A singular act of Goodness

Day in and day out we hear about corruption moral and financial, of black hearts filled with hatred and intolerance.  We hear that the good are meek and overcome by the evil in this world and therefore we one can only expect misery and frustration in the future. 

This is not entirely true.   There are an equal number of good souls who do acts of kindness that keeps the world on even keel. Stories such as this will help restore one’s faith in humanity.  

An autorickshaw driver in Bangalore was instrumental in returning a wandering Alzheimer’s patient safely to his family.   The old man he had picked up as a fare could not tell him his destination; he could only remember his name and even had no ID on him.  Instead of asking the old man to get off  this autorickshaw driver decided to forego all his fares for the day and kept driving around the town to jog the old man’s memory. The police did not help at all so he took the old man home and gave him dinner and a place to rest.  Luckily he spotted the missing advertisement placed by the old man’s family in a local newspaper and the story has a happy ending.   Read the entire report here.

Wandering is perhaps the most worrying aspect of dementia.   One cannot be too careful about this.  Medical assessment of wandering as a risk is often neglected.  Doctors rarely warn families and caregivers about the behaviours and changes to expect. Also if families have not seen such behaviour in the past they may think that they don’t have a problem. But it can happen all too suddenly when the family of the patient is least prepared for such an eventuality.

Usually when children get lost, they may cry and draw attention to themselves. They may be able to perhaps remember their home address or parents’ phone numbers.  It is also easy know if a child is lost or not and thus could receive prompt help in being restored to its guardians.   

Sadly, when a senior citizen with dementia gets lost, it may not be easy to realise that they are lost.  We usually don’t expect adults to get lost.   Secondly, if the person is mumbling and incomprehensible, not many would spare the time to find out their problem and help them.   Also the patients themselves will not ask for help and they may not even respond if you call out to them.   

In any noisy congested town or city in India, if a patient wanders away, they may easily get dehydrated or may get involved in accidents. They may get jostled in crowds and may get helped by strangers into buses and trains unwittingly to destinations they do not want to go.  Thus they may end up very far from where they started off in a very short time.   Add to this the general apathy towards others and everyone minding just their own business, the patient may soon end up destitute.  There are too many sad stories of patients who wandered off being either never found or who died as a result of injuries and dehydration.  So the key to prevent wandering is by taking precautions against it.  

Caregivers and patients' families have to prepare for this aspect of the disease.    Here is a previous post on who is at risk and how to prepare for it.  Some tips to prevent wandering can be found here https://sites.google.com/site/caregiversfriendmumbai/tips-for-you

Also available now are some gadgets with GPS tracking in watches, lockets, bracelets and shoes to keep track of persons at risk of wandering.    Though these are not widely available in India as yet, there are some companies introducing these products in the Indian market.  You can look these up on the internet.

Wandering may still happen despite all precautions.  Read tips on searching for a missing person with dementia.    Take the help of social networking sites to look for the missing person.  You could write to http://www.facebook.com/#!/groups/missingseniorcitizenalert/ with all details and a recent photo and it will be shared widely.  

If despite everything, if wandering does happen and a patient goes missing, I pray that they meet a good soul like the autorickshaw driver in Bangalore and returned home safe.

Planting Apple Trees

I would like to remind you today of fable by Leo Tolstoy.

There was once an old man working in a field planting apple trees. He dug the hole, planted the sapling in the ground, fenced it with broken branches and went on and dug another hole to plant another sapling.   As the old man was working, two young boys came along and in the way of their age, teasingly said, "Hey, old man. What are you doing?"  The old man replied, “I'm planting apple trees."

The boys laughed and said, "Yeah, we see that old man, you are wasting your time. You will be dead yourself before the first apple is ripe." They both laughed at their cleverness. The old man thought for a moment and said, "Yes, you are right. I will probably never live to see any fruit. But I am not planting these trees for myself. I am planting hope.  I am planting these trees for the children and their children. Others will eat the fruit and I hope they will think of me.”

It is 21st September again.  The day to remember those who cannot remember.   This day comes around every year, but some years ago, this day meant nothing special. Now it has become a target date of sorts.  I would venture to call it the ‘year ending date’ for all things dementia related.   The date to take stock of the past year and to read the map for the year ahead.

Caregivers and individual volunteers in the field of Dementia care recognising the huge amount work needed in this field are working constantly, consistently and tirelessly to

·         increase awareness through awareness walks, through media and net working,

·         improve available information, collate data and keep it updated

·         generate invaluable educational aids and tool kits for caregivers in local languages

·         provide training for dementia care assistants

·         create platforms for information sharing and interaction for caregivers through use of social networking media

There are many good people working out there, in their own way planting apple fields.  Some people I have only read about, some  I have spoken to over the phone, some I have not even met, just seen the remarkable amount of work they have been able to do in the short space of just one year.   

With greatest respect, I wish to convey my gratitude to Swapna Kishore, Hendi Lingiah, Sailesh Mishra and Swati Ingole for the apple trees that they have planted in India in this last one year.   

Results of a new research seem encouraging for vascular dementia memory problems

It appears that a supplement sold over the counter in the US may help with cognitive decline in patients of vascular dementia.  Though still in priliminary stages, the research so far seems encouraging.  As reported in Medscape, read the entire article here.

A higher level of total daily physical activity is associated with a reduced risk of AD.

This is the conclusion reached by Buchman AS; Boyle PA; Yu L; Shah RC; Wilson RS; Bennett DA at Rush Alzheimer’s Disease Center, Rush University Medical Center, Chicago, IL, USA.

They studied the link between total daily physical activity and incidence of Alzheimer’s disease (AD).  They also tested the hypothesis that an objective measure of total daily physical activity predicts incident AD and cognitive decline.   The study covered 716 seniors for about 4 years.   The researchers found that the slow movers in the sample group who were in the bottom 10% of activity level had higher likelihood of developing AD as compared to the top 10% of exercisers.  

Their study suggests that exercise and activity matters and even daily chores like cleaning, gardening and cooking seemed to help. 

Link between urinary tract infection and confusion in the elderly

Urinary tract infections can cause a sudden increase in confusion in an older person with dementia.  I didn't know this.  Did you?  Click  here  to read the full article.

A year gone by.......

21^st June last year was the last day of my father’s life.  Sometimes it seems like it was just yesterday, at other times it feels like a dream from which I will soon wake up.     It still feels unreal but all the mundane activities of that day are still clearly etched in my memory.   How suddenly, a routine kind of day changed into something that could never be put back ever.

In this last one year, my sister and I have relived every moment of our memories.   It is a good thing that I have my sister to share this with because our memories go way back to the time we started to remember things.    We have a lot of happy memories and some not so happy ones too.   In every memory, the one thing that stands out is what a fine person my Appa was.  

His life was a hard one to begin with having lost both his parents by the time he was ten.  He put himself through school and college while having to work for his living.  He went to evening college and completed a B.A in economics and then LLB.  He was totally a self made man. 

He was a kind husband who shared the housework and regularly helped in the kitchen.   He always prepared the morning coffee before my mother woke up.   Sometimes he even cooked on Sundays and we spoilt brats always complained that he couldn’t cook as well as mother.

He was a very loving father.  My mother being a school teacher was very strict with us regarding study time and would not permit any talking until the homework and revisions were done.     Appa would give us incentives that we could goof-off with him after we finished the work.  As kids, we never felt that Appa was an adult who we had to be scared of.  He was just our friend.    He taught us to play chess and other board games.  He bought us books and read to us.  He knew how to fix things and we were his helpers.  He taught me everything from papier-mâché sculpting to double entry book-keeping.    

He was a favourite uncle to my cousins.  Kids loved him for his gentle disposition and his own friends liked him well for his helpful nature.    

After his retirement, Appa’s behaviour changed.  He became very irritable, forgetful and argumentative.  All this change was not easy to take and we did berate him often.   Only after a couple of years of this did we get a diagnosis and know that the reason for the change was not him but the dementia.  

Even through the dementia, there were days when he could think very clearly.   We fondly remember every such day.    On other days he would try and fudge his answers to pretend nothing was wrong with him.   He always had us in splits with his responses and logic.   When we laughed he would laugh too as if he had meant it to be funny.  Maybe he did too!

We miss Appa dearly and wish we had been given some more time with him.    There were days when the caregiving was exhausting and frustrating.  Now I know I would willingly take some more of those days just to have him back for at least a while.

In the last months of his life he suffered a lot of physical pain from various illnesses. But he never complained.  Instead he used to try and console us by patting our arm and nodding that it was okay.  His passing was perhaps a release from that suffering.    

I wonder sometimes why such a kind soul had to undergo so much pain.   All I can do now is ask for forgiveness for the things that I did not do right and pray that he is finally at peace.  

A diagnosis of dementia

The recent television episode Satyameva Jayate by popular movie star Aamir Khan on the dishonest practitioners in the medical profession reminded me how vulnerable we all are with our patients.

Most new caregivers newly starting their role of caregiving are also unfamiliar with the illness of their loved one. Very little is known about dementia in India.  Luckily the recent explosion in the use of social networks is bringing together those in need of information with those who possess and willingly share this knowledge. Check out this Facebook group. The Indian population in general looks upon the medical fraternity with awe and is very thankful for a few minutes of consultation time the specialists give them.    While this is not a bad thing, the caregivers have to educate themselves to understand the service they are getting is what they are seeking and paying for.   

Talking to most caregivers, I realise that doctors are not providing a complete check up before handing out a diagnosis of dementia.  As per medicinenet.com the following would be required to arrive at a complete diagnosis.

1.       Patient history   -  to compare normal aging and dementia related symptoms the caregiver is the best person to provide this information

2.       Physical examination – to rule out other diseases/disorders that can overlap or medication that may be causing dementia like symptoms

3.       Neurological evaluations – to look at balance,  reflexes, sensory functions

4.       Laboratory tests – blood tests, urine analysis, toxicology tests  etc to rule out treatable causes of the dementia symptoms

5.       Cognitive and neuropsychological tests – language skills, problem solving ability, other abilities required to perform tasks of daily living.  A Mini-Mental State Exam (MMSE) assesses cognitive skills in persons suspected with dementia. 

6.       Brain scans like CT and MRI can confirm the causes of the dementia symptoms and whether they are treatable.

7.       Psychiatric evaluation – to determine if the person is suffering from depression or other psychiatric disorder that also has dementia like symptoms

In my own experience, the neurologist we consulted had an overflowing waiting area and each person was allotted few minutes.  So we had to talk very fast battling the constant interruptions for the doctor’s attention.  The physical exam and neurological evaluation was cursory.  Cognitive and neuropsychological tests were not administered.  The doctor just asked us to get an MRI.  When the MRI was taken to him, he barely looked at all the plates.  Just wrote out Binswanger’s Disesase, Parkinson symptoms, Alzheimer’s disease and handed out a long list of medicines to be taken.   There was no explanation on diagnosis, treatment and prognosis.

Most others have similar experiences I believe.  I was recently told by one caregiver that their patient had been diagnosed with Lewy Body dementia by a psychiatrist based on verbal history of the patient’s behaviour and that too without even seeing the patient in person!  And the doctor has already prescribed medicines.   When I voiced my concerns, the caregiver also told me that he has asked for blood tests and MRI but they have yet to get these done and that the doctor is not just a psychiatrist but a neuro-psychiatrist!

Surely our medical fraternity can and should do better than this.   If we continue to accept lower standards of service, that is what we will continue to get.   Do we accept lower standards from our car mechanic, cable operator or mobile provider?  Then why do we silently accept lower standards in more important matters of health and perhaps even life and death?