1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. gloops

    gloops Registered User

    :( my lovely mum died in October after a long struggle over ;10 years with the ravages of alzheimers .I cannot begin to say how much I miss her and how much I loved her .
    I am told that with time I will remember her more when she was well and the memories will be sweeter
    For now I think only of the final months and what the disease did to her.
    Perhaps ,for us the bereavement process is along one
    Has anyone had any of these thoughts or had the same experience
    Gloops
     
  2. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Welcome to T.P.

    So sorry your first post is such a sad one.

    Of course you miss your mum, and the most recent memories are nearest to you at present. I cannot say what time will bring, as we all grieve in our own unique way.

    Just to say I am thinking of you, and I am sure someone on TP will have more words of comfort for you. Connie
     
  3. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Gloops,
    So sorry to hear about your mum. My mum is in the later stages of dementia;she has been ill for over 10 years. Like you I struggle to remember her well. I think that we start to grieve from the moment we first realise that our loved ones are slipping away from us, and for some this grieving goes on for years and years. We live in a no-mans land of having our loved ones there, but unable to reach them except for fleeting moments, and those moments become ever more fleeting. We become pleased to see such small glimpses of the person that our loved one was, that I think we forget the bigger picture that we had of them; maybe it is self preservation, because if the bigger picture was always in our minds the long term grieving would be unbearable.
    I am sure that you have been missing your mum for many years, but that you have had to contain the hurt. I am sure that...no, I'm not sure at all, I hope that you will gradually regain the fuller picture of your mum, as your brain lets your heart know that it has the strength to see it. Oh God, how I hope this, because I too want to remember my mum and the good times. But it is not my time yet, I still have to be alongside her with her illness. I do not know your current pain, I can only imagine it. Take time to grieve. I think in some ways dementia makes people outside the family just think that death must be a welcome relief for us, and that it is less significant because our relative may not have known us for years. They don't understand the intensity of the relationship that you have with a relative with dementia if you have walked alongside them throughout their illness.
    Take care Gloops. Thinking of you.
    Amy
     
  4. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Gloops,
    I am so sorry for your loss. Why don't you write down your memorys of your Mom. It might help you to relive her life from a time that she wasn't ill.
    I have tried to imagine how I will feel when the time comes. I am thinking it will be a two edged sword. One sad that she is gone, the other happy that she is well and in a better place.
    Just remember you are entitled to your feelings and that they are normal. Grief is a process and will subside in time. Be good to yourself.
    Debbie
     
  5. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Dear Gloops

    I'm so sorry to hear your grief; it's the price we pay for loving someone and it is SO painful during the first year. Each "first time" seems to rub salt into the wound; the 1st Christmas, family Birthdays, Mother's Day, snowfall, Easter, springtime, summertime & other more personal memories.

    My father died from cancer 6 months after diagnosis; I think it was about 2 years before I could get my memory back to the man he was pre-cancer, pre-hospital wards, pre- character change, pre-dying. His final 2 months seemed like one long living nightmare, and that stayed with me & haunted me for a long time.
    One thing which helped me was digging out old photos. 3 years after his death, my Mum was flying out to Australia for the first time to stay with my brother & his family, and wanted to make up a family album to show the kids. Making up that album cost us a lot of tears, but also enabled (forced?) us to talk about his death, as well as his life ("Do you remember ...")
    Somehow, it helped me to get back to the Dad I knew, and push back the awful images of him during his illness.

    Your feelings ARE normal, and you WILL get past this stage, but no one is likely to say it's easy, or can say how long it will take for you. As well as grief, you are probably still suffering from the after-effects of a long "caring" situation, including the distress of the final years/months. Have you seen your doctor about how you feel? It may be that some grief-counselling or support should be considered.

    One more thing: although I lived at home with Mum & Dad whilst he was ill, Mum & I hardly talked to each other about what was going on, or how we felt. I know that sounds crazy, but I felt I would be adding to her distress if I shared how desolate I felt, and (years later) she told me she had felt the same. Ironically, by 'protecting' each other in that way, we forced each other to bottle up a lot of the pain. Not a good idea, not at all. You need to cry, to talk to someone who understands; have you a sister or brother, Aunt, Dad who are probably feeling the same? You could be doing them a favour too. We English are notoriously "stiff upper lip" in situations where we should be letting our heartache have free rein and getting it out in the open. Don't be afraid; you'll make it.
     
  6. KaC

    KaC Registered User

    Feb 26, 2006
    32
    surrey
    Gloops

    Iam so sorry to hear your sad news and can only imagine the pain and sadness

    my sister lost her husband suddenly and for many months could only remember the pain in his face on the way to the hospital but this memory has now faded

    and I hope that the "fog" of memories will clear in time for you and you will have sweeter memories

    thinking of you

    Karenx
     
  7. gloops

    gloops Registered User

    Thank you

    Thank you everyone for your messages.I got a great deal of comfort from reading them.
    Im developing a strategy for myself, that when the images and flashbacks of my mum on the ward distressed or confused, I take a deep breath and remember the smiling face of the mum who loved us every moment of her life.
    Ive also attended my first Alzeimers society meeting.Although we visited the cafes together ,I feel now I can contribute more, and perhaps be of some use with my nursing knowledge.
    Thank you all again
    Gloops (mums nickname for me )
    PS can anyone share their thoughts on genitic testing and brain tissue samples My family and I are just about to enter into it all.?
     
  8. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    520
    vidio

    hi gloops . i lost my husband last may, he was just 63 and i nursed him for 7 years , it is still hard to get past the memories of the last dreadfull year though 10 months on .however today my nephew called with a CD he had made up of all the old vidio,s i had of my husband,before his illness, they were a treat to watch ,and for once i could think of him the way he really was,sharp witty and very funny ,i shed a few tears but mostly happy tears ,i hope you have something like this to comfort you .stay strong .angela
     
  9. Loiner

    Loiner Registered User

    Oct 29, 2005
    73
    Leeds, UK
    hi,
    I lost my mum 2 months ago in jan. Grief is a unique process for everyone and some cope better than others with it. Remember if u feel u cannot cope, get professional help.
    I was seeing shrink for the stress of caring, and now bereavement is added to that list.
    I am sad, but i keep hearing mums voice telling me to look after myself, and I can cope.
    Seems a lot of things she said over the years, tho monior at the time come back now and help me through this.
    Don't listen to any guff about u should be over it by now, there is no set time to grieve it is entirely personal.
    I think as a carer, and being with someone so long the grieving process is more intense.
    I have my faith to support me as well, the vicar that buried mum wrote to me about memorial services they did, and I went to one, where the names of the dead were read out and candles lit for them.
    All of it helps, but in the end, take it one day at a time, and remember the nice stuff, not the stuff when your mum got sick.
    I count myself lucky to have so many nice memories, and think often to them, hope this helps

    David
     
  10. zan

    zan Registered User

    Jan 4, 2006
    96
    staffordshire
    dear Gloop, I lost my Mum in November . She was unable to move because of strokes on both sides of her body and semi-conscious for the last month of her life. At first, all I could see was these last few months and it was horrible, but gradually I can look further back in time and can see the good times and my mum happy and enjoying life. You have a long time of sadness to get through as your Mum had AD for so long but keep looking and you will find those happy memories. I have a photograph of my Mum when she was very young and I look at that often instead of the recent photos as things were deteriorating for her. I look at her smiling face and it makes me smile too. I am sure that both you and I will never 'get over' what has happened but with time we will 'get used ' to it. Take care. Love Zan
     
  11. Louise Jones

    Louise Jones Registered User

    Apr 11, 2006
    7
    Birmingham
    My nana died

    I've been a carer for my nan for 9 years from the age of 17. It will be three weeks tomorrow since she passed, and its her scattering of her ashes tomorrow. My nana was in restbite at the time and she couldn't wait for us to get there to say goodbye before she passed. I coped quite well arranging the funeral because it still felt as if I was still caring for her, but now the funeral is over and all the family have gone home and back to there lives, I'm still here at home and my life has stopped and now the grieving has started. I started looking for jobs yesterday, because the bills are still rolling in and money is in short supply so its tight to say the least. I just can't stop from crying and I don't think I'm ready to join that big world just yet, I still haven't let go. I know my nan is in a better place, and I'm glad I don't have to watch her suffer anymore especially with her epilepsy aswell as the alzheimers, but I miss not touching her hand, telling her I love her, the caring role in general, my life has done 360 degree turn and I think I'm still in shock. I just want to know how long does it take before you get the confidence to get back out there and start to live again?

    I'm sorry for the depressing post, I'm just feeling pretty low at the moment.

    Louise.
     
  12. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Dear Louise,
    You can't rush grief, it has its own time schedule. You would hurt yourself if you try to put a lid on it before it has run its course. There will never be a time that you don't think of your Nan and a rush or grief will revisit you. Grief is a gift inthat it is a way to continue to love and miss someone that used to fill our life. But you learn to live with it, you learn to not let it consume you and you learn to let go. It will diminish in time.
    You will feel apart of life again when your ready to. Take baby steps each day to build your life. If AD teaches us anything it is that life is short, llife is uncertain and life is precious. Your Nan would want you to have the best life you can possibly live and to be happy.
    When you scatter her ashes tomorrow and give her body back to the earth, know that her spirit is alive and you will see her again. I'm sure she is smiling down on you and so proud to have such a loving granddaughter!
    Take care,
    Debbie
     
  13. soozieann

    soozieann Registered User

    Dec 7, 2005
    20
    Wallington
    To Gloops & Louise

    Dear Gloops and Louise,

    My heart goes out to you both and I wish I could give you both a big hug.

    I'd like to echo everyone's views here, that there is no set time for grief, I don't think it's a linear thing, although the old cliche 'time heals' is true. It's sort of comes and goes when you are least expecting it.

    My Mum died a month ago, and for a while I just felt relief. I had been so busy over the last year when the dementia and her increasing frailty was worse, I hadn't much time to feel sad.

    When she was in hospital dying, I was too busy running in to see her after work, and running the family home as well. When she had died, I was too busy organising the funeral and making sure everything went to plan. I was back at work the day after and then the day after that my sister and niece returned to the States.

    Now it is the Easter holidays and I'm off work for two weeks. I now realise how exhausted physically and emotionally I am. Today, I was changing the beds and thought of Mum in hospital and in the home, and just started crying. Another time I will remember her clearly as she was when my son was born, 14 years ago- stong, loving and really on the ball.

    I don't know what words to say to help, but cry if you want to- there is comfort in this. I don't believe death is the end, if it helps, pray or send your loving thoughts to your loved ones- I am sure they will feel your love.

    I wish you well, and please take good care of yourselves. Rummy was right, take baby steps, minute by minute, day by day. Remember to treasure yourselves- you are remarkable people.

    Love Soozieann
    xx
     
  14. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Every one said about every thing about grief , just like to add it took me 3 long crying up & down merry go round to get those happy memories back from when my father died .

    Then my mum sister died slowly over Christmas, may be I am cheating, but this time around I am blocking those sad last mouths of seeing her dieing , they do flash back in my mind sometimes ,but I chose to remember those happy time I had with her ,at this moment in time I can not have photo around the house of her I have taken them down, when I am ready I shall put them back up ,why upset myself more ?

     
  15. Louise Jones

    Louise Jones Registered User

    Apr 11, 2006
    7
    Birmingham
    Thankyou for your support

    Thankyou for your support!
    As you know today was the day we scattered my nana's ashes, the weather stayed dry for it too which was a bonus. Unfortunately apart from being upset all I could feel was anger because of certain family members that were there! it was only ever mum and I that was there for my nana, 24/7. All the other family members disappeared, and when we asked for help they were quite nasty, now all we keep hearing, she didn't know what was going on, she didn't know us! but I know my nana had a level of understanding, she couldn't communicate with us apart from her smile and twinkle of her beautiful blue eyes. I gave up my life for my nana, and I would do it over and over again! I'm just feeling bitter, because my life as I know it has been taken away and people who turned against us wants to have peace of mind.

    My mum has taken time off work to be with me as I'm not coping very well at home. Its very quiet and I don't have my routine anymore so I find it better when I have somebody around me. Especially somebody who went through it with me. My nana, mum and I always called ourselves the three musketeers, but now theres only two and were having to adapt. I knew nana was a big part of my life but only now am I realising how much of a void she has left in my life.
    I hope my nana knows how much I love her so very very much.

    I'm sorry your having to listen to me moan, but I suppose you go through so many emotions when your grieving.

    Its nice to know I'm not on my own out there!
    Thankyou guys,
    Take care of yourselves,
    Louise x
     
  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Oh bless Louise

    three musketeers, One Missing ,but still joined together in soul .
     
  17. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Louise, don't be hard on yourself. Try to wipe the thoughts of the other members of family out of your mind, it will do you no good to rehash the past.

    You, and you alone know what Nana was going through, how she thought, and felt. Take time to grieve her in your own way, and then take a little time just for yourself. I am glad you and mum can support each other.

    Thinking of you, Connie
     
  18. soozieann

    soozieann Registered User

    Dec 7, 2005
    20
    Wallington
    Chin Up Louise

    You poor love, I am so sorry to hear your family are not supporting you and appreciative of all you and your Mum did for your Nana. Do you think it is maybe guilt? When Mum died, one of my sisters who lives in America, who is usually the kindest person, got quite shirty with me because I was handling things better than her- she also got really nasty with my husband when my Dad died, many years ago now. When her husband died, she was really angry with him. So, what I'm trying to say is, maybe the unpleasant atmosphere by your family was guilt??

    Who knows, but don't let the negative feeling destroy you and bring you down. I'm so glad you have your Mum there with you so you can support each other. You say you have no routine now, so it must feel like you are being buffetted by storm winds right now. Try to develop some routine in your life, I know you are looking for a job, but do you think it's the right time for a challenge like that? I am sure money problems are looming, but maybe you could put it off for a while? Have you spoken to the doctor, maybe grief councelling would help?

    A few routines you may try possibly are going for a walk every day, doing some exercise routine at home [maybe yoga?], setting yourself a task [maybe cooking a special meal for yourself, or writing a letter to a friend, or even writing a letter to your Nana- I am sure she feels your love].

    Whatever you do, do it step by step. If you feel swamped by anger or distress, try doing something physical like vacuuming or digging up a bit of the garden.

    Anyway my dear, my thoughts, like everyone elses, are with you at this very hard time of your life.


    Hugs and best wishes
    Soozieann
    x
     
  19. oonaghw

    oonaghw Registered User

    Dec 4, 2005
    18
    isle of man
    Its been a while since I logged on - although I am a regular visitor.

    I lost my darling mother in December after a battle with VD. It was a horrible battle one which left my mother screaming for the six weeks before she died - the screaming started when she was transferred from the hospital to a nursing home and resulted in her being transferred to a Victorian style psychiatric hospital, where she died. The one, and most important thing, was that the nursing care she received was second to none - although poor ma did not know that.

    At first I was numb and I suppose relived because I felt sure she was gone to a better place and that she was at peace - there was not going to be positive outcome for her. Working full time keeps my mind focused on other things and it is only when alone - as I am going to bed or getting up in the morning that I find myself crying. I know my mum was gone before she was gone but I miss her so much.

    My memories are still of that Victorian room in that hospital - such a narrow room with such high ceilings - thick walls, the naked light bulb and the door that open outwards - flashbacks. They are diminishing though. I have found a lovely photo of my ma ( taken three years ago this summer) she’s got a lovely smile which shines through her eyes - I have it right by my bedside - so she's there when I am going to bed and when I get up in the morning. The other thing that helps me hugely is that I am wearing my mothers wedding ring beside my own - one which she wore for nearly sixty years - when I feel the pain in my heart I touch her ring and ask her to be with me - sometimes I think I feel her.

    Rummy suggested writing down the memories - I think that’s a fantastic idea and one which I hope I am going to be able to do. I tried to earlier but I think it was too soon.

    This as Soozieann say is the Easter holidays - where most of us have more time for thought - I've found myself very low over the past few days - cause usually I’d go to look after ma over the holidays - but she’s not there.

    Louise I pray that now you have laid your Nan to rest that you find a job - something to give your routine and focus - and walk the pain away - by bed time you'll be so tired you have less time to think. I am glad your mum is with you and that you both understand the third musketeer is just in the next room. Her spirit is with you.

    Love to all who have lost and to those who are suffering.

    Have a restful break.
    Oonagh
     
  20. chrissieL

    chrissieL Registered User

    Jun 22, 2005
    54
    Shropshire
    I too lost my husband on Sunday morning, he had vascular dementia. He had a massive stroke at home, but died in hospital 12 hours later. He was unconscious the whole time and knew nothing about it at all. He had had a lovely day and was happy, he showed no signs of being ill and had been looking forward to the warmer weather and was planning where he would like me to take him for outings etc. He was in his chair waiting to watch the golf on t.v. and quite, quite content.
    I have been very lucky in that he became a total sweetie, was very co-operative with me and although caring for him alone was hard work and very tiring, I'm glad I did it because it allowed me to know him very well in a way I didn't before and I am at peace because I know he was happy and that I did all I could.
    I thank God that he didn't have to go to the end of the road with his dementia and that now he is finally at peace. His funeral is on Wednesday and he will be cremated and have his ashes scattered in the memorial gardens near his father as he wished. I'm still very shell shocked and missing him greatly, thankyou for letting me pour this out, maybe now I can start to grieve and let it all come out, my love to you all,
    Chris.
     

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