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Rubbish at coping

Discussion in 'I care for a person with dementia' started by Brumbie, Jul 11, 2018.

  1. Brumbie

    Brumbie New member

    Apr 13, 2018
    Well, mum has been with us now for nearly four months. She has vascular dementia which was made worse by my dad’s sudden death in March.
    She came to live with my husband and I in our little 2 bedroomed house with only 1 bathroom.
    Over the last few weeks Mum has stabilised a lot. She sundowns every day and is quite demanding and gets upset if things are not done exactly when she wants them done.
    The problem, I think, is not her, it’s me.
    I am struggling to come to terms with her dementia and struggle to feel any emotion. I find it hard to be affectionate toward her as I have trouble separating my ‘real’ mum with the one who has dementia. The one who is selfish and nasty. Don’t get me wrong, I am loving and kind, I just don’t feel it inside.
    My life has turned upside down. I no longer work. I’m with her all the time. My husband and I have no privacy. She hates to see us together and gets upset if we talk to each other.
    All of her feelings I can understand. She has lost her husband and has had to move in with us. She feels she has no freedom. She wants to live alone. She wants to live back where she came from but it’s 4 hours drive away so is not practical, plus she can’t live alone. I do try to explain but she sees me in a negative light. She is so nice and gracious to my husband but irritated and grumpy with me. It hurts.
    I do everything I can to make her life happy and comfortable but she is not happy.
    I suggested going to a day centre but she doesn’t want to. She has no interest in doing anything. When I suggest something or try to get her to do something with me she will say “I don’t feel like it”.
    Every day I promise myself I will try harder but each day I fail. It is making me feel so depressed.
    I feel for her, I really do but I’m struggling with this stranger in my house.
    She wants to live in a care home but doesn’t like the ones she can afford (with social funding). I’m not sure she even realises how it will be in a care home. She used to live in a warden assisted flat with my dad and I’m sure that’s what she thinks of as a care home.
    All this is making me feel rubbish as a person. I ought to be affectionate. I ought to be able to understand. Even after reading books about it I still struggle.
    I ought to get a grip on this but don’t seem able to do so.

    Sorry for the rambling post. Thanks in advance to any who answer and thanks to those who have answered in the past.
  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    hi @Brumbie
    yours is not an easy situation and anyone might well have the same feelings you have
    there are no 'oughts' about feelings and reactions - we feel as we do, that just is - maybe the way you are is actually telling you that this situation simply isn't right for you
    you wanted to support your mum by taking her into your home when you realised she couldn't continue to live in hers on her own, sometimes it's best to realise that you gave that solution a good try but it's not really working
    you say your mum doesn't like the care homes available, though she is unlikely really to do so - did you think that any were suitable for her? - might you organise a move for her, saying that at first it's for a trial period?
    otherwise, maybe arrange some day care and call it a lunch club - you could go with her the first time and sing its praises, then either take her or arrange transport - you need the break
    have you had an assessment of her care needs from your Local Authority Adult Services - a care package arranged through them may well help
  3. canary

    canary Registered User

    Feb 25, 2014
    South coast
    The problem is that dementia will take everything you give it - and then some.
    The empty numb feeling inside you is because your emotions have shut down as a measure to protect yourself. God knows I understand - I am struggling with the same feelings myself. I have been advised to find some time for myself and it is very wise advice, so I will pass it on.

    If you ask someone with dementia if they want to do something the default answer is always no. If you wait for them to agree to something you will wait forever - or at least until you reach breakdown, which is to be avoided at all costs, believe me.

    I think it is time to take control of the situation and organise things for her. As shedrech says - call it something else and just do it.
  4. Tin

    Tin Registered User

    May 18, 2014
    Feel for you, this is exactly how I felt when my mum first moved in with me. The hoops I jumped through to try and keep her happy and of course I never succeeded. I remember one day that she was so determined to get in the car to go somewhere?!! that in the end I let her and kiddies locks on, she sat in the back, for half hour I got a break, but yes, guilt set in and I went out to the car to try and get her out, refused point blank so I left her there. An hour passed and she was fast asleep in there!

    I think whatever mum and I have done outside the house and there is a lot - especially shopping, out for lunch, coffee etc. she has forgotten the next day and just complained to anyone who will listen to her that she does nothing all day and I am a bad girl! She has been caught on camera complaining about her boredom and anger at having to live in this dirty hotel.

    As dementia moved on this sort of thing rarely happens now and honestly that is a relief for me. Managed to find a balance and how to live with all this, even managed to get the dementia to work for me at times. But it is weird living with my mum again, I left home when I was 18/19.
  5. father ted

    father ted Registered User

    Aug 16, 2010
    Hello Brumbie

    You are not rubbish at coping. Looking after someone with dementia is challenging, tiring, frustrating and physically and emotionally draining with occasional moments of joy and reward. It is all these things at a distance and if you are all under one roof that feeling is intensified as there is no escape.
    Simarlarly to you my Mum came to live with me and was here 8 years, the first 6 months were hard whilst we all adjusted. I think Mum felt awkward being in our space not being in her own place but she did settle and it worked well but the last year was very difficult as I was caring for another too and Mum went into a care home.

    As you say your life has turned upside down and you have no privacy. I also empathise around the feeling detached emotionally. I could do all the practical things like cutting toenails, medicines, meals etc and kept myself busy doing these things and household chores because when I had a little downtime I found it really hard to be affectionate with Mum because her mood could change within minutes and she would accuse me of being cruel, argumentative and telling lies. I hasten to add that Mum and I were very close, we used to holiday together and she was and is a great Mum. However caring does take its toll. It puts all relationships under strain and that strain coupled with tiredness and the person's intransigence to do anything that would make life easier for you and benefit them does breed resentment and frustration and that is not what we want to do to someone we love.
    Put Mum's name down for the homes you both liked. It will help you to believe you are actively seeking a long term solution which is important. My Mum always said she would go into a home when we argued or if she was unhappy with me but I always felt she said it to test how much I loved here and my resolve to care at all costs but eventually I could not carry on she went into a home and settled well.

    It sounds like you are coping very well in your circumstances. If you don't think so I wanted to reassure you that I think you are.
  6. Tin

    Tin Registered User

    May 18, 2014

    Sorry meant to add, what others have said, I have never discussed any plans/outings with mum, I just got her ready and into the car, still do, we are always out for an hour or two in the mornings.
  7. Jale

    Jale Registered User

    Jul 9, 2018
    Want to just say a couple of things really, am new on here so feeling my way around.

    Do you have carers for your mum? We put them off because I felt that it should be me who looked after mum, just as she had looked after her mum when she was ill. I did manage for a while, but then because of my own health problems had to admit that I just couldn't do it anymore and carers were arranged. I can't tell you what a relief it was, mentally and physically.

    You have mentioned that you and your husband don't get any time together - we were asked if we would like a volunteer to come in and sit with mum, have a chat etc to give us a break, unfortunately mum was dead set against it but don't know if this option is available to you as I know these things vary from place to place

    Mum is sometimes downright nasty to both me and my hubby, but never to her son, I hated her for it but now have to try and accept it and think that it isn't "my mum" speaking but the dementia. Doesn't always work though and have very often been in tears on a bad day.

    I personally don't think you are rubbish at coping, you, probably like all of us, are trying our very best under very difficult, frustrating and tiring circumstances.
  8. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    South of the Border

    My OH also has vascular dementia, I also have had to give up work - I know exactly how you feel. Everything is about him and nothing is about me - I am a non person. You are the same. Having given up work you have also lost that status.

    I do hope you have a Carers Assessment -

    I have been trying for 18 months to get a grip on the situation, and am now having counselling to help me. The trouble is our own lives slip by while we are the facilitator for our PWD.
  9. Rob_E

    Rob_E Registered User

    Feb 1, 2015
    It's been an enormous upheaval for you and not surprising under the circumstances. Dealing with dementia is extremely demanding and you are having to cope with an enormous amout of change. I agree with what others have said, some kind of support for you is essential, I had to make the decision to bring in carers this year as I do work full time and mum was in the house for too long and was getting quite upset at being left alone. I had resisted at first and was concerned that it would mean losing control, but as it happens the carers have been wonderful.
  10. Hazara8

    Hazara8 Registered User

    Apr 6, 2015
    There is a yawning chasm between caring for a loved one at home and caring within the context of a Care Home. Added to this, every single case is different. We are all different. We have our own likes, dislikes and histories and in 'normal' life even these can bring about friction. Dementia brings with it an enormous challenge, especially when one is caring either one-to-one at home, or indeed in concord with a spouse or partner at home, because when any brain is compromised with a dementia, let us say, vascular, the whole reference to what is seemingly 'normal' for us as a whole, changes and changes significantly. But then, not all the time? A difficult experience with a loved one at home which errs on despair, might be perceived outside that domain (home) by a friend or observer as a fantasy, simply due to the fact that the behaviour of that loved one is more or less 'normal', pleasant, devoid of any semblance of what took place an hour or so before. This I know to be quite true, because I lived with it. The 'changes' in my late mother were many and varied, and at times deeply unsettling. Paranoia was there, as was agitation, hallucination, incontinence, alarm and abject fear. As was tenderness, utter despair and distress, fear, anxiety, humour, long periods of nothingness, much sleep and at times, lucidity. All of this and more subject to a diseased brain, in which the billions of neurons are no longer behaving in the way they once did. Therefore the resultant behaviours are not only at times bewildering to us, but have real meaning for the one living with dementia, even although we might find them antagonistic, unkind, awkward or plain nasty, it is 'communication'. So this 'capacity' which one takes for granted - question and answer, what is on our dinner plate, being able to say "yes" or "no" directly and with intent, or tell the time of day, know where we are or where indeed we might be later on, and so on and so forth - all of that and more changes and changes in quite often very subtle ways, in as much as an aggressive response or even a certain 'dark' look, might be taken as read, literally - which is a mistake, on our part.

    And one can study (as I have done) papers, research programmes, many, many factual accounts from across the globe, numerous forums, high-level discourses into the working of the brain and the mind-boggling functions of the cerebellum or the hippocampus (usually the primary area of attack in Alzheimer's) - all of which is both fascinating and highly significant in gaining perspective on this remarkable tool housed inside our skull - but none of this will enable a smooth or easy ride when it comes to actual CARE. You are at the working face of dementia and it has many faces, which can be confusing and devious. But the one who wears that mask is at the mercy of the disease and not the instigator of it. This is why one has to 'enter' that world with all its demands on your energy and patience,
    because a dementia person cannot escape their extraordinary world. And this, for many, requires a person-centred approach which runs to 24 hour days, if one is to address the disease with empathy and compassion combined. Of course you have also to take good care of yourself, but that can become something of a luxury, unless you acquire help. And what if the said loved one refuses 'help'? Do you insist? Argue the point? Knowing that dementia will always win an argument? If you can -- and this is my own story. Each person will take their own journey through dementia and that is set in stone -- try to see everything in terms of the dementia, as an intruder who occupies the one you love and know, subjecting the loved one to all the trials and tribulations which this disease entails. Whatever it throws at you (sometimes literally) see as 'the disease' and NOT the loved one. The tantrum and the 'nasty' response, again, the disease and NOT the loved one. Then, perhaps, slowly, one's overall approach becomes a 'positive' thing, not prone to angst, irritation, anger, frustration and so on. It is worth a try?

    And you are of course NOT "rubbish" as a person. On the contrary, you are caring for your mother and quite clearly wishing to achieve that care in the very best way you feel able. The world of care in dementia is not like any other, because you are living with that 'stranger', who is in fact not a stranger at all, but your own mother, inhabited by a stranger we term 'dementia'. And if and when you can approach daycare, or the Care Home question, without too much anxiety, but maybe a 'transition' via respite, then all to the good. This only you can judge, because you know your own mother better than anyone else.

    With warm wishes.
  11. Brumbie

    Brumbie New member

    Apr 13, 2018
    Thank you for your sound advice, I really appreciate all your answers.

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