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Coming to terms with the loss of a loved one due to Alzeimer's

Discussion in 'After dementia — dealing with loss' started by NZ2015#, Jun 9, 2015.

  1. NZ2015#

    NZ2015# Registered User

    Jun 9, 2015
    11
    My mum has recently passed away. The GP gave the cause of death as Alzeimer's. Mum had had Dementia for many years and finally had to go into care, very much against her will, in Jan 2014 as she could no longer live independently with help from me and my sister.
    After January 2015 her condition worsened (probably as a result of treatment for malignant melonoma). Her memory became very bad; she forgot who I was a couple of times and also asked me if I knew who she was. She was terribly frightened and kept asking us to help her but there seemed no way to reassure her as she forgot everything we said almost immediately.
    We were contacted by the care home on the Monday and told to "prepare ourselves for the worst". My sister had visited Mum the previous Friday and there had been no signs of any imminent decline. When we visited her on the Monday she could no longer talk, except for occasional outbursts of shouting for help and get me out of here.
    We spent the next 5 days with Mum. She was not able to communicate properly with us again but the screaming out for help continued as well as regular unreal outbursts of strength when she would sit up and try to get out of bed.
    She could still manage liquids on the Monday. By the Wednesday she could not even swallow liquids. She was given morphine and also anti-anxiety medication. Still she managed to cry out for help and sit up.
    She passed away on the Saturday.
    I am left with the images of the last 5 days, which I cannot get out of my mind. I have no idea when she was aware of what was going on and when the medication might have given her some relief. Because of her memory loss, I have no idea if she heard what we said or understood what we were saying or remembered any of it.
    It is difficult coping with the death of a loved one, but impossible when you are not sure what that loved one was thinking, feeling or understanding.
    If anyone can throw any light on these last stages of this horrendous disease that might bring us some comfort then they will be gratefully received.
    Thank you
     
  2. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,051
    GLASGOW
    What can I say to help you dear friend? I cannot answer your question but I believe from past experience that hearing is the last thing to go. Im sure she heard you and despite her dementia that registered with her.

    Your main comfort should be that you were there even though it was so hard. You saw that she was well cared for and with family. Surely that is all any of us wants. She can now live on in your memory. Please get a photo where she was whole, vibrant and happy and put I where you will see it. It will help erase those last pictures in your head.

    My mum is still here but my Dad dies of cancer and the last 2 weeks were traumatic. When I think of him now I see my happy picture of him in my mind. Your Mum was so much more than someone with dementia, and someone who passed. Find those memories.

    I will be thinking of you and Im so sorry for your loss. I hope you find some comfort in your grief.
    Love quilty
     
  3. Blogg

    Blogg Registered User

    Jul 24, 2014
    64
    I'm so sorry for your loss. My dad died 5weeks ago today. Like you we were with him over the last few days of his life and he too asked for help and was given medication for agitation. The first 4 weeks were horrendous, I was complete tormented by the images of the last year and in particular the last few days.

    I'm by no means over it, but I can now remember things other than those horrifying memories. Grief is such an intense experience and everybody is different. I hope with time those scary memories fade.
     
  4. kenaidog

    kenaidog Registered User

    Apr 8, 2013
    164
    So sorry for your loss, my mam died today and i have the image of her face imprinted on my mind now so i know how you feel. My mam went so quick too, she has literally got really worse in the space of weeks and days, last week i got a call to say i needed to do a end of life plan and today i was told she went down hill really quick in the night. Its hard to get your mind around this but i do know how you feel one day they are standing, the next week they cant get up , the next week there not eating well, all this seems to happen to quickly for so many, i know it happens different for different people but i just wanted to let you know that yes this can all go so quick and you have no control at all, you just have the memories,I hope you keep your memories, They may have lost all the memories but you will have them forever and for that i am thankfull,
     
  5. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    526
    British Isles
    So sorry for your loss and that your mum's last days were so difficult.
     
  6. Acco

    Acco Registered User

    Oct 3, 2011
    228
    Sorry to learn of your sad loss and the difficult days you have experienced. I firmly believe that there is a greater degree of understanding by a person with dementia of what is said to, or done for them, than they are able to communicate to others themselves. So take comfort knowing your mum would have understood her situation and the difficult times that has created for you. She would also, I am sure, have known and appreciated the care that you have given to her during her illness. As someone else suggested, find a lovely photo of your mum and either place it somewhere it is readily viewed or carry it with you so you can look at it whenever you wish - it can help to replace the picture in mind of your mum as you saw her during the last few days. I hope you soon have peace of mind.
     
  7. NZ2015#

    NZ2015# Registered User

    Jun 9, 2015
    11
    Dear Quilty,

    Thank you so much for your message.

    You are right; I need to remember Mum not just as someone with dementia or someone who has died but as "my lovely mum". It is difficult at the moment as my sister and I have been looking after her ever since my dad died (23 years ago!). She has never been able to cope with life since he died and, with hindsight, the first symptoms of dementia started about 20 years ago.
    She was never diagnosed with Alzeimer's so the cause of death was really upsetting, despite us all knowing that's what she had.
    The last 10 years have been pretty awful and, no matter what we did, we could never make mum happy. She has spent the last 5 years or so telling us repeatedly that she wanted to die!
    But there were happy moments - I just can't think of any at the moment - I do have a lovely photo I took last October (one of the few visits I made where I did not come away in tears) which I have been looking at.
    I am so sorry about your dad. My dad died of cancer too and it took me many years to "get over it".
    Thank you for taking the time to write your kind words x


     
  8. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,051
    GLASGOW
    I have a very similar experience to yours. I have cared for mum for 20 years. Its been very hard and she has had mental health issues. I also have bern told she wanted to die. I also think she had alzheimers much longer than we thought.

    Be kind to yourself. You gave the best of yourself and did a very hard job. Nobody understands except the folk here. Keep posting as your helping many others as well as yourself.
     
  9. NZ2015#

    NZ2015# Registered User

    Jun 9, 2015
    11
    Dear Blogg,

    Thank you for your message.

    I am so sorry about your dad and what you all went through.
    I was reading some of the info about Alzeimer's yesterday and it refers to the feeling of loss that carers can experience over long periods as the disease takes away a little bit more of the person you love. I know what you mean about the images of the last year and final days - at the moment I can't remember far enough back to find any nice images, but I know they will come back to me in time.
    At the moment I feel so guilty about all of it I think my brain is punishing me with the bad images - I feel I don't deserve any comfort! Stupid I know.....
    Anyway thank you for your kind thoughts, especially as you have gone through the same thing so recently.
    xx


     
  10. NZ2015#

    NZ2015# Registered User

    Jun 9, 2015
    11
    Thank you for your kind thoughts
    x
     
  11. NZ2015#

    NZ2015# Registered User

    Jun 9, 2015
    11
    Dear Kenaidog,
    I don't know what to say - I'm so sorry!
    We stayed with my mum for several hours after she died as we had to wait for the doctor and then for the funeral people to come. After a couple of hours her face had changed; there was no more pain or fear and she looked at peace, more so than she had done for some time. I knew that she was all right now. She had nothing to worry about any more.
    I went to visit her in the chapel of rest but realised that she "had gone". I like to think she is with my dad at last, which is what she had wanted.
    You are right about the memories. They are very precious. At the moment though it hurts too much to remember the nice bits and my brain is intent on making me see all the recent horrible stuff. Grief is a weird thing.....
    I do hope you are able to deal with everything and take comfort from those memories of your mum. I will be taking the advice I have been given and looking at that lovely photo of my mum taken last October, even though it hurts so much...
    Thanks for your thoughts, especially at such a terrible time for you xx



     
  12. NZ2015#

    NZ2015# Registered User

    Jun 9, 2015
    11
    Dear Acco,

    Thank you for your kind words.
    There were a couple of times on the Monday and Tuesday, when my sister and were talking about silly things and my mum had a little smile. A moment of clarity where she understood what we were saying. She told us to "shut up" a couple of times too!
    She spent the last 20+ years continually telling us she "didn't want to be a nuisance"
    I do hope she understood enough in those last few days to know that she wasn't a nuisance and we were doing our best, that we were trying to help.
    Thanks again x

     
  13. NZ2015#

    NZ2015# Registered User

    Jun 9, 2015
    11
    Thanks Quilty.

    Mum had regular appointments at the Memory Clinic where they used to repeat the same test each time. Even though her memory had deteriorated drastically and she could no longer manage on her own (didn't know if she had eaten, would go out and get lost and couldn't understand the written instructions we gave her) she managed to get a higher score each time! Even Mum used to laugh about it and referred to the consultant as "idiot face"!
    She was treated for depression, which, with hindsight, was probably the start of the Alzeimer's. She attended a day centre a couple of times a week, which she loved but would spend the rest of the time hiding away in her flat, having no contact with neighbours or old friends in case they thought she "was mad".
    It ended up that my sister and I were the only ones she had contact with. My brother lives in Australia.
    I would come to stay at her flat and she would be fine until I left. Then she was so upset, I used to wonder if I should have visited at all. After a while, when I visited she would cry when I arrived, virtually the whole time I was there and then be distraught when I left....
    I wish we had had a proper diagnosis as I would have read more information. Some of the info I have read this week would have been useful a couple of years ago. I suppose I should have looked up info back then anyway, but without that "diagnosis", I think people are in denial. We certainly were!



     
  14. kenaidog

    kenaidog Registered User

    Apr 8, 2013
    164
    nz, we can all think like that, what we should or shouldnt have done, but the reality is that unless you have previous experience of the signs and symptoms, you would have no idea. God knows how long my mam had it before we knew anything about it, it certainly didnt seem visible till it become obvious.They try to hide it and explain away the strange things they might have done, i know mine would have done strange things anyway so it wasnt anything new to me. Plus then there is the denying yourself part, I think the last thing on anyone mind is that there loved one has alzheimers , Then of course you have to deal with the reality and how badly they change, maybe they dont in some circumstances but from what ive seen i think a lot go through the same actions etc when the disease avails its self,It took me a long time to except that she really was this ill.Then you have to deal with it all, your own feelings and thinking how bad it must be for them, there is no way i would ever wish this on anyone, it must be like being trapped in a come while being awake if you can see what i mean, I think all the shouting out for help is really a cry for whats happening to them as they cannot control it, they will never understand it which is good, but they are trapped with there minds and later there bodies. Im sure you did all you good and tried your best just like i did. Take care i try not to beat yourself up>
     
  15. NZ2015#

    NZ2015# Registered User

    Jun 9, 2015
    11
    Thanks Kenaidog.
    My sister and I always made light of it when mum used to tell us she couldn't remember anything. We used to say how we often forgot things (going to the fridge but not knowing why you'd gone there or going upstairs to get something but forgetting what it was you wanted).
    She used to say how worried she was about it,so eventually we got her referred to the memory clinic and more recently had a mental health assessment carried out.
    Whenever they tested mum she would suddenly develop amazing powers of memory, as if nothing was wrong at all, and the docs looked at my sister and I as if we had made it all up!
    I think it was a pride thing - mum didn't want people to think she was "mad" so tried to hide it from everyone except my sis and me.
    We are both still having terrible trouble dealing with it all. Every day seems to bring a different emotion.
    I hope you are doing ok


     

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