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?  

Violin lessons for patients with Alzheimer's Disease

We have heard of music therapy before and it involved primarily listening to music.  Now new research shows that learning to play the violin helps improve cognition in Alzheimer's patients. This is rather surprising as we have been given to understand that dementia patients will never be able to learn new things.  Besides I know for a fact that the violin is a very difficult instrument to play.  We have one at home and I have never been disciplined enough to practice everyday to play it well.  So it seems really miraculous that patients with low cognition levels can learn to play the violin and this brings about a noticeable improvement in their mental condition.  Read the full article here http://www.medscape.com/viewarticle/761572?src=mp&spon=25

8 reasons why you should go and get some Sunshine Vitamin

Vitamin D is greatly underrated perhaps because it is available for free.    Your skin can make Vitamin D when the ultra violet radiation from the sunlight touches it.    

1. Vitamin D helps improve calcium absorption, bone health and prevents osteoporosis
2. Vitamin D boosts the immune system in the body reducing infections
3. Vitamin D helps in preventing certain types of cancers
4. Vitamin D has a positive effect on diabetes, high blood pressure and obesity.  
5. Vitamin D helps prevent depression
6. Vitamin D helps in asthma
7. Vitamin D is FREE
8. I saved the most important for last.  Vitamin D improves brain health.  

Recent studies have shown that Vitamin D is important for the brain’s vasculature.  This is particularly critical for the elderly who are at risk of Vascular Dementia.   Medical research has shown evidence that Vitamin D helps clearing amyloid from the brain. (Amyloid is a protein that condenses into plaques in the brain of patients with Alzheimer's disease.)  Presently, the long term benefits of removal of amyloid from the brain and whether this might reduce the symptoms of Alzheimer’s dementia is underway.   

A recent study published in the Archives of Internal Medicine measured Vitamin D deficiency in a large number of elderly in the USA.  The findings were-
• Over 50% of those people with Vitamin D deficiency had significant cognitive impairments.
• Severely low levels of Vitamin D makes one four times more likely to develop an age-associated cognitive impairment and is a warning sign of a more severe dementia.
• Vitamin D deficiency may have other consequences upon brain health as we age; low levels of this vitamin have also been associated with an increased risk of Parkinson's disease.

One would expect that in India where we have abundant sunshine, there would be no deficiency of Vitamin D.  The reality is very different.   A research report published in the Journal of Association of Physicians India states that there is widespread prevalence of varying degrees (50- 90%) of Vitamin D deficiency in the Indian population.   Actually this is not surprising.  Think about it. 

We are indoors of the time.  When we go out we do so in cars to air-conditioned malls and gyms.   Today everyone uses sunscreen before stepping out to stay fair skinned and wears clothes that cover most of the body.

The UVB rays that help the skin make Vitamin D cannot penetrate glass or sunscreen lotions or clothes.   So you cannot get your dose of vitamin D sitting inside an air-conditioned car even if can feel the sunrays on your skin.   Even weak sunscreens (SPF=8) block your body's ability to generate vitamin D by 95%. This is how sunscreen products cause disease -by creating a critical vitamin deficiency in the body - something pharma companies will never admit. 

People with dark skin pigmentation may need 20 - 30 times as much exposure to sunlight as fair-skinned people to generate the same amount of Vitamin D.   But the high temperatures during day time and sultry humid climate are major deterrents.   We prefer to stay in the shade and cover up when we need to step out in the sun.  Also increase in the air pollution levels hampers the UVB rays thus preventing synthesis of Vitamin D in the skin.  

The foods that contain Vitamin D are oily fish, egg yolk, milk, leafy vegetables and fortified foods.  Most Indians are vegetarian and we do not have foods fortified with Vitamin D in India.  Even if we did it would be next to impossible to get the required daily dose of Vitamin D from diet alone. The only reliable way is adequate exposure to sunlight.

Some symptoms of Vitamin D deficiency are body ache, muscle pains, weakness, joint pains, fatigue, day time sleepiness, misaligned teeth and tooth decay, allergies, vision problems, and frequent fractures.  If pressing firmly on your sternum hurts (Sternum or breastbone is a long flat bone shaped like T in the chest below the neck, located in the centre of the chest) you may be suffering from chronic vitamin D deficiency right now.

Sensible exposure to natural sunlight is the simplest and easiest way to improve your health.  This is best done in the early morning or late afternoon and not in the blazing mid day sun.  The sunlight needed has to fall directly on to bare skin (through a window is not enough).  Sun exposure two to three times a week is enough to achieve healthy vitamin D levels. This is a fat soluble vitamin and can be stored by the body.  It is advised that each episode be 20-30 minutes to bare arms and face.  This is not the same as sun tanning; the skin simply needs to be exposed to sunlight.  Children and pregnant women have increased requirements.
Chronic vitamin D deficiency cannot be reversed overnight: it takes months of vitamin D supplementation and sunlight exposure to rebuild the body's bones and nervous system.  

Overenthusiastically taking Vitamin D supplements without careful monitoring of levels has potential dangers.  This could lead to hypervitaminosis D and its ill effects.   But your body will never generate too much vitamin D from sunlight exposure. Your body will self-regulate and only generate what it needs.    So do it the natural way.  Go out and get some sun on your skin.  

If your dementia patient can walk, take them out in the morning or late afternoon.  If they are unable to walk, sit them down near an open window to get their dose of Vitamin D.  Skin in the elderly produces reduced rates of Vitamin D and hence their levels need monitoring. It would be a good idea to request for a simple blood test for vitamin D on your next visit to the doctor.

Stay healthy and be happy.

ABC of the Wannabes

USA says to India:       We are the No 1 country in the world

India says to USA:       We are going to be the No 1 country in the world

USA :    We have Apple, Baseball, Citibank, Dollars and Disneyland, Ebay, Fried Chicken, Grand Canyon, Hollywood,  Justin Bieber,  Kim Kardashian,  Lincoln Memorial,  McDonalds, New York, Obama, Paris Hilton,  Right leg and the rest of Angelina Jolie, Speilberg, Trump tower,  top Universities, Vegas,  Whitehouse, X-Files,  Yada Yada Yada, Zuckerberg…..

India :      We have Apple iPhone 4s, Bollywood, Cricket, Delhi 6 , Electronic City, Facebook, 2G - 3G, Holy Cows, IITs & IIMs, Jumbo vadapav, Katrina Kaif, Lalu Yadav, Mayawati , NRIs , Opinionated TV presenters , Plenty of festivals,  Queues but no queue sanctity , Rakhi Sawant, Saas bahu serials, Taj Mahal, Unafraid traffic stuntment , Venerable swamijis, World Cup, X… , Yoga masters, Zero – we invented it!

USA:  We have a National Advisory Council on Alzheimer’s Research, Care and Services

India:  Huh?

USA:   The Advisory Council has released its formal draft on a National Alzheimer’s Plan with detailed final strategy to be issued in the next few months this year.   

India:  ?   Whatever ….. (Walks away, not taking the dementia problem seriously)

  

Fast forward to year 2025             USA                         India  

In the USA, they consider Alzheimer’s Disease is bound to reach epidemic proportions and all stake holders are sufficiently concerned over the future of their country and have worked out a plan to achieve their stated their goals as under-

1.       Prevent and effectively treat Alzheimer's disease by 2025

2.       Enhance care quality and efficiency

3.       Expand patient and family support

4.       Enhance public awareness and engagement

5.       Improve data to track progress

The common people of USA are signing a petition to the President to make the National Alzheimer’s plan a very strong one.     USA is a democracy of the people, by the people and for the people.

India is also a democracy – yes?   

What can we the common people do to push this agenda?  

I invite you to come on the discussion board 

 http://caregiverfriend.phpbb3now.com/index.php?sid=6f39db78c350bb1841a31d3954e5ac94

and to share your thoughts on this very important issue.  

Eating right can improve the health of your brain

You are what you eat.  This is not to be dismissed lightly as a truism.

Dr Terry Wahls suffers from MS (multiple sclerosis) – a disease of the brain and one that has no cure.  Sounds familiar?   Dr Wahls declining condition forced her to go back to her medical books and  read papers on all research done for diseases of the brain.  Experimenting with herself, first with supplements and then with food, she found a way to treat herself.   Her disability has decreased so much that she appears as normal as anyone without the disease and she goes around the USA giving talks to teach people what and how much to eat to have a healthy brain.

Her suggestions are not just for those with MS but for healthy people to avoid developing diseases of the brain and the body.   Her diet is not something that we should do just for our dementia patients but for ourselves also.  

We all know there are health benefits in eating fresh fruits and vegetables.  Watch this video by Dr Terry Wahls to find out how much it benefits us.    I am impressed enough to make the change from today itself. I urge you to watch this video and decide for yourself.

Reduce the burden and Increase the joy

Matru devo bhava……(Treat your mother as God) 
Pithru devo bhava……(Treat your  father  as  God)…..

Most of us follow these teachings very well.  We get so immersed in this that we start to ignore ourselves.  In the various roles we have, the role of caregiver takes centre stage, as it should, but also eclipsing all else – as it should not.   This is when caregiving starts feeling like a burden.

This happens because we often do not ask for help or accept help.  Perhaps it seems wrong to us that we have to rely on others for what we consider as our duty.  Perhaps it makes us feel incompetent that we cannot perform what we consider to be our tasks. But caregiving for a dementia patient is a very long term activity and it cannot be done by any one person alone.  You need to ask for help.

Almost everyone who has been a caregiver has been scared, angry, depressed and impatient with their patient.  Sometimes the anger is vented out on another family member or friend.   Many of us have felt resentful at times with the sacrifices we have to make because we need to care for our parents while our peers are enjoying their lives.  There are times when we have all felt anger towards the person we are caring for and blamed them for everything that is going wrong.  Then there is also guilt that we feel for feeling all this towards our parents who are in a helpless condition.   There is no cure for this disease yet and that makes us feel defeated.  

These are too many negative emotions and it can drain the happiness out of a person.  No one can carry on functioning like this for long.  The easiest way to break out of this is to ask for help from others and accept that you cannot do everything yourself.    You need to get more persons involved in the caregiving or you will experience burn-out.

Get other family members involved in the caregiving.  Make other relatives (extended family) baby-sit your patient while you take a break.  Go to the mall, go for a movie or out with friends.  This will also ensure that other relatives realise what you are dealing with on daily basis.   

Appoint a helper for the caregiving. It will take a lot of burden off your shoulders and leave you with more time to do other things.  All helpers will need to be trained by you for your particular situation.  This training can be a chore but you will find the physically demanding work reduced within a week of training.  Dont worry about the expense. Try and get one atleast for part of the day so you dont feel overwhelmed.

Do not fret that everything is not done perfectly every single day.  Give yourself a break. Sometimes it is okay if the washing is not done or you have to make do with sandwiches for dinner.  

Don’t give up on your personal time. Perhaps you enjoy a workout at the gym or you have a hobby.   Continue to pursue your interests. Only if you feel personally fulfilled can you look after others happily.   

Music can be uplifting.  When you feel angry and depressed, try not to be in that frame of mind for long.  Remember to play some music that you love – it could be classical or old film songs – a little music will make you feel lighter and will ensure that your mood changes for the better.

It will help also to remember that this caregiving is your seva to your elders.  It is considered as an offering to God and better than any puja or prayer.   With a little help from others you will find you are able to spend quality time with your patient and other family members and you can be a happier caregiver.