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Guilt, Anger & Sorrow - my mother wants out, out, out

Discussion in 'I care for a person with dementia' started by Katee, Nov 14, 2015.

  1. Katee

    Katee Registered User

    Sep 19, 2013
    16
    Female
    Glasgow
    #1 Katee, Nov 14, 2015
    Last edited: Nov 14, 2015
    My mother is in a wheelchair and uses a 'Stedy' mobile support aid that allows her to stand up to be moved from bed and her chair. We use this to transport her to the toilet, shower, etc. She has no upper body strength and is a heavy, dense weight. My 88-year-old father is her main carer and I help with cooking for most of the weeks' evening meals plus other shopping and trying to sort out the mess of my mother's paperwork (she has a buying impulse and hides everything from me).

    My father has just had a mild stroke and has been told not to drive. I live 40 miles away and have been staying overnight again each week to take him to hospital appointments, shop, wash, clean and whatever they need. We took mum and dad on holiday and although house had wheel chair access, it was extremely difficult getting her out of bed or on to lavatory without this aid. She fell trying to get on to loo seat more than once and was badly bruised. Even before my father was taken ill, it is so difficult getting her in and out of both his and my car and I am refusing to take her out as if she falls I'll never get her up. Because of her buying impulse (either through catalogues or my father constantly giving in to her) she is always very restless. She only likes a limited amount of programmes on TV, can't concentrate to read, doesn't like to do anything craft-wise and doesn't want talking books. All she wants is to talk or go out and their nearest shopping centre is always hazardously busy.

    They are both in denial about how ill my mother is and I know that when my father gets the all-clear to drive again, he will take her for miles in the car and I do not think either he or she is up to it. They were awarded four carer visits with two carers per visit but won't use this help.

    They are making me stressed out with worry. I have cut off from all my friends because this has been going on for years. I can't make commitments because I don't know when next something is going happen (as it has in the past). My son has mild learning difficulties and I don't have time to help him. Until recently, she went to daycare which she loved. She says she's not been up to it and she does get very tired. I feel so bad not taking her out.
     
  2. min88cat

    min88cat Registered User

    Apr 6, 2010
    581
    Hi Katee

    Unfortunately as they are both in denial, there isn't much that you can do except wait for a crisis. The fact that they have been awarded 4 double handed care visits per day seems to demonstrate a reasonably serious situation as this is the maximum that anyone can have unless you pay privately for more.

    Much as I hate to say this, I would try and take a back seat and let them get on with it.
    Hopefully in the end your dad will see sense and accept external help. Make arrangements to see your friends. He'll accept help,when he thinks they need it.
     
  3. arielsmelody

    arielsmelody Registered User

    Jul 16, 2015
    515
    First, I would say that you need to take some time to yourself - it can't be right that you are feeling stressed and ill and have cut off from your friends, and it isn't fair on your son if you aren't able to give him the support he needs. If your mum & dad have been awarded carer visits, perhaps you need to make yourself less available so that they have to learn to accept help from the carers.

    My mum is in a wheelchair and my dad can no longer drive, so they use a wheelchair taxi - it is expensive, but it would be a lot safer for your mum and dad.
     
  4. nita

    nita Registered User

    Dec 30, 2011
    1,817
    Female
    Essex
    #4 nita, Nov 14, 2015
    Last edited: Nov 14, 2015
    It sounds like your Mum may have got to the stage mine did where it was not safe for her to even stand and be helped to the wheeled commode. Has she had an OT assessment? Have the carers said it is getting too much even for two of them?

    If she is still safe with the equipment you mention, then it would be possible I suppose for her to be taken out in a wheelchair. Our care agency offered "social stimulation" visits lasting a few hours when they could take people out nearby, i.e. with them walking. I didn't have to use this service. I took Mum out on buses in her wheelchair (with great difficulty as they didn't all lower the platform far enough, some had ramps they could get out for you).

    I also used the "London cab" type taxis and the driver would get Mum in, pushing her up the ramp. It's just a suggestion (might not be suitable) that if you can't easily get her into a car, maybe a taxi would be an idea just to get her out. I still wish I could take my Mum out (she is bed bound now but still thinks about going out).

    I've just seen Arielsmelody's post and see that she suggests the same thing!!

    Of course, with you being at a distance, you wouldn't be involved so it would be up to your Dad to take her. Can you persuade him that she is in danger of a fall if he tries to get her into their car? This suggestion may be completely useless but I am thinking that while she can just about get out, to let her enjoy those times as long as possible. I don't know the age of your father (sorry, I see he's 88!) but it might be too much for him to push her anyway?

    I think getting her back to the day centre is a good idea. Presumably they pick her up by minibus transport? Even if it tires her, it would be good for her. Could she perhaps go for a shorter time or less times per week?
     
  5. nita

    nita Registered User

    Dec 30, 2011
    1,817
    Female
    Essex
    Oh dear, I've just realised that they don't have the 4 carer visits a day! Your father obviously needs their help, having had a stroke. Is there any way you can persuade him to take them up? What about speaking to the Social worker and telling them they are both vulnerable and at risk and something must be done. Maybe if the SW came out and talked to them, they would accept it.
     
  6. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    I know this might be difficult but is there any way that they might both benefit from a day centre? If they went together and therefore there was 'no option' for your Ma then that might make a difference and it would give you some peace of mind to know that they had both eaten that day and your Ma would be unable to indulge in buying. You might have to tackle that by removing finance cards at some point!!

    It seems to me that your Mum would really benefit from a return to the day centre and so would everyone else!!!

    You are doing an amazing job, but take care of yourself xxx
     
  7. Katee

    Katee Registered User

    Sep 19, 2013
    16
    Female
    Glasgow

    You have hit the mark. Thank you for taking the time and trouble to respond to my dilemma. Both are fiercely independent. Can't see I shall change this situation. Thanks very much. K
     
  8. Katee

    Katee Registered User

    Sep 19, 2013
    16
    Female
    Glasgow
    Thank you very much to all - there are alternatives - if I can persuade my dad! Great idea. Thanks again.

    katee xxx
     
  9. Moorcroft

    Moorcroft Registered User

    Nov 4, 2015
    70
    My mother has tended to turn down help, preferring to rely on my brother and me rather than pay for services, or even take up the offers of help from neighbours. Like your parents, she is in denial, so she always sees what we are doing for her as temporary, because she is going to get better.

    I recently had to get tough with my mum about accepting help. I made it an issue that she causes a lot of stress for me and my brother by refusing help from others. That way I've been able to get her to accept a carer coming in each evening, and medicine reminder calls. In her mind she doesn't really need the help, but is doing it just to please me. Maybe you need to do something similar with your parents?
     

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