really not sure i can carry on coping much longer ??!!

Discussion in 'I have a partner with dementia' started by Mommidizzle, Jul 26, 2015.

  1. Mommidizzle

    Mommidizzle Registered User

    Mar 15, 2012
    44
    #1 Mommidizzle, Jul 26, 2015
    Last edited by a moderator: Jul 26, 2015
    Hi Troops ...... me again !

    OH has slipped quite quickly in the last few months !!

    Sorry but this maybe quite a long post, but could do with some advice on a couple of things...... I am having a really bad day today, My OH has been a bit poorly the last 8 months with a foot ulcer which was infected but not now just unhealed! He has been having a few falls too. He fell again this morning.. not badly and was unhurt but he a big guy and i have no hope of lifting him!! I had to get him to shuffle into a less confined space to enable me to help him to his knees do he could lift himself up using the bed !

    Also we have recently had problems with pants !? it appears that although he can still take himself to the loo he seems to be forgetting to wipe his bottom from evidence left behind in his pants (sorry maybe too much info!!) any advice\tips on this would be appreciated.....

    To be honest all this just proves how useless i am going to be with all this and feel so very inadequate, i cant do this much more, i feel so alone and he is in complete denial that there is anything wrong with him. I am seriously considering calling SS and asking them to put in respite care for a while. He is 70 this year and i am just 51
    but feel like my life is over ! We dont go out much only to shop and the odd social event but he wants to come home as soon as we get anywhere :( so whats the point??...... i feel like i am in prison !!

    To top it all we were suppose to be going on holiday at the end of August with friends but due to his health he wont be able to go so that means neither will I !!
    I cannot tell you all how thoroughly ****ed off i am right now with him/me/this poxy illness!!

    I really do not know what to do!!!

    Tx
     
  2. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    Mommidizzle, I really do feel for you. For the falls; have you considered having grab rails fitted? I was supplied with six of them from my housing association either last year, or the year before. I couldn't lift my hubby from the floor, so encouraged him to shuffle to one of the rails and I'd help pull him back to his feet once he'd grabbed the rail. You could also do a similar thing with a zimmer frame and a slightly different technique. These things do help.

    As for the soiling; you could ask to be put in touch with the incontinence nurse who would be able to guide you through getting pads for your husband. These are given freely via the NHS.

    Can't help with holidays, I'm afraid, as we never took them, even in better times. Much love and courage to you.
     
  3. angiebails

    angiebails Registered User

    Oct 8, 2009
    227
    crewe
    I am 50 and my husband is 73 so I know how you feel. When you first met up no one told you that they would suffer from dementia and it would take over your life. I cannot give you any advice as my husband has different problems but I can sympathise on how you feel. I am missing out on my new granddaughters as it is too difficult to arrange visits and we do very little.
    Do you have any help at all so you can prehaps go away alone or is it possible for you both to still go away, with a little help from your friends. I don't know how understanding they are with his condition. I know it's hard as I do have to cope with this single handed as his family won't help me. Prehaps a visit to the doctors and talk through what is going on.
    All I can do is say keep with it and try and look for some positives. I now it's hard.


    Sent from my iPad using Talking Point
     
  4. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,711
    Female
    Dundee
    Hi there

    I'm sorry you're having such a bad time. You really do need help as you can't do it all by yourself. My husband is 21 years older than me so I can understand how you feel.

    I agree with Chuggs that some grabrails in the house might be useful. Could you get your GP to refer you to the Occupational Therapist. Hopefully the OT would come out and assess the falls risk and consider what might be done to help you.

    Do you have a community alarm system? We have one of these and although I haven't had to use it for my husband I have used it when my mum was alive. She fell in the house and I just couldn't get her up. I pressed the alarm button and talked to the call handler. She sent the team of 2 people round and they helped to get her up off the floor. Before we had that I called the ambulance service and they came and got her up. You don't want to hurt your back or things will be even worse.

    Again I agree with Chuggs re the pants - you need to get a referral to the continence service if you haven't already got contact with them. They should be able to help you with the most appropriate pads or products to use for your husband. For some time now I have taken my husband to the toilet and gone in with him. This, of course means that I do the wiping now. At least that way I know what I'm dealing with. Your husband may not be willing to allow you to do this of course, mine has fairly far advanced Alzheimer's and does allow me.

    If I were you I would certainly contact SS. You really do need respite as well as help getting everything sorted out re above. I think you are in danger of carer breakdown if you don't get help. Your husband's needs should be reassessed and you should have a carer's assessment.

    The holidays are difficult, especially if you were to be going with other people. I have had to have a total re-think regarding holidays. We still go away but it is quite different. There's a thread on the go about holidays just now. I'll add the link as soon as I finish this post.

    Good luck and please keep posting. You know you'll get a listening ear here. x

    Edit - this is the holiday thread -
    http://forum.alzheimers.org.uk/showthread.php?84506-Respite-holidays
     
  5. Mommidizzle

    Mommidizzle Registered User

    Mar 15, 2012
    44
    TBH our friends are really good and fully aware of the probs and a great help but with his health at the mo, (Dementia,Diabetes,foot ucler and they think he may have underlying infection somewhere else so we awaiting heart scan and stomach scan) i dont think i would get him insured?? also he is very unhappy outside of his normal routine and when we went in May he spent most of the time asleep and the rest asking when were we going home!! My Sister has offered to look after him for me but im not sure she would cope? it seems unfair to put this on her !?
    I always said that i couldn't put him in a home unless there was no other option and i was unable to look after him but right now it seems the only way for me to get some of me back :(
     
  6. Mommidizzle

    Mommidizzle Registered User

    Mar 15, 2012
    44
    Chugg unfortunately grab rails wont have helped so far in any of his falls as the last 5 were out in the garden and this morning he managed to fall in the narrow space between his side of the bed and the chest of drawers (about a metre wide!) hence the shuffle to a wider space ;) (he also managed to attached himself by his pants to the drawer handles so was well and truly stuck for a while (LOL)....... think upside down tortoise in a long box ;) i will check out the pads for his pants not sure if he would wear them tho?
    xx
     
  7. Mommidizzle

    Mommidizzle Registered User

    Mar 15, 2012
    44
    actually while i'm at it ...... is sleeping all the time part of the Demensia?? He sleeps most of the day away (still sleeps at night too on and off thank god!!)

    Normal day - gets up with me 7.30 has breakfast, i go to work (4hrs) come back at 2 he in bed! gets up when i come in, goes back for nap 2 hrs later, then snoozes in chair when up, the goes to bed about 9pm??

    Today got up at 11 back asleep in bed by 1.30 still there???
     
  8. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,711
    Female
    Dundee
    Yes sleeping a lot is part of dementia. Bed also provides a feeling of security/safety.
     
  9. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    I only spoke about the rails as I needed some sort of support for my spinal condition. I'm so sorry that didn't help you.

    A zimmer frame without wheels might be useful. If I'd had one, I would have put my foot on the bottom bar, given hubby the top to grab and pull himself up with. There are always ways and means to get by in these incidences.

    If I stay here, I'm still thinking of having a bespoke ramp made between kitchen and living room, as there's a step down to the kitchen from living room. That can be a hassle! It hurts getting old, sometimes :( I hope something can be sorted for you. Well done Izzy for mentioning falls. If you've got a falls team in your area, do seek them out for advice and support, Mommidizzle.
     
  10. Jinx

    Jinx Registered User

    Mar 13, 2014
    2,333
    Pontypool
    Mommidizzle, I do sympathise. My OH is very unsteady and liable to falls. In fact he fell last time in exactly the position you described, apart from not hooking himself to the drawer handle! We are very fortunate in that we moved to an annexe on my daughter's house six months ago and I was able to call them to help me get him up. Before that I had awful struggles with him including him getting stuck in the bath, he's 6'3" and it's really hard to manhandle him.

    He is now not always able to clean himself up after doing a poo, he often asks me to check if he's clean and if not I have to do the deed. If he's been at day care then we deal with the consequences later. He is also showing beginnings of bladder incontinence. I remember writing on here sometime ago that I didn't think I could cope with incontinence but what choice does one have when faced with it. I keep trying to tell myself it's no worse than changing a toddler's nappy just on a larger scale!

    Re your holiday, why not see if you can get him into respite and go on your own? I have managed two holidays this year for a week each time while OH has gone into respite and been fine. When I took him away on holiday last year in England he liked being driven around but when we got to a place to visit he'd refuse to get out of the car. It was no holiday for me as he was up and down all night unsettled in a strange environment and then I was driving him round all day.

    I haven't been abroad with him for about three years as it was so stressful when we last tried.


    Sent from my iPad using Talking Point
     
  11. 1mindy

    1mindy Registered User

    Jul 21, 2015
    539
    Female
    Shropshire
    I feel the same and I am sure many others do to so you are not alone. Our age difference is just 13 years and I wonder if I am up to the job long term and how others always speak so fondly of their OH when I am rapidly loosing the plot with him and thinking I have no life now and this could take a lot of my living years. Mine is also in complete denial which makes it all the more frustrating I know. We are selling our large house to mkve to something in a village where we can walk out as we live in the country now.I am planning for his future needs and mine longer term but now be says does not want this yet as he is ok and will be for another twenty years I am seriosly contemplating moving to what I want and he is welcome to join me if he wants to again I feel harsh but am not coping with all of this. Like you I don't know what to do.
    So not much help here I'm afraid and it maybe doesn't help that you are not alone because it certainly feels like it .
     
  12. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    I feel so much for all of you, though I know that's no help. :( When I was dealing with John's double incontinence, I wondered how many brides, and grooms, would confidently answer "I Do" if the question was thus:

    Do you take this man/woman to be your lawful wedded husband/wife, bearing in mind that, should they get AD, you may well have to wipe their bottoms, after a poo, check that they haven't got muck under their fingernails, where they've tried to wipe their own bottoms, do copious amounts of laundry, emanating a delightful aroma of urine, scrub floors, carpets and furniture when "accidents" have happened.

    Could you answer the same question, asked dozens of times an hour, let alone a day, questions such as "is it Thursday?" (this was John's favourite ;)), what's the time, what's your name, what's my name, where's my wife/husband, who are all those people in my room? Why can't I wear 2 shirts?

    Could you? Could you do all this with a smile nailed on your face, never showing the slightest annoyance? Could you exist on 2 hours sleep a day, every day, and still be daisy-fresh in order to care for your beloved?
    Could you keep a pious and untroubled look on your face, and arrange it in neutral features, when your beloved asks, whilst you're both in a long queue at a shop "why is that woman over there so fat?"
    .
    Could you turn yourself into a reincarnation mix of Mother Theresa and Princess Diane, when your beloved yells "there's nothing wrong with me"! And then becomes violent. :( None of us signed up for this, and we are all bone-weary, and at the end of our tethers, and yet - you just have to find more tether when you think it's all gone. And when I look back on my 12 years of caring, and the 7 months since John died, I know I can say "I did my best" - and none of us can do more than that.
     
  13. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    When I got married I said "In sickness and in health" and I'm (for as long as possible) sticking with that.
    My late Mum (who has AZ) lived with us for her last 3 years and my wife did most of the "hard" work, now my wife has AZ I feel it's only fair to (a) keep you what I promised and (b) payback what she did for me.
    Am I going to stick with it, well "tomorrow's another day".
    K
     
  14. truth24

    truth24 Registered User

    Oct 13, 2013
    5,725
    North Somerset
    Well put, Scarlettxx
     
  15. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    Mommidizzle, I just wanted to acknowledge your feelings.
    You've had lots of thoughtful comments from other responders - and no doubt looked through other threads for helpful hints.
    I won't patronise by pointing out that you clearly are not useless or inadequate - because that's not your point - that's how you FEEL
    And your feelings count
    Are you beginning to discuss with yourself whether you are close to the time to find a care home for your husband?
    If so, that's fine
    Maybe sit and write down
    your feelings about your situation and what you need - your feelings about what your husband needs
    then the rational side
    what you gain if you both carry on at home - what your husband gains
    what you gain if he lives in a care home - what he gains
    in other words look at what your 'heart' and 'head' are telling you
    Maybe it's time to look for him to be looked after somewhere else - maybe it's not
    If you discover it's not - then you have notes to compare how you feel/think now and in the future when you think again.
    If it's not yet time - do look at getting more help; a cleaner, respite, carers, day care (just take him and see how it goes), a 'sitter', more ready meals so you are not cooking every meal, you join a carers' group, .....
    All the best.
     
  16. Mommidizzle

    Mommidizzle Registered User

    Mar 15, 2012
    44
    Hi Troops :)

    so .... update ..... after a lot of tears this week i decided to ask for help !!?? :( I called SS on Monday and spoke to our SW about needing some respite care. She gave me another number to call who listened to what i had to say and then passed on my story to another department ...... who called me today to arrange to come out and see me & OH next Monday. On trying to establish with her what the process is for getting OH into respite for a couple of weeks she said that it will all depend on whether he will agree to go ??!! (never in a rain of pigs pudding !!! :( :( ) when i said that he wont agree she said if he still has the capacity to make a decision then they could not force him! i have explained that he is in denial that there is anything wrong with him so why would he agree and how is it decided whether he has the capacity to make a decision?? she said she could do a capacity test and would draw her conclusion from that??
    So does anyone have any experience of so called capacity test and what it involves and what happens if he passes said test .....refuses to go into respite and has them believe he is fine!!?? What happens then ?? do my feelings and requirements just get ignored ???
    any tips on how to deal with this please ??
    Much love T x
     
  17. Katrine

    Katrine Registered User

    Jan 20, 2011
    2,839
    England
    #17 Katrine, Jul 28, 2015
    Last edited: Jul 28, 2015
    Respite is for the benefit of the carer. You are the one who needs a break, but the focus of the assessment is not on you. Crazy, but that's how it works it seems. In an ideal situation OH would agree to respite care, SS would find and fund a suitable temporary placement. Seeing as things aren't going that way, what can you do?

    You, I repeat, YOU are the person in need of the break. Therefore you could plan to go away and state that if OH is deemed to have capacity to choose to stay at home then SS has to provide suitable care at home. If they can't, then they have to make residential arrangements.

    It makes me so cross that this issue of capacity is used to hold carers hostage in their own home. Or, to force you to take a possibility unwanted and unaffordable holiday away, when actually you also have the right to the quiet enjoyment of your own home, free of caring duties, in order to recharge your batteries.

    Just noticed that you said in your OP you had plans for a holiday with friends in a few weeks. Perhaps you should revive that plan to give SS a focus on dates when respite care of some kind WILL be needed. ATM they can spin things out with ifs and maybes.
     
  18. Mossyanne1

    Mossyanne1 Registered User

    Feb 10, 2015
    45
    Hi Mommidizzle, I really feel for you as I am in almost the same situation. My OH is really unwell, he hasn't a clue what is going on, took him to the opticians this morning re gluceoma, it was awful as he now cannot read or follow any type of instruction but the optician was so good. He went to sleep at 2pm and when he woke he was so angry, called me all sorts of names and started to frighten me. I always told me kids that I would look after him always but unfortunately I am getting worn down with it all. His toiletry habits are awful and totally denies the mess he makes, it's always some one else that has done it. I am now going down the road of incare,


    Sent from my iPad using Talking Point
     
  19. Mossyanne1

    Mossyanne1 Registered User

    Feb 10, 2015
    45
    Hi Mommidizzle, I really feel for you as I am in almost the same situation. My OH is really unwell, he hasn't a clue what is going on, took him to the opticians this morning re gluceoma, it was awful as he now cannot read or follow any type of instruction but the optician was so good. He went to sleep at 2pm and when he woke he was so angry, called me all sorts of names and started to frighten me. I always told me kids that I would look after him always but unfortunately I am getting worn down with it all. His toiletry habits are awful and totally denies the mess he makes, it's always some one else that has done it. I am now going down the road of incare,


    Sent from my iPad using Talking Point
     
  20. sah

    sah Registered User

    Apr 20, 2009
    332
    Dorset
    Hi. This all sounds so familiar - I have been very close to total burnout lately as well. I think another thing to remember is that no adult can be made to care for another, no matter what the relationship. So-although it would be tough to do-if you said you were withdrawing all care, SS would have to do something to support your OH-and you. It is, after all, in SS's best interests-we are saving them a whole lot of money! Have you anyone who could be there with you? Who could speak on your behalf without being emotionally involved? Just a thought.....good luck!
     

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