Quality of 'life', feeding and personal beliefs

Discussion in 'ARCHIVE FORUM: Support discussions' started by pernicketywitch, Apr 1, 2007.

  1. pernicketywitch

    pernicketywitch Registered User

    May 10, 2005
    I am from Cheshire
    Dear all

    My mum had a massive stroke 18 months ago leaving her unable to speak, swallow or move her right side at all. After about 2 months, the doctors decided to insert a PEG in to her stomach. She pulled this out.

    Mum always wanted a quick end to her life, and all of us, my brothers (3) and myself knew this. When she pulled out the peg, one of my brothers was asked his permission to re-insert it, and unfortunately he gave permission. I would not have, but he was in the ward on that particular day, so they went ahead. There have been a few problems with the PEG as such; early days, she vomited a few times after its re-insertion(that we know of), but for the past 12 months while in nursing home, the peg has caused her little problems. Morally, I find it hard to cope with

    Life for Mum is non existent, she has no quality of life. She has advanced dementia and confusion, does not recognise any of us, apart from a few lucid days she appears to recognise us as a 'friendly face' (not as her children though).To see her 'living' as she is, like a caged animal (she is confined to bed 24/7) breaks my heart. Until recently, she was never taken out of bed, not showered or bathed (other than bed bath) and life for her as been a living hell. For us too - having constant battles, to even achieve a minimum level of quality of life and attempting to protect her basic human right. Things have improved a little, inasmuch as they (the staff at the nursing home) have in the last year had her out - once on Mothers' day, and once when they had a few more staff in... !

    I realise that everybody has differing opinions about end of life care, and I totally respect them. I cannot ever forget my Mum's wishes, and cannot ever forget her ethos over the issues. I feel terribly guilty that we as a family are having to be forced to turn a blind eye, to brush this under the carpet, and yet still try to live our lives. Hard, is an understatement. In my opinion keeping somebody alive, merely existing, may be right for some, but it was not my mum's belief and her wishes should be paramount! Our wishes at such a time in our life, have little bearing. Lasting power of attorney and changes to the mental capacity act, will help, but do not go far enough. We all believe we have control over our lives, but I know now we dont at all!
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Dear pernicketywitch

    I just wanted to say that, although I'm not at this stage with my mother, I have had many of the same thoughts as you. My mother, bless her, always said that she wouldn't want to live if she had no quality of life, and actually stockpiled medication to cover that eventuality. Unfortunately, of course, when you've had a massive stroke you're not in a position to do anything about it (or even remember where you've put that stockpile: I found them when I was cleaning out her house). In August 2006 she had a major seizure: she stopped breathing and was resusitated. I suppose you might think that fate was looking out for her: the seizure occurred when she was talking to a carer as the carer put her to bed: if it had happened 30 minutes later she wouldn't have made it probably as she wouldn't have been found until the morning. Sometimes I think this is a good thing (she might not have died but have been even more seriously brain damaged) and sometimes I think it's a bad thing, but which ever it is, there's nothing I can do about it now. I suppose what I'm saying is, trite as it may be, you have to roll with the punches and do the best you can do with the situation as it stands. Who was it who said "might have been" are the saddest words in the english language? I try not to do the "might have been" very often.

  3. allylee

    allylee Registered User

    Feb 28, 2005
    west mids
    Dear pernickertywitch,
    its a heartrending situation for you all, particularly when your mum made her feelings known to with regards to end of life care.
    At times the medical profession doesnt known when to stop, or is afraid to in view of todays litigous society , I strongly advocate drawing up a living will.
    My heart goes out to you and your mum.
    lOve Ally xx
  4. Helena

    Helena Registered User

    May 24, 2006
    I agree I think peg feeding is morally and ethically wrong even more so if its the patients express wish not to live in a vegetative state

    My Mother 90 with VD refused food and pills and while the staff tried to cajole her they never forced her and they respected the DNR that was put on her notes
  5. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Helena, it's great to see you still posting here and thanks - I have noticed how much you still strive to help others from your own experience .....

    HOWEVER ! :) Pernicketywitch has posted on a very difficult subject here and I think we have to respect that what is 'moral and ethical' to one person may be completely different to another ..... be that from a cultural/religious or simply personal point of view ....

    Pernicketywitch ..... I think you have it absolutely right about your mum's wishes being paramount yet how difficult to achieve that ..... ????

    Sorry not much to say that can really help other than I do try to understand .... and putting our own thoughts and feelings aside at times can be so hard ....

    Much love, Karen, x
  6. MillyP

    MillyP Registered User

    Jan 5, 2007
    Sorry, but I wouldn't put my dog through what my Dad is going through right now....to see him in such confusion is so cruel...on Friday my Dad fell asleep at the dinner table and none of us could wake him up...an ambulance was called and they managed to wake him up and took him to casualty for a check up...they kept him for tests overnight and maybe longer if necessary...all well and good you may say...he walked out of the hospital as morning broke, saying he didn't want to stay, security and the police were called to find him, luckily for him he was still in the hospital grounds but it could have been worse...so now he must have the tests as an out patient. If my Dad had not been able to have been woken up by the ambulance men it would have been a blessing in disguise for him...sorry if that's shocks some but live in our shoes for a week or even a day and then comment...I can assure you that you would say the same. My Dad looks like a broken man..a fish out of water, call it what you like...Vascular Dementia has sapped the life out of him and it's so cruel...my dog was put to sleep last year because of a brain tumour, I didn't think twice of trying to keep him alive so why do we do it to humans. This is a very cruel world we live in.
  7. Margarita

    Margarita Registered User

    Feb 17, 2006
    I don’t know really MillyP as if my dog had a brain tumour, I would think twice about putting it down, I would not put it down , but like if a human had a tumour, and I had the money to pay for the operation , brain scan check if it was cancer if it could be removed it , I would shame all animal are not covered by the human rights act

    But then it’s not an animal with are talking about it’s a human being, for me its painful to see my mother with AZ , for her I can only imagine what it is like . she never told me what she would of wanted , if she every thought she end up with AZ , but my mother attitude was always life is better then no life , I know it so have to respect it . shame my dog can not talk and tell me what he would want if something like that happen , so they must be a different between an animal and a human

    I do feel for pernicketywitch as her mother wishes was not put in writing , so her brother is over riding it, so must be a torment for her to see her mother like she is , as I know from seeing my mother sister like that after a stroke, is all to sad for us human to
    cope emotional , ride with those emotion is all the advice I can give ((( hugs))) for the ending Surely slowing does come
  8. nicetotalk

    nicetotalk Registered User

    Sep 22, 2006
    #8 nicetotalk, Apr 1, 2007
    Last edited: Apr 1, 2007
    hi pernikeywitch

    i total understand where you are comeing from when a loved on get to that end stage i think it is cruel, my mum was just exsisting the last 4 years of her life and she was not aware of anything she passsed at the age of 62 yes not old but to watch a loved one suffer like that i think it is just awful i think you have to go through something like this to understand if no one has been through this then i understand its hard for them. Its not as if were saying we do not want them here no more its just sad so sad to see a loved one end up in this way a dog would be put down no questions asked.
  9. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Actually, I didn't really get the impression that her brother was overriding her mother's wishes: simply that as "johnny on the spot" he made a spur of the moment decision that has come back to haunt everyone. I think this could happen no matter how firmly held your views are: it's one thing to sit down and have a rational discussion about these things, but it's an entirely different situation when you have to make a snap decision about these things. I can easily see myself saying "yes" to such a question, because one doesn't have the luxury of stepping back and thinking "what are the ramifications of this decision", or at least it seems like that.

  10. Margarita

    Margarita Registered User

    Feb 17, 2006
    #10 Margarita, Apr 1, 2007
    Last edited: Apr 1, 2007
    My perception read it different , as I thought they would of talk about it after it was first put in .

    So may I ask the question did they as a family all know they mother wishes and all wanted to respect it .
    Or does this question not came into the equation

    I was put on the spot told all about it from the consultant, ask me what I wanted never thinking it would happen then it did, when it did I was put on the spot .

    So you’re presuming when you say
    Nore did I thank-you very much

    you say "you can easily see yourself " so then I presum it has not happen to you yet , where with I it did .
  11. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    When my Dad's mum had dementia he would say 'if i ever get like that, shoot me'. Thow away words maybe, but now my Dad has mixed dementia, it's a whole different ball game.

    For me the crucial difference is the quality of life the person with dementia perceives they have against the quality of life we would like them to have.

    As long as my Dad is happy and the things he does do not harm him or anyone else, then personally I don't care how 'mad' he is or whatever people think of him.

    If and when he has no quality of life then we may find ourselves with the decision as to whether to continue to preserve life at any cost.

    We did face this dilemna in 1992 when my Dad had a brain haemorrhage and we were presented with 2 options. Firstly operate and face the very likely possibility that if my Dad survived the op he would be a 'cabbage' (sorry there must be a more PC word than that but this was the word used at the time), or not operate and run the risk that he would suffer another fatal haemorrhage. We chose the second option and I would make the same decision a thousand times over.

    We never told my Dad who went on to make a remarkable recovery (he went back to work as a solicitor and sailed his boat from England to Spain) about our decision, I suppose we did not want to re-live those dark times, but I know he would have agreed had he had the choice himself.

    I feel that I am very lucky to have come so close to losing my Dad 14 years ago as I have been able (most of the time) to appreciate the times we have had since then:)

    Oh dear...time to put the wine bottle back in the fridge....:D

    Sue xx
  12. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Sorry Maggie: have I upset you? I was just reflecting on the fact that when these things happen, we tend to have a knee jerk reaction which may or may not conform to our deeply held beliefs. It's hospitals, I think. Everything seems so urgent. I've not had the "life or death" decisions for my mother, but there have definitely been occasions where I've pushed for treatment, and afterwards thought "why did I do that?". Tests in particular when whatever the result, it wouldn't make a darn bit of difference to the treatment.

  13. Margarita

    Margarita Registered User

    Feb 17, 2006
    Oh its ok got a bit touchy because it was just a reminder that I never thought of what are the ramifications of this decision", , because to me now all the ramification of the decision lays with how I learn to live within myself after she died . I choose not guilt , because that can drive you mad with emotional pain , so I choose channel my pain by facing that day knowing what I did was because I love her .

    Yes I even wonder sometime now if I did the right things for mum giving her medication for AZ, thinking this journey with AZ would end sooner if she never had AZ medication, but then I am thinking of me. not thinking of my mother, I just think its given her good quality end of life, some perceive it like that some don’t.

    But I saw mum before and then after medication for AZ

    I am just glad and lucky really that this AZ medication is working for my mother and that she was given the opportunity to take it , because then I don’t have to look back and think what If ,

    With my mother sister they can not be no what If, because she had none,
  14. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
  15. joyportsmouth

    joyportsmouth Registered User

    Mar 26, 2007
    Every one has diffrent opinions on what we want if we ever get to' bad'.
    My mum has said for years 'dont put me in a home,give me an injection and just put me to sleep' How does anyone deal with that? Even though my mum is mobile,feeding herself still ect,she would hate to know she was like that and though it sounds nasty,i hope she never has a good day and knows what has happened to her or were she is,that would break my heart.
    Thankfully i havent been in a position to make an important medical decisian,but if i ever am i hope i make the right one,but then ill never know if i do.I havent got any other family apart from my children so any decisions will be completly down to me.
    Someone said to me the other day,' its worse for us than it is them' and its true,we never no if were making the right choices but we have to do what we feel is best.

  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    How many people have said what your mother said, Joy.

    'dont put me in a home,give me an injection and just put me to sleep'

    When my mother was younger, she used to say, when my grandmother got on her nerves,

    " If ever I get like grandma, tell me."

    Later on in life, I had cause to say to her,

    "You are getting more like grandma every day."

    And she replied, " Well if I`m as good as she is, when I`m her age, I`ll have no complaints."

    So however we feel when we are younger, is not set in stone.

    With love
  17. pernicketywitch

    pernicketywitch Registered User

    May 10, 2005
    I am from Cheshire
    Dear all

    Many thanks for your replies, it really helps listening to others' opinions. Quality of life was and is what should be taken in to account by all involved at such times in a persons life. Some people that have had a stroke recover to a huge extent and I realise that snap decisions should never be made while there is still hope.

    However, in mum's case, after 18 months and at 88, it is clear that there is no hope for her to gain a better and improved quality of life. The medical profession offers little options when this is the case, or should I say they do in some circumstances and not others. For instance, my step-father had cancer, and at the end of his life was in a highly reputated hospice. There was and is no doubt that he was helped by the practitioners and staff there to end his torment, as he was prescribed high quantities of morphine for pain control, which of course also hastened his death. All of his family (including Mum) thought this was the right course, as his life up to his death would have been completely intolerable as well as excrutiatingly painful.

    However, for those that are not suffering physically with such excruciating pain, there is no such 'out' from life. As mentioned in my first post, my mum is caged, in a cot-like bed (with metal sides) 24/7; she cannot speak, eat, drink or communicate. Cannot move for herself easily at all. At times she is like a stir crazy caged animal, moving her head from side to side (as if in trance). There are some occasions of lucidity and she will look at us pleadingly, as if asking for help. I know what she would be saying, and all of us in her family do.

    Other times she will be in a childlike frame of mind... stroking a soft toy and seemingly talking to it. She will weep uncontrollably and stretch out her hand, pointing to 'something' we dont know. In agitated moods, she will attempt to get out over the cot sides, and somehow pushes herself over the sides, falling on to the floor below... to be discovered later (at some time...!) when the staff patrol. She has damaged her ankle and elbow and has been covered in massive bruises from these falls. This is the only way she can attempt to get her feelings known. We, as a family have to walk away, somehow switch off and even pretend this is not happening; just simply to be able to attempt to live our lives. There are no words to sum up this cruelty, this hell she is having to endure. She is trapped in a world we can only imagine and nobody can relieve her from this endurance. Too much, too inhumane.

    To achieve a mediocre standard we have battled. The operative word, "battled". We are always at the home discussing improvement with the staff. We have told them on more than one occasion that we wish her to be got out of bed more, to be put in the communal area, have offered to buy a wheelchair, that will be suitable to take her in to the gardens in the summer etc. We have battled with them to arrange bathing weekly and are still continuing to. As well as these battles, there is a battle with the PCT over continuing care, a battle with her GP, I could go on and on and on... as many of you will relate to, I am sure... She has needed an eye operation since the stroke (she has ingrowing lashes, which cause her eye to become crimson and inflamed, closed almost, so she cannot see)... the GP simply says " oh no, she would not 'stand' the anaesthetic! Can you belive it...?

    There should be help out there, peoples' wishes should be listened to. A living will helps, an enduring power of attorney will help too, but there has to be something more. Litigation... what can be said of a society that will turn a blind eye to such suffering of our human race at the end? Many have commented "you would not treat an animal in such a way", my thoughts entirely. Yes, we are, you would think, the superior race, equipped with an intellect; we make choices and decisions day-to-day, equip our politicians to do so too; many of which, in turn effect all of lives. But as concluded at my first posting, at the end of our lives, we have no choice, as ultimately it is left to those that could change existing legislation enmass, the politicians, the courts, not us as individuals.
  18. MillyP

    MillyP Registered User

    Jan 5, 2007

    My dog was walking backwards Margarita and couldn't control his movements...MRI scans were done and I could have gone on and had him pulled about like they are doing to my Dad right now but I spared him the hurt and humilliation that my Dad is now suffering. No operation could have saved him, there was no hope for my Dog....money wasn't an issue here.... like there is no hope for my Dad but this wicked, cruel world insists we keep trying, even if it's wrong to do so....
  19. Margarita

    Margarita Registered User

    Feb 17, 2006
    #19 Margarita, Apr 2, 2007
    Last edited: Apr 3, 2007
    Now I can undertand that
    but really my point is

    I am sorry to say this and I know people will disagree , but in my mind you can not compare a human being to a dog, a dog is an animal, and does not share the same physiology , emotional feeling as a human , I would not compare my mother life to a dog , even thought I am an animal lover.

    Firstly, let's look at the exchange of love between ourselves and our dogs. Most of us love our dogs and can feel a warm spot in the middle of our chests when we see them or think of them. Does the dog feel that too? We have to assume not. He loves us, but he loves us in a different way. He relies on us for his well-being and survival. He looks to us (if we are successful) as a leader of his pack and he trusts us in our decisions.

    He is happy to be with you because he is a pack animal and his attachment to you may well be very deep. But he doesn't have the complicated love-psychology of a human being.He doesn't have the same concept of ethics and morality and he certainly doesn't know anything above and beyond what his animal instincts tell him. If a friend of yours enters the house and your dog doesn't like him, he's not going to "be nice" to the friend for your sake! Conversely, he doesn't misbehave or sulk to get attention or "pay you back" for something you did. These are human emotions and motives that we attribute to our dogs almost unconsciously.

    And please don’t get me wrong I am not talking about someone that is at the stage that PW mother is , that is a family diction(sp) . as I do not know what stage you are talking about in AZ when you say

    but still I would not conpare it with a dog life .

    PS I find is so disrespectful to the whole concept of the meaning of life to compare a human being to an animal, its just unbelievable to me . sorry just have to say what I feel .
  20. Margarita

    Margarita Registered User

    Feb 17, 2006
    #20 Margarita, Apr 3, 2007
    Last edited: Apr 3, 2007
    Deborah Blythe

    No guilt did not enter my mind, when we was given the change for her to take medication for AZ .

    To tell you the truth it was only after joining TP and reading other people ending of life with AZ that made me think of would it been best that I had not given my mother the medication for AZ , gosh I must have been depress , no wonder they say live in the now , because my mother ending of life my be different to other one TP , so I would choice , not to peg feed her , I would over ride the doctor , but then that’s in the future and it has not happen so really I can not truly say what I would do in that situation.

    But I am sorry I would not feel guilty, guilt is from a feeling of depression. . People say to me that I am looking after my mother at home so after she dies I would not feel guilty, No they are wrong.

    I look after my mother because I want to and choose to No burden for me , but a labor of love , if I felt it was all getting to much for me I would put my mother in a care home and would not feel guilty and would not mean I love my mother less .

    Example of how I think I always wanted to go to Gibraltar and live out there, I did but it did not work out , so now I can look back and say I gave it a go at lest I tryed , So I don’t have any what If‘s. same go with my mother medication with AZ. so guilt does not come in to it

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