1. Denial and Isolation
The first reaction to learning of terminal illness or death of a cherished loved one is to deny the reality of the situation. It is a normal reaction to rationalize overwhelming emotions. It is a defense mechanism that buffers the immediate shock. We block out the words and hide from the facts. This is a temporary response that carries us through the first wave of pain.
As the masking effects of denial and isolation begin to wear, reality and its pain re-emerge. We are not ready. The intense emotion is deflected from our vulnerable core, redirected and expressed instead as anger. The anger may be aimed at inanimate objects, complete strangers, friends or family. Anger may be directed at our dying or deceased loved one. Rationally, we know the person is not to be blamed. Emotionally, however, we may resent the person for causing us pain or for leaving us. We feel guilty for being angry, and this makes us more angry.
The doctor who diagnosed the illness and was unable to cure the disease might become a convenient target. Health professionals deal with death and dying every day. That does not make them immune to the suffering of their patients or to those who grieve for them.
Do not hesitate to ask your doctor to give you extra time or to explain just once more the details of your loved one’s illness. Arrange a special appointment or ask that he telephone you at the end of his day. Ask for clear answers to your questions regarding medical diagnosis and treatment. Understand the options available to you. Take your time.
The normal reaction to feelings of helplessness and vulnerability is often a need to regain control–
- If only we had sought medical attention sooner…
- If only we got a second opinion from another doctor…
- If only we had tried to be a better person toward them…
Secretly, we may make a deal with God or our higher power in an attempt to postpone the inevitable. This is a weaker line of defense to protect us from the painful reality.
Two types of depression are associated with mourning. The first one is a reaction to practical implications relating to the loss. Sadness and regret predominate this type of depression. We worry about the costs and burial. We worry that, in our grief, we have spent less time with others that depend on us. This phase may be eased by simple clarification and reassurance. We may need a bit of helpful cooperation and a few kind words. The second type of depression is more subtle and, in a sense, perhaps more private. It is our quiet preparation to separate and to bid our loved one farewell. Sometimes all we really need is a hug.
Reaching this stage of mourning is a gift not afforded to everyone. Death may be sudden and unexpected or we may never see beyond our anger or denial. It is not necessarily a mark of bravery to resist the inevitable and to deny ourselves the opportunity to make our peace. This phase is marked by withdrawal and calm. This is not a period of happiness and must be distinguished from depression.
Loved ones that are terminally ill or aging appear to go through a final period of withdrawal. This is by no means a suggestion that they are aware of their own impending death or such, only that physical decline may be sufficient to produce a similar response. Their behavior implies that it is natural to reach a stage at which social interaction is limited. The dignity and grace shown by our dying loved ones may well be their last gift to us.
Coping with loss is a ultimately a deeply personal and singular experience — nobody can help you go through it more easily or understand all the emotions that you’re going through. But others can be there for you and help comfort you through this process. The best thing you can do is to allow yourself to feel the grief as it comes over you. Resisting it only will prolong the natural process of healing.’
I had this,
‘Right vertebral artery dissection and occlusion on 7/2/10 with an acute infarction of the pons. (thrombolitus of the baslar artery.’
For two weeks I was officially (medically) considered to be in a PVS state, when in fact I was in…
Scary. Horrible. Traumatic.
So asked what I thought of brain interface computers, it’s no surprise that I have an opinion on this!?
Wiki says, ‘The brain–computer interface (BCI), often called a mind-machine interface (MMI), or sometimes called a direct neural interface or a brain–machine interface (BMI), is a direct communication pathway between the brain and an external device. BCIs are often directed at assisting, augmenting, or repairing human cognitive or sensory-motor functions.’
‘The field of BCI research and development has since focused primarily on neuroprosthetics applications that aim at restoring damaged hearing, sight and movement. Thanks to the remarkable cortical plasticity of the brain, signals from implanted prostheses can, after adaptation, be handled by the brain like natural sensor or effector channels. Following years of animal experimentation, the first neuroprosthetic devices implanted in humans appeared in the mid-1990s.’
I am a MASSIVE BELIEVER IN NEUROPLASTICITY, as I am being able to unlock the mind that is trapped in the physical shell.
To educate you:
An ‘unaware wakefulness state’ is now considered the old Persistent Vegetative State, or PVS label.
A ‘wakefulness state’ is where the patient cannot communicate, but is a thinking, feeling individual, just like they always were. (Me!)
But neurologists still often get the diagnosis wrong between PVS and a ‘wakefulness state’.
(Scary, though I’m not surprised, especially by what loved-ones tell me.)
We need BRAIN COMPUTER INTERFACE technology!!
Why do you want to stroke exercise more.?
(Heidi Davies prompted this blog on Facebook.)
- To make more stroke progress improvement?
Or as our new charity strap line says:
FIGHT FOR PROGRESS
- To get a ‘dab’ on and give your heart/lungs a workout?
- Or both?
- You fear falling over on the autumn leaves (or impending ice)
- You can’t get a lift to/afford/blag a gym membership?
- Or you, (like pretty much all serious illness survivors) have no self-confidence, self-esteem and have become apathetic if not also depressed in life?
Why not put these ideas on your Christmas pressie list and literally kick start 2014?
Why not try cycling from armchair/wheelchair?
Or look to fundraise for something like this, if the idea above is not suitable. (Check out gofundme.org.)
Other cycling ideas:
Other assistive technologies include (source:
■ Crutches, prostheses, orthoses, wheel- chairs, and tricycles for people with mobil-
■ hearing aids and cochlear implants for
those with hearing impairments;
■ white canes, magnifiers, ocular devices, talking books, and software for screen magnification and reading for people with
visual impairments; (like http://www.tobii.com)
■ communication boards and speech synthe-
sizers for people with speech impairments;
■ devices such as day calendars with symbol pictures for people with cognitive impairment.
Don’t just worry about it, think it, just DO IT!
(No, I’m NOT on commission!;0)
I agree with this TOTALLY
There are so many parallels with misunderstood people trying to cope emotionally with illness, injury or mental illness or cancer.
In a speech later, Mr Hunt plans to highlight the “problem of loneliness that in our busy lives we have utterly failed to confront as a society”.
“Some five million people say television is their main form of company,” he will say.
We should improve our treatment of elderly people, he will conclude.
Had a fabulous day today with the embodiment of heroism herself, Ms Christine Waddell.
We have long since been Facebook chums over the last 2 years, but today we finally got to meet in person.
We share a wicked sense of humour, bloody-mindedness and drive. She had a lovely carer who helped me with that ‘bloody’ communication board, that I am well known to be crap with.
Then, I got the privilege to see her in action in one of her relatively newly re-instated, physio sessions, with her wonderful team at Neural Pathways. She’s has had 15.5 years of no rehabilitation and no movement but she is re-writing the rule book, on locked in syndrome rehabilitation.
No wonder Christine looks forward to her sessions with two hours of male attention a week!! 😇
I got to see her sit unaided on a plinth in a seating position, to raise and lower her head up and down and side to side. She pushed and pulled away from her body with a sheet and had some Electrical Stimulation on her lower back and some thumb movement.
It was impressive to watch her quite INCREDIBLE progress after SO long of nothing!
The guys at Neural Pathways see working with Christine as a win:win.
“Not only is she progressing, but they are learning so much from Christine!” said her Physio today.
She even enjoys the once-a-day M & S curry, or sausage and mash, or pasta dish, (albeit blitzed at the moment. But that won’t be for long!). She has been nil-by-mouth for 17 years, can you believe it?
She communicates very effectively using her 5 year old Tobii eye gaze. However, her only complaints are:
* It’s very slow and
* she can’t use Facebook while she’s sunbathing, because of the glare on her screen. (Take a lead from the new Amazon Kindle?)
We both are social media addicts and share a mischievous sense of fun!
All I have to say now Christine is that you need really need your care team to trim your ginger muff!! (Either that or it’s the start a new trend for Fanuary!)
This is the most fantastic TED Talk I have EVER watched!!!
(Use this link if you cannot see the embedded video.)
‘This intervention may lead to improved spinal chord recoveries and improved quality of life for patients.’
‘There is still so much to do but… remodelling the plasticity of the brain and spinal chord may also help many other neurological conditions.’
‘This advancement will help the brain help itself… it is not ‘if’ but ‘when’.
(Incidentally, a saying I have always used too!)
This blog was inspired by Chris Evans’s BBC radio 2 show ‘pause for thought’ on Friday 18th October 2013.
An individual suffers a huge trauma, pain or loss.
So their friend either offers them,
‘O that’s awful, terrible, dreadful… Shall I get you a cheese sandwich?’
‘That’s awful, I do (or usually), I don’t understand what you are going through, but I’m here for you, in every sense if the word, through your up’s and downs.’
Mother Therese once said,
“Compassion begins at home, and it is not how much we do but how much love we put in that action. Do not think that love has to be extraordinary. What we need is to love without getting tired.”
Empathy and friendship may just mean something small, like doing your Aunties gardening once a week for her for 1/2 hr or taking her shopping or just sharing a coffee.’
Compassion is a human emotion prompted by the pain of others.
More vigorous than empathy, the feeling commonly gives rise to an active desire to alleviate another’s suffering. It is often, though not inevitably, the key component in what manifests in the social context as altruism.
Our resulting pain varies because not only are WE all different, but our lives map out quite differently too.
I think we ALL NEED TO GIVE AND RECEIVE COMPASSION.