1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. tuscon

    tuscon Registered User

    Oct 1, 2014
    Today 73 years ago my parents got married - mum a beautiful young girl of 22 and dad 12 years older. Dad died 30 years ago.
    My darling mum finally lost her dementia battle at the end of April. She had been in a care home since August (I never stopped feeling guilty), she never settled, and I found myself going in every single day for 3-4 hours. I would get her up, shower and dress her and, since December, fought a losing battle to get her to eat and drink. During that time she had 4 UTIs and the fallout from those were awful. I didn't know that my sweet mum could turn so nasty and abusive. It took a while to accept that it was the disease and not her. The times when she asked who I was broke my heart. The weight fell off and when she died she weighed 4.5 stone and I literally watched her fade away in front of me. On that awful last day, she had had no food or drink for 4 days. I was with her for 11 hours until she took her last breath in my arms. I am grateful that I was there for her and she did not die alone but I hope that I never have to go through that again. I cannot get the events of that day out of my mind, it plays on and on in a loop. We had to wait nearly 3weeks to hold the funeral which didn't help. It has been 5 weeks now and I wonder how long it will be before I can think of mum without breaking down. I miss her so and I feel empty.

    So, finally today, on what would have been their 73rd anniversary I took mum's ashes (half them) and buried them under my dad's rose bush. This was the final thing I had to do for her. My sister wanted to take the rest back to the States where mum had many happy holidays with them. On her 75th birthday they took her to Oahu, Hawaii where she had the most wonderful time. She loved the island and its beauty and my sister felt she would be happy to go back there. I was not sure at first. Have I done wrong by splitting mum into two? I hope not. I think she will like being with my dad and on a beach in Oahu.

    I still feel the need to come on TP and see how other people are faring. I don't post because I feel there are people out there with far greater problems and mine seem so small in comparison. However, through these last 9 months I have found TP to be of enormous help and comfort. I thank you and send my best wishes to each and every one of you.
  2. 2jays

    2jays Registered User

    Jun 4, 2010
    West Midlands
    Painful times for you xxxx

    the good memories will come back

    Thinking of you xxxxx

    Sent from my iPhone using Talking Point
  3. jan.s

    jan.s Registered User

    Sep 20, 2011
    Hi, I'm so sorry to hear about your mum and the sad ending to her life. She is lucky though to have such a caring daughter who spent so much time with her throughout her care home days.

    There are so many aspects I can relate to in your post (my husband died 8 weeks ago). i too was with Roger when he died, but I keep reliving those final moments; I am told with time, these visions will fade. That is not the way either you or I want to remember our loved ones.

    If it's any consolation, your mum is away from the awful ravages of dementia and is at last peaceful, and with your Dad.

    I think it's wonderful that she is also going to Hawaii.

    I and told time is a great healer, and that the memories stay and sadness lessens. I hope so for both of us.

    Take care x
  4. tuscon

    tuscon Registered User

    Oct 1, 2014
    Oh Jan I am so sorry for your loss. If losing a mother is so painful and hard to come to terms with, how much worse must it be to lose a loved husband and soul mate? I hope that peace and calmness will replace the bad memories for both of us. Thank you for your kind words, they brought tears to my eyes. Sending you my best wishes. Tx
  5. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    I am sorry for your loss, and hope better times ahead. No I don't think you were wrong splitting mum, ashes should be scattered to the wind to be free and explore.
  6. tuscon

    tuscon Registered User

    Oct 1, 2014
    Thank you 2jays for your kind words.
    I'm trying hard to deal with my sorrow and pain. Mum would be very cross and would tell me "to pull myself together." So today, on this bright, sunny day, I have gone into my garden for the first time in ages and planted lots of her favourite flowers. In a few weeks I shall look at them and think of the lovely times we had pre-dementia.
    T x
  7. tuscon

    tuscon Registered User

    Oct 1, 2014
    Thank you Patsy for reassuring me. I had my doubts but you are correct, she is free now, free from suffering and pain.
    My best to you all
    T x
  8. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    Tuscon. I'm so sorry that you are going through this heartbreak; grief is grief whether for a parent, spouse, or tragically a child. The ones left behind still suffer, I just hope that those who have gone before are at peace with no pain or confusion.

    My Husband's passing also plays on my mind; he choked on the food I gave him-it wasn't a good death and it plays on my mind. I try to visualise him with his parents and sister, and friends who had gone before. I hope he is waiting for me.

    Look after yourself

    Lyn T XX
  9. tuscon

    tuscon Registered User

    Oct 1, 2014
    I am so sorry your husband died such an awful death Lyn.T. I understand how those memories must haunt you. The mind is so cruel, it never lets go and just replays things over and over. No matter how much we tell ourselves to "get a grip" it is not easy. How I wept when mum took her last breath just 5 weeks' ago. I cannot stop seeing her sunken cheeks and eyes, her lips cracked and dry despite all my efforts to keep them moistened. When she took that last breath I just could not believe that I had lost her even though I had been praying for her release from the dreaded dementia. Just thinking about it brings tears to my eyes. I must stop it - for goodness sake I am 69 years old and should be able to deal with this. No one understands - only those of us that have travelled this road. I think of all the thousands of people out there travelling the very same path and wish them strength to cope with what lies ahead.
    I hope life gets easier for you and you find peace soon.
    T xx
  10. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    However old you are the end is tough-even more so when you think what went on before. Maybe a quicker death is easier to deal with-I don't know. People tell me that as I'm only 57 I will rebuild my life. Will I? I don't want to without Pete by my side. A half life trying to be strong and occasionally brave-I can't think about that too much

    Be good to yourself

    Lyn T XX
  11. LucyCW

    LucyCW Registered User

    Feb 25, 2015
    Rainham Kent
    Hi Lyn,
    My first post, truly I can emathize with your situation.
    My beloved Tony and I were together 20 years, then in Dec 2006 he shocked
    me by proposing on bended knee in a pre Christmas crowded restaurant with a
    ring he'd commissioned. Because I was 19 years younger than him, he insisted I turn 50 before we married so we planned for Feb 2007.
    We were planning our wedding in April 2007, literally looking at fabric as we were going to make my dress and his waistcoat ourselves. He went out to buy milk, 10 mins walk from home ....
    Slightly aside, he'd been a nocturnal epileptic his entire life and it was so well controlled he rarely had fits. Until without warning his meds were changed 8 months before he died. His fits increased including during the day but were manageable.
    He had a fit on the way home, just around the corner in our neighbours gateway. He fell and went into "status fitting" which means he couldn't stop. The hospital didn't recognise he was fitting until I arrived 30 mins later. My darling died 2 days later.
    I'm 58 now, and I'm told I'm young enough to rebuild my life ~ he was my life, the only one I wanted.
    Time I have found helps me to grieve in a more socially acceptable fashion. I still miss him daily, and it hurts that we've been apart so long ~But, my solace is that he is safe, pain free, waiting for me and for him this time is just the blink of an eye.
    For my part I try to live a life worthy of us both, I love pottery and he was just starting to try it so I do pottery classes for us both. He loved to help others so I volunteer where I can (I care for a widowed brother in law with dementia and I have health/disability issues which can limit me).
    I try to enjoy life for us both and I do special things on our special days, birthdays, engagement day, what should have been our wedding day. I buy myself flowers because he would if he could.
    The days that I'm overwhelmed with loss, I take as a duvet day and cry. Because most days I can smile, I think of the joy he brought me with his life and try to put that in place of the sadness his death brought.
    A friend described us as two hurt people who together made a whole person. Without my love I'm half a person but I try to live so that he'll be so proud of that half when we catch up.
    My thoughts are with you, take care Lucy

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