1. Codie

    Codie Registered User

    Aug 25, 2004
    10
    Berkshire
    Hello all

    I have noticed that my Mum seems to be going through a feeling guilty and worthless phase and is becoming more and more dependant on me. I do see her everyday but need to be able to go away soon so I've set up carers going in twice daily (they aren't great as only ask them to do safety checks, meds and remove old food left randomly in cupboards which they forget to do, but are definitely better than nothing).

    Also, one of the ladies at the retirement place where Mum lives told me she's been wandering at night; trying to go to the shops at 9pm. I don't think it's as serious as I sounds as she sometimes confuses day and night but am I over rationalising?

    I am also worried as I am the only relative and her care falls to me which I do feel happy and priviledged to do but I'm worried it's putting an unhealthy strain on my relationship with my Partner. I want to get external support so I don't offload on him but I work full time and run around catching up at other times.

    It just seems like an enevitable down hill slide from now on and I just want to do the best for everyone. Any tips on how best to remain positive and unstressed?

    Thanks for letting me get this of my chest. Much needed and appreciated.
     
  2. Jude

    Jude Registered User

    Dear Codie,

    Perhaps a word with the Manager of the Retirement Home might set your mind at rest before your holiday. Also perhaps, a written list of daily instructions for the carers may help to jog their memories a bit...! I don't think it's really acceptable for them to 'forget' to do things for your Mother, especially since you are footing the bill.

    My mother often says things like 'You shouldn't have to do this for me' and 'I'm such a nuisance now'. I wonder if it is because Mums have been carers for most of their lives and find it very difficult to accept care and help for themselves? I don't know how to deal with this apart from trying to reassure my mother that it is now my turn to look after her and that I am very happy to do so.

    Best wishes,

    Jude
     
  3. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Dear codie, I got the same reaction from my mum when i had to start doing more and more things for her . I now say that we are helping each other when dressing etc and sometimes i do her buttons up wrong on purpose so then we laugh and she doesnt feel so bad about not being able to do things right herself.It seems to help her to think i am as old and confused as she is! sometimes i feel like i am. Has you already know things will get worse but i think all you can do is keep a close eye on your mums day to day situation to make sure she is safe and be ready to deal with things as they arise.
     
  4. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Codie, this seems to be the pattern, 'cause my Mum was the same too. All you can do is as Jude and Storm have already said, try to ensure others know what her needs are when you are not there yourself. It may be an idea to start noting down things that happen as you then can see how she is doing over a period of time and deal with any problem areas. As Storm says, sadly, things are going to get worse. All you can do is your best and get help with the things that you are unable to deal with alone. It can cause a lot of strain on relationships, so do get help before you get worn down and it affects your own life. Your Mum would not have wanted that I am sure. Thinking of you. Storm, I thought that was lovely how you help your Mum to handle the helpless bit, well thought out and very kind, your lovely! Love,She. XX
     
  5. Chesca

    Chesca Guest

    Dear Codie

    Hold on tight for the ride of your life! Your relationship will probably undergo massive strain but don't let it, too, be a casualty. It's not always easy to do, but my partner and I have tried to make one day a week solely for us - no phone calls we don't want to take, go where we please, flop on the settee with a bottle or two and watch rubbish on the TV, any old thing. It's OUR respite. It doesn't always work - the goal posts are on castors sometimes but if sufficient care packages are in place you just have to trust that next morning the world will still be turning. We had humungous disagreements (a euphemism for all-out war) when at the beginning of this agreement I insisted we ignore the ringing phone one Friday night (there are sufficient messaging services here) and we have a call code only for those who can't cope with such - dad for one (two rings and we know who it is and break the rules).

    Sounds like the retirement home staff are on the ball and will be experienced enough to know when a re-assessment of your Mum's condition is called for, in conjunction with the GP. When she reaches the stage of being at high risk to herself a consultant should then recommend 24 hour nursing care or whatever is necessary. Sounds easy, doesn't it........ when you say it quickly.

    As for other tips on remaining positive and unstressed: this site is a great place for sharing the angst and getting feedback from others who have experience of so many of the things that you face. It's a very useful tool in the armoury and not only that, everybody is always on your side - can't say that about many battles.

    Thinking of you
    Chesca
     
  6. Jude

    Jude Registered User

    Dear Codie,

    If you think that your partner is feeling a bit frazzled with all the AD worries, then perhaps you could post some of your concerns here on TP instead, that we might be able to help with.

    Being a carer and being concerned about AD can become almost totally the focus of one's thoughts and conversations exclusively, to the point where one can't really give much time and energy to anyone or anything else. It may help to offload some worries here and give you and your partner some time to talk about other things and have some quiet moments together.

    In the past, I've found it so helpful to discuss things here on TP, and then go out and enjoy a social BBQ or lunch with friends and talk about other things and I feel that I've had a real break for a few hours that way.

    Just a thought.

    Jude
     
  7. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    The "I am being a nuisance" You are so good to me""'m a trouble to everyone" to use Judes words "Has whiskers on it".
    I don't know why they say these things but the only way is to reassure them,and laugh off the epidsode.
    It is another one of yhe common threads running through AD.
    Norman
     
  8. Jude

    Jude Registered User

    Dear Norman,

    It is very common. Also very sad too, because they deserve the help and attention so much.

    Jude
     
  9. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    hi all, I used to work as acarer in a home i really loved the people and caring for them but i couldnt stand the system,but now i am a carer at home i have just worked out what is differant i cant clock on and off the problems and responsability are all ways with me.This leaves little time or energy for hubby and family,i think i do a great job of caring but am sadly lacking in the wife and mother bit! We must all try and learn how to spread ourselves round a bit more. STORM
     
  10. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Storm, ditto, you've hit the nail right on the head there. Love, She. XX
     
  11. Jude

    Jude Registered User

    Dear Storm,

    If you spread yourself even more, you'll become invisible...! I just can't begin to imagine how you manage to combine all the facets of your life in to one day. Husband, children, caring, shopping, washing, etc, etc.

    Being a carer must be in your genes. It certainly ins't in mine! I really admire you for having a carer's job as a vocation and now as a full time unpaid carer.

    I used to be a volunteer assistant at a 'geriatric hospital' years ago, helping to give elderly people their lunches. I found it so sad and the environment was one of utter depression and despair. It was all disinfectant and dull yellow walls and brisk nurses with no time to stop and chat to the patients. Horrible!

    I am definitely not carer material. It isn't something that I find easy at all, nor would I ever choose to be a nurse or a carer as a profession. However, I'm here and doing it now and hoping to do the best that I can under the circumstances. As we all are, I guess.

    Instead of physically being able to 'escape' I now do so in my head, or by reading books when I can and also by tuning into TP.

    I am very fortunate so far, that my parents are still very mobile and I can pretty well leave them to their own devices much of the day, whilst still being here to lend a hand when needed - and to turn off taps and talk to them when they want to do so. Since they are husband and wife, I try and give them space to keep their relationship going as far as possible. I think that it gives them a sense of being independent as well.

    I hope it's the right way to go about things. It's really a case of trial and error. Seems to be working okay, so far - fingers crossed!

    Jude
     
  12. Chesca

    Chesca Guest

    Luvvies, luvvies, luvvies!

    What are we all of a sudden: Cheap margarine? arrested by the LAPD? an expensive banquet? What's all this talk of 'spreading'? There's only so much a bod can reasonably be expected to cope with and there comes a point, and Jude has written about this before, when you just have to say NO and mean it. I live with the possible ensuing guilt - it never completely goes away .

    Of paramount importance is yourself - you're the one keeping the whole thing afloat - shortly followed by whoever takes priority at any given time and sometimes dependent upon who shouts the loudest. If the totally dependent is being looked after by the 'system' and the loved ones can be supportive enough to let you have your own time, fine. If they don't, run a hot bath, fill with some glorious substance, burn a few candles or read a book, fill glass with suitable elixir, disrobe, submerge and relax, always not forgetting to lock the door. To avoid the NOs to 'Mum are you finished in there yet', or 'Darling are you ready to resume carrying me around' affix a suitable notice to the bathroom door along the lines of 'Carer at Repose wearing ear plugs. Only when my skin turns to the texture of a prune will this bathroom be once again free'

    You have to save your own soul in order to stay in working order I've discovered.

    Kindest wishes
    Chesca;)
     
  13. Jude

    Jude Registered User

    Dear Chesca,

    Right now, I'd probably give my soul for a litre of bubble bath and a night at Flamboyant - and it hasn't been a particularly bad day here either.

    Jude
     
  14. Chesca

    Chesca Guest

    Practically, I dare say it hasn't been a bad day. But it's a tall order putting your emotional feelings and married life on hold, particularly when you managed to achieve your dream only to have to put on ice for 6 months of the year. There are not many who would do that, you know.

    Whatever you do, don't drink the litre of bubbles unless it says Champagne on the label.

    Sleep tight and remember you are lovely as your head hits the pillow.

    Many good spells
    The night fairy
     
  15. Jude

    Jude Registered User

    Dear Chesca,

    I shall examine the label carefully - otherwise I shall only end up frothing at the mouth even more than usual...!!

    Jude
     
  16. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Dear Storm
    I know how you feel about your relationship.
    I got engaged 9 months ago, he gave up his job, home etc to come back here to be with me, and now it is very hard going to keep this all together. He is very supportive but my mum's physical needs are enormous, rheumatoid arthrits, which means all has to be done for her, and now 5 physio sessions a day to desperatley try to keep her chest clear, I have no carers or family helpers except dad, who's 77. I love my fiance, but I just have no energy at the end of the day to give to the relationship, I doubt we'll see Christmas together, through no fault of his. I haven't got the same interest. He is off on holiday next week and I am looking forward to the break, I will miss him of course, but it is just more of a drain on my time and energy. I really don't know what to do anymore. I feel sad and I see him so sad too. Dementia World is a horrible place to live for all concerned. Can't offer you any advice but know that you're not experiencing these things alone.
     
  17. Jude

    Jude Registered User

    Dear Magic and Storm,

    Relationships..... I'm with you guys! Mine is a bit of a joke all round these days. It's still hanging in there, so I guess the old adage 'love conquers all' is possibly right, so far. When I'm here I have just about zero input, apart from the phone calls. Quite often I don't even feel like staying up late to phone because of the time difference and I need to sleep. There are only so many hours in the day, after all....

    It's a totally no win situation for me. I can't sacrifice my parents or give up my relationship - and worry about both when I'm either at one end of the globe or the other. It's seems a bit like waiting to see which end collapses first.

    I can't think of a single solution. Can only empathise.

    Jude xx
     
  18. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    HI, I just try to give priority to whichever one needs me most at any given time which is usally mum the rest just have to settle for the leftovers.Sometimes i feel like everyone wants a piece of me and one day there will be none of me left.At least i know that my husband will always be here because its his mother,he leaves on pain of death! STORM
     
  19. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    I like your style Storm!
     
  20. Jude

    Jude Registered User

    #20 Jude, Oct 3, 2004
    Last edited: Oct 4, 2004
    Dear M & S,

    Me too. I do hope there's always a bit left over for Talking Point at the end of a busy day.

    Ah - I seem to have turned you both into a well known department store now. St Michael, Patron Saint of Woolly Vests, or something. Better not start on the underwear track again or I shall be in serious trouble later on....

    Jude xxx
     

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