I want to run away..............

Discussion in 'I have a partner with dementia' started by di65, Jan 19, 2015.

  1. di65

    di65 Registered User

    Feb 28, 2013
    772
    new zealand
    I don't know which way to turn. My day is made up of OH constantly asking where are we going today? If I say nowhere I am accused of never wanting to do any thing. So I say - -OK - let's go for a coffee at the local shopping centre at morning tea-time. It is then a two minute countdown telling me how long 'til we go? Who is going with us? Just you and me? No-one else? Will anyone else be there? Do we have to pick anyone else up? Then it starts again with only slight variations to the questions. He even follows me to the toilet to keep asking. He argues about what time it is (he is starting to find time telling difficult). We finally get to go at the time I said we would go, and he gets fidgety if his coffee and/or muffin isn't delivered to the table within 2 minutes. He then bolts them down before I have even started and wants to go home again. We get home in time for me do to a short bout of housework before he starts asking about lunch. After lunch my mind is on overdrive and all I want to do is shut my eyes for 5 minutes, but he starts on about tea and we start the whole process again. In the meantime he checks his keys about 20 times, the front and back doors, makes sure the car is still outside, goodness knows what he does on his umpteen visits to the bedroom, and generally wanders around the house. The spa pool needs emptying and I have lost count of the times I have opened the tap and he has closed it. He has lost the ability now to make a cuppa, something I was encouraging as it was one of the few things left that he could accomplish. He asks if I want tea or coffee (I have never drunk coffee) - then asks what I have in it. I answer with "just the teabag and water" and get the answer "OK". What arrives is usually however, a cup with a teabag, coffee, sugar and maybe, milk. I have two options - sneakily get up and make my own and get a tongue-lashing, or let it get cold to which I also get a tongue-lashing about getting him to make me a cuppa and then letting it cold - damned if I do and damned if I don't!! Teatime is a headache - much the same scenario as morning or afternoon teatimes. I don't know what the sudden desire for eating out is? Is my cooking that bad:D.
    I just want a quiet life really:(:(

    I don't know how much longer I can sustain a sane approach to life. Any suggestions to OH as to "can you write down, or can I write down for you, what we have been discussing" is only an invitation for a barrage of verbal abuse regarding the fact that he hasn't even so much as mentioned it before.

    I guess it's such is life with AD, and it only what I have to expect. I certainly didn't think that that was how being 67 was going to be with the love of my life:(
     
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    It's late in the UK so I didn't want to read and run...

    It's relentless, isn't it? The whole do it once, do it a million times aspect of dementia? No matter how empathetic you might be, I don't know who wouldn't be reduced to the screaming ab dabs by this sort of behaviour.

    No help, but a great deal of sympathy. And a lot of hugs.
     
  3. marionq

    marionq Registered User

    Apr 24, 2013
    5,848
    Female
    Scotland
    Di the only thing I can suggest is that you give him a job to do each morning. If inside you might ask him to tidy up a drawer. My husband can rummage for hours in his top drawer which holds all his odds and ends - including hidden money which he moves from place to place!

    If outside you might ask him to collect leaves and put them in the compost. I know this doesn't always work but you need to keep him away from yourself for a wee while.
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,553
    Kent
    Hello di65

    I was almost living your post with you, sadly you describe your life so well.

    As carers it is expected we do nothing other than concentrate on the demands of caring 24/7 with no let up and so few realise what this does to us physically and mentally.

    With hindsight, now I`m no longer a carer and can look at the situation more objectively, I say get as much help as you possibly can. Shout from the rooftops . Be selfish. You love your OH but full time caring is taking it`s toll. There are times when it`s you or him.

    You are doing everything possible to keep him happy but at your own expense. He is ill and can`t help his behaviours but he won`t come to any harm if he is cared for by another for a short time each day while you have a break.

    Think what you would say to someone else posting here in a similar position and act on it. No one will know how you are unless you tell them.
     
  5. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    2,951
    Your post took me back a few years to a time when life was ruled by dementia. I didn't even live with my parents but was there a lot.
    It eventually just hit me that nothing in life was governed by anything reasonable, when I entered my parents house everything normal was left outside and anything could happen.
    At the time I was trying to get my dad to agree to a carer twice a week for a few hours for mum (just to let him get out for a while as I couldn't continue to provide this myself long term). Dad just kept saying it wouldn't work. I think he was trapped in this non normal world.

    It took a year but eventually we got the right people, and then we got a couple of weeks of respite and then things changed and it was as if some kind of rational energy came back to the house.

    Start with getting sitters in, and don't say it wont work because it has to.
     
  6. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Hello Di65 how l sympathise with you, your hubby sounds just like mine, there is no end to it, just drives you mad, we go to the memory clinic soon will see if the Dr can give him something to help this awful stage we are going through. I am 69 didn't think this is how we would end up in our twilight years, my mother in law had Vascular dementia, but never ever thought my hubby would have Alzheimers, its such a horrible disease ♡♡♡
     
  7. di65

    di65 Registered User

    Feb 28, 2013
    772
    new zealand
    thank you all for your comments.
    The memory clinic has put his name forward for a day's respite, but all 'vacancies' are full. I can only hope for the position will change after the Christmas holiday season is over. Things are just starting to come back to normal here in the 'system' after the Christmas break.
    I have tried giving him 'chores', but the usual reply after a request is met by "can't you do it yourself - it's simple enough. You need to pull your socks up and stop getting me to do everything, you are getting really lazy" Not in a nice voice either, so it's easier to ignore trying to involve him :(
    Where has my loving husband gone? Reminds of that 60's song, Where Have All The Flowers Gone.
     
  8. Tin

    Tin Registered User

    May 18, 2014
    4,826
    UK
    I'm having the same problem with my mum, nothing will satisfy her and its been building up for 2 weeks. We go out every day, I find tiny chores for her to do around the house, but it just isn't enough. For the first time this weekend my back, neck and head ached all at once. I have decided that my days are bad or very bad.
     
  9. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,780
    Salford
    It is all a bit groundhog days sometimes isn't it, all you can see is it stretching out in front of you for years, however, in my wife's case she after a while did calm down a lot.
    She used to be like you describe your husband is now but thankfully like a moody teenager she did seem to grow out of it so there may be some hope for the future.
    K
     
  10. JigJog

    JigJog Registered User

    Nov 6, 2013
    237
    Oh Di65 I could have written your post myself. I am going through this same stage and I feel as if I am going mad too. I thought it was just me.

    My OH starts his day with a lovely 'Hello Gorgeous!' which I am always so grateful for and long may that lovely start to the day continue, but then it is downhill from there.

    I try to get a plan for the day together and write it down with him but then he wants everything done to the exact minute. So many questions about so much detail. When are we going? What are we doing? and so it goes on.

    Whatever I do around the house he stands over me asking how long I am going to be etc etc. I feel as if my whole life is being timed by a stopwatch. Everything just feels so intense and then he will suddenly change things and want to do things at a different time, which throws things into chaos and confusion and we start again.

    I do get a short break while he goes for a walk, hence me being able to write this, so I shouldn't complain but the intensity of the rest of the day is unbelievable.

    I try to find him jobs to do and he does help with chopping veg etc but everything is done at breakneck speed and I have to go back and redo them subtely.

    It is tough Di. I am glad you posted because I'm going to draw strength from the replies you've received and I'm going to begin to set up a sitting service now. I don't know how he'll take to it but I think it's best we do this kind of thing sooner rather than later. I have a visit from the memory clinic nurse next week and I'm going to ask for help there too.

    I am 60 and stopped work early to look after OH. This isn't how I envisaged this stage of my life, just like you and pamann.

    Thanks for posting Di. I don't feel alone now. Keep posting.
     
  11. di65

    di65 Registered User

    Feb 28, 2013
    772
    new zealand
    HUGS to you JigJog - and to you other lovely people here on TP.

    I am off to bed now, hopefully I can get a few hours sleep:):)
     
  12. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    I so sympathise, Di65 x

    Monday to Friday, at 9.15(ish) I am reaching for a strong cup of coffee, and painkillers, after just 2 hours of getting Mil ready for day care generally leaves me exhausted and with a headache. It's exactly the same, a never ending series of 'loops', just as you describe, often blended with complaints and not very nice comments. Once she is home, its a cycle of where is her son? Is he at work? Is he working nights? When will he be home? - even when he is sat in the same room as her. Or its when is she going home? Can she go see her Mum? Is her Mum coming to get her? Where did the babby go? or the little girl or the little one?

    Weekends are worse - she constantly asks 'What am I doing today? Am I going out' 'Shall I get my coat on, I'm going out, aren't I?' from when she gets up - but if we take her out, after a very short time she wants to go home again. Every 5 minutes she needs to ask something, stuck on one topic or another for anything from half an hour to 4 or 5 hours. She sometimes asks repeatedly can she do anything to help me out around the house? Most of the time, when I find her something to do, she will instantly respond with 'I'll do it later - I'm tired now' - then 5 minutes later is again asking to do 'something'.

    From 6pm, every day, its 'I think I'll go to bed now', and we have to remind her again and again that she must wait for her 10 pm meds (if she goes before 10pm, she is invariably up from 2 or 3 a.m., wanting breakfast).

    I am so, so lucky to have day care, 5 days a week, because the relentless repetetive questioning and need for attention is so exhausting and tortuous that I know I would crack without the break. I really feel for, and admire those that can or who have to cope without it - I know i couldn't. I think sistermillicent and Granny G are right - you have to try and make some sort of a break happen, because absolutely no one can live under that sort of pressure, 24/7 xxx
     
  13. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    Oh dear, Di65, how I feel for you. Last night was the closest I got to feeling like taking myself out in the cold and letting the cold take me out. Things are now so bad here, that I almost haven't got the strength anymore.

    I won't bore anyone with the details, but I've been on a losing streak now, for a long time. Grit yer teeth and bear it ain't working very well, lately!

    If you can get any support with perhaps a bit of respite, I'd say go for it, although someone else needs to tell you how. I'm all but wiped out myself.

    Wishing you strength and lots of luck with any help you can find, should you try for some.
     
  14. Mommidizzle

    Mommidizzle Registered User

    Mar 15, 2012
    44
    hi hunney, welcome to my world !!
    my day also consists of pretty much same ............. the first words i hear every morning when i open my eyes is 'whats the plan today' ?? its usually same plan most days tbh im going work, nurse coming in to dress foot, il be home at 2.00pm.

    it doesnt matter what time it starts or how often its repeated its sooooo tiring and frustrating all the same my love but heyho its where we are in this sh**ty journey into this sh**ty road that is Dementia

    Chin Up kiddo :) xx
    ps ............... i find wine helps ;)
     
  15. truth24

    truth24 Registered User

    Oct 13, 2013
    5,726
    North Somerset
    Am so sad for you all. Know what you are going through and reminds me of what it was like. Can't help at all but am sending you all a big hug and wishing you strength to get through the day.

    Sent from my GT-N5110
     
  16. pony-mad

    pony-mad Registered User

    May 23, 2014
    1,073
    Mid-Wales
    Sending support to all on here who are struggling to cope.
    To say it's a long and difficult road is an understatement.
    Love to all
    G x


    Sent from my iPhone using Talking Point
     
  17. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    As a carer for 12 years, I know how hard it is/was. I found, in the last couple of years, that the best approach was to agree with everything. It's hard to do at first, but saves sop much aggro. Alas, when you see a TV advert, they show a snapshot of a couple nostalgically looking at photos. You never see one of them hurling the album across the room.

    I have no more advice, but loads of sympathy, and I hope you find some coping mechanisms that suit you both.
     
  18. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    5,737
    North East Lincs
    I am not sure where we can run away to. What I find really hard to cope with is the denial: 'there is nothing wrong with my memory'. As I have posted elsewhere this morning I have confronted acceptance of this because the alternative is giving up. If my memory serves me right I think it was Scarlett or Jeanie who says there are thing we can do: eat well, exercise and try to stimulate our mind. In short a simple recipe for healthy living.
     
  19. mabbs

    mabbs Registered User

    Dec 1, 2014
    238
    Lancashire
    Hi, my OH clock watches, he is not and never has been keen to go out and about, but he goes shopping with me, the what time are we going, is followed by putting shoes and coat on, ages before the time, he has no sense of time now. Once we get there he needs to know if we have finished and can go home.

    Like others he needs to see what I am doing, where I am etc, I have been able to get him to help in the garden, but mostly he watches, or passes me things.

    Tomorrow we are going to our first dementia cafe meeting, hoping he will enjoy it, as it will get us both out of the house for a while.

    I would agree with the others who posted, that help even if a few hours a week, would be good. I will be asking when things get too much, so glad for TP's good advice and knowing we are not alone.
     
  20. Hervieux

    Hervieux Registered User

    Mar 31, 2014
    32
    South Wiltshire
    Is it these long,long dark nights because I too am nearly at the end of my tether with endless "are we going home soon",seemingly intelligent chat about absolute rubbish etc.I am lucky that after a phone call to the memory clinic the wheels started rolling,very fast.Perhaps they heard the desperation in my voice but something worked.We now have a carer every morning to bathe and dress him,no more odour filling the house--- yay!He has been booked for one day a week at a care centre and I have been allocated 2 hours off a week.Magic.So ladies and gentlemen,don't be afraid to cry for help.Certainly,here in Wiltshire the system,once activated,has been swift and efficient.It doesn't make the dreadful evenings any shorter but at least I know that the mornings are taken care of.Emptying his waste bin full of pee and 4 pairs of soaking pants is slightly more manageable now.Anyone else have this?I think it is shame at having accidents,nearly pad time I guess,wonder how he'll react to those.But he LOVES the carer who bathes him,she can do anything with him--- me--I'm the baddie in all this.


    Sent from my iPad using Talking Point
     

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