear egg,
    your last message sounded a bit desperate, as though your husband's anxieties about the coming term, and your return to work, were making you more worried, too.
    I hear everyone say: just cope with the present, but personally I found it helpful to try to look just one jump ahead.... even though sometimes I didn't or couldn't anticipate what the next problem was going to be. Would it help you to try to think through what will happen if he is no longer happy, willing, or safe to stay on his own while you are at work? In an earlier post, you mentioned that you had children too; would they be able to provide help if necessary? Or should you start thinking about getting support from other people? In my case, all my neighbours are working, so there wasn't anyone around to keep an eye on my father. At first we had a carer who just came in at lunchtime - to heat up a meal for him, chat to him while he ate it, and settle him afterwards. It meant he had some company in the middle of the day, which made me feel more relaxed about leaving him. Everyone will have a different solution, and you'll have to find one that works for you - at least temporarily. But if you know what the possibilities are, ou may be more relaxed about the future. It's like a safety net. I hope you manage to find some time to yourself this weekend!
     
  9. egg

    egg Registered User

    Jul 31, 2004
    36
    Birmingham
    thanks angela

    I wrote you a long reply and then the internet went off!

    From now on I shall write in word and cut and paste

    yes I suppose I am feeling stressed.

    it is hard to feel I am off to work and leaving hubby when he wants my support.

    I suppose because he is still coming to terms with the diagnosis and is so frightened of what is happening to him he wants ME. I do have a number of people I could call on and I think I must start asking for some help, probably behind his back (I am getting so devious) from son and friends but I have to get my hubby to a point where he wants this as well. He is so alert and understands so much (the advantage or disadvantage of early diagnosis as he went to hospital for something else and they picked up on the AD ???) that there is no way I could ‘pull the wool over his eyes’.

    I have suggested my new six week plan to him in that we plan the next 6/7 weeks of the half term with a little holiday in the holiday to look forward to and then we review our position at half term rather than planning our whole future lives.

    So many thanks


    It makes me feel that I may be getting some of this right when other people have similar ideas.

    egg
     
  10. Jude

    Jude Registered User

    Dear Egg,

    Sounds like a splendid compromise for now, especially if you can find a carer to come in around midday as well.

    I was wondering if you had got to the stage of having a 'panic' alarm system installed? This might give you added peace of mind, since your husband is possibly still able to remember how to use it if he got into difficulties when alone.

    Ours was installed and is rented via the local Council. It costs about £2 a week, which is a very small amount really.

    Every little bit of support helps immensely.

    Best wishes, Jude
     
  11. AngelaH

    AngelaH Registered User

    Jul 31, 2004
    22
    London
    coming to terms with AD

    Dear egg,
    I imagine that for someone like your husband, who is sufficiently self-aware to realize what the diagnosis of Alzheimer's means, it can feel really frightening. And of course it's extra hard for you because you're trying to reassure him, when you really need a lot of comforting as well! I don't know how people cope, but I'm sure there are lots and lots of people out there who have been through this. Let's hope they read this and offer some helpful ideas!
    For my father, the one merciful aspect of the disease was that he didn't seem to take on board what the diagnosis meant. I was worried stiff, but he'd forgotten it almost as soon as he'd been told!
    I found the Alzheimers Society factsheets helpful sometimes, though I didn't always read them soon enough or assimilate them properly.
    I think you are being really thoughtful, planning lovely events every half-term. What else can you do to take care of yourself?
     
  12. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,252
    Female
    Dundee
    Hi Egg

    I know exactly how you feel! At the moment I'm doing this while he's having a bath and a G&T! He'd have a blue fit if he knew half the things I talked about in this forum! Thank God he's never been interested in computers! I also do the plan ahead bit with a 'wee holiday' after a few weeks. As my husband is really very alert he still enjoys looking forward to things like this - I tend to put at the top of our A4 diary pages things like - 10 days to Egypt! It keeps it in his mind and helps him to look forward to things.

    Well our schools go back itomorrow in this part of Scotland - I'm about to plan my other half's day with him. It'll be hit or miss if he gets fed up/depressed - we'll just wait and see!

    Take care
    Izzy
     
  13. AngelaH

    AngelaH Registered User

    Jul 31, 2004
    22
    London
    Dear Izzy,
    hope term started well for you! Down here, school holidays still last another two weeks, but we didn't break up till late July. It's funny to think of all those children starting school - and looking forward to it, I hope! - while we are all worried by things at the other end of lives and careers. Do the children keep you sane?
    By the way, my father attributed his long life to two G&Ts a day! When we found he was getting a bit unsteady after a drink, I devised all kinds of ways to dilute the gin surreptitiously, so he could feel he was still having his regular tipple! Yes, it was devious, but it allowed him to keep his old habits going and seemed kinder than saying 'no more G&T'.
     
  14. egg

    egg Registered User

    Jul 31, 2004
    36
    Birmingham
    thanks

    AngelaH yes it is yuk because he is very very with it and can think it all through – hard to reassure him and how and also these last few days he has been talking about how useless he feels and how he is going to die and what has he achieved in life etc – it is not easy. (understatement!)

    The September plan is coming into action we don’t start school until after the bank holiday and I have started trying to find little happenings to liven up the days and encourage him to do more rather than rely me on me too much and I shall do a seven week plan with each day on a sheet of A4 as he has referred hundreds of times to the one I did for the summer with all the events on to refresh his memory.

    So it’s timetables and planning for school and home!

    I suppose it using my skills to the utmost – all that training is obviously coming in useful!

    Thanks everyone


    egg
     
  15. Chesca

    Chesca Guest

    Dear Egg

    One of my hauntings of the past years is of Mum knowing she was losing her memory. Not given to discussing her innermost feelings, when pressed by me to voice her current worry she would say that she was frightened. Always a doer, bright, hardworking she knew she was losing it and I couldn't take it away, only promise her that I would remember for her.

    I'm not in a position to offer advice about staying in full-time employment - I don't have massive commitments to young family and a career and God knows what financial outlay. I was in a position to 'cut my cloth' and am finding I have other untapped skills, but would I have given up the secure, well-paid job given the choice? I hated it, so took a golden handshake (well, brass actually). Your commitment is also to your charges, I bet - there will be no job satisfaction in staying at home. I do have to ask how the hell you cope with modern day teaching and all the ever-changing Govt directives? A dear friend of mine has quit teaching simply because of the increasing administrative ****! She just wants to teach, not pander to stats!

    For what my ten pence is worth, it strikes me that you are supporting everybody else when what you need is a lot of support, both practical and emotional. Hammer on the doors of social services, your GP and don't take no for an answer. And use this site, it's a mine of information.

    But whatever decisions you take, remember not to let others' judgements affect you. People can be so unfeeling - they invariably don't have the experience of dementia in all its many forms - its your decision based on the intimate knowledge of your husband.

    Five years ago I insisted on taking Mum for an all expenses paid holiday as: a. I could afford it at the time and b. I knew it would be her last to enjoy with some cognizance - she doesn't remember it now but I do, and have some wonderful photos and also no regrets. But as her illness progressed it became difficult to take her anywhere: she would panic and as soon as we arrived at our last destination, she wanted to come 'home' so we brought her home - a round trip of some 800 miles with 2 minute intervals of 'where are we going?' for the whole time. An understanding doctor subsequently expressed amazement: You can't dislocate a dementia sufferer. Take all the time you can and remember you're not Superwoman - the job's already taken!

    Best regards
    Chesca
     
  16. Jude

    Jude Registered User

    Dear Egg,

    Haven't heard from you for a few days. How are things progressing? Do hope all's well.

    Best wishes, Jude
     
  17. egg

    egg Registered User

    Jul 31, 2004
    36
    Birmingham
    thanks jude

    Wow thanks for that little message asking if I was OK - well I did go away for three whole days - and felt a great sense of achievement as I managed to navigate AND drive around a great deal of Wales(hubby can no longer do either) and driving is not my thing as I only learnt in my forties and we didn’t have a car and then I got into a complete mess with how to log onto the forum and I have only just sorted it out! And then I had my plate-spinning weekend!

    But how lovely that you bothered to send the message.

    Many thanks
    egg
     
  18. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Chesca my mum expressed her fears too when this whole thing started.
    Last year it was really beginning to hit her and us, that something was happening other than her usual forgetfulness.
    She sat me down last August and said,
    "Darling there's something happening to my brain. I don't know where I am sometimes and I'm frightened. I want you to know that whatever happens in the future, whatever I might say or do I never mean to hurt you and will always always love you."
    This has kept me going in the worse times, knowing that everything mum does is the illness and not her. Her paramount concern at the beginning was how this was all going to effect me even though dementia or A/D hadn't been mentioned.
    Unlike some "academic's" beliefs that A/D happens to those whom have always had mental problems. It seems to me it happens to the loveliest, most caring, gentle souls.
     
  19. egg

    egg Registered User

    Jul 31, 2004
    36
    Birmingham
    job sorted!

    I have sorted my new job! – I have decided I am an eminently suitable candidate to apply for the job of plate spinner (you know the one where someone spins plates on sticks and keeps rushing back to the ones that are about to topple of and giving them an encouraging whirl). Trouble is I reckon if I find an advert I shall have very stiff competition from all you on this forum who are also adept at plate spinning! I have had such practice this last weekend keeping so many plates going at once – and dodging between them. Hospitals, children who need help, mother in law to stay – 86 years old - (her husband – my hubby’s father had AD – so that plate nearly crashed to floor a few times!) Then took her back to Bristol and saw my mother 79 (failing sight) supported her – all this with hubby with me ----- back home usual caring stuff, house tasks paper work, wills, hubby pension forms and now I must stop doing Alz talk entries and give a spin to the school work plate - it has nearly crashed to floor!

    So fellow plate spinners shall we start a circus? If I don’t get the plate spinning jobs I am applying to a seaside resort as the elastic woman
    ( stretching myself in so many directions at once!) Can anyone think of any more new careers?

    Shall I post this? –
    Oh go on surely you won’t think I am totally mad!

    Oh and the jokes are fantastic and the picture ones – had me laughing last night – trouble is have to laugh quietly as hubby would want to know what is going on –

    Thanks

    egg
     
  20. AngelaH

    AngelaH Registered User

    Jul 31, 2004
    22
    London
    Dear egg,
    If you're the plate-spinner, I'll be the juggler! What a double-act!

    Don't use the best crockery as a few of them may get cracked along the way. It DOESN'T MATTER! But keep them spinning - without getting into too much of a spin yourself!
     

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