More Thoughts on Ageing...

Thomas Graboys, a well-known American physician became ill, a short time after losing his first wife to cancer. He was diagnosed first with Parkinson’s disease and then with Lewy-body dementia.

From his own perspective, Graboys and his friend, Peter Zheutlin co-wrote a book discussing the devastating effects of such incremental dependency, and loss of personal dignity.

In a recent New England Journal of Medicine (Nov 27. 2008) book review of this book Dr Joanne Lynn describes how "Graboys worried about the effects of his illness on his family, finances, and reputation, but he had enough family, relationships, and resources to support care at home."

She went on to say that "most Americans with similar dependency face impoverishment and institutionalization, chaotic and impersonal services, and routine errors in treatment. Policymakers complain about Medicare’s costs and Social Security’s shortfalls, but they rarely recognize the inadequate supply of at-home caregivers and the inevitable reduction in retirement income, both of which are personal calamities. We do not have a plan that could mitigate these problems,..."

"Graboys and his coauthor present the hard truths of these situations, such as the distress of family members who are caregivers, the potential persistence of a fragile life beyond all predictions, the problem of finding meaning in life when one has serious dementia, the overwhelming financial burdens, and the frustrations of losing one’s social role and memory. Graboys also mentions, but does not quite believe in, the possibility that family life could actually deepen its meaningfulness when members care for one another during progressive disability that eventually ends in death."

"Our society needs the perspectives that are provided by the stories in books like this, since our ability to evaluate the choices that patients and families make may be limited by our lack of experience. The narrative Graboys and his family encountered a profoundly problematic set of challenges as he lost his body movement, his medical practice, and then his memory. Exploration of his account and of other narratives of disabling and fatal illness helps our society to learn which actions in such circumstances are appropriate, which are heroic, and which are immoral."

Also a special thanks to my brother Henry, who furnished the following ideas through his search for how to sensitise ourselves to these problems of ageing and how we can all learn to cope with it and increase our understanding and perhaps ease the discomfort level of our loved ones who may suffer from these.

The following excerpts are from the familydoctor.org

"Dementia: Info and Advice for Caregivers

What is dementia?
Dementia is a brain disorder that makes it hard for people to remember, learn and communicate. These changes eventually make it hard for people who have dementia to care for themselves. Dementia may also cause changes in mood and personality. Early on, lapses in memory and clear thinking may bother the person with dementia. Later, disruptive behavior and other problems can create a burden for caregivers and other family members.

Dementia is caused by the damage of brain cells. A head injury, stroke, brain tumor or disease (such as Alzheimer's disease) can damage brain cells and lead to dementia.

How is dementia treated?
Some causes of dementia can be treated. However, once brain cells have been destroyed, they cannot be replaced. Treatment may slow or stop the loss of more brain cells. When the cause of dementia can't be treated, the focus of care is on helping the person with his or her daily activities and reducing upsetting symptoms. Some medicines can help people who have dementia. Your family doctor will talk with you about treatment options.

Why do people who have dementia become agitated?
The agitation can have many causes. A sudden change in surroundings or frustrating situations can cause people who have dementia to become agitated. For example, getting dressed or giving the wrong answer to a question may cause frustration. Being challenged about the confusion or inability to do things caused by the dementia may also make the person agitated. As a result, the person may cry, become irritable, or try to hurt others in some way.

How can I deal with agitation?
One of the most important things you can do is avoid situations in which your loved one might become frustrated. Try to make your loved one's tasks less difficult. For example, instead of expecting him or her to get dressed alone, you can just have your loved one put on one thing, such as a jacket, on his or her own.

You can also try to limit the number of difficult situations your loved one must face. For example, if taking a bath or shower causes problems, have him or her take one every other day instead of every day. Also, you can schedule difficult activities for a time of day when your loved one tends to be less agitated. It's helpful to give frequent reassurance and avoid contradicting him or her.

What should I do if hallucinations are a problem?
If the hallucinations are not making your loved one scared or anxious, you don't need to do anything. It's better not to confront people about their hallucinations. Arguing may just upset a person who has dementia. If the hallucinations are scary to your loved one, you can try to distract the person by involving him or her in a pleasant activity.

What if my loved one will not go to sleep at night?
Try one or more of the following if your loved one is having trouble sleeping:

• Try to make the person more aware of what time of day it is. Place clocks where he or she can see them.
• Keep curtains or blinds open so that he or she can tell when it is daytime and when it is nighttime.
• Limit the amount of caffeine he or she consumes.
• Try to help your loved one get some exercise every day.
• Don't let him or her take too many naps during the day.
• Make your loved one's bedroom peaceful. It is easier to sleep in a quiet room.
• At night, provide a night light or leave a dim light on. Total darkness can add to confusion.
• If your loved one has arthritis or another painful condition that interrupts his or her sleep, ask your doctor if it is okay to give your loved one medicine for pain right before bed.

What if wandering becomes a problem?
Sometimes very simple things can help with this problem. It is all right for your loved one to wander in a safe place, such as in a fenced yard. By providing a safe place, you may avoid confrontation. If this doesn't work, remind your loved one not to go out a certain door by placing a stop sign on it or putting a piece of furniture in front of it. A ribbon tied across a door can serve as a similar reminder. Hiding the doorknob by placing a strip of cloth over it may also be helpful.

An alarm system will alert you that your loved one is trying to leave a certain area. Your alarm system may just be a few empty cans tied to a string on the doorknob. You might have to place special locks on the doors, but be aware that such locks might be dangerous if a house fire occurs. Don't use this method if your loved one will be left home alone. Make sure your loved one wears a medical bracelet, in case he or she does wander away from home."

Finally, it is good for all of us to constantly remind ourselves that we are also one day going to be growing much older and would soon be facing the eventualities that could cripple us in more ways than one--that loss of memory, self esteem, dignity, independence and creeping confusion, can be very scaring. Yet we must all learn to cope and hope to forestall this possible deterioration for as long as possible, by learning to take some proactive and preventive steps...

Unfortunately, very little is known with certainty, about how we can exactly make ourselves impregnable from this mental and physical decline and decay. Perhaps decay and decline is inevitable, but we can try lessen the pain and difficulty for ourselves and our loved ones, by understanding that little bit better, the inexorable processes and dynamics that accompany our mental and physical entropy...

“I went to the woods because

I wished to live deliberately,

To front only the essential facts of life

And see if I could not learn what I had to teach

And not, when I came to die,

Discover that I had not lived.”

~Henry David Thoreau

Healing is a painful experience: Mum's home, post-CABG

Most of us doctors take it for granted that humans can and should heal rather quickly. At least we expect the human body to recover as physiology dictates, and as science predicts--logically and systematically, minus the emotional and psychological underpinnings...

As doctors, we have always had to maintain that detached feel when approaching our patients, no matter how close and comfortable some of them may have become after years of intimate encounter and trust. We empathise as deeply as we can, but try to remain as dispassionate and as objective as possible.

Although a paternalistic approach of the doctor-patient relationship has been frowned upon of late, there is some truth that a slight top-down relationship can help establish a better patient outcome in some therapeutic exercises. Of course, we have to ensure that every patient should be appropriately and sufficiently informed to the best of his/her ability to understand.

We try and maintain a professional distance and authority so that the doctor-patient relationship can be put on a better and surer footing. Many patients still accept the prerogative and trained wisdom of physicians to do the right and proper thing, i.e. to bring about a healing process.

Most times we try and project a professionalism which because of our training and expertise, we can then exude that confidence that the patient and his/her relatives can trust and believe in.

In many instances, this slightly asymmetric relationship can help build a stronger physician authority which then makes informed consent and certain medical decisions easier to arrive at. But this is not to say that, we should bully our patients into making hasty decisions for which they have cause to regret later on.

Nevertheless, this has made many of us doctors into sometimes too distant and aloof partners, from the point of view of our patients' suffering. And because of this we can be rather brusque and sometimes downright tetchy when our patients appear to be slow in accepting our recommendations; and when they do, they appear to be slow or fearful from wanting to ambulate or move/exercise too quickly especially after an operation.

We are all brought up with the belief that the quicker the efforts to return to normal activity (within reason and capacity), the more rapid and complete the recuperation process would be. And so we make it our religious duty to impose stringent rehabilitative commands that our patients do as we tell them to, so that they can improve the way we expect them to do so.

Yet very often, many of us forget that there is a body and soul out there, trying to cope with a sanctioned 'assault' on a part or parts of the body, which may be more extensively and exquisitely injured than we think.

But for most of us, even as doctors we are spared the real-life experience of the actual pain and suffering, that some of our patients go through. It is said quite correctly that we can never feel enough unless we actually experience exactly or more of the same...

It is difficult to imagine how the human body recovers, and at rather wondrous and fantastical speed at that. It has been a long while now, but recently, I have been personally privy to just such an experience.

My mum underwent coronary bypass surgery exactly 3 weeks ago at the age of nearly 77 years. That she has come out with flying colours is testimony to her tenacity and iron will to live. At this elderly age it was already a very difficult decision to make to undergo such a major surgery. As children (and worse as a doctor!), we were all very aware of the inherent unknowns associated with bypass surgery at such an age--the risks to the brain, the kidneys, the limbs, the lungs, etc...

But thank God, she not only survived it, she had a couple of complications to boot, which piled up the tension for us, as we waited with bated breath, the unfolding of her pulse-raising untoward events (significant pleural effusion requiring a midnight chest tube insertion, and re-suturing of her thigh wounds from excessive haematoma formation), en route to her final discharge from the hospital.

Here, I must acknowledge and thank the dedicated doctors and nursing staff of Pantai Medical Centre, Bangsar, KL, who had to work tirelessly and under such stress (of looking after a rather anxious and truculent colleague's mother!).

Dr. Arunachalam and Datuk Dr. Zainal Abidin Hamid (cardiac surgeon and cardiologist extraordinaire, respectively, whom I have known and worked with for some 20 years since HKL-days!), Dr. Sylvian Dass, anaesthesiologist and friend, who painstakingly ensured that her anaesthesia and sedation was just spot on, and second surgeon, Dr. Syed Mohd Adeeb, for superlative support. I know that midnight calls are tough on any doctor, but your timely and urgent interventions certainly helped smooth the way of my mother's road to recovery!

The ICU staff and ward staff of D2 were simply fabulous and attentive, despite the ceaseless distressful demands of the very ill patients under their charge. Words alone cannot express my family's gratitude for a job well-done and all the singular care you have all so selflessly extended to my mother. Thanks a million!

Having said this, I now turn to the recovery phase, which I am now fully aware can be very trying and hugely difficult for many a patient! My mother certainly tried to do as she has been 'commanded'--deep breathing exercises, arm and leg exercises, ambulation attempts, self-attempts at personal hygiene, etc.

But every one of these is especially harrowing and painful--the sternotomy site remains bone-crunchingly sore (aggravated by every breath and cough!), and the leg wounds from the venous graft harvesting, are deep cuts which continue to lacerate with each movement! And yet, we urge and exhort that these be carried out repeatedly, to supersede the pain threshold, all in the name of good rehabilitation!

That my mum has always had a higher than usual pain threshold previously, only makes me now comprehend the exquisite pain levels that she has to undergo doggedly, in her resolute will to recover as quickly as possible so as not to burden us her children, any longer than necessary!

But it is also nice to see that within a couple of weeks, her surgical scars at least outwardly has healed so finely, with only intermittent scabs to belie the healing wound; and her haematomas and extensive bruising are now receding... Her breathing still needs more consistent work, and she has to gain her confidence that her many wounds will not dehisce or open up, that her post-op exhaustion, asthenia and mood swings need to be overcome...

Most importantly, her fainting spells and chest tightness which had accompanied her earlier disease and quite incapacitated her, appear to have become things of the past, i.e. her bypass grafts must be functioning well, thank goodness! From now on, it should be all smoothly downhill; but it has been an excruciating experience, which hopefully will be replaced by fonder memories of being well and active again.

From a personal perspective, I have learnt that as doctors, we have to feel and experience more intimately, so that we can understand the legitimate fears and pain of our patients when we recommend surgery or therapeutic procedures, which may be more than has been bargained for.

Importantly, we have to always consider the back-up support of family members, who play an extraordinary role in helping physically and emotionally our more dependent and older patients recuperate. My dad, sisters and brothers, wife and children, nieces and nephews have contributed immensely towards making mum feel good again.

Also, it has renewed an uncommon bond amongst us, which has strengthened our extended family relationship and dynamics so much better--something which would have been impossible, without this crisis. Simply because, we have each of us so many personal things to do, we're too busy with our own lives, despite the fact that we still gather and meet for a few days every year.

But we often fail to connect purposefully for something more ethereal and familial, which many consider as marginal and insufficiently important--that especial relationship which telescopes the time capsules of our historically crossed paths as brothers and sisters, and parents.

I am glad we all had some fond and occasionally tacky reminiscences, singular memories that can perhaps one day fill a book of experiences for our future generations...