The Long Goodbye

      “Your father has moderately severe dementia” said the physician who had come home to assess my father. When I revealed my father’s age, he did a double take. He said “Your father must have had a phenomenal cognitive reserve and that is why he has manifested the disease so late in life.”  

      Appa did have (and still has) a phenomenal cognitive reserve. A highly educated engineer. An honest, upright, high integrity army officer. A very physically active person (unlike his two children) with no other morbidity. An anomaly in the army – a teetotaler. We irreverently refer to him as a “lime juicer.”

      Going by the list of risk factors for dementia, he had none! So where had the dementia come from. My father’s brother had developed Alzheimer’s in his seventies and had been bed ridden for six years prior to his passing. That was the only connection or so I thought.

      I personally hold the COVID pandemic responsible for tipping my father into dementia. He enjoys having people come home and regales them with stories from his army days, especially the 1971 Bangladesh war. He starts by setting the backdrop in great detail and narrates the story, taking many detours for side stories, but just when we would feel that the story will surely fall apart, he’d tie up all the loose ends and triumphantly bring the story to a very logical and interesting end. All the social interaction dried up in the three years we lost to COVID and it was probably due to this that Appa’s brain slowly started unraveling.

      One very interesting observation is that my aunt, who is just a year younger than my father, is as sharp as ever. Even today. Both she and my father have similar healthy habits. The only thing that is different is that my aunt is deeply spiritual while my father has always been a “karma yogi.” For my aunt everything begins and ends with Devi ma while for Appa everything began and ended with his job (or should I say, his calling). So does spirituality have a role in retarding cognitive decline? There are a few studies vouching for the same but robust evidence is obviously lacking.

      Incidentally, a group of nuns from a secluded monastery in Europe had pledged their bodies to science after their death. These nuns had lived an active and cognitively healthy life, dedicated to God, until they passed at a very advanced age, some even living up to a hundred years. The autopsy results were shocking – while they were cognitively absolutely alright, their brains were significantly shrunken & atrophied! I am convinced that spirituality definitely retards dementia. How can dementia thrive where the Gods reside?

      Due to the limitations of allopathy in the treatment of dementia, I called a friend of mine who practices functional medicine, wherein they try to identify and address the root cause of diseases. She told me that dementia starts 15 to 20 years before it’s actual clinical manifestation. By that token I must have already started the process! Scary thought.

      She very emphatically told me that sugar is very toxic to the brain and asked me to cut off all sugars from my father’s diet. Unfortunately, Appa is crazy about sweets. So after a few months of utter torture from my side I realized that I was really depriving him of the one thing that he loved most, after my mother. He is now happily eating his favorite assortment of sweets and chocolates. On a daily basis, that too.

      All things considered, I’d like to say that Appa is still a very high performing person with dementia. He recognizes all of us. He is lucid most of the time. He is very insightful and displays concern for everyone around him. He is always very courteous and respectful, like an army man. He can still weave magic with his wartime stories. All this makes his departures from reality and his mood changes, bearable.

      As for me, I am very much at peace from the time I gave up trying to “get Appa back.” I had found it very difficult to accept the fact that my highly intelligent father was actually beginning to lose his mind. I do get irritated and upset with him. I am (forgive me!) mean to him at times. I do lose my cool from time to time but once I started to accept many of the changes in his personality as part of a process that all of us have to go through – a gradual wearing out of all our organs especially the brain, I became less agitated and worried. Everything, including our body and its organs, comes with a certain limited warranty. I keep thinking of the fantastic life that he has had thus far and feel that all of it is utter grace!

      In this context, I remember a story. Dr. Ranavat, an Orthopaedic surgeon, was flown in from the United States of America to do a knee replacement for our then prime minister, Mr. Atal Bihari Vajpayee. Post the surgery a scribe asked him whether the prime minister will be completely alright. Dr. Ranavat remarked – “I have done my best but what God has designed no one can improve upon.” This applies to our brain too, I guess.

      But the basic question is – “Why is it that we seem to find increasing numbers of dementia patients of late? How come our grandfathers and grandmothers did so well cognitively?”

      The incidence of dementia is rising worldwide probably because more people live up to old age now and we are able to identify it much earlier nowadays. Also, we are paying the price for a very unhealthy and unwholesome lifestyle. The risk factors for dementia are – less education, hypertension, hearing impairment, smoking, obesity, depression, physical inactivity, diabetes, low social contact, excessive alcohol consumption, traumatic brain injury and air pollution. Modifying the twelve risk factors might prevent or delay up to 40% of dementias.

     Statistics are staggering – two thirds of the 50 million people with dementia worldwide, live in low and middle income group countries. What is amazing is that the fastest growing group in the high income countries are those aged above 90 years. 

      For all of us, here are a few steps to attempt to prevent/ reduce the risk for dementia:

1. Treat hypertension vigorously – Keep systolic blood pressure less than 130 mm Hg especially in midlife. Cut out the pickles, chivda, pappads, cheese and dried, salted fish folks.
2. Lose weight – Jog, yoga or zumba, do something to keep the “tyres” away.
3. Reduce obesity and as a corollary, diabetes – Diabetics may start showing signs of dementia much earlier than their non diabetic peers. It is a bad disease to have but if you have it, see that it is well controlled.
4. Use hearing aids for hearing loss – My father could not tolerate the aids for more than half an hour and he resisted all attempts to get him new ones!
5. Avoid drinking more than 21 units of alcohol per week – Loosely translated – 7 “chhota” pegs per day for all the tipplers out there.
6. Prevent head trauma for all high risk people – Especially the ones with imbalance/ unsteadiness.
7. Stop smoking – Passive smoking may also play a role so at least quit smoking indoors.
8. Sustain midlife and, if possible, late life physical activity – Get off the couch, inactivate your Netflix connection, reduce screen time (now I am making enemies!).
9. Have a regular routine – Bath, walk/jog, work, relaxation, exercise/ yoga, meditation, sleep (and other things besides).
10. Get a good nights sleep – Like Gurudev says don’t go to bed with your mobile and don’t reach for it as soon as you are up. Sleep is vital for optimum functioning of the brain. Early to bed and early to rise is a good adage. Getting 8 hours of sleep after going to sleep at 2 AM is NOT healthy for the brain!
11. Cut down on refined, processed foods – What comes out of a box/ can must have some toxic ingredients.
12. Keep working for as long as you can – It is not the hours of work put in per day that matter but how many years you work totally that counts.
13. Engage your brain as much as you can – Learn new skills for that will light up new areas in your brain. Appa has an Assamese helper and is now constrained to speak with him in Hindi (something he used to do decades ago in the army).
14. Engage with friends socially – Living like a recluse is not very good for the average human brain.
15. Avoid pollution – Delhiites get out of there! But where does one go?
16. Keep meditating and maintain your connectedness to Guru and God.

      How can we help our parents and other older members of our family?

      Give loads of love to your parents while they are still in a state of “normalcy” and continue to give them plenty of your time, infinite amounts of patience and lots of love even after they start losing their mind for it is the hardest thing watching someone you love forget that they love you. Do not lose out on communicating with them daily.

      Communication with persons suffering with dementia is in itself an art. I must confess that I have breached every one of the following golden rules! I am still a “work in progress.”

• Speak clearly and in short sentences.
• Make eye contact.
• Give them time to respond.
• Do not patronize or ridicule them.
• Acknowledge what they say even if it is not an answer to your query.
• Give them simple choices so as not to confuse them.
• Try not to interrupt them for that will interrupt the flow of thoughts in their brain.
• Give them your full and undivided attention.
• Minimize distractions like television, mobiles etc. during your conversation.

      Let us try and do all of the above for the people who have given us life in every sense of the word – our parents, for I’m sure none of us want to be reminded that dementia is random, progressive and increasingly common.

      One of the most poignant quotes on dementia is by Nancy Reagan when her husband Ronald Reagan, the former president of the United States of America, was ravaged by the disease. She called it “the long, long goodbye.” She said, and I quote “When you come right down to it, you’re in it alone, and there’s nothing that anybody can do for you. So, it’s lonely.” This happens to the spouse of a person with dementia. We need to be mindful of this fact too.

      I’d like to sign off with this lovely quote by Maya Angelou – “I’ve learned that people will forget what you said. People will forget what you did. But people will never forget how you made them feel.” Lets make our older folks feel special.

P.S: For those of you who want to read about dementia, I’d recommend reading the WHO Bulletin on Dementia, September 2022 and Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. I’ve quoted mainly from these references.

Disclaimer: I am by no means an authority on dementia if I have somehow conveyed this in my post. Just wanted to reach out and share some information with all of you.

Picture credit: Alamy stock photo

My pranams at the lotus feet of Gurudev 🙏.