Tuesday, 30 August 2011

Any Thoughts on the Matter?

The other day I had a long email from a blogger friend, with whom I have been in contact behind the blogging scenes for several years. She is very worried about her husband who was diagnosed with MCI (mild cognitive impairment) some time ago. There is a possibility that he is suffering from early onset Alzheimer's; it would take further tests to establish the presence of the disease.

My friend is a very capable woman, well able to take care of herself and her husband, whatever happens. But she now has to decide between two alternatives: to find out what is wrong and start some form of treatment, the outcome of which is doubtful, or to leave it at the previous diagnosis and hope for the best. Whatever she decides, her husband will accept; he himself is no longer able to make an informed choice.

Mary (not her real name) is deeply troubled, as anybody would be in her situation. To know or not to know, that is the question to which she will have to find the answer. She hasn't asked for my advice and I won't be offering it.

People rarely ask for advice in such important matters unless they know that the advice they will be given coincides with what they secretly already know is their preferred course of action. We really wish to be given the reassuring green light to go ahead or moral support for our own decision not to face up to things.

I have an excellent example of this in my closest family.  My mother was very ill for about a year before her death. All the signs were that she had cancer. She never asked her doctor for a full diagnosis and preferred to ignore his hints. She could have spoken to me at any time, in fact, I frequently encouraged her to do so.

My mother never did. When she was hospitalised the doctors told her that any meaningful treatment depended on full knowledge of her condition. During one of my brief absences she telephoned my cousin for advice. My mother absolutely knew what my advice would be and she also knew that my cousin's advice would be the total opposite to that. She knew that I would want to know as much as possible about the situation in order to be able to make an informed decision; as far as I am concerned, it is only the full possession of facts which allow me to face, and deal with, an enemy, which is what cancer is. My cousin, however, is the exact opposite; her way of dealing with things is not to know anything. "was ich nicht weiss, macht mich nicht heiss"  (I can't get worked up about something I know nothing about).

Mum preferred the second option, which had been her solution all along. My cousin, in effect, gave her permission to stick to it. In the end, it didn't much matter, she had left it too long for effective treatment.

Mary's situation is somewhat different, in that there is so far no permanent treatment for Alzheimer's, and certainly no cure; all she could hope for is a slowing down of symptoms, at best.  But somewhere, perhaps only at the back of her mind, she knows what she will do.

Would you know?

"Forewarned is forearmed" or  "Where ignorance is bliss, 'tis folly to be wise"?


  1. I'm the kind of person who always wants to know more; I'm so much more anxious when I can't identify the problem. And with medical issues, the earlier you know what's wrong, the better chance for treatment.

    At the same time it's impossible to speak for somebody else's situation; what works for me won't do for another.

  2. There is no one choice that is right - it depends on the particular circumstance and the people involved. As you say, people usually know at some level what they want to do - the real problem is conquering the fear to make the decision and know with all that implies, or not know with all that implies.

    She could ask herself: Given what I now know to be the case, how do I want to live my life with my partner?

  3. ultimately it is her decision...i would find out personally...if it would make a difference...

  4. I think the key is this question: What frightens you more, knowing or not knowing?

    We never know what we will do until we are in the situation. However, I rather think I want to know only enough to know this: Is there treatment that is PROBABLE to change the course? If not, let me be and let it run the course. Keep me comfortable as possible and let me enjoy my time. That's me.

  5. I've given this some thought before, and for me, I would want to know so that I could make decisions about my future and the course of actions I might want to take. Knowing does not mean you have to take action.

    Not knowing your options when you really know something is wrong feels rather pathetic to me because you already have a sense of something gone terribly awry but are living in fear of facing it.

  6. I think this is something that should be talked about well beforehand when people start getting on in years. Everyone's situation is different. In regard to cancer - how much extra time would treatment give the sufferer? Is that extra time worth the discomfort/pain/hospitalization and even the expense needed for treatment? Does the patient feel they have lived a good life? Or that they are being cheated? Do they want to fight? Are the treatments for Alzheimer's "easy" in comparison? Pop a couple pills and hope for improvement? Might depend on the cost of the medication.

    My mother - nearing 90 - insists that she will not treat any cancer that she may be diagnosed with. She has lived long and well and does not want chemo and operations that can not possibly extend her life enough to warrant the pain and expense involved. Leave the fight to those who have many years ahead of them if they win.

    I informed my husband that if my recent surgery went bad, and I was paralyzed - that he should very quickly divorce me and leave me in the care of the state so that he would not be dragged into a state of pennilessness himself. I would not view it as rejection but self-preservation.

  7. I think each disease and each person has to find their own difficult path and only seek advice when they really have choices to make. She just needed to know that you were there to listen and to offer your help. We all dread this type of news and most of us will be faced with something like this if we live long enough or our spouse does. My huband and I also recently got some similar news about a relative and it clouds our thoughts now each day.

  8. Would I know what to do? I'm not sure. I think I'd want a diagnosis, to know what the condition was, but then, if I was in the situation you've described, maybe I'd just go with the flow. I'm not sure. I am sure of this though: my wife and I eat and live as healthy as we can and are careful to exercise our minds. That is not a sure bet against dementia, but at least we are doing our best to avoid it.

  9. There is no right or wrong answer here. As you said, it's whatever she wants it to be. Personally, I like the sound of dementia, even senility, better than Alzheimer's.

  10. As Bonnie says in her comments, it's difficult to generalize because every situation and every person is different. Personally, however, I usually find myself if the "forewarned is forearmed" camp. Once you understand the facts, you can either try to change the facts or accept them.

  11. We realized our parents had Alzheimer's Disease, or some kind of dementia, the year of their 60th anniversary, when my brother threw a party for them and Dad didn't recognize all the guests, and Mom was even more dithery than she had been.
    That was five years ago and, since then, they have both died, but not before we tried everything to keep them out of care, and then were grateful when the situation was taken out of our hands and their doctor got them into a care facility.
    Mom died of pneumonia following cancer surgery, a heart attack, and a bad fall. Dad lingered on until the dementia shut his body down.
    I would rather die as Mother did. She said, "This is it. No more. No more ambulances, no more doctors," and even though she had been diagnosed with the early stages of Alzheimer's, so her memory was bad, she was still capable of carrying on a conversation and making decisions.
    Dad wasn't.
    He had been a horn player as a young man, and had very strong lungs he had wasted away to a shadow, and hadn't been able to say more than a couple of words for a year. He didn't even know Mom had died. He thought she was still with him, which was a blessing, but I know he wouldn't have wanted to live that way.
    We mourned the multi-talented man who was our dad, even as we loved the funny old fellow he had become.
    When the time is right, I would hope your friend can find a good care facility with kind and loving staff members because, no matter how much we love the dementia patient, it is unimaginably difficult to live with one. Or two, as I tried to do.
    — K

    Kay, Alberta, Canada
    An Unfittie's Guide to Adventurous Travel

  12. I think you're absolutely right, Friko - your friend may already know what she is going to do. I'd want the facts - and have already had some of those to face. I'm the sort that needs to make decisions with the best and most info possible.

  13. I go back and forth between wanting to know everything and not wanting to know a thing. I used to think having knowledge about health issues was the way to go and for the most part I still feel that way. But some days, knowing what is going to happen causes so much pain. I wish I could be ignorant right now (like my older brother who has no idea how severely ill my mom is). Instead I know all about the palliative scale. I know about dehydration and side effects of morphine. I know the steps in the process of dying. I wish I knew none of this and them maybe I would not hurt so much.

    However, with all that said I know better than most how to make my mom smile and how to make her comfortable. I know how to talk to her. I can be by her bedside for hours (Unlike my brother who can barely get the nerve up to say hello). I can brush my mom's teeth. I can put her on the commode and change her pad. I know how to encourage fluids and what foods she will still eat. I can look into her eyes. I know what to do when she is delusional. Today she said she had a knife and wanted someone to take it. She started to cry because nobody knew what to do. I went up to her and said Mom, your brain is being affected by the morphine. Look at your hand. Do you see a knife? It is OK. The morphine is just playing tricks on your brain. The same went for a few days back when she said tow fat men in red shirts wanted to do her personal care. No mom. That is the morphine.
    OK, I am being very long winded here. I think we need to have a knowledge and a direction of the disease process. I think we need to advocate loudly and strongly for ourselves and those we love. I also think we need to step back and just love our loved ones as people and not as patients. It is a very fine line. Sometimes they run into each other. We must never lose our focus that the person we are caring for isn't a diagnosis but a human.

  14. Susan, one of my favourite bloggers is chronicling her husband's[and her's]ordeal with Alzheimers. She's an amazing writer and I think you'd enjoy her blog----

  15. If it were me, I'd want to know. I may or not seek treatment, depending on what I found out, but I would want the facts so that I could make an informed decision.

  16. My imagination creates such horrors that I get tested. With Alzheimer's, the problem of non-diagnosis leaves the carer with less and less tools to handle it. An early diagnosis when the sufferer understands his/her problem can (not always) be compliant. Not easy.

  17. There is no right answer, as many have said. I am reminded of tow stories.

    My father had a friend who was a radiologist. The hospital had just acquired a new CAT scan machine, and he decided to volunteer to try it out and calibrate it. You can probably see where this is going. He had no idea he was sick (he was in his early 50s and very active and healthy), but there were little tumors all over, lighting up the scan like a constellation. He was dead within six months. He didn't have a choice of knowing.

    I have two aunts with cancer, currently. Well, sort of. One just passed away. In Lebanon it is sort of customary for people to not tell the patient about their illness if it is a death sentence (they won't even mention cancer by name, they call it "that disease"). The aunt that passed had no idea, and people kept telling her oh, you'll feel fine soon! It was very quick-moving. The other aunt knows, and is working hard to stay alive and to sort of wrap up her affairs. She is scared to death of what is coming, but feels as prepared as she can, I guess.

    In the end, nobody knows what will happen, anyway. Life's funny like that.

  18. Hello:
    In matters such as this we should concur with you that it is wiser not to offer advice, even if asked, for, as you say, it is only taken, or acceptable even, when it coincides with whatever decision has already, even subconsciously, been taken. These are difficult times for your friend and her husband; we trust that they will find the strength to cope.

  19. My mother was ill for a long time and tests showed nothing. Most doctors (not her own GP) assumed it was attention-seeking or that she had mental health problems as her symptoms didn't improve and she kept badgering for more tests. Only finally, when she had a secondary (and terminal) cancer was it diagnosed. So at that point it was a relief to be told, and a vindication that she had been genuinely ill all along, even though nothing could be done.

    On the other hand, it was very difficult for her to live with for the next six months. So, since the palliative treatment worked well, she decided she didn't have cancer after all and that the tumour was benign.

    She, my sister and I were all told the facts at the same time and not given an option whether to know. We needed to know, and at least none of us had to tell the others. But if someone doesn't want to know, I'd not advise them to ask.

  20. What a terrible decision to have to make. I think it would depend on the age of the person and the comparison between just continuing to do what he or she is already doing and the effects of the treatment.

  21. My father and I have this discussion often, now that he is well into his sixties. He has stated without equivocation many times that he does not want to live out his last days in a hospital on dozens of medications, hooked up to machines to perpetuate his breath.

    This year, he battled prostate cancer as a result of being exposed to Agent Orange during three tours in Vietnam so many decades ago. Though his chemotherapy and radiation was successful-- he describes it as hell-- he is still on Zolodex and they've recommended it to him for the next two years. A nurse said other patients stay on it for six years post-treatment.

    It gives my father hideous nausea, hot flashes and makes him feel like he's having an out-of-body experience. The doctors have offered pills for the hot flashes to which he lifts his hands with a resounding, 'no!'

    We have the peculiar burden in this age of being free to choose between two evils-- natural decline with its attendant heartbreaks and medicated protraction with its attendant side effects.

    I am not being asked for counsel but, with all due respect, I will take the liberty to give my thoughts. I would recommend affection. Tea in the sunlight, reading stories, stroking fingers, smiles, silent prayers with or without tears-- the kind of which steal a piece of God and wrench it into our own hands.

    My deep sympathies with Mary.

  22. Difficult one and it depends very much on the individuals involved.

    My mum didn't know about her dementia and we (her children did) - lack of knowledge made her stress free and for us kids - the more knowledge we had - the less stressed we were - we knew what to expect and were not frightened by it.

    Hubby had watched my mums decline and decided he did not want to know the result of his MRI scan and this was respected. He is stress free and his decline has spanned a period of over thirteen years and is still 'safe' to be left alone.

    Lack of knowledge and/or an unwillingness to accept has made his sibling strangers - now that hurts.

    Every situation and the progress of the disease is different.

    Your friend should do what she feels is right for her husband and herself.

    Her husband may decline or stay as he is. When and if he does decline - she should gain knowlege to protect her own emotions and enable her to cope.

    If she feels that ignorance won't be bliss, then she should seek knowledge now - just in case.

    It is a difficult decision to make - but she must be led by what she feels and perhaps knows is.

    Anna :o] right

  23. Unless entirely unaware, I don't think anyone chooses between knowing and not knowing. As long as we know the worst case scenario, we choose between facing it full on or tucking it away. Everyone has their own coping mechanisms. I tend to tuck... at least for a while.

  24. It's an individual's right to decide what they wish to do in such circumstances - to know or not to know, to fight or to be at rest, and many other options between these poles. Sometimes, of course, people may not be able to properly make these decisions themselves because of Alzheimer's, mental illness, or whatever. Then others have to help them in their choice in a most caring, sensitive and informed way.

    My obstinate and obstreperous father took on the whole of the Social Services in his late 80s. And won. I didn't always agree with his point of view (he tried to look after my mother who had Alzheimer's till far beyond his capabilities) - indeed his attitude caused our family a lot of heartache at the time - but now I've come to respect his sheer bloody-mindedness. (My mother was never in any serious danger, and the situation was being carefully monitored.)

    Essentially everyone wanted my father pushed into a Care Home along with my mother. I'm glad now he fought tooth-and-nail against it. He would have died in there. (And probably bored all the other residents to death at the same time.)

  25. I want to know. My big roadblock with my mother's care is that I often figure out the right questions to ask after the fact. Thankfully she finally agreed to switch doctors to a younger, more aggressive physician who works hard to keep her, as she says, "feeling good for the shape I am in"

    Her previous doc's pronouncement was "Your mother is old. Things are going to happen to her. She was 81 at the time. She is 92 now, and is a blessing to family and acquaintances. She is also realistic about her conditions (congestive heart failure, bad aortic valve and renal failure.

    No surgery or extreme measures. Thanks for your post and thoughtful comments, Birdie's in particular.

  26. I've read your posting and all the thoughtful, reflective comments on how we each differ and how each of us must choose what works for us.

    I sighed deeply at the end of the comments because life, in all its complexity and, indeed, in all its simplicity is so mysterious. So mysterious as to what and when we choose and how and why we choose-anything, everything.

    The path we choose is ours for better or for worse. All we can do for one another is to respect the deep down mystery within.

  27. Hi Friko .. this little book gives lots of ideas as to Dementia's development and the coping mechanisms patients use .. I found it fascinating .. it's written by the Director of Dementia at BUPA -


    and this is the review on Amazon .. "In my opinion, the best book ever written about dementia. I have worked in health and social care for 25 years and have had more dementia training than you can shake a stick at. I learned more from reading this book than I did at any training session. It really makes you think about the person you are caring for and enables you to create different ways of delivering person centred care. I have two copies which are currently being passed around the whole of our care team to read. Absolutely brilliant, you won't be disappointed. I recommend anyone who works with, cares for or knows someone with dementia reads this book."

    And Still the Music Plays by Graham Stokes ...

    I hope this helps .. with thoughts Hilary

  28. I want to know, but I have the right to accept or deny any treatments available.
    We're going through a a similar situation with my father. He became very ill a few months ago and he, himself thought he was dying. Gathered us and told us what to do when he had breathed his last...we were to call the sheriff's department, then the hospital where his body goes for medical research, etc. His father had died of colon cancer, and his signs sure pointed to the same thing. But he refused to go to the doctor.
    Now he has good days and bad. On a couple of occasions, we've actually thought he was gone. Yet he doesn't want to know, and he says if he DID know, he would refuse any treatment.
    I feel for Mary. But sometimes there's just nothing we can do.

  29. that's a tough question. here in the US where there is no universal health care, if you don't have insurance, which I don't, I think sometimes it's better not to know. knowing means trying to do something about it even if it means impoverishing yourself and your mate (and children if you still have kids at home). in the case of cancer you could likely impoverish your family and then still die.

    I guess if it was me, I would want to know the diagnosis so that I could decide if it was worth losing my house for treatment. I guess age has a lot to do with a decision. If I, or the person, was young I would want to know and fight. If I was very old, probably not. At 61, it would be the toughest to decide. Still have a good 20 years ahead but too old to recoup from financial disaster.

  30. This is a tough situation for sure. We all have a difficult time with "knowing" because sometimes knowing means we know there cannot be a positive outcome.

    Unfortunately, in Mary's case it may be that there is no positive outcome, but would not knowing make it any less difficult? I think not. ~Dianne

  31. In this case it would seem that there is some sense in having a diagnosis. From the point of view of the couple, they presumably can still give one another support. It is a terrible decision to have to make; I know I would find it hard to know the worst right now when I am ok, but should symptoms make Alzheimer's likely then it would help the wife to deal with the situation.
    You are absolutely right not to give advice. This is a decision for them.

  32. I would want to know what's going on, whether it was my own condition or that of someone I love. Having been through the dementia thing with my mother, and having to cope with the awful confusion about why she was behaving the way she was, the explanation, late as it was, was an enormous relief. I would rather know what I am facing, or what I am dealing with, that to cast about in the dark.
    On the other hand, I do realize how difficult it is to acknowledge serious illness. When I looked after an elderly cousin years ago, I couldn't bring myself to tell her that she had terminal cancer. Even though she was a very up-front person and would probably have accepted and even welcomed the truth, I was incapable of delivering such news to her. It was as though we might be able to escape her fate if we just didn't say it out loud.
    I have told my favourite Belgian that if ever he suspects there is something going on with my mind that could be dementia, he must be flat-out honest with me. He is less certain he wants the same from me.
    This post of yours makes me want to write about something similar. You are often provocative - in a good way! - and I wish I had your ease of expression.

  33. I would want to know -- EVERYTHING. I can't fight a ghost. I learned long ago that knowledge is power, and in medical issues, critical. Doctors call me a walking miracle. I'm not. I'm a fighter who cries for a week and then I start to fight back. That said, I'm getting tired of fighting. This is a very tough call.

  34. I would have to know. But, I didn't think that there was a definitive test for Alzheimer's.

  35. Sometimes there isn't a "correct" answer. But fighting to preserve as much of life as possible is what I believe we are here to do, till there isn't anything left to do....


  36. I would prefer the first option by a long chalk!

  37. This kind of thing is always so difficult. I sometimes listen to that BBC Radio 4 programme on medical ethics and it's full of problems, the doctors also have to decide what to do. It makes me glad I don't have to deal with this stuff as part of my work. As for the answer, no, you can't advise. Actually people do what they feel like doing, and nobody has the right to argue.

  38. What a challenge ! It was only last month that I got me the book called "Demenz", about Alzheimer and alike, where people suffering, taking care of those and experts offered a glimpse of what age can mean.
    For a while now I changed what I eat and drink, try to learn a new language etc.

    Patience, strenght and a 'langen Atem' to your friend.

  39. My mother died with Alzheimer's. We dealt with her illness for years, before her diagnosis, and after. It was a terrible burden for my father to care for her alone, and he was in denial, never taking her to get diagnosed. I believe it was integral to his demise of cancer six weeks after he was diagnosed. His whole system was worn and not resistant.

    Then my sister tried to care for Mom alone six months after we took her to be diagnosed, and she did in fact have Alzheimer's. This care nearly drove my sister to lose her mind.

    If you go full on toward diagnosis, then you have "a cloud of witnesses" as another sister says, and all the help that is available. There is a lot of research going on in all forms of dementia.

    I feel for your friend. She is my friend too.

  40. Thanks for calling at my blog. Yes, it is a coincidence ! :)

  41. Ach! We do know what we want to hear, but fear to accept it. . .

    We the worriers feel that worrying about our friends' troubles is the thing to do. So silly, we worriers!

    Excellent post, F

    Aloha from Waikiki;

    Comfort Spiral
    > < } } ( ° >


    < ° ) } } > <

  42. I don't say this abstractly: I would want to know. As for advising others, that's always fraught. If I heard an opening, I would encourage finding out the facts, then making decisions based on that (which does NOT mean simply swallowing the medical advice--quiz, probe, argue, question, with respect for those who have earned one's respect--but in the end, deciding, difficult though it may be, for oneself).

  43. I made some comments to you on my own blog post, so won't repeat them here. Thank you for visiting, and I would very much like to stay in touch.

  44. all the research on alzheimer's suggests that early diagnosis and treatment greatly increases the quality of life and slows the deteriation - so my advice is start now

  45. It is at times like this, that the concept of free will is really put to the test. Is the person allowed to choose a course of action (or non-action) without pressure from the medical profession, family and friends? I think, whatever the decision - it must be respected.


  46. "Was ich nicht weiss, MACHT mich heiss." Add in a panic attack, ca 3 in the morning.

    Give me the facts: I am not an Oistrich with my head in the sand. Though might run later.

    In your friend Mary's case I can't see the problem: Her husband doesn't mind one way or another - presumably he is too far gone. So what harm can it do for her to know the options and - then - for her to make an informed decision. And be prepared for what the future might hold for both of them. Problems won't go away just because we don't dare face them.

    Your mother's case different since she clearly was still compos mentis - and it only concerned herself. Though presumably hurtful for you that she turned to a cousin because she anticipated your advice, the very one she didn't want. And how very perceptive and kind of you to just leave it.

    The subject is dear to my heart; not that I have had that experience with my own parents (both in their seventies and fit as the proverbial fiddles) but I have already told my nineteen year old son that, when the time comes and his mother is beyond salvation, to gently dislodge a roof slate to hit me on the head (Verdict: Accidental death. After all I don't want him in prison on my behalf, neither would I want to blight his life with my lumbering self. Naturally, currently his answer: OHHHHHHH, MAMA!) All I can say, better sooner than too late, forewarned forearmed, contingency plans in place at all times. Don't laugh. And no, I am not a control freak or work for the SAS. But I'd hate leave any dirty dishes in the sink for others to clear up after me.

    Main thing with your friend: Go gentle. The most caring advice can so backfire you don't know what's hit you.

    All the best,

    PS Thanks for your recent message: Am at crossroads at the moment with my blog. A question of die or reinvent. Please do use my email address which presumably - by default - you will have.

  47. I for one have no interest in knowing whether I have anything life threatening wrong with me. I would rather live in total ignorance and just die. We live in an age when we are all trying to die of something less serious. The end is inevitable. The same as I would not want to know if I was going to die in a car crash tomorrow. I would rather live for today and not worry about how much pain I will be in tomorrow. I would be more interested in knowing how old your mum was when she died and if she had a happy life.

    A very difficult situation for your friend. All you can do is listen.

    I wish you a long, happy day!

  48. My curiosity always wins...

  49. Friko to Ursula

    I can't get to you through email because you come up as noreply-comment@blogger.com.
    Also bitte, wenn du willst, benutze meine email Adresse im dashboard.

    Ich bin neugierig.

  50. This is so well written.

    I know a couple who is going through this as we speak. They've had all the tests (it's the husband only 70) and they deal with it. Not full fledged Alzheimer's yet but disturbing inability to remember things, depression in conjunction with the cognitive issues. The wife is 12 years younger and she's doing what she can but I'm sure it's devastating.

    I would need to have the facts and pursue some sort of treatment.But I would be devastated.

  51. Knowledge is power but ignorance is bliss. To be a good listener to those suffering is the best one can offer.
    I would rather know but keep the knowledge to myself if it were me; if it were someone I loved I'd want to know, too.


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