1. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Who am I

    Think I posted this some time ago when I was struggling for an Identity.
    I know who I am………Connie, aged 67. Mother of 2 sons, grandmother to 3 boys, 2 girls, aged 16 – 5.
    Carer to my lovely Lionel – aged 64. Would give my life for him, BUT, it would not bring him back, so just try to give him the best time possible…………but not at the expense of my life. We all owe it to ourselves to be kind to us…….so come on……tell me about you.

    (Not sure if this is the right forum), someone will soon move us if not.
     
  2. giftofgaladriel

    giftofgaladriel Registered User

    Jun 27, 2006
    6
    Newcastle
    #2 giftofgaladriel, Jul 1, 2006
    Last edited: Jul 1, 2006
    Connie. there is so much to this than you are saying? Lionel is obviously the love of your life but he is no longer himself. Never ever feel guilty about how you feel about him. Dementia moves the goalposts. What do you feel you have to do now?
     
  3. Michael E

    Michael E Registered User

    Apr 14, 2005
    619
    Male
    Ronda Spain
    Dear Connie,

    I think that is a very brave post - and something I emphasize with a lot at the moment.

    I too ask myself if it is ever possible to take the exit route?

    Monique is not as 'advanced' as Lionel - she does not know who I am, cannot find her way around the house without detailed directions - take her to the loo door - was a first rate bitch to the poor girl who comes in to 'help her shower' and made her leave without showering... Is a bit incontinent --- Gradually getting more and more totally dependent... but she is physically not bad - moves slowly and lacks energy but does not need lifting -- or anything like that.

    I am fine at the moment - can cope with it, although this beautiful summer I have felt more of the 'prisoner' syndrome - would love to be outside and sailing and .... wracked with guilt - Monique has been brighter recently - almost better a bit --- and that means I have had even less time to myself because she is awake earlier and demanding help with 'finding' her clothes -- and I sort of wish she were not a bit better........ And I should not feel that!


    Daily, I promise her I will look after her 'forever' always see she is 'all right'... I don't cross my fingers but do recognise the form of words I have used give me some options.... But..

    The big big 'Connie' problem question is:- can I ever put her in a care home??

    Not this year or next but one day? --- because the day I do that I destroy her - totally wreck and kill her life... And will I - may I ever do that.... ? Could I live with myself if I did ever take that exit route?

    Michael
     
  4. maria29al

    maria29al Registered User

    Mar 15, 2006
    426
    Warwickshire
    Who am I?

    I am Marion (Maria)... aged 45, mother of 3 wonderful kids aged 23, 19 and 15, I work as a Chef. My father recently passed away leaving my Mum who is suffering from AD. I do as much for her as my time allows. My sister is also helping now, which is great. I miss my Dad dreadfully and wish/hope he comes for Mum soon as I dont want to see her suffer anymore....(does that sound awful?)

    As for my future...I am moving to Spain next year with my youngest to start a new life in the sun.

    As for Mums future......I wish I knew what to expect....

    M
     
  5. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya all,
    Think I must be thick or something, but I took Connie's post to mean the same as Maria did, but Michael I want to reply to yours.
    Whoa Michael, aren't you assuming there that forever you will be able to give the best care for Monique? Dad nursed mum at home till she was doubly incontinent, had times of being unable to weight bear, needed turning during the night, has no communication and I don't think knows us. It was by then affecting his health. She is now in a NH 5 minutes walk away. There are always two people available to lift her in and out of bed and wheelchairs, and sit her on the loo. She is being monitored by nurses daily and the GP is on call all the time. I think mum looks less strained than she did at times at home, because she picked up on dad's anxiety and tension, and (other than when she had a bad fall a month ago) does not end upon the floor.
    I know other people who talk about relatives going into Nursing Homes also have some positive experiences. So Michael, the day may come when the most loving and caring thing that you can do for Monique is accept that you can nolonger provide the best environment for her.
    Lots of love,
    Helen

    (And now Connie, can you clarify what this thread is all about. And you are not simply partner, mother, and grandmother - those are relationships - what do you like and dislike?)
    Love Helen
     
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I agree with Amy and her interpretation of Connie's post.
    Michael, I totally empathise, as I was in your situation over six years ago. I said the same, thought the same.

    But, like you, I wanted only what was best for my wife, and I came to learn that the care home would not - did not - destroy her - could not destroy her any more than the dementia was doing.

    It did help that the medical professionals [hah!] actually accelerated her decline past the point where I could cope, but nevertheless, the time would have come.

    With dementia, things continue to develop and go downhill, and all I can say is that we come to a time when we know there has to be change.

    We can dress that up to ourselves as being for the good of our loved one - I say it in that way because at that stage we never actually believe it even if it is true - but in reality when we all get to that stage, it is also for our own good, as we are close to the point of disintegration ourselves.

    When it is time, we know, and others will have known for quite a while before.

    We will never like it, we may never absolutely forgive ourselves for our weakness in not being able to cope, but we will know. Even then we will fight it, then again soon after, we will realise that we know what we never wanted to acknowledge.

    ...and we still won't like it!
     
  7. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    I know what Connie mean, but what Michael said is what I feel now

    Because the day I do that I destroy her
    That’s how I feel now if I put mum in a care home.


    To me I feel like that at this moment in time if I was to put my mother in a home because my mother is taking Ebixa , mum is not as advice as when Amy dad went in to a home , it’s the waiting for mum to get to that point that the medication does not work and gets to Amy dad stage that I am been finding it hard to cope with to find that Balance of looking after I and then mum, where now its looking mum and then I.

    I went out to a fate yesterday on the green with a friend did not take mum because she was to tried so I just went , I played a game on the grass , heart FM was there music playing was lovely, the sadness of mum not sharing it with me was there in the back of my mind , but all I could think was I have take time out for me and enjoy this atmosphere without feeling guilty .

    I had my palm read ,just for fun I did not say anything to the woman just showed her my palm and the first think she said to me was , your caring for someone ill and you have to take care of yourself and your going on another holiday Strange her knowing that ,I am open minded to it and then I have my doubts

    anyway I know if I put mum in a care home they will take her medication away, because the rules our if they score under 10 they take medication away in care home, my mum is not incontinent she knows me & her grandchildren & can still go to day centre , but the doctors say that mum score is under 10. so putting mum now in a care home would destroy her and rush it all to a later stage .

    Michael when your wife gets to that stage medication does not work you can not destroy her any more the AD has done.

    so for the NOW Go sailing pay for someone to stay look after Monique while you take 2 weeks out sod the expense you can’t take it with you if you’re dead so spend it.
     
  8. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Amy/Connie, when I read Connie's post it struck a nerve that has been niggling at me for a while.... I have recognised (part through TP, part through professional support) that I have been in a caring role to some degree or other for the best part of twenty years... at times with overlaps and 'competition' (for want of a better word) between those needing my physical and/or emotional and/or practical support. (Mum (cancer/dementia) , dad previously (cancer/liver disease), husband (cancer) and son - and I see my role as 'mother' always as paramount).

    But my life HAS become defined by my role and relationships to those closest to me and THEIR needs ... even the 'job' I do - not my chosen - I do it because it 'fits in' with everything else I need to do for others... (including keeping the bank manager off our backs....)

    Sorry, this is not meant to be a 'woe is me' - far from it. I have made choices to fulfil roles expected of me.... and yet..... there is a childish voice inside me sceaming 'What about me????' - and yes, wouldn't it be nice to be 'me' - not someone's partner/mother/daughter/carer... but ME!!!!!! (Whoever she is!!!)

    Thanks, Connie, more food for thought.

    Brucie, Michael - what can I say? Thanks for being so honest ...

    Love, Karen (TF)
     
  9. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    O.K. I'll play this game ....

    I'm Jennifer. I'm a mother to 2 children (daughter Alex, 20 a joy all of the time, son Corin, 17, a joy some of the time) only child and daughter to Ellen, a wife to Clay. You'll note my poor husband comes at the end of the list. I'm a sometime student, despite my age, (50) but that's on hold at the moment since I can't be in college, and be flying over to the UK every 3 months.

    I'm a control freak who tries constantly not to be, a well medicated depressive, a compulsive perfectionist (if a job's worth doing, it's worth doing yourself) and a whole number of other things. For the most part I do define myself by my relationships - I'm human, and relationships are what we do. I am mostly content with my life. There are things that I wish were different, but that's part of the human condition as well. Some of those things I could fix, but most of them are out of my control, and I try very hard to recognise that fact.

    Jennifer
     
  10. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    183
    North West England
    Hi...

    Well..... I'm Daisy and I'm 38, looking after my husband who is 46.
    I may well be one of the youngest 'WIFE/ HUSBAND' carers.


    I've been his carer since his FIRST (of what was to become MANY) strokes since December 2003.


    MID (officially diagnosed earlier this year) has taken two years of pushing many doctors for 'answers'.


    Like all of us I have good days and bad.. and even a mix of both on the hour !!


    I 'hold onto' the good moments for as long as I can....


    I promise ( AND DO ) my very best to make life for my husband as 'easy' as possible.....

    BUT....


    I do know that at 'some point' in the future I will have to think about Care Homes, and it scares me.


    I'm a lot younger than some of you (sorry !), and we have had 16 years of marriage up to now....

    BUT......

    My life has changed drastically in the last year.... and I seem to be on a downhill slope at the moment.


    Confusion... short term memory (was a few hours.... now some days only a few minutes)....
    Everything seems to have hit a 'wall'.....


    Life as I know it ended years ago.... and yes, I know I'm not the only one....
    WE ARE ALL in the same boat as carers... BUT we do tend to do a lot more giving than receiving.....



    I have had IN LAW issues from the start... and I can't help feel .....
    'If only they cared.... AND ACCEPTED DIAGNOSIS......' I would feel different about them.


    I 'KNOW THINGS' about the family (In laws) that I shouldn't.

    'Things' were said to me that should NOT have been said...
    (This is when they thought my husband was going to die at Christmas)...


    Like a lot of us carers... I do say (to myself) What about me?




    Looking forward .... to the Care Home issue....

    I hope that I can be the main carer until such times that he no longer recognises me, I feel it will be the 'right time' to 'move on to another level ' then.
    I hope that will make things a little easier for me to say 'goodbye' ..... to my old life....



    Enough of me boring you all with my 'story'.


    Take Care

    DaisyG
     
  11. linda a

    linda a Registered User

    Jun 13, 2006
    48
    suffolk
    What about me

    Im so glad i have just read your meesages,
    im just 53 and im sure my husband has been with this dementia for at least 5-6 years looking back, the moods the hurtfull things that cause rows,
    i will try better as it might be my fault, i do feel i want a life, but i can not see how, at the moment we have good and bad days,
    im not feeling very well and its not like me i get on with things i think ive pulled myself trying to get him up after a fall in the garden. im also very low 2 boils you know the ushall when your run down, i dont want to go to the doctor im fed up with talking about it ,
    i would just like a arm put round me and tell me its all ok we will do it together,
    insted its your alright, i think thats one of the things i miss the most the kindness
    now he wont leave me alone i tried to sleep this afternoon as i had had a bad night he woke me up calling me, i could screem,!!!!!!!!!!!!!
    but i wont work tomorrow and he will want his tea soon already asked when and what,
    well thankyou for my moan, i do realise there is a lot worse out there, so all the very best Linda a
     
  12. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    These are my feelings too.
    11+ years now ,caring for Peg and I intend to struggle on as long as I can.
    I do realise now that this is not my Peg but that does not take away the love and feelings that I have for her.
    We went as we do,to the Son for Sunday dinner and he said to me "I have been trying to remember what Mom was like before",but he too loves her just as much,tinged with a lot of pity.
    What at last I have realised is that nothing can ever be the same again and I have begun to make another "little life" for myself" I told of my first respite 2 weeks ago,but with a live in sitter.
    I will do it again but with a live in sitter,no nursing or care home,yet.
    I am doing things now in which Peg is not included,various meetings,going places of interest.
    Not what I really want,but !!!!!!
    This time will come but I not sure who it will destroy ,her or me?
    Norman
     
  13. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Norman, it will destroy neither of you.
    Love and hugs,
    Helen.
     
  14. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Linda,
    Sorry you are feelng so low today. Maybe later, you can steal 10 minutes to go and soak that side in a hot bath, it might help. Just get something simple for tea, it's too hot for anything else. Snatch any moment you can tonight to be kind to yourself - I know it must be difficult.
    Thinking of you.
    Love Helen.
     
  15. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Linda

    You bring back memories when I use to twilight shift full time and some times day shifts and look after mum. Mum was always wakening me even if teenagers where around to keep an eye on her, you can’t even call your day off a real day off because you’re still caring

    I take my hat of to you and any one else that works & care for a love one at home ,as at the end I had to give up work ,because the stress of doing both was just to much for me .
     
  16. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    I'm 54, have a daughter 28 and have been married to my wonderful husband for 19 years. I retired this year from my 30 year business as a stained glass artist and just took a part time job in marble and tile sales. I partly took it to help pay for my daughters wedding and largely to help me keep my sanity. I cannot think about my Mom and AD when I am at work! ( just 14 hours a week )
    This has been the worst week we have had to date. Monday of last week my Mom got lost while walking her dog. My Dad called me frantic to come help look. I had visions of her floating in the neighboorhood pond or wandering off in a field nearby. After jogging all over the place I got in my car to start combing the streets and found her in a neighboors driveway where she had fallen. She was a bloody mess, they called the ambulance and got her to the hospital. Remarkably she only broke two bones in her hand and was released. While in the ER they gave us a pamphlet on a assesment unit at the hospital called Autumn Leaf which I did not know about. Two days later I got a call from my Dad at 4:30am.....Mom walked out of the house, got lost int he neighboorhood and tried to get into some strangers house. He called the sheriff who found where my Mom lived ( thank goodness for that ID bracelet) and took her home. Dad didn't even know she had gone out the door while he slept.
    I called Autumn Leaf that morning and got her admitted. She is now there getting full time care, evaluation and therapy. Visiting her is agony but I realize that right after we leave, she forgets that we were ever there. But while we are there she crys and ask why she can't go home. Reasoning has totally left her. We will have a meeting and assessment this week. I am trying to prepare myself for what they might advise us to do.
    It is at a point that I'm not sure we can give her the care she needs nor keep her safe.
    I am trying really hard not to get depressed but rather to educate myself on what is available in our area and just stay on top of her care. I will be going to see her shortly.
    Sorry this is so long, as always, it is good to unload with my TP friends.
    Love, Debbie
     
  17. McK

    McK Registered User

    Sep 13, 2005
    62
    Pgh. Pa. USA
    Who amI who am I

    I agree with much of what Norman says in regards to his wife. Like Norman, thisis probably more like 13 plus years since my wife was diagnossed with AD, and she has been totally bedridden for 3 plus years. She is basically like an infant, and I really feel like it is much easier taking care of her now than when she was up and about. As long as my health holds up, and I am able to stay at home, then that's where my wife will be. I would never be foolish enough to say "never", but for now, it's never. I wouldn't want it any other way. - McK
     
  18. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Rummy sorry to hear what has happen to your mum (((hugs))) Sounds like you have done the right thing for her own safely .
     
  19. daughter

    daughter Registered User

    Mar 16, 2005
    824
    I am 52 with 2 daughters, 2 sons and 6 grandchildren. My youngest son is 16 and I think his Grandad's illness hit him the hardest because he saw more of Dad as his personality started to change. He has just left school after doing his GCSE's and his Head of Year teacher gave awards to all the pupils at the back of their Year Book. The headings were mostly for fun, things like "Worst Haircut" and "Sports Personalities". My son was listed under the heading "Most Caring". I know his Grandad would have been so very proud of him.

    Debbie, sorry to hear about your Mum's fall and her wandering.
    This is also the place we reached with regard to Dad. It is strange how it suddenly becomes obvious that something has to change, despite all our reservations, regrets and fears.
    I think this is a very good move. Not only does it give you and your Dad opportunities to see all the options, but it also helps to concentrate on those things you can have some control over. Thinking of you. Hugs and Love from,
     
  20. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Ok shall give this a go


    Who am I, I am the creator of my own reality after I lost the plot 4 years ago when I Lost what I thought was my future went to pot,

    They say you never no what around the corner, who ever made that up was right I could say its been the making of me mum getting AD may not of felt like that it but the build up since the last 4 years and looking back made me face so many devastating emotion that I would of never thought I could live with I have face this with no adult support no one to lean on, only the memories of my father singing a song in Spanish I , I , I , sing don’t cry because tomorrow your heart will be more joyful sounds better in Spanish , then have grown up while my mother had AD they became my rock .

    I am and will always be Margaret mother of 4 grown up children who are the most loving caring children a mother could wish for
     

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