1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. TinaT

    TinaT Registered User

    Sep 27, 2006
    #1 TinaT, Oct 20, 2015
    Last edited: Oct 20, 2015
    ………………….Empty. I’ve lost myself. My mouth has crumbled with disuse. I paint my face, choose my clothes with care and go out into an empty world where I speak to no one and no one speaks to me.
    My one purpose each day is to visit Ken, the only person in my life who needs me. My sick, demented Ken with whom I have shared a lifetime. He still needs me, still believes in me, unable to see how I have let him down. Sent him to live amongst strangers who are as isolated and trapped as he is. I spend my time with him as I would with a sick child trying to ease his pain and confusion. I make things worse in the end because I always walk out and leave him there. Walk out knowing that he needs all that I can no longer give him. He is a stranger with whom I now share part of my empty life.
    I return to my empty home to sit with the empty, hollow feelings in my heart. I sit and eat alone. I watch tv alone. I’m empty, spent, nothing left in my heat but memories. Why is there so much pain when you reach a certain age? The older I grow, the less I love life. Age is seeping into my bones.
    Sons of my flesh who I adored. Men now with cares of their own. Family has nothing more to give to me and I have even less to give to them. I am empty. They are lost to me now, separated, cord cut and out of my heart. I don’t know what they want from me or I want from them.
    Life is a cruel joke with the last laugh on me. I have no joy. Joy left me a long time ago. I’ve lost the ability to love. I’m an empty shell……………………

    I wrote all the above four years ago. I found it in the bottom of a drawer I was turning out. Ken has been dead for the last three of these years.
    I no longer have the agonising stab of the daily visit to watch the man I love slowly dying. I still have gut wrenching guilt. I should have done more, been more, given more. I have learned to keep guilt tightly locked in a box. I no longer allow myself the luxury of self recrimination. I tell myself I’m a strong, independent woman.
    I’m still alone but am quite, quite used to being alone. Most times I actually enjoy my solitary existence. I can have a pyjama day when I neither wash my body nor comb my hair. I can spend a whole day working in my garden. I have my daily friends on the radio and the tv whenever I want to escape. I can do what I want, when I want. Freedom of a kind.
    I have the family when I want the family. I’m a beloved great aunt and grandmother, but on my terms. I can feel part of the family whenever I feel like it. I give myself the luxury of refusing invitations to visit if I do not have the inclination.
    I’ve remembered my few friends again. We meet and treat ourselves now and again to a small holiday or a visit to the shops. I see them when I want to see them.
    I’ve even got a small job at my great age! This keeps me in touch with routine and the discipline of working with others for short periods of time. But only when I want to.
    I think I’ve taken control of my life after a long, long empty period when I was lost. I think...

  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Wow Tina , I got a fright when I first started reading, thinking it was about you in your present state. What a relief to read it was all in the past and you've come through into a much more positive way of life. :)
  3. jan.s

    jan.s Registered User

    Sep 20, 2011
    #3 jan.s, Oct 20, 2015
    Last edited: Oct 20, 2015
    Tina, this rang so many bells for me. Thank you for sharing that, and making me realise just how far I have come, but no where near as far as you.

    The guilt still lingers, wondering could I have done any more, but I have to console myself that I did my best at all times.

    Jan x
  4. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    North West
    I much appreciated your post Tina and I'm sure others will as well, whatever stage of the journey they have reached. It is always good to hear from people who have managed to build a new life for themselves where, though they can never forget the bad times, they can at least find some positives. It gives us all hope.

    Thank you for posting.
  5. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    It sounds as if you are at peace with yourself. I'm glad.
  6. sleepless

    sleepless Registered User

    Feb 19, 2010
    The Sweet North
    Thank you for posting this Tina. Both the brutally honest description of your life at such a low point and equally honest picture of where you are now.
    I would like to add that as well as doing all the things described, you also respond with good advice and empathy on this forum. Your experience, hard earned though it is, has given you an authoritative wisdom that I certainly pay heed to when I see your name come up.
    With heartfelt good wishes,
    Sleepless x
  7. marionq

    marionq Registered User

    Apr 24, 2013
    Raw emotion indeed. It is good you can look back at where you were and be thankful you are now in a different place. This will be helpful to others who are still hurting. I had my black doom days earlier this year and poured out such feelings in an interview I did for the carers group. They sent me a transcript and when I read it again a few months ago I felt very sorry for the person who was me at that point.

    Thankfully I too have moved on. Let us hope for better days for us all.
  8. jimbo 111

    jimbo 111 Registered User

    Jan 23, 2009
    North Bucks
    Hello Tina

    Point One : It is great to see your post once again after such a long absence

    It is with no disrespect to our present members ,but it is nice to reflect on past years and think of so many members who have ‘disappeared ‘
    I am sure your words will strike a chord to many members who are either struggling to come to terms with their life with their loved one in a care home , or fighting the desolation of a loved ones death
    In my time on TP I have always had the greatest admiration and sympathy with those who were faced with the separation of a care home
    I cannot imagine the dreadful feeling of loss that they go through
    It was bad enough when Helen was in hospital on many occasions
    Maybe a strange thing to say but I was lucky enough that because I cared for Helen at home ,my parting was when she died five years ago
    Death though devastating is final andI have gone through all the traumatic phases since our parting
    I best describe my present feelings , that the pain is still there but it has lost some of it’s sting and I can fully understand your feelings about being alone
    I am not particularly healthy and often when I am miserable wonder why at the age of 86 I must face the daily grind of old age
    Then I stop. And remind myself of the benefits I have
    My days are regulated by the carers I have to help wash and dress me in the morning and help me undress at night
    When your 86 and you have a regular band of ( 40/ 50 ‘ish} young ladies keeping you happy , there are still some consolations in life
    My social activity is rather restricted but I do occasionally go and chat to my old friends at bowls
    So taking the positive attitude like you describe in your post
    I am grateful that life has a lot to offer and hopefully I will make more effort to take control of my life
    Thank you for your post
    I wish You Well
  9. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    I can relate to so much of what you wrote 4 years ago Tina, especially the feelings you had. I have not yet learnt to keep the guilt locked away and it keeps hitting me in the heart.
    You give me hope that it might one day ease just a little.
    I am glad your life is under control now and that you are at peace for yourself.
    I hope that continues for a very long time. x
  10. TinaT

    TinaT Registered User

    Sep 27, 2006
    It is good to reconnect to people on TP. Hope my post has helped in some way towards some sort of understanding and reconciliation. We all share the effects this tumultuous journey of life we have been given. Some of us going through it and some of us on the other side of it.

    God bless you Jimbo, you make me feel so humble. You are a star!!

    Life continues and bad times do sometimes get easier.

  11. gringo

    gringo Registered User

    Feb 1, 2012
    The first part of your post spoke volumes to me. That's how it is.
    I am in the exact situation you were.
    I have no expectation of arriving where you are, nor can I bring myself to contemplate any kind of future.
    I rejoice that you have achieved a measure of peace.
  12. LadyA

    LadyA Registered User

    Oct 19, 2009
    I have to say, that although I went through agonies of guilt before William went to the nursing home, and for the first few weeks, as he settled in, and would (for the first couple of weeks) want to come with me when I left, and then want me to stay with him, for the most part, the guilt didn't last long. It reared its head a couple of times, and got smacked smartly. Once I saw so clearly how William was thriving and blossoming in the nursing home - doing so much better than he had been at home - how could I feel guilty for giving him that chance at better health because he was eating & drinking enough, better care than I was able to provide, more stimulation, regular access to physiotherapy and all the other benefits? And to see him relaxed, happily allowing the staff to care for him, delighted to see me every day - and be able to relax with him - rather than be always anxious and fearful of his next aggressive outburst. So, I'm just really thankful, and fully at peace about him having those last 11 months, happy and relaxed and peaceful, in a place he loved.

    Living alone does take some getting used to. And I totally agree about those luxuries that only those who live alone can indulge in - like a very occasional "go away world" day! My very favourite though is to just have something like a sandwich or beans on toast for Sunday lunch! Who wants to be cooking all day on Sunday?! :D
  13. TinaT

    TinaT Registered User

    Sep 27, 2006
    I am so glad Lady A that you have provided the balance this thread needed.

    Every dementia sufferer is different and therefore the level of stress at having a loved one cared for in a residential setting is different. I'm absolutely convinced that this was the very best thing for both yourself and your husband.

    If only I could relate something similar about my husband's level of contentment and that he was truly thriving in whatever care given either at home or in a residential setting. The level of suffering he endured either at home or in care was unbearable for me to witness.

    It is true that for a while when home with me he was happy enough but the demons came after a short few hours and tormented him to death again. Believe me, it wasn't for the lack of trying to assuage these demons, they wouldn't leave him alone.
    I freely admit that I couldn't cope, just couldn't settle him in any way.

    But that isn't to say that is the way every dementia works. Some dementias are kinder than others both to the suffers and to the ones left trying every which way to cope.

    I learned this over a long very emotionally exhausting time which has left the scars.

  14. LadyA

    LadyA Registered User

    Oct 19, 2009
    Yes, I am all too familiar with the dementia demons, Tina.William's dementia was far from kind (although I was blessed in that, although he didn't know my name, he knew, right to the end, that he loved me.). William suffered horribly from paranoia, delusions and hallucinations. Thankfully, anti psychotics really helped him. I had been so determined to keep him at home until he died, but, like you, it got to where I just couldn't cope on my own. There wasn't enough help, and the situation had become dangerous for both of us. William would aggressively resist any personal care from me. He had a couple of falls, and was far too heavy for me to lift. He became dehydrated to where he almost collapsed. He wouldn't take his medication. In the nursing home, he relaxed - if he heard voices? Well - there were lots of people around - of course there were voices! The uniformed male staff never had problems with doing personal care with him - in fact he would go to them if he needed the loo!
    I think Tina, that's why I can be at peace about it. I would rather have been able to have him at home. But the way things were going at the time, William wouldn't have lasted more than another few months at home, and he was in constant anxiety. Once in the nursing home, he felt more secure and he lived - and enjoyed - 11 more months.

    But I know from my years on here that our experience of nursing home care is not everybody's. We were very fortunate.

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