Sorry I haven't been around....

Discussion in 'ARCHIVE FORUM: Support discussions' started by Ruthie, Feb 7, 2005.

  1. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    114
    South Coast
    I have been absent from this forum for many months, and wanted to let my friends here, who have given me so much support in the past, know what has been happening.

    My husband finally went into an NHS dementia ward at Christmas 2003, because I could no longer cope with him after looking after him for many years. He is still there, and although his condition has deteriorated significantly, he is well cared for and treated with kindness and respect. I pray that he will be able to stay there to the end, rather than go to a care home where I wouldn't put a dog to be looked after.

    After feeling exhausted both physically and mentally, also "in mourning" for him, after a while I started to feel that I should try to get on with life as far as possible without him, as I have two sons and wonderful friends, and I am 60 years old, so felt I should make an effort to take up the threads of life for my sons' sake. I was offered a very nice job, 2 days a week, which I started last April, and which was good for me as it put me in touch with many old friends from the job I had before I gave up to care for my husband. It also gave me something else to focus on, although I continued to visit my husband 3 or 4 times a week.

    In mid May I started to feel unwell, and although I went to stay with friends in France for a week at the end of May, I had symptoms including a great deal of pain, and went to my GP within days of my return. To cut a long story short, I was referred to a consultant, had various tests, including a CT scan, and was diagnosed in mid-July with Colon Cancer.

    I was scheduled for surgery in early September, but was admitted as an emergency in early August with obstruction and a high temperature, was on antibiotic drips for a week and had surgery in mid-August. The surgeon told me a few days before surgery that the CT had shown liver secondaries, but that it looked as though he could still remove the primary tumour, thus avoiding an ileostomy. Unfortunately when I came round I found I had an ileostomy, and was told that the tumour was unresectable (inoperable).

    I was told when I asked that with chemotherapy I should have about a year of "useful" life. I had chemo with a permanent infusion (PICC) line in for three months from September to November, which wasn't too bad, just felt very tired towards the end of it, and went off my food (but kept all my hair!). I was told that it had been effective, and had reduced the primary and larger secondaries by half, with the smaller liver secondaries disappearing.

    I have recovered well from the chemo, had a good Christmas with my sons and friends, have had a busy social life, visited friends, been to London and visited the Tate Modern. I am trying to do some of the things that my husband and I would have been doing in the last ten years if he hadn't had Alzheimers - in less than two weeks I am going to Venice and Florence for a fortnight with a friend, and am planning another journey, possibly to the USA which I have never visited, shortly after that to see friends and relatives there (if I can get medical insurance, which is proving almost impossible).

    I feel pretty good, in fact at the moment I feel better than I did this time last year!
    I see the oncologist for a check up tomorrow, and the surgeon in about a week's time, just before I set off for Italy.

    I was interested when my GP, who was quite shocked at how far the disease had progressed, as I hadn't hidden any symptoms from him, said that he believed it taken a hold because I had been under so much stress for so long with my husband that my immune system had got very low and couldn't fight the disease. This is exactly what I had felt. He said that I had stayed so strong and looked after my husband longer than most people would have managed, but that I was perhaps too good at hiding how I felt.

    So what is the moral in all this - people tell me that it just isn't fair - but when was life ever fair? I have just read a few posts about reaching the point when you feel you can't cope any more - perhaps carers should not push themselves to that point, but that doesn't take into account the uncomfortable fact that we want to care for those we truly love for as long as humanly possible. But perhaps it is a message to some of you out there that you must value your own lives, and be honest with yourself when you reach the point of no return. I have found that my love for my husband, which was sorely tried at times when he was at home, is still strong, and although he barely recognises me now, he is pleased when I visit, and I know that he is still "in there" somewhere.

    I had expected that I would fight for him until the end, but it now looks as though I may go first, so have talked in depth to my sons about what I would want for him, and how to fight his corner, and who to turn to for advice and support. I have also written a comprehensive list of contacts (including the Alzheimers Society), instructions and fact sheets. All the professionals who care for my husband are also aware of how I feel, and I now feel that I have done all I can for his future care. I wish he would die before me so that I can die knowing I have done everything, and if that sounds awful, I just want to know that he is at peace.

    I'm sorry this is not a very cheerful posting, but wanted you to know what has happened, and that I hadn't just lost interest - I occasionally look in, but haven't had the energy to be very involved lately. I intend to get as much as possible out of the time I have, so hope to be pretty busy in the near future!

    With love to you all

    Ruthie
     
  2. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Ruthie
    what a lousy deal life has given you.
    As if AD wasn't enough and now your own troubles.
    What Can I say,nothing really,only bumble on talking rubish,but I won't.
    I hope that you can try and enjoy every minute of your life,I will be thinking of you
    All the very very best wishes
    Norman :confused:
     
  3. Kriss

    Kriss Registered User

    May 20, 2004
    513
    Shropshire
    Hi Ruthie

    no one can know what is around the corner, we can only pray to whoever or whatever we believe in to give us the strength to cope with what life deals. The uncertainty will remain just that and I hope and pray for you that you get to live every moment to the full. Maybe the phrase is over used but "Lifes too Short" has become my daily prayer over the last few years. "I could be runover by a bus tomorrow" is the start of the second verse!

    Hold tight to your love it will get you through and give strength to those around you.

    Love
    Kriss
     
  4. bjthink

    bjthink Guest

    Ruthie, your story has touched me more deeply than you will know. I want to say to you - live your life to the full now. Indulge yourself in the spectacular joy of each sunrise, see in every crocus the brilliance of colour and hope after hibernation, please come into your own and breathe new air. You have the rest of your life to live, and can live it to your heart's content, if you give yourself what you need.
    You'll love Florence. Go to see Michaelangelo's David and as well as noting how big the hands are (!), check out the guy from every angle. It came as a mind-blowing revelation to me. From the angle the statue is generally photographed, he looks calm, in control, focussed. But if you walk round him, you see the genius that is Michaelangelo. David is actually twisted, nervy, anxious, overburdened, balanced on the ball of a foot - knowing that he's taking on a task that's probably too big for him. He seems like a scared child in an adult world. It's one of the most complex and beautiful pieces of art that I have ever seen, because it says all there is to be said about the human condition. Michaelangelo was one of the world's first humanists.
    Sometimes we take on too much. Sometimes we really know this, but we pretend to ourselves that it's OK and that we can manage, and you can see this doubt and uncertainty and foolish hope in the David sculpture. You will relate to this, as I did.
    And sometimes, out of the doubt and uncertaintly come miracles. In the David statue is the frowning moment just before a miracle.
    Treasure that moment, and believe in it, because we wouldn't be human if we didn't know our limitations, and if we didn't have the spirit and the hope to rise above them.
    My hope in the randomness and the eternal magical grace of miracles is undiminished. May it work for you. Just look at that David!
    All love.
    B
    x
     
  5. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    Dear Ruthie

    What a wonderful posting, your love shines through what one would expect to be a harrowing story. But there is not a trace of self pity, your main concern is still for your husband, you are obviously one of lifes truly good people.

    Try to enjoy your life with your sons and friends, as with your positive attitude I am sure you will.

    You make my problems seem insignificant by comparison.

    All my best wishes to you for the future.

    Barraf
     
  6. Jude

    Jude Registered User

    #6 Jude, Feb 8, 2005
    Last edited: Feb 8, 2005
    Dear Ruthie,

    I was very saddened to read your post but also incredibly impressed with your calm and bravery in the face of such awful crises.

    Your comments about caring to the limit of your endurance are very pertinent indeed. The stress of caring 24/7 and the guilt of feeling that you can't do it any longer take an awful toll on the pysche and the body to the point where is seems like being unendingly tortured on a daily basis.

    Thank you for posting such an important message for all carers.

    Ruthie, please cram as much as you can into the months ahead. Go for Gold..!

    Much love and all best wishes.

    Jude
     
  7. thompsonsom

    thompsonsom Registered User

    Jul 4, 2004
    97
    halifax
    Dear Ruthie

    I too was saddened to read your post but thank you for highlighting the fact that being a carer does take over your life to the point of neglecting oneself.
    I am pleased you are being positive and doing the things you have wanted to do. Being positive is good when faced with an illness such as cancer, we only have to look at Jane Tomlinson to see what being determined and positive does for us, she is an inspirational to us all.

    Enjoy your trips and do as bjthink says and visit Michaelangelo's David sounds facinating the way he describes it.

    best wishes

    janice
     
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello Ruthie

    well this is my sixth message in reply to your moving one - I deleted the others without sending them because the words seemed wrong, somehow. Not that these are right!

    First of all, thanks for posting. Your message is inspiring and you are clearly an amazing woman, both in your devotion to your husband and family, and in your positive tack on such a devastating situation.

    I'll say but two things.

    First, many people never experience the sort of love you and your husband have had, before and after and during his illness. We often take love for granted. Others use the word 'love' very loosely, when what they mean is actually something quite different and a much lesser thing. The greatest of all things is Love, whether or not one has Faith with a capital 'F'.

    Secondly, yes, make that trip to Florence [I always like the native 'Firenze' name as 'Firenze' never appeared in "Magic Roundabout" ;) ] By all means admire David, and pop into the Uffizi [just behind him] too. But take lots of pictures and make sure you are in them. Your sons will appreciate seeing you enjoying yourself, and just framing a scene before taking the picture means that you see everything from a different perspective.

    In Venice, take more pictures, but watch out for the water buses! The only place in the world I have felt seasick is on the Grand Canal, when attempting to take a picture up it from a water bus.

    Best wishes
     
  9. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Dear ruthie,enjoy every moment of your time,i have recently lost my brother to cancer but he looked on it that he knew he was going to die soon so he no longer kept putting things off he really went for it and lived what time he had left to the full,and some how when he did die it seemed easier to cope. storm
     
  10. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    786
    Buckinghamshire
    Dear Ruthie,
    You are amazing! Thank you so much for your frank and down to earth message. You deserve the most wonderful trip to Italy, and many new adventures - enjoy every minute in the knowledge that you have done everything you could, and much more than could ever have been expected of you.
    Best wishes! Carmen
     
  11. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Ruthie, what can I say - except what I have said before. GO FOR IT . You were an individual first, before motherhood and caring etc. came along.

    I wish you all the best you can expect from life, it never came with a guarantee, I feel sure that 2005 will bring you great joy in one form or another. My love and best wishes, Connie
     
  12. susie

    susie Registered User

    Nov 30, 2003
    82
    shropshire
    Dear Ruthie
    What a raw deal you are having but I can only sit here at work and admire your attitude. I can only hope that I as things deteriorate for me that I can follow your example in some small way. There is a valuable lesson to be leant ,not to cover up how we are not coping as we all feel we ought to be able to cope. Enjoy all your trips and make the most of all your time. That's something we all need to do.
    love
    Susie
     
  13. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,590
    Female
    Dundee
    Oh Ruthie, my heart goes out to you. Like the others I can only add my own best wishes and love for the future. Go for with Italia - my favourite country of all time. I'm lucky enough to have visited Firenze with my husband not too long ago and we;re going to Venezia in April. You have made me realise how lucky I am to still be able to go places with him (even though he can't remember the details when we come back). I have a friend who is currently suffering from cancer and can empathise with you but can never fully understand what you must be going through.

    Thinking of you. Enjoy Italy.
    Love
    Iz
     
  14. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    114
    South Coast
    Thank you ...

    Thank you for all your very caring messages, they mean a great deal to me.

    I am looking forward now to setting off to Venezia and Firenze next Saturday, and will certainly take your advice, B, of looking at David from the rear! Apart from the obvious delights (!), I will be thinking of what you said, and taking inspiration from it.

    I took my husband to Florence almost exactly five years ago, while he was still able to appreciate the art and architecture (he was an architect, and knew everything about the buildings - Brunelleschi, who designed the dome of the Cathedral, was his hero). My husband went up in to the dome, and I nearly lost him when he came down, as I had taken the opportunity to dash into the Cathedral Museum (not good at heights) and he got down before I got back and wandered off! Found him sitting happily on the steps of the Cathedral, eating an apple and surrounded by Japanese students. Fortunately I had taken the precaution of making sure he had a bright red fleece on, so he was easy to spot - but it gave me a bit of a fright! We were only there for five days, and spent one day going to Siena, so didn't see everything I wanted to.

    I saw the copy of the David in the Piazza della Signoria, but this time I will go to see the original. Some of the frescos and sculptures I saw last time were so powerful I was in tears - fortunately the friend I am going with is an artist herself, and will understand. But I also intend to enjoy the food and wine and the atmosphere, not just the art!

    With love

    Ruthie
     
  15. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Ruthie, do you know how wonderful you are?

    You're an inspiration.
     
  16. Jude

    Jude Registered User

    Magic,

    I'll second that!

    Jude
     
  17. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Ruthie, you are truly amazing, your compassion and love just shine through all the time. I am so very sorry life has taken this turn for you, it just doesn't stop does it? Do enjoy your break, you deserve it girl. My thoughts are with you, sending you a great big hug, lots of love, She. XX
     

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