On treating the mind… #DAM2015 Day 26

Source: screen shot from https://holeousia.wordpress.com/2015/08/12/sensitivity-weakness-illness/

Source: screen shot from Dr Peter Gordon’s blog, https://holeousia.wordpress.com/2015/08/12/sensitivity-weakness-illness/

A special friend Dr Peter Gordon, whom we had the absolute pleasure to meet with his wife and daughter (his son as away) in Scotland earlier in the year, writes from the heart and soul of his own humanity. I very much appreciate his intellect, his humour, his depth of character, his willingness to stand up for what he believes in, regardless of what the cost of doing so may incur to him personally and professionally, and I feel as if we are kindred spirits. Mostly, I appreciate his friendship.

There are only a few people in the world I feel as if I am a kindred spirit with, one of them being the late Richard Taylor, who I miss greatly, and another Dr Shibley Rahman in London.

Of course, not to miss any of my other wonderful friends out either; I LOVE you all too.

Anyway, back to blogging! My blog I posted yesterday titled; Living with a chronic illness made me think about Peter Gordon, and one of his more succinct blogs, “sensitivity” … “weakness”: “illness” which I really loved, and which resonated deeply with me.

As it Day 26 of World Alzheimer’s Month 2015, or as we call it in Australia, Dementia Awareness Month 2015 #DAM2015, I thought the topic of ‘otherness’, or of treating the mind, was worthy of consideration in terms of dementia.

One comment on my blog yesterday also resonated, and fits my theme for today;

So maybe the doctors are on the wrong track ..what if ?! they were more skilled with dealing with the mind?
In my opinion the body is ruled by the mind, healthy mind healthy body as the saying goes!
Yours sincerely L.F Paid carer for more than 10 years now…frustrated and still trying to find ways to help 🙂

It does seem, most people are not equipped to cope with things ‘of the mind’, especially mental health and as I was lucky enough to find out, also dementia. Doctors mostly want to prescribe a drug to ‘fix’ us, and when that is not possible, we sit in the ‘too hard basket’. I am often told, ‘there is nothing we can do, in fact, there is so much about the brain we don’t yet understand… see you in six months’.

Almost 30 years ago, just a few months after the suicide death of someone I loved, I needed to see a psychiatrist as I felt seriously suicidal. It was, in fact, a normal response to unresolved grief, and of wanting to ‘be with that person’.

Just like when I was diagnosed with dementia, I ‘came out’ about seeing a psychiatrist, and also, about spending two weeks in a psychiatric hospital for intense twice-daily grief counselling. I was admitted, only because I was suicidal, as if that had not been such a big part of my thinking, I would have been ok to have had treatment in his rooms. I was not ashamed to be seeing a psychiatrist, nor to be an inpatient, but sadly, almost everyone saw it as a weakness. Apart from one nursing girlfriend, every other nurse and most others in my life almost literally ‘took flight’, and then, for years to follow, would say things like, “Oh, are you going to go off the rails again?”

As dementia is still seen by so many people as something to be ashamed of (I say that, based on the way many people treat us, not by how I now feel about having it), and it is too often placed into the mental health basket, when in fact, it is a physical condition of some kind, this adds a double whammy to dementia of stigma and discrimination, of being ‘other’ and of being ‘not all there’.   It is an odd world we live in, when the people who often find it the hardest to ‘care’ for those of us ‘with things of the mind’ are our doctors and nurses. No, not all, but definitely more than is helpful…

Unresolved grief for people with dementia is a huge issue for us, and a major gap in our care.I firmly believe the unresolved, and mostly untreated, unmanaged, extremely complicated, changing grief causes so much of our sadness, anger and a sense of hopelessness.  It causes issues in our physical, physiological and emotional health, and impacts negatively on not only us, but everyone around us. If we start managing our grief, and our care providers support us to do it well, everyone will be better off.

Oh, but of course, as grief is ‘treating the mind’ I guess the psychologists and social workers will have to take this on…

Ps. I know many medical doctors and quite a few nurses who have been not only ignored by their colleagues when they were struggling with mental illness, drug or alcohol dependency, and so on, but not helped. This is reprehensible and unethical, when people who are ‘healthy’ and medical trained in some way, find it too hard to look after their ‘own’, especially when the problem is seen as weakness. In his letter to me before he took his life, David said he was “too ashamed to get real help for his mental health and drug dependency issues, as felt sure it would end his private medical career… ” That was perhaps the one thing that upset me the most.

7 thoughts on “On treating the mind… #DAM2015 Day 26

  1. Pingback: Grief | Travels with dementia carers

  2. Hi Kate,

    Thank you so much for sharing your experiences, thoughts and insights. There is a lot going through my mind right now after reading your blog. I really agree with you.

    I am often amazed by how many people, including health care professionals, still put a taboo on mental illness or mental struggles. Looking for help or admitting that life is hard some times is still a taboo in our society and too often perceived as a sign of weakness.

    The irony is that exactly that taboo creates the problems.

    Namely,

    life inevitably brings painful feelings and sometimes (or often) it is hard to cope with it. That is normal!
    Problems arise when trying to get rid of difficult emotions and thoughts. Denying these emotions can result in mental health issues. Trying to be always happy or trying to be tough and not to cry often results in behaviors that take a person in a downward spiral.

    Think of people who drink alcohol to get rid of anxiety, or drugs to forget the pain, or those who blame others in order to avoid painful feelings of ‘failure’. These behaviors are reinforced as long as society has unrealistic expectations of people and expects them to always achieve, to be always happy and so on.

    The huge grief that comes along with a diagnosis of dementia is not understood and acknowledged in the health care system. After a diagnosis of dementia, the standard next step is medical treatment and not psychological counseling. I am so glad that here in Canada, BC, the Alzheimer Society provides support groups for people with dementia, however more needs to be done in regards to individual counseling and by more professionals in the field. This is why I offer counseling for those with dementia. I hope that one day it will be better and until then I fight for it and support you Kate in sharing your message.

    Thank you for your openness and honesty! It shows courage, intelligence and inner strength.
    Thinking of you with great admiration,
    Nadine

    • Thank you Nadine, and yes, it is that taboo, that treatment of it as a weakness, that creates eve deeper problems for those very people dealing with mental illness, and very often by those who are meant to ‘care’ for them!

  3. Gosh, there is so much in this blog, Kate. I imagine one of the parts of the grief is the loss of the future you had imagined before your diagnosis. While you are determinedly living well, your life both now and later is different to what you expected. The only way I can understand it, is when I divorced, I grieved for the future family life I had imagined. I had to find a way of living that did not include those dreams. And I did.

    To do that while struggling with an illness is so much harder. When my sister was diagnosed with dementia, immediately the counsellor she had been seeing “to deal with stress” said he could no longer see her. Why? At a time when she most needed his kind and gentle companionship he opted out. Her husband treated himself to minor nervous breakdowns on a regular basis, while making it impossible for the rest of the family to support either of them. He pretty much saw himself as the victim, as my sister had to leave her well paid employment and thus affected their future prosperity.

    What my sister felt about her future, was difficult to know as her husband left little space for her feelings. The saddest thing of all was when my sister said that she wanted to end her days in our family home and we had to refuse her that one thing because her husband would have come too and the whole family would have been disrupted by his erratic and hostile behaviour.

    One of her husband’s sayings (ah, the irony!) was “There are no problems, only solutions!”. Certainly if people with dementia are allowed to work through their grief at both their diagnosis and the loss of their future self, then that will also help them to find ways to live even better once that is out of the way. Or is that too simple a solution?

    • Thanks for sharing your own family stories here… I think the simple solution, whilst it is not a cure, is actually what we need to ever find our way through to being able to live beyond the diagnosis of dementia, at least in the earlier stages of the disease. I am under NO illusions what the end stage is likely to be like, but almost no-one is diagnosed at end stage, with any disease for that matter, not just dementia. Grief is a HUGE part of a diagnosis of dementia, and never goes away, because as another loss of function or capacity happens, the grief is renewed all over again… (((hugs))) to you always Alison x

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