A lifelong friend and me

Discussion in 'I care for a person with dementia' started by Palerider, May 19, 2019.

  1. Palerider

    Palerider Registered User

    Aug 9, 2015
    320
    Male
    North West
    #1 Palerider, May 19, 2019
    Last edited: May 19, 2019
    In 2011 I left London to come home to the North West, after a long career as a senior nurse in intensive care. When I arrived everything was normal as far as I could see with my parents. Dad had been treated for melanoma which had spread, but he'd been treated and had survived past the 5 year mark (just). I had secured a job in New Zealand with a one way ticket, but something held me back -my mum. If I could have taken her with me I would. So with mum in mind I didn't go to New Zealand.

    I had always mixed feelings about coming home, it was my roots and natural, but on the other hand dad and I never got on and he was a drinker ( and quite a ******* when he was ****ed on whisky). I had resolved if mum went before dad that I wouldn't take on care responsibilities for him. What happened is that dad died before mum and so here I am writing this. In 2015 dad died from his cancer, within three weeks his of admission to hospital. That chapter closed quite suddenly and I have to say quite emotionally. What was left was mum and me and a whole new world of Altzheimer's, mum and me.

    Mum and I are are old friends, we are lucky in that respect. We have stood by each other through thick and thin whatever comes. We have supported each other and even both took our A level art and pottery together a long time ago which I am glad we both did. I didn't really start caring for mum until 2015, she had been diagnosed in 2010. She had a bad fall at the end of 2015 and when examined in hospital they said she was 'quite remarkable' given her diagnosis -I agreed she was amazingly good some five years after diagnosis. But, there was one problem, mum refused to take her donepezil, she had done since they were first prescribed and dad, for love nor money couldn't get her to take them. So I gave her an ultimatum either she takes the tablets and I can help her, or she doesn't I won't be able to help for much longer. Consquently she started to take them.

    We have got through nearly four years without needing much help (although I have on occasion nearly torn all my hair out), but over the last six months things have began to escalate. Plus I work full time in the NHS and can't give up my job, I am single and have to think about my future when I am old and grey too (if I get that far the way things are going at the moment). I might be an experienced nurse, but caring professionally is very different to caring for your own, and I can say fairly honestly my emotions span from being ok on happier days to being very dark on bad days. Which brings me to something I have seen glimpses of in these forums, how we cope and how not coping takes over the carer, I saw one phrase 'carer breakdown' in one thread.

    In 2005 London was bombed by terrorists, I was called into work to intensive care. I won't describe what I saw or what hospital I was working at, I will say it was horrific. But we carried on as we Brits do, 4 of our patients survived in ICU, one sadly died the night of the bombings. A year later something then happened to me and it seem to come from nowhere. I was sectioned under the MHA for acute depressive episode with an element of psychosis. I was treated for three months and returned to work a very different person to the one I was before. So much had been going on in my life all the stress, worrying about my parents at home, my own unhappiness in London and then the bombings, it all took its toll. Its over ten years now since that all happened.

    I have recently involved social services (SS) as I can't cope on my own anymore with my good friend, mum. I have to say I always thought social services would be more caring and forward coming in advancing help when it really is needed. I like many others on this forum have learned that I am in fact naive on these matters and can say truthfully my emotions have ranged from feeling like I have failed mum and extreme anger towards the SS and in fact to the state, that seems to let us down over and over again. I am in tune with my emotions now after my own episode in 2006 and I can recognise the darker side of my personality when it tries to pervail and know what to do, but caring for mum puts me like many others at risk of 'carer breakdown'

    There are so many different stories on this forum, I wish I could help where I can help but I can't unfortnately. What I will say is that breakdown comes in many different ways and often isn't noticed by the person experiencing it. When I was a student on my mental health placement (along time ago) I asked if psychiatric professionals become unwell too, they replied 'you can't work in a paint shop without getting splashed'. Food for thought.

    If you have a question please do contact me, will help if I can

    xx
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,678
    Female
    Scotland
    It's Interesting to me that you should write this today. I had an episode of "losing" it with my husband today and have been asking myself questions about my temperament and ability to continue. Of course this responsibility we all end up with is not of our making but it still has to be faced and a solution found. I don't believe we should make ourselves ill in the course of caring and yet that is often a possibility. There are big questions to be asked of government involvement which never seem to reach a conclusion either.

    You have been through so much as well as doing a socially vital job yet here you are in your hour of need feeling social services are not helping you as you deserve.

    I don't have an answer for you or for me but the difficulty of caring alone for someone whose reasoning has gone is not being addressed in a meaningful way. A way of coping for those who have to work and care at the same time is glossed over. My sympathies for all that has happened. Best wishes.
     
  3. AliceA

    AliceA Registered User

    May 27, 2016
    2,146
    Thank you for being here and offering to support. I am sure that you are well aware of looking after yourself but make sure you do. It is so easy to slip!
    You have had a tough time and as you say caring professionally is so different when one is emotionally involved. Sometimes a small thing can break us, it creeps up while we are coping with the larger things.
    So a big welcome to the club that few want to be a member. Xxx
     
  4. father ted

    father ted Registered User

    Aug 16, 2010
    683
    London
    'You can't work in a paint shop without getting splashed' is such a good analogy I have never heard it before.

    You have been through so much and yet from somewhere you find the strength to carry on and offer help to others. It is indeed a steep learning curve. I too, have worked in the caring professions and found infinite depths to be kind and nurturing to strangers but much harder when there is a familial connection. Does this make me a bad person? No, only human and flawed like everyone else.
    I have worked in Social Services too and have gradually seen it squeezed and stripped of all its resources and left with overworked social workers trying to meet the needs of many with the money for few.

    It is important to care for yourself but so hard to realistically achieve in many parts of the country.
     
  5. Lawson58

    Lawson58 Registered User

    Thank you so much for your very honest and reflective post. I am sure that your story has found a connection with most of us here on Talking Point and I would guess that your struggles with your own mental health strike a chord in all of us.

    I have no idea of how anyone could do what you did at the time of the bombings without it affecting your own sense of self and without it forcing you to confront the evils of this world and still find something good and worthwhile.

    Thank you.
     
  6. Palerider

    Palerider Registered User

    Aug 9, 2015
    320
    Male
    North West
    #6 Palerider, May 20, 2019
    Last edited: May 20, 2019
    Yes its a good analogy and one I have never forgot. All we can do is keep going, that is all we have at the end of the day, regardless of what comes. I agree Father Ted, no one is infallible. I agree social workers have literally nothing to work with these days in terms of social care, and they have made me very aware that they don't like the system they have to work with, but it is what it is. Someome with great financial power sits in a little office somewhere, worrying about the budget, so much so they loose sight of why they are there. Essentially it will take a crisis for any help to come here, as so many others have experienced; I await that moment with an anxiety I can't describe. As a nation we have to come up with something better and soon. How some people I have met on this journey cope I just don't know. If I could give them a medal I would for courage and compassion.
     
  7. Palerider

    Palerider Registered User

    Aug 9, 2015
    320
    Male
    North West
    Thank you, indeed a club I would gladly rescind membership to xx
     
  8. Palerider

    Palerider Registered User

    Aug 9, 2015
    320
    Male
    North West
    I agree with all of what you have written. I do think whatever our situations, we are pushed into an area that really requires more than what we can give ourselves. I wrote not for myself, but I know there will be people out there that will experience breakdown, as a warning that we don't often see it coming.

    One day in the future I will look back and think, that was probably the worse part of my life so far, and with love and good memories I will move on.
     
  9. Palerider

    Palerider Registered User

    Aug 9, 2015
    320
    Male
    North West
    Last week I did something I couldn't bring myself to do before, I took mum to see a care home. Its a village complex and caters for day care and of course in my books the unmentionable residential care. It is a bridge I have not been able to cross for sometime. Recently I read a superb account by an American nurse and how she realised that as nurses our approach is to restore people back to their former health and how this made her get things so wrong initially. In Altzheimer's this is the wrong approach. It was only through reading this I that could begin to accept I am facing the inevitable decline of mum, and to continue thinking the way I was would be no use to mum or me.

    The care complex has a hair dressers, so tomorrow I am taking her for her hair to be done, and more importantly to get her used to going there. She really likes it, even when I said I wouldn't be able to go with her, she said she would like to live there. So I have filled in the application and let the SS know. There is a waiting list, but it is LA funded and in 6 months from now I can foresee mum will be unmanageable at home.

    I don't like setting foot in the place as even now after reconciling myself, I still see it as failure, but I have to think about mum to and also I have to learn to let go.
     
  10. father ted

    father ted Registered User

    Aug 16, 2010
    683
    London
    Hello Palerider,
    It sounds as the place you have found is just the right place for your Mum in the future when it is needed.
    You are so right too about the medical approach is all about restoring people to full and functioning health and with dementia you are having to rethink all you have been trained to do and work with what you have trying in all sorts of ways to help the person keep a hold of their routines and maintain their relationships.
    With my Mum I did try to carry on with all the things she liked but as AD took hold those things no longer gave her as much pleasure as before or she could not focus for long enough on a film or TV programme. Her pleasures were different and I had to learn and accept that.
    I do wish you well with your Mum. My Mum has been in a care home for over a year. Yes I still feel guilty but importantly my Mum is settled and quite happy. When the time comes I wish the same for you.
     
  11. Palerider

    Palerider Registered User

    Aug 9, 2015
    320
    Male
    North West

    Yes absolutely, I'm finding the same with mum. What we used to do together is falling away and it no longer works. We have good days and bad days, but as with all relationships our ways are beginning to part just in the everyday things. I'm quite funny as I have moments where I'm ok and others where I just burst into tears and blab to myself for a while, feel terrible and then realise I have to get on. Mum keeps on asking me if I'm ok, -'of course I am mum, don't worry'......says it all really
     
  12. canary

    canary Registered User

    Feb 25, 2014
    9,673
    Female
    South coast
    I notice that you said that it had day care. Perhaps you could organise your mum to go once or twice a week as a sort of stepping stone before residential care.
     
  13. Palerider

    Palerider Registered User

    Aug 9, 2015
    320
    Male
    North West
    Hi Canary

    Yes thats the plan to get her to day care first. We're still waiting for a package of care, as the SS can't find any takers at the moment, without that there won't be anyone to put her in the taxi in the morning as well as making sure she takes her meds. I've spoken to the care home, they did do transport last year in this area as they had a few clients, but this year they're not. Its fine when I'm not working, but when I am (when day care really is needed) it obviously isn't going to work very well. Nothing seems to go smoothly at the moment.:rolleyes:
     
  14. canary

    canary Registered User

    Feb 25, 2014
    9,673
    Female
    South coast
    No, nothing seems to when dementia is involved
     
  15. Palerider

    Palerider Registered User

    Aug 9, 2015
    320
    Male
    North West
    #15 Palerider, May 21, 2019
    Last edited: May 21, 2019
    Well the morning started off OK, mum was looking forward to getting her hair done and kept on about the time and that we need to go. When we got there she changed and started saying she'd had her hair done yesterday. Things got a bit choppy, but the ladies in the hairdressers were amazing and got her settled quickly, so I went without interrupting. I waited downstairs in the cafe and watched people come and go and drank some very good coffee and felt anxious that she'd walk out, but she didn't.

    Today I have had to re-start citalopram, something I haven't had to take for sometime, but my anxiety is beginning to spiral out of control and needs must. This is another episode of my own health beginning to suffer along with recent DC cardioversion for fast AF (a fast heart rhythm), which the medical consultants have put down to pure stress. Six months ago I was on no medication, now I take three. I worry if I collapse at home if anyone will find me and who will make sure mum is ok. The ladies at the care home said they found mum quite challenging, in a nice way and said basically I need to start looking after myself and stop worrying about mum. I agree, but the process takes so long in getting things sorted -unless as I keep saying we hit the point of crisis
     
  16. Helly68

    Helly68 Registered User

    Mar 12, 2018
    353
    Palerider - I think you are doing what you can. The balance between preventive action and avoiding a crisis is really tough, especially with non existent support services. You need to take care of your own health. Hopefully you can continue to introduce the CH gradually. We did this with day visits with my Mum, and it worked well. She settled in well.
     
  17. father ted

    father ted Registered User

    Aug 16, 2010
    683
    London
    Glad that your Mum got her hair done with no hitches. The people there must be well versed in dealing with challenging behaviour or non compliance. I frequently worried about how those caring for my Mum would manage her 'little ways'. I could anticipate what would trigger an adverse reaction or rattle her chain and thought but how will they know without me being there but more often than not they did manage it. Also they were not me so Mum reacted differently to them than she might with me.

    With regards to meds- no one likes taking them but they are doing their job for now. Anxiety and Depression can spiral out of control easily especially when you are in a situation that you have no control over. They are best treated with the 3 T's- Time, Tablets and Talking. Time will come when you won't need them anymore. Take care.
     
  18. Palerider

    Palerider Registered User

    Aug 9, 2015
    320
    Male
    North West
    Unusually I managed to get a pic tonight. She looks like her old self, and it perked her up no end. Its been months since her hair has looked so good.

    mum today.jpg
     
  19. marionq

    marionq Registered User

    Apr 24, 2013
    5,678
    Female
    Scotland
    Lovely. Clearly well looked after.
     
  20. Palerider

    Palerider Registered User

    Aug 9, 2015
    320
    Male
    North West

    Its hard work and its beginning to get a little too much going to work knowing mum is 'home alone'. I have writen to the SS about how this situation is beginning to affect my own health -they just ignore it
     

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