I am grieving for my Mum even though she has dementia

Discussion in 'ARCHIVE FORUM: Support discussions' started by Minnie13, Sep 23, 2007.

  1. Minnie13

    Minnie13 Registered User

    Sep 23, 2007
    Esher, Surrey
    My Mum is 82 and she has had dementia for about 4 years, she had a full time carer who decided to leave, at that time she was only 30 minutes from where I live and I was ale to see her about 2/3 times per week. As she was getting progressively worse my two sisters and I decided it was time to put her into a care home near one of my sisters - about 105 miles from where I live. Mummy went downhill dramatically in the care home and was getting disruptive to the other patients. The GP put her on haloperidol which made matters worse. After 6 weeks she refused to drink and get out of bed. My sister who was visiting her regularly called in the GP who immediately said she was dehydrating and had her sent straight to hospital.

    I have spent the last 8 weeks driving at every possible moment to go and see her thinking it would be the last time. Then after 7 weeks the consultant said there was nothing more they could and suggested we move her to a nursing home with EMI faciilities. We found one where she has been there for now just over 3 weeks.

    From being a fit and active person, she is now virtually bedridden, she will never walk again, canot feed herself but yet she still knows us which is lovely! Yesterday I went to visit her and asked the staff if they could get her into a wheelchair so I could take her outside and sit in the sunshine which she loves. It nearly broke my heart to see my lovely Mum so helpless and frightened being lifted from the chair to the wheelchair - she cant bend her knees and her feet kept falling off the wheelchair foot support. It was the first time she had gone outside for over 12 weeks. She sat there and smiled and was happy to have the warmth of the sun on her. It just made me cry and I feel so sad and emotional all the time.

    I feel so helpless and so sad, I just wished she lived nearer me. The journey is so horrendous, I work, I have a family and just feel so torn. We have always been a close family and this has brought us all closer.

    I dont want to keep crying but as the Nurse at the home said to me I am grieving for my Mum - even though she's still alive and that I should seek support so I did a search for this site today. You wouldnt let an animal suffer like that - I just think it is such a cruel and horrendous illness.

    She could go on for years and I just dont know how I am going to cope, I just cant seem to concentrate on anything and feel constantly guilty about putting her in the care home in the first place! I dont want my husband and sons to see me keep crying even though they have been a tremendous support.

    I'm sure there are hundreds of people like me who are going through this?
  2. Margarita

    Margarita Registered User

    Feb 17, 2006
    yes add me to the list .

    what help me is to think of the postive moments more like when you say
    your not alone , so know how your feeling with the crying seeing them like this , welcome to TP Minnie :)
  3. mocha

    mocha Registered User

    Feb 17, 2006
    Lancs, England

    Dear Minnie13,
    I'm afraid you are certainly not on your own by grieving for your Mum.

    I think the grieving starts soon after the first diagnosis. I know it is for the person they were before and when sometimes they look at you like a complete stranger you feel very sad.

    My husband has been in a lovely NH since December last year and I still can have a weep when I leave him.........if only I could take him home.........But the reality kicks in and I know I would be back not able to cope. I am lucky that I am only a 15 minute Taxi ride away.

    Like Maggie says " do make the most of the good times"

    We all send you support

  4. gracew

    gracew Registered User

    Sep 23, 2007
    This is my first post I found this site while searching for someone who understands. I have just got back from taking my dad out on a little drive and as usual I am so upset. I saw the first post on this thread about mourning for someone who is still alive and I htought 'yes' I understand.

    He has vascular dementia and his condition varies between complete denial of who I am and being a little off with me for pretending I know him, to being a little bit as I remember him. He's only had this since July and I get upset as the person I remember isn't the same person I go and see in the care home..and I want to stand up sometimes and shout 'give me back my dad'.

    It's made worse because he had been secretive for many years and had rarely allowed me access to his house, he always came to visit me instead. On the rare occasions I did visit I was shocked as he had become a hoarder and threw nothing away, the house has a partial collapse at the back, two of the rooms are unusable and the rest of the rooms are completely full of junk. He was a bit of a strict father and when I suggested we tried to sort out the mess he always told me it was nothing to do with me and that when he died I should just get someone in to dump the lot, so stop nagging him. Now of course I am left to deal with it alone and as it can take 1 1/2 hours to get there I am finding it difficult to work, clear the house, visit dad and look after my own children.

    Sometimes I stand in his house and want to scream that it isn't fair that he's left me to do all this, and then of course I feel guilty.

    Obviously I've a huge necessity to clear the house and get it sold so I can pay the care home..but even after working for weeks I'm still not finished as I have to sort everything to keep official documents, sort out clothes that are wearable etc.

    Sometimes it's all just too much for me and I end up feeling desperately sad. I also so miss my dad, we were very close and he disappeared literally overnight.
  5. Devonmaid

    Devonmaid Registered User

    Sep 23, 2007
    Dartmoor Devon
    Hello Minnie, I am in a very similar situation to you , its truly awful . My Mum is 87 and was diagnosed with Vascular Dementia three years ago and is now very ill indeed . We live in Devon and she is in Reading, she was taken into a Phsyciatric hospital a few days ago as she is so poorly and I am visiting her tomorrow . I know just how you feel , Its not my Mother either, she left us years ago and I am drreading the visit tomorrow because hse no longer knows anyone and just wants to be in bed . I wish with all of my heart that she could just slip away, you must be feeling like I am right now , it is a horrible thing to witness and I feel for you . I guess we just have to take it a day at a time but its harder when they arent close by isnt it ? There are no words of comfort in this situation , try and keep your chin up , I am thinking of you .
  6. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Dear Devonmaid, Grace and Minnie,
    Athough words of comfort can be hard to come by, I hope that the realisation that you are not alone in this dementia journey will help comfort and strenghten you. And yes, I think we've all had that "Give me my loved one back" scream in our heads many, many times. I remember sitting in the parking lot in my work crying my eyes out, saying to a friend "I want my mother back".

    Grace, do you have a good friend or friends who could come help you sort out the house? I had my best friend help me sort out boxes and boxes of clothes which my mother had saved from the 70s on. It really helped me to have someone objective there.

    It will become easier to cope with, given time.
  7. Minnie13

    Minnie13 Registered User

    Sep 23, 2007
    Esher, Surrey
    Thank you so much - that has made me cry again! just reading those quotes - you are so right - remember the good and positive moments like that.
  8. Minnie13

    Minnie13 Registered User

    Sep 23, 2007
    Esher, Surrey

    Thank you so much Mocha I really appreciate your support - this site has helped me and I think its important to cry. I feel for you with your husband - it makes you realise how precious and short life is!
  9. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Dear Devonmaid, Grace and Minnie

    While everyone's view of this whole dementia thing will be slightly different, I must say I totally understand your view. It is very much a mirror for the way I felt about my mother in the last 2 years of her life (she had had several strokes). Now, my mother died at the beginning of August so it's still early days, but so far, I have found that the grieving I did while she was still alive has stood me in good stead since she has been physically gone. So now I mourn the woman she once was, not the person she had become. Don't get me wrong, even after the strokes she retained something of herself, she still knew me (mostly) and I still felt she loved me, but the necessary role reversal sometimes made it difficult.

    I suppose what I'm trying to say is that there is no right or wrong way to deal with this emotionally. Sometimes you will be sad, sometimes you will be mad, and sometimes, yes, you will be bored with the whole thing. The extremes of emotion I, personally, found easier to deal with than the more trivial ones. The former seem reasonable, the latter somehow ungrateful or petty. However, they are all valid responses.

  10. Minnie13

    Minnie13 Registered User

    Sep 23, 2007
    Esher, Surrey

    Thank you for your reply. Gosh isnt it amazing how there are so many people out there going through the same thing as us! At least I have the support of my two sisters but at least you can still take him in your car. My Mum always loved going in the car and coming to our house and sitting in our garden looking at the flowers.

    We also sold our Mum's house last month and it was a very emotional time clearing all her possessions of 82 years - like your Dad, she kept everything to all our old school reports etc etc.! But we also had a few good laughs but I was able to do some of it with my sisters but most down to me! Do get a good friend to help you.

    Good luck and thank you.
  11. Minnie13

    Minnie13 Registered User

    Sep 23, 2007
    Esher, Surrey
    Thank you Devonmaid for your support. Yes we would all love her to slip away peacefully and as you say we have to take each day as it comes. Take care driving when you see your Mum - listen to some calm relaxing music. Easy to say, as you say there are no words really! You too keep your chin up!
  12. Minnie13

    Minnie13 Registered User

    Sep 23, 2007
    Esher, Surrey
    Thank you Joanne for your kind words. Yes I am sure it will become easier with time. This is such a helpful site.
  13. Minnie13

    Minnie13 Registered User

    Sep 23, 2007
    Esher, Surrey
    Thank you so much for that. Yes I am sure you are right grieving when they are still here stands you in good stead! Also the different emotions - sometimes I do get mad driving on that wretched motorway sitting in traffic jams when I could be doing other things!

    Bless you and I hope all goes well for you.
  14. Tina

    Tina Registered User

    May 19, 2006
    Hello all,

    I agree with what Jennifer says. And also, somewhere on TP, someone called AD/dementia "the long goodbye"...

    Dear Minnie, grace and Devonmaid, I felt much the same as you do now. You start grieving while your loved ones are still alive because, step by step, parts of the person you know and love disappear and it's a sense of loss every time that happens. Much of them remains though, and the trick is to look out for those flickers of recognition, the smiles and responses that tell you they are still there. Easier said than done, I know, when the sense of loss is so overwhelming. I still found these responses at stages when my nan and gramps and aunt were already beyond communicating verbally and were bedridden all the time. However, I used to compare them to the people they were before the illness, and more often than not, that made me cry. On the way to hospital / nursing home, while i was there with them, on my way home, at home, you name it...

    Not every visit was dreadful though, and I didn't always feel awful about seeing them in the condition in which they were. You don't really get used to it, but I remember many times coming away from them thinking "That was a 'good' visit. They're in a good place, they're calm and peaceful today, seem content, they're looked after and surrounded by kind and caring people." Many an hour I used to sit with my gramps in his room and read a book or a paper, just quietly enjoying the fact that he was still there while he slept or snoozed in his chair.

    Thinking of you and sending kind and caring wishes.

    Tina x
  15. Minnie13

    Minnie13 Registered User

    Sep 23, 2007
    Esher, Surrey
    Hi Tina

    Thanks for that, you are right, not all visits are bad and sometimes I go and see my Ma and she is very content even though away with the fairies, so I must remember the good ones. Its so helpful to hear other people's stories.

    I know having a good cry does help - for a while anyway!
  16. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    leigh lancashire
    Dear Minnie13,my dad and family had our concerns about dad confirmed yesterday.He has moderate alzheimers.I was elated that he is eligible for treatment and was quite happy.Then after tea yesterday the grieving started.I feel so much for everyone who have loved ones in the later stages of the disease (even though the early stages are not pleasant).I can only re-iterate others postings as i am not in a position yet to offer anything more.I am sure our time will come and i only hope the wonderful carers and families on TP are still around.love elainex
  17. Taffy

    Taffy Registered User

    Apr 15, 2007
    Dear Minnie Grace and Devonmaid,
    I would also like to welcome you all to TP I am sorry that you also have to take this journey, BUT, pleased you have found TP. Sharing this journey with others in the same position will enable you insight and wonderful support. I send each of you my Best Wishes. Regards Taffy.
  18. Kate P

    Kate P Registered User

    Jul 6, 2007
    Everything said on here so far "speaks to me" as it were.

    My counsellor talked to me about the "long bereavement" as she called it and for me personally it's quite true.

    Mum has been unwell for four years although we've only just had diagnosis and in that time she has changed into someone that I no longer know - it's incredible that there are no remnants of her left although oddly she kisses and hugs me more than she did before she was ill.

    Over time both my sister and I have been through denial, bargaining, anger, grief but can never find acceptance. A lot of the time we get flung back into any of the earlier stages as it is a grief that just keeps on going - I can never make my peace with this odious disease and everytime there is a further degeneration I get angrier and angrier.

    I feel for you all as you are further down the line than us but I sincerely hope that you find solice and understanding here at TP. It's a wonderful place filled with wonderful people who offer support, help and sometimes just a virtual hug when there's nothing left to say.
  19. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    You do grieve for them, even though their body is still with us here. Unfortunately you go through some or all of the grief stages when someone has dementia. For me a critical point came when I realised that a lot of the anger and depresssion I was feeling was because I wanted "My Mum" and although I was in a lot of pain that for me was the turning point when I accepted that "My Mum" was gone and was not coming back to me. That was also when I felt that "My Mum " had died.

    I think that I am lucky in that I have reached that point of acceptance. it isn't easy and I still cry at times but it lets me deal with the lady my Mum has since become..and she has had a few re-incarnations since. Each time she has another TIA I grieve for the person that she has become who is no longer with us. For me rather than being a long bereavement it has been more a case of multiple bereavements with each getting slightly easier as the person she becomes has become more remote from "My Mum."

    The lady "My Mum" has become is happy and content with her life which makes me happy. Yet again after being ill these last couple of weeks she has chosen to pick herself up again and carry on.

    It is hard and there are a lot of tears with this illness but never feel that you are alone.


  20. gracew

    gracew Registered User

    Sep 23, 2007
    Thank you it is very comforting to have others understand how I feel. Reading the other stories has made me appreciate that this is much more common than I ever imagined, there are so many trying to cope with both emotional needs and physical requirements..I never knew you were all out there.

    I think what frightens me is that Dad is so physically well despite being 81 that I need to plan for many years of care and I assume, from reading the fact sheets (thank you Alzheimers society) that having vascular dementia means he will deteriorate to greater or lesser degree as the years (or months) go on. I noticed for instance that yesterday dad had completely forgotten how to tie a shoe lace, and that was sort of frightening. It's day to day things I seem to get panicky about..if he can't tie a shoe lace should I buy him slip on shoes, or should I merely tie the shoes myself? My old dad would have gone barefoot rather than have me lean down and tie his shoe laces..but he didn't seem to mind.

    The home called me last night as he's had a fall. He's fine he didn't even need a doctor called but it made me realise that I am always listening out for the phone and hoping he is being treated well (which I believe he is).

    My thoughts are with all of you others as well and I will carry on reading the other threads now.

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