1. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    #1 jc141265, Sep 30, 2005
    Last edited: Sep 30, 2005
    I‘ve often struggled with the whole concept of being a person who‘s father is dying.

    We all know that it is quite acceptable that if a person‘s family member is dying of cancer, say, all the understanding in the world should be afforded that family member through a very difficult time, but that is when the illness lasts only weeks or months. What about when a family member is dying for years??

    After all aren‘t we all dying each day, in some way? And then there‘s the conundrum, of here I am spending all of this time and effort grieving my father when I know logically it is entirely possible that Mum could get run over by a car tomorrow!

    But then there‘s that word, ‘logically‘ so little of this all seems to have any logic to it, how can I base my reactions on logic when what is happening makes no sense whatsover??

    Anyway i thought I'd post these thoughts to see what others think. It can be so frustrating when you seem to be suffering a grief equal to that of someone who's loved one dies suddenly (or at least a heck of a lot quicker) and noone outside the situation can really understand. Iknow the people at my work think I'm overreacting to Dad's condition, as someone said the other day to me (when I was saying to a woman who's son had a head injury in a car accident but has now recovered, that I understood how terrible it must have been for her),...<put on a real twangy nasal Australian accent for this> "Yeah but your Dad's been dying for years!" :eek:
     
  2. Jeanette nz

    Jeanette nz Registered User

    Jun 8, 2005
    17
    Dunedin New Zealand
    Hi Nat
    I know what you are saying. This disease is absolutely terrible because sufferers die from the inside out. You look at your Dad and he probably looks not too bad but inside his brain is shrinking. When someone dies from an accident or say a heart attack, it is over, they are gone and you can go about the business of grieving, but with this disease the grieving is very long and drawn out and you cannot escape it. I have spoken to many people who have lost a loved one with this disease and when the end comes they actually feel relief not only for themselves but for the loved one.

    Many many people do not understand the implications of dementia and I suspect your workmates will never understand where you are coming from unless they have the misfortune to also go through it.

    I have alzheimers and I go through my own daily grief, especially when I realise I will not get to see my two daughters develop into adults and have their own children.

    At least you know that people on this website do understand your grief totally so remember you are not alone.
    Take care Jeanette
     
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Nat, you are correct in saying for all of us, our days are numbered, we just for the most part do not know how big the number is.

    So for all of us, Norman's advice of "Day by Day" is good.

    I first learned this as Jan's condition worsened while she was still at home. That's when I bought the digital camera and recorded things to show her at the end of each day. I have lots of pictures of cakes we ate in tea rooms, enjoyed and are long since gone. I still take such pictures. We often overlook the good things of life, even if seemingly very small ones. Memory records more major things, but now, because I took the pictures - I don't even have to look at them - I remember the cakes, the spider's web in the country gate, the truck with the funny logo on the back [attached here].

    So let's enjoy every day, and make sure that your Dad, my Jan and their counterparts elsewhere all have the best numbered days possible.

    Ye gods, I sound like a weirdo. :eek: But I do mean it. :)
     

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  4. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Nat,

    My Dad died when I was 16 years old and he was only 40. He had colon cancer which was discovered in November (1969) and he died in Feb.
    It was the single most tragic thing to happen to me in my whole life and even now at 53 years old, I still grieve for him. We were such a tight family and he was adored by us. I had to live my whole adult life without his councel, participation and relationship. I can honestly say that I never got over it, just learned to live with it.
    Now my Mom is being taken away slowly by bits and pieces. It doesn't compare to what I went through with my Dad but it is equally as hard.
    If we aren't careful AD can rob us of our joy and I refuse to give my joy to it. Somedays I'm not so good at living up to that statement but I will keep on working at it, AD is taking enough !

    Debbie
     
  5. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    114
    South Coast
    Dear Nat

    I understand what you are saying, but it is not a matter of logic, it is what is happening in your heart that counts, and you are not overreacting to your father's condition.
    .
    When a neighbour's husband died suddenly with a cerebral haemorrhage I must confess to being "envious" - not the right word, as I also had the most tremendous sympathy for her, but I think you will understand what I am saying, I am not saying that it in any way diminished her grief, but at least she hadn't had ten years of grieving at the visible and ongoing loss of her husband. Five years later she has been able to grieve and is now to all intents and purposes able to get on with her life, whereas I have felt for ten years that my life had stopped in its tracks, and that my husband's AD did succeed in robbing me of my joy in life.

    I often thought (and said) that it would be better to have cancer than dementia, as people were more open and understanding about it, and support from friends, relatives and the health care services were much better.

    That has been proved true in our case, as I was diagnosed with colon cancer last year, just five months after my husband was finally admitted to a dementia unit for full time care. Until he got impossible to look after at home there was no prospect of appropriate respite care services in our area for someone with young onset dementia.

    I had surgery within a couple of weeks of diagnosis, but the cancer was found to be inoperable, and in contrast to the services available for my husband, I have had the best possible care from the NHS, the surgeon, the Chemotherapy Doctor and Nurses, Cancer Care nurses, District Nurses etc, and although my prognosis is poor, at least I won't be hanging around in limbo like my dear husband, who could still go on for years. I pray that he will go first, so that I can have my mind at rest about him, but I fear that is not to be.

    Our two sons are still in their twenties, and it looks as though I will be leaving them with the task of making sure that their Dad is getting the best possible care, not easy when they live and work over 100 miles away and have their own careers at crucial stages, although they have been very mature and supportive through all this, but I so want them to be free to live their own lives, and it is so unfair that they have been landed with all this at this stage in their lives.

    I share with Jeanette the grief of knowing that I will not see any grandchildren that my sons may have.

    Nat, my heart goes out to you. There is no logic in this illness, and it is in no way unreasonable that you are feeling the depth of grief that you are going through.

    Kind thoughts

    Ruthie
     
  6. Hope I'm not intruding here seeing that I'm not speaking of a 'first-hand'/personal experience... but just to say this:

    I've debated about this issue many a time, and would not know how I would cope to have to go through 'bereavement' twice...

    :confused:

    Firstly, the 'loss' of a loved one for many people as the person's behaviour/mood/personality change, and then the 'second death' when they eventually cease to exist.

    I can't tell you how many times I have REALLY felt for people who have apologised for the behaviour of a loved one with such as:

    "Mum's NEVER been aggressive"

    "He's not normally like this"

    "She NEVER swore before" etc. etc.

    Even now, I wish I could take these caring people to one side and say:

    "Look, no-one's judging you or doubting what you say... I understand that this is a frustrating part of the illness that is at work here... and I for one don't think ANY less of your relative and will do what I can to make his/her life worthwhile for as long as I am involved in his/her care."

    Rambling again, as I am wont to do, I would like to state this:

    "Dementia is a terminal illness" - what of it?

    Well, up until reading Christine Bryden's book, I'd never thought of it as such - seriously.

    But now, to me accepting that definition is important in the followig:

    "I don't know how much time this person has on the planet... so I'll do the BEST I can to help them maintain their dignity and individuality for as long as I can."

    At one time, I found dementia care depressing, and wanted to work elsewhere so that I could help people to 'get better', but now I realise that dementia care is my interest because I want to help people maintain a quality of life that I myself would be happy with... I have to say that I remember a lot of people I've worked with:

    The lady who was A1 with maths and knew all the tricks to removing stains from ANYTHING!
    The chap who tested planes in WW2
    The man who decided to go to college at age 69 and did well for himself, and went on to show kids how to use computers.
    The Polish chap in the resistance who fought against the Nazis.

    These are people I have shared stories with, and who I am pleased to say I spent time with, through good and bad times.

    Again, I have to say this:

    I am not writing ANY of this to seek acclaim or admiration (although people do say "I admire anyone that works in that field" I am not doing it to boost my ego) - I work in this area because I simply love to communicate with people and I find that this is the client group I most enjoy working with.

    I think I'd better stop now before this turns into a 3000 word essay!

    :D

    N.
     
  7. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Day by Day
    Norman
     
  8. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Ruthie,
    Wow, just when I think I have a full plate I am jolted back to reality. Your situation humbles me. I am so profondly sorry about your cancer. Having had a parent with it is my only experience and I can't imagine what you are coping with right now. I will keep you in my prayers.
    Debbie
     
  9. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Ruthie

    Thank you for your kind words, I'm so sorry for you and your family. How could God be this cruel??
     

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