When life goes on too long 196

The Tough Stuff


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Nana is 98 years old. She’s a widower, a mother to four (but has lost two of them), a grandmother to 11, great grandmother to 19 and a great-great grandmother to four…at last count. She is the matriarch of a big and beautiful family all of whom cherish an abundance of fond memories. But her life is over.

She lies almost motionless on the bed at her aged care centre. It is a beautiful centre in lush tropic surrounds, but may as well be a cold, clinical, sterile room, as she doesn’t really know where she is. Her body, which gave up on her a while ago, and the mind a little more recently, have shut down and are lying in a state of waiting…waiting for the end to come.

As a grandson it’s a confronting scene. It’s not how I want to remember her, yet you still feel compelled to visit. Some of my earliest and most cherished memories are of time spent with her in the garden, tending to (or possibly running through) her almost surreal assortment of flowers, or baking with her (let’s be honest – devouring the fruits of her baking) in the kitchen. Her glamorous white short set curls were a permanent fixture upon her head. And her smile…well, it was as infectious as her laugh was contagious.

But now as I visit her, again disappointed that I’ve arrived while she was sleeping, I look lovingly, but also despairingly, upon a woman who is almost unrecognisable to the Nana I grew up with. It’s hard, really hard, to see someone who was so full of life and colour brought to a slow, almost lifeless end.

Even if she had been awake, she most likely would not have recognised who I was. She would have called me by any one of the grandson’s names, possibly even one of her sons, as she seems to do more so today. I would not have corrected her, instead continued to talk about the grandkids, which she seems to have less trouble remembering. Talk of them bring traces of that famous smile and provide a little more colour to her face.

Otherwise, she is ready. So too is the rest of the family. Her life is complete but something keeps her here on God’s green earth. You feel tremendous guilt for inviting the end, but you find relief in knowing that she’s searching for it too.

One of my daughters asks, ‘will she make it to 100 Dad, so she gets a letter from the Queen?’ I tell her that we hope she doesn’t, and try to explain why we said that, sensing her confusion…shock even.

To me, it’s no more or less the same than losing someone prematurely or unexpectedly. It’s unfair. They’re hanging on, willingly or not, for a life that has come to its natural conclusion. We’ve enjoyed her company, we’ve got more memories than our minds can actively recall. She has no quality of life left and won’t benefit from another day.

We pray for her relief and release from this world and wish her well for the next life. Until then we try to replace the picture of the woman before us, with images of a happy healthy woman from days that have long since passed.

Share with us your thoughts and feelings. How have you dealt with a loved one who clings to life but there’s no quality of it?

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  1. Life is not over until The Good Lord takes us home!!

    I find it so sad when family view their elderly this way!
    Every minute our elderly draw breath should be considered a blessing.
    We all have it to come and to be involved in someones life at this point is a privilege indeed!
    I work with it every day and consider life as precious whatever the circumstance!
    When gone its for a long long time!!

    24 REPLY
    • Yes the situation is heartbreaking and I truly believe when someone has reached this stage of their life they should be euthanised with dignity and respect with their family holding their hand, delivering them to their God. I don’t believe God would mind this at all.

    • That said – He is in charge and its His timing – not ours – hence it a privilege to be involved with someone at this stage in their lives and to make it as positive for them as possible!
      My opinion and wish is that none euthanise me no matter what the circumstance!

      1 REPLY
      • It’s your wish not to be euthenased Nell and that wish should absolutely be respected. However, don’t choose it for me! If I am in a hopeless situation, with no dignity left, perhaps in pain, certainly no life just a miserable existence as a vegetable, I want to be euthenased and it should be my right to choose that for myself.

        2 REPLY
        • I do agree Margaret. I have had a few strokes and my biggest fear is to end up as a “vegetable” I hope my children or whoever is around will bestow on me the dignity I would wish for. Euthanasia is for the ones who want it and agree with it. I for one would want it.

          1 REPLY
          • Have you looked at making a `Living Will` – where your wishes to not be revived and kept alive on machines etc is respected and the end is palliative care – no forced feeding or med`s to keep you alive – just pain relief to keep you comfortable as possible. Regards.

        • totally agree with euthanasia as a choice.
          Maybe we don’t all have these religious views that seem to prevail
          here. I don’t. I respect the rights of those wanting to go on to the end, but how about you respect my right to choose my own time.

    • You have to watch a family member go through this to understand. When the quality of life has gone and they no longer recognise their loved ones it is truly heartbreaking. I have been there.

    • The major concern should be how this poor lady is feeling. Is she happy or sad? I don’t like the thought of keeping someone alive when they are clearly suffering or miserable.

    • I have to wonder have you actually sat with someone whose body is so frail they can do nothing for themselves any more, they have to rely on someone to feed, them, wash them, wipe their arse, try to help them through the confusion of Alzheimers.
      My mother can still do things for herself but as she suffers from Alzheimers she is getting worse and more and more frail.
      Living this way is NOT living it is existing and I find it so distressing as the person you knew is no longer there.
      Just because your body breathes does not mean you are living. Also the ones who do not believe in a god or a bible (they have that right as you do for your beliefs) is just a daily/hourly nightmare until your body stops. I believe you should be able to leave with dignity as there certainly is no dignity once you get to a living vegetable state to be honest,

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      • Totally agree Kay. I hope they bring voluntary euthenasia in by the time I need it.

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        • Yes please euthanasia for me I hope that this becomes a reality in my lifetime as I cannot understand why we are forced to suffer and linger in nursing homes. Its my wish to die with a bit of dignity. I am sick of the god angle we should be able to decide for

    • Yes its heartbreaking to watch but she will go when its her time enjoy every precious minute your heartbreak will be worst when she has gone .. This i know i have just retired from 18 yrs of aged care

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      • I think you’re wrong Pamela. I’ve been there with more than one much loved ones. There is grief, but it is the healing grief of saying goodbye, not the lingering, soul destroying grief of watching a loved one linger with no quality of life long after they are ready to go.

    • It is sad , and what keeps people alive beyond their time, is the medication they are receiving for heart , blood pressure etc which lets them linger with other disease far longer than theiir time should to suffer

    • Over 40 years of my nursing career, in various fields, the most that has impacted on me were the grieving family members, who would reminisce over the active & productive lives of their loved ones, just waiting for the last laboured breath to cease. Most have said that “he/she wouldn’t want their families to see them like this”! With a “cocktail” of prescription drugs along with medical devises keeping them alive & euthanasia such a contentious issue, our beloved are reduced to an “empty vessel” just existing! Personally, I’ve prepared an Advance Health Directive, wherein no medical intervention is to be undertaken in any circumstances, thus freeing my family of such burden, and, letting them know of my wish. So, do enjoy your family with every single day of your life, before frailty or Alzheimers takes its toll! At age 74, everyday is a blessing, for we know not what’s around the corner! Please, Nell, don’t be selfish, just to salve your own feelings & religious beliefs.

    • Spot on Nell Smith . I was a carer in age care till i retired life is life once they are gone they are gone . Dementia sufferers are happy in their own little world . They enjoy doing what they can do .I loved careing for them bring you so much happiness . It is hard on their loved ones i know my mum had dementia i lost her last year . Those last few years with her was the most precious time and our memories live on . I am a volunteer in age care so rewarding .

      1 REPLY
      • If dementia sufferers are happy in their own little world and not in pain that’s fine, but not all are. There are many other diseases that strip away all dignity, and despite what doctors call “adequate” pain relief leave the sufferer in considerable pain until they die. You could ask my father, except he is now released from it. Dad still had all his mental facilities, was in pain, unable to do anything for himself, not even lift his hand high enough to feed himself because of the pain and was in the terminal stages of cancer, no hope for a miracle cure or even improvement. He had no quality of life but no options open to him. He told me he was just waiting to die and was in considerable pain. It was heartbreaking to watch and I still remember it clearly, more than 30 years later. We didn’t make our beloved dog suffer like that! The doctor said his pain control was adequate and wouldn’t give him stronger pain relief until the last couple of days of his life. I am grateful that at least I have good memories of the last couple of pain free days, with Dad reminiscing and laughing. Those memories are tainted though by the pain and fear he went through before that last blessed stage.

    • I don’t want to hang around after I outlive my usefulness or my appreciation of life and understand what is going on.

    • If I ever get to that stage, I want the family to stop all medication and say goodbye & let me go. My wish would be for my children to enjoy the rest of their lives, be sad & mourn but not too long & never forget me, BUT get on with living & be happy.

    • I believe in being allowed to CHOOSE euthanasia as a patient and with the blessing of family. Can’t believe this day an age euthanasia is not legalised. What patient wants their loved ones to watch them suffer, struggling for breath,and the loved ones have to live with never forgetting the heartbreak of their loved one struggling . It truly is heartbreaking . Animals are treated with more respect and go peacefully!! Individuals should have a choice. It’s OUR life. DYING WITH DIGNITY

      1 REPLY
      • Totally agree Coral. Just hope it is legal before I need it. I wouldn’t want to ask my children to risk their freedom for my release from suffering. When my mother had cancer she asked me to promise I’d help her go by giving her an overdose if she asked as she was so scared of what could have been, having helped nurse her father and mother-in-law through the last stages of cancer. I would have if she had asked but feared the legal repercussions as I had children to look after. Thankfully it wasn’t needed. Due to a mishap in hospital with a minor surgical procedure she didn’t linger as long as she had feared and wasn’t in pain. I’ve always wondered if I would have been strong enough to help her by giving her her tablets if she asked. I would hope so, but was scared of the consequences for me and my children. Neither the patient nor their loved ones should be put through that and it is totally preventable.

    • CRAP! If your loved one is lying there in pain & the chance of coming good & there in aged care & if you were a dog they would put you down. Best way to put it is reverse it, your the one lying there?

    • There is often NO chance of coming good and next of kin are asked to sign a form the patient is not to be resuscitated. In my husbands case like many, cancer took over his body but he still had his heart and brain strong. Wouldn’t it be more humane to give the terminal patient a needle and let them go peacefully than keep pumping them with morphine which is a slow, degrading death for god sake. My husband asked the Doc to give him something to go 3 days before he died. That’s how much pain he was in. One can only take so much

    • Kay Eller. not only have I seen it for 18 years I sat almost around the lock with a loved one for ten days straight waiting for her to pass no amount of her saying she wanted to die changed the fact it was going to happen when it was her time & not a minute before Alzheimer’s is cruel and heartbreaking for everyone involved I agree people should have a choice and hopefully one day we will see it .. God Bless you & your mum Hun

    • Pam I am 71 and my husband left me nearly 5 yrs ago after nearly 45 yrs married and most of me went with him. As cruel as it may sound I wish he was still in his bed to talk to me but that is just being selfish. He was in so much pain without complaining. He was sick for 4 yrs tho Doctors took 2 and half yrs to diagnose him with lung cancer having excruciating pain in the shoulder. They palmed him off and he never went to Doctors unless he really had to. He couldn’t lie down or sleep because of the pain. He went to different people for help. One Doctor told him to put his arm in a sling and go for a walk!!!! Sad for such a good nice guy that he had to suffer so much.

  2. My mum has been in aged care for 5 yrs now and watching her slow decline and hatred of her body’s betrayal is awful. Every visit will not be complete without one of two statements from her. Either”let me die” or “get me out of here”. It’s mental torture for a once active, vibrant woman. She calls the place A Holding Pen For Death.

    6 REPLY
    • I know how you feel, watching my mothers descent into madness and being so frail, for her I wish it was over as the mother I knew is no longer there. Whenever she is lucid she hates her current situation, she is in a mental hospital as she has many episodes of psychosis and paranoia and had attacked another patient. She hates where she lives and I know if she could she would rather leave this life with dignity as she doesn’t have any at the moment. I hate watching this decline of the woman I knew as my mother. She may have had her faults as we all do but I still love her.

    • My mother was in a home with Alzheimer’s for maybe 5 years. She was always content, but it wasn’t her.
      She couldn’t speak at the end, incontinent. What a waste.
      Aluminium is considered a possible culprit and most vaccines contain aluminium.
      The flu vaccine still contains Mercury, long recognized as a neurotoxin.
      Is there a link?
      I’m taking no chances.

  3. 2010 September……Southland hospital…family meeting with Dr. …One sister had POA…mother had been unwell but was recovering…..eating well…and starting to sleep well again…had full control of herself…..Her memory was good…but because of that one sister out of 9 children Mum died by being starved to death along with morphine injected through her neck…..the law says this is acceptable…..I hate my sister for what she did and anyone that supports this kind of legal euthanasia….no different to murder in my eyes

    12 REPLY
    • I understand where you’re coming from. I went to court VCAT to ensure that each sibling had equal say in mum’s care. Some were not happy but I was her carer when she lived with us and I promised her there would be not agruments only peace during her time in aged care. The magistrate stated how proud our mother must be that we all cared and loved her. When the end came, those who lived in Victoria spent time with her. She always wanted to die in her own bed and that happened too. Those from interstate flew in later in the day and the beautiful aged care gave us time to go through mum’s little treasures. This was so important for our younger sister. It was what mum would have wanted as well. She gave so much in her lifetime and deserved all our love and respect when she passed over to be with dad. It has meant that our family is stillas close with no ill feelings.

    • This is a shame as your mum knew what was going on and had a life. The sister must have had her reasons. Was she the sole carer or had your mum spoken to her about her wishes. Can’t do much if she had POA.

    • I feel for you. Euthanasia is so easily abused. Not all elderly are suffering and can lead a happy, satisfying life.

    • Obviously someone in their right mind who’s enjoying life should have every opportunity to do so.

    • Mum was taken care of by her family….she lived in her own home and had a lady come help her with showering…..the one I speak of lived closest….but most lived within a few minutes….Mum was taken advantage of while the other sister was visiting her family in Australia and she took Mum to a lawyer….just before she died she asked to go see the lawyer again…..she died a day before the appointment and the sister knew this….Some of us went to see a lawyer to stop this and were told how much it would cost….There was no way we could of come up with the thousands it was going to cost….no one would act for us without a very large deposit….If we were bad people or criminals then I might understand why we were refused this help but we are not….so now I feel we do not live in a society that is kind ….we have lost t he ability to tell the difference between right and wrong and I have a fear of hospitals….I am well into my sixties and really do not trust the medical profession at all…Mum was 82….now I have contact with one sister and I believe the others are all scattered….A very fractured family now all because of one…..

    • May I suggest that if one is still of sound mind, to make an “enduring power of attorney” & listing all your siblings and getting their signatures, so not one will have the burden of “decision-making”. In regards to end of life, an “advance health directive” will cover your wish of “not being kept alive by artificial means”; second best to “voluntary euthanasia”! Both hubby & I’ve done this @ the Public Trustee, easy to map out your last wishes, and facing the “inevitable” squarely. Have always said that “I’ll take my chances with GOD, when & if I do get to meet him”!m

    • Ruth that just doesn’t sound right at all. 9 children and 1 makes that awful decision AND with your mother sounding ok in health!! Why was she given morphine if she was well and it seems, not in pain AND why starved ?? Sounds very cruel and VERY WRONG IF it’s right in what u say in that she was getting better and coping !!

    • Please don’t doubt me Coral Delmege McGuiness….it is the procedure…nil by mouth till dead…morphine to keep her quite….Oh we were allowed to wipe her mouth out with a very long cotton bud wet from something they left there….meeting was at lunch time and before we could get back to her room they were already inserting the morphine….This was done on the Monday and Mum died the following Sunday at Midday….I was so upset I got into our car and came home almost 200 miles away….

      1 REPLY
      • Something doesn’t sound right here. Morphine injected into the neck? As a registered nurse of 30 years I can only assume this device was a CVC. A central venous catheter; a long, thin, flexible tube used to give medicines eg. chemo, fluids, nutrients, or blood products over a long period of time, usually several weeks or more. The catheter is threaded through this vein until it reaches a large vein near the heart. A catheter can be inserted into the neck ONLY if it is to be used during a hospital stay, most frequently in the Intensive Care Unit. Clearly your mother was extremely ill and had previously been receiving treatment for a life-threatening condition.
        My guess is that your mother was receiving palliative care because she had an illness/disease process that was not amenable to cure and would lead to her demise in the days/week/s ahead. For a doctor to even suggest this, there would have been an enormous amount of consultation between specialists, and a conclusion drawn that continuing active treatment would be futile, inhumane and the cause of prolonged suffering. If the patient is of sound mind, they can make an informed decision whether to pursue life-extending treatment or not. If they are not cognitively intact, then the Medical Power of Attorney can act in accordance with what they know/believe to have been the sick person’s wishes. If there is an advanced directive made by the patient all the better. Their wishes are respected to the letter. The use of morphine by those in the medical/nursing professions is not intended to kill, but to relieve suffering and promote a comfortable death. Various other drugs are frequently used at the same time to combat other unwanted, distressing symptoms too, eg. restlessness, nausea, dyspnoea. Palliative patients are not given food and fluids as they enter the terminal stage because their swallowing reflex is compromised by the reduced level of consciousness and they will CHOKE or aspirate it into their lungs. They are not starved or deprived of fluids to facilitate an early death, quite the opposite. The are given drugs that will allow them to slip away comfortably, peacefully and with dignity. One thing you are absolutely correct in saying is that this process is legal, and it is commonly known among those delivering end of life care as “The Doctrine of Double Effect.” It is sanctioned by both the Catholic Church and the World Health Organisation. Basically, one cannot intend to kill another, that would be murder, thus a criminal act and punishable by Law. However, it is ethically and legally acceptable for healthcare professionals to relieve suffering even if the means, say morphine for example, by which suffering is relieved may shorten the patient’s life. It’s much to complex to explain here. There are incalculable academic papers written on the subject, both for and against. It’s a touchy topic, especially for grieving families who are focused on their sad loss. I hasten to add too, that there are many, various forms of suffering…..not just physical.
        Yes, I’m a specialist palliative care nurse and a good one. I have NEVER, EVER intended to kill anyone, but let me say quite clearly and unashamedly that I have, in collaboration with pall care doctors, enabled thousands to die a good death free of all manner of pain and suffering. And that is how it should be! We do not need euthanasia with good palliative care. Indeed, legalizing it would pave the way for abuse and create more problems for society than the average Joe ever imagined. However, that’s another subject for another time.


    • This is happening throughout New Zealand and very few people actually know about it….at the time this happened the people on either side of Mums room were having the same done….I have been very outspoken about this….but people just have no desire to handle it….and I think k it needs to be addressed….

  4. I do understand as my mum wished herself gone the last few years of her life and it was very sad to see her in pain. I cannot see how constant pain and suffering is a blessing. Thankfully she is now at rest and if there is anything after this life, reunited with my father whom she loved very much.

  5. Yes, my 93 year old mother. She is still very switched on, and reasonably mobile, but she’s had enough. All her friends are gone, she can’t drive, she’s in a home which she hates, and she can’t see any point in being here any more. For the first time in her life she’s unhappy and it’s hard to see her like this

  6. My grandmother was 97 when she died, she did not enjoy life as she too old , she was a widow and her life was sitting in a chair looking out a window at a tree , she often said she wished she could die . We are all going to die sometime so I don’t know why we have to prolong the inevitable . She should have been given the choice . Her last few years of life were not happy for her . So sad . She deserved a better death .

  7. Hard one. Mum 96 still enjoys many aspects of life though in care. Family so privileged to still have her. Would not like her suffering great pain but pain reliief much better tday and thats why I hate thought of euthanasia. Want my Mum around long as possible. Her love keeps us desperate to see each other despite hurdles!

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