Of Shopping and Delusions

Photo: www.savemaxwholesale.com

One afternoon late last week, Sanjiv and I decided to do Anna's grocery shopping at Savemax.  Dushera was over and Karva Chauth many days away, so it seemed a good time to head out, given Delhi's now legendary traffic jams. But we were mistaken. Grossly mistaken. The traffic jam was so bad that it took us an hour to take a chakkar and return to our house.

So I decided to just order everything that Anna needs from BigBasket.  I had never done a full month's grocery shopping online, so this was a first for me.  

Photo: http://www.bigbasket.com

The next morning, BigBasket delivered groceries 30 mins ahead of schedule. I asked Anna if he wanted to see how the online ordered grocery delivery happened. He immediately said, "Yes", tho' he normally napped after breakfast. He loves grocery shopping. Anna sat at the dining table as I crosschecked the delivery, one item at a time, over the next 20 mins.

Me (pointing to the heaps of grocery packets on the floor and coffee table): Anna, how did you like the grocery delivery?

Anna does not respond. He is frowning as he looks at the groceries.

Me: Anna, now we have all that you need for the next 30 days.

Photo: The Time Of India

Anna: I hope we are not spending more than we can afford.

Me: No Anna. I've only bought the things you need for a month.

Anna still has a frown on his face. He just starts to look sleepy.

Me: Anna, will you nap now? I'll put away the groceries.

We take Anna to his bedroom and he falls asleep as soon as his head hits the pillow.

That evening Anna is still looking worried.  The attendant and housekeeper tell me that he has been agitated all day. "It's going to be another one of those days", I think.

Me: Hi, Anna. How are you?

No answer.

Me: Anna, what did you do today?

Again no answer. We sit in silence for some time. I notice that Anna is looking at me with a piercing sideways glance.

Photo: www.compareforexbrokers.com.au

Me: Anna, what is it? What are you thinking?

Anna (after a long pause): Sangeeta, you have to tell me the truth.

Me: Yes, of course, Anna.

Anna: I have been asking to see my accounts for months. You haven't shown it to me. What are you hiding?

Me: Anna, whenever you ask to see your passbooks, I show them to you. You have forgotten.

Anna: What are you hiding from me? Are you taking away money?

Me: No, Anna. I am not hiding anything from you. I will bring my laptop tomorrow and how you all your (bank) accounts.

Anna: How are you spending so much?

Me: I am not spending much, Anna. We are spending on only essentials.

Anna: You don't have an income. So where is the money coming from?

Photo: http://www.spectator.co.uk

Me: Anna, we are spending only on what you need. And from your money.

Anna: If you are taking money from the company then it should be in proportion to your stake.

Me (confused): Anna, what company? What stake?

Anna: Show me that you are taking only the money that is in line with your stake. If you take too much, I will be destitute and on the streets.

This goes on for nearly an hour. I am unable to convince my father that I am not spending his money, not stealing from him.

This is the first time I have been a part of Anna's delusions. How frightening it must be for him to believe that his family is cheating him.

It just makes me sad.

Anna's Mind Time Travels At The Speed Of Sound

Anna's been home for 12 days, when he spikes a fever (101° F) and his congested chest breathing and coughing starts up again. The symptoms are similar to the symptoms that landed him in hospital last time. So I call the doctor who listens to me patiently and prescribes medication for the weekend. I am told to bring Anna to the hospital on Monday. It takes two hours at the hospital to find out that Anna's chest is clear but he has an infection.

Anna has little recollection of his stay in hospital and seems more disoriented and forgetful than normal. This is common with Dementia patients - physical illness negatively impacts mental acuity. I have dealt with this before and think I am ready for any disorientation, delusion, or hallucination to follow.

I am wrong.

I drop Anna at home at 1:30pm. I have lunch and just about sit down to relax when the phone rings. The attendant tells me that Anna is agitated and refusing to eat lunch. I ask him to put Anna on the phone and spend 40 mins with him on the topic of money.  From "all my money is lost" to "I have no money here" to "what happened to my money" to "I am a pauper". I patiently explain to him that his money is in the bank, that no money is lost, that I manage his money, to ask me if he needs money, to trust me.

He still refuses to eat unless I show him where the money is! I tell him that I will show him his passbooks when I see him later. So I gather my laptop and hoof it over to his flat after a nap (I so needed a nap!)

Anna: Bandiya-Amma? (So you've come)

Me: Yes Anna.

Anna's staff tell me that he had custard 'n banana for lunch. Milk, sugar, fruit - good calories as far as I am concerned. Not really lunch as far as Anna is concerned.

Photo: The Times Of India

Anna (very upset): Sangeeta, I have lost all my money!

Me: What money, Anna?

Anna: Money that was in the house.

Me: Anna, household spending money is with Tairas.

Anna: I need money for my expenses too.

Me: Yes Anna. I have that money. I manage it for you.

Anna: Where is the money?

Me: Anna, the money is in the bank. I take it out from the ATM when you need it.

Anna: Where?

I soon realise that Anna does not understand the concept of banking. So I explain basic banking and how we can withdraw deposited money from an ATM machine. He is somewhere in his childhood where there are no banks and definitely no ATMs.

Anna: Now I understand why Padu says he carries no money. He uses that machine (referring to an ATM). Anna's younger brother, K V Padmanabhan, passed away in April 2009. Anna thinks Padukaka is still alive.

Me: Yes, Anna. He uses an ATM.

Anna: So have we done the division.

Me: Division of what, Anna?

Anna: Amma's things. Are Krishna and Padu here?

My grandmother, Ananthalakshmi

For a couple of seconds, I think he is talking about my mother. He isn't. He is talking about his mother and the time just after her death in 1984.

Me: Yes Anna. What do you want with Krishna and Padu?

Anna: Has Amma's jewellery been divided? Are they happy?

Me: Yes, Anna. My grandmother probably had only one chain and nose ring, & one pair of earrings and bangles when she died.

Anna: Do I have money in the bank?

Me: Yes Anna.

Anna: Will it be at least Rs. 3,000/-?   He says this in a tone that implies that Rs. 3,000/- is a very healthy bank balance.

Me: Yes Anna. I don't want to confuse him with real numbers that are healthier.

Anna: Oh OK! That is good!

Me: Anna, are you feeling calmer now?

Anna: I need some money to spend.

Me (showing him the money in his wallet): Anna, you have Rs 570/- in your wallet for spending.

Anna: That is not too much money.

Me: Anna, the rest of the money is in the bank.

Anna (after a long period of silence): I wanted to ask you all this before now, but you had told us not to discuss money when other people are around. There are always people around.

My Mother, Sarala

Yes, I had. My parents would discuss money matters in rented taxis all the time. I had to sit them down and explain to them why this was dangerous. I literally forbade them from talking about money unless they were alone at home!

Me: Anna, you remember that!?

Anna: Yes, you just told us. "Us" is my mother and him. I had probably told them this the early 2000s. My mother passed away in 2011.

Anna: What is my net worth?

Me (not sure what time period he is in and what an appropriate number is): How much do you think it should be, Anna?

Anna quotes a figure that is a few lakhs. I agree.

Anna: What about the safety deposit box?

Me (after I tell him where it is): Why do you want your safety deposit box?

Anna: Amma's jewellery is there. But, it should be empty now.

Me: Yes Anna. Remember after Amma died (in 2011), I cleaned out the box and divided all her jewellery between the children? There is nothing there now.

Anna smiles at this: Good.

This goes on for hours. The theme is money but the time frame moves years, forwards and backwards. Seamlessly. Constantly.

I wonder who he thinks I am. Not Sangeeta, as I do not exist in all the time periods in his mind.

I am really exhausted at the end of my visit and so happy he decides to nap before dinner.

Dealing with Distress

It’s been a crazy 3 weeks. It’s been weird..... hmm..... no odd....... no…... I think it has been more disconcerting than anything else.

Anna has been more “out-of-sorts” than "present". In an hour-long conversation, he can be disoriented, lucid, witty, depressed, and worried. Responding to him takes the mickey out of me. I feel like I have been thru’ a wringer.  Here is an example.

Distress by Moshfegh Rakhsha

Yesterday evening, I wait at the dining table for Anna to come out of his room. He walks out and when I look up, my heart sinks. He is frowning and looking very troubled.

Me (concerned): “Anna, what’s the matter?”

He looks at me but does not see me.

Me (raising my voice): “Anna?!”

Now I can see his eyes focus, there is a glimmer of recognition.

Me: “Anna, what’s the matter?”

Anna (very distressed): “We have to go to the hospital immediately!”

Me (wondering if he is feeling really unwell): “What happened? Did you have another loose motion?”

Anna (his voice goes up a notch in distress): “Mamta has broken her foot and we have to go to the hospital.”

Mamta is my younger sister who lives in Bethesda.

Me (worried ‘coz I think that something has really happened to Mamta): “Anna how do you know that Mamta has broken her foot? Did she call you?”

Anna: “No. Vikram told me.”

Vikram is my brother who lives in Westboro. Now I am really worried. It’s got to be serious if Vikram called to tell Anna.

Me: “Vikram called to tell you that Mamta has broken her foot? When?”

Anna: “Vikram told me just now. A few minutes ago.”

Anna (looking around for Vikram): “We have to go to the hospital right now. Has the car come?”

It now dawns on me that Anna may be imagining this entire exchange. I am not sure. His distress is real. Tho’ my brother is not in the house, Vikram could have called Anna. I am more than a little frazzled, and don’t realise that Vikram would call me if there was something serious vs call Anna.

I check with the attendant if Anna has had any calls from Vikram or Mamta. He tells me that Anna has not. So now I know what to do. Calm him down without contradicting him.

Me: “Anna, Mamta is in Abidjan, Cote d'Ivoire. The Ivory Coast. In Africa. ”

Anna looks at me with an expression that says, “What’s that got to do with her breaking her foot, dummy?”

Me: “Anna, you are in Sheikh Sarai. In Delhi.”

Anna’s expression does not change.

Me: “Anna, we can’t go to a hospital in Abidjan. It’s in Ivory Coast. In Africa. We are in India”

I have to go thru’ this sequence of comments a couple of times till he says “Ivory Coast and India are on two separate continents.” Finally! He gets it!! 

Or so I think.

Anna: “Tell Mamta to go to any Government Hospital.” Pause. “They will treat her.” Pause. “We need to go to the Orthopaedics Department of the Hospital with my CGHS card.”

How old does he think Mamta is? How old does he think he is?

Oh! And tho’ India and Ivory Coast are on two separate continents (a fact he remembers), it has no bearing on his reality where he needs to go to his daughter who has broken her foot.

We spend another 15 minutes, going thru his reality that has Vikram in the flat, delivering the news that Mamta has broken her foot and is in hospital (somewhere where Anna can visit). A hospital to which we need to go to immediately. Post-haste!  That we have to carry his CGHS card so that she gets CGHS benefits.

I finally decide to send Mamta a SKYPE message to call Anna as he thinks that she has broken her foot and is distressed.

Me: “Anna, I have sent Mamta a SKYPE message to call you to tell you that she is fine.”

Anna (his frown is disappearing slowly): “OK.” Pause. “You should also send a message to The World Bank to tell them that she has broken her foot.”

Oh dear me!  Here we go again.

Anna: “Tell them that it could be a broken bone or a torn ligament.”

Me: “Anna, that is a job for the hospital and not The Bank.”

Anna: “You never know with a hospital in Africa. Tell The Bank. They will take care of it.”

I am sure they will, Dad!! Your daughter is a queen!!

But, I decide not to respond on this. And we go thru' this sequence of "tell The World Bank" for another 5 minutes.  

I finally just pretend to type something on my phone, and tell him that I have sent a message to The Bank too.

Then we spend another 10 minutes on what we can do in Africa!

I finally convince him that we should leave The Bank in Africa to do what they should. That we cannot do anything. That I have sent Mamta a SKYPE message to call him. So all he has to do is wait patiently. This calms him. Clearly he has great faith in "The Bank in Africa"!

I hear Sister Francis's voice in my head saying, "You will burn in hell if you lie to you parents!!"  

But that is some time away, I hope.  I need to resolve the current burning issue. One of the things that has helped in the past is to take him out for a walk or a drive. It helps him when he is confused or has delusions or has hallucinations. 

Me: “Anna, do you want to take a walk?”

Anna: “No. Mamta is in the hospital. We can’t go for a walk. She will call.”

Me: “Anna, I have SKYPE on my phone and I will carry it with me. So when she calls, we can take it on the road.”

Finally, Anna says “OK.”

And off we go....

My sister has never broken her foot.

On World Alzheimer’s Day - Take Care of Yourself, Fellow Caregivers!

My father waits patiently
to meet a doctor at Apollo, Delhi.

In India, most children fall into the natural role of becoming caregivers for their elderly parents or parents-in-law.  More often than not, as women tend not to work, the role of care-giving falls on the women of the household, normally a daughter or daughter-in-law.

Whereas looking after any patient can be stressful, research shows us that looking after a patient with Alzheimer’s or Dementia is the most stressful.  It is stressful to manage a parent whose short term memory is bad or completely lost, with a parent who gets frustrated and angry with their inability to remember even basic things, with a parent who seems to be physically OK but mentally not there, a parent who is disoriented, or one who has delusions or hallucinations.

I look after my father who has Parkinson’s disease and Dementia, among other things.  So in addition to all the Dementia related issues, I also need to deal with the physical disability that Parkinson’s causes.  

At a Vyaktitva session on Human Performance Improvement

I worked for over 29 years in corporate India, managing large, globally distributed teams, have survived bloody mergers, acquisitions, divestitures, and it pales in comparison to managing my sick father’s home and health needs.  I finally, gave up working a full time job, and do some consulting, but a major chunk of my time and effort goes into managing my father’s home and health.  And that is more than a full time job.

Even now, when I am asked what I do, my standard, reflex-response is “Nothing”.  And that is a big lie.  I do a hell of a lot of work.  I am just not paid for it.  The work does not have a time slot in a day or week or month. There are no appraisals and no increments.  There are no awards, rewards, and recognition.

I fall asleep, out of sheer exhaustion,
in the middle of a conversation,
at a friend's place 

Unfortunately, with all the activities and mental space that my father’s care takes up, I forgot about myself, the caregiver.  I became, what I thought was, the only person who could take care of him.  The person solely responsible for him, 24 hours a day. Literally, 24 hours a day.  Always on call, even in the middle of the night or the hour before dawn. Even when I was at dinner or at the movies.  I carried my mobile phone to the bathroom.  I spent less time at the parlor.  I can’t remember when I last had a manicure or pedicure or a head massage.  My conversations revolved around my father, what he was doing, what he wanted, etc. and not about me, what I was doing, or thinking or what I wanted.

But caregivers, like me, need to be cared for too!  If you are a caregiver, then let me tell you, NO ONE is going to take care of you.  I have realized that I need to take care of myself too.  I need to demand care for myself and from those around me.  I don’t do this well myself.  It is a struggle.  I am trying. 

So here is my list of care giving that I believe all caregivers need for themselves:

•  Give up the guilt: I don’t know why I feel guilty.  I am doing a lot.  I am doing things to the best of my ability.  My father is happy (so he says).  Yet I feel guilty.  Guilty that I am not doing more, that my father gets depressed, that his health is failing. I have to consciously keep telling myself not to feel guilty.  I have to be realistic about what I really can and can not do.
•  Don’t over-research the disease and prognosis:  This is a tough one.  I need to research my father’s illness so that I can understand and deal with his symptoms.  But the prognosis of his diseases frightens me. I don’t know what I am going to do if and when my father reaches the end-of-life stage.  Can I watch him slowly starve to death, or lose his ability to breathe?   I don’t know.  What I do know is that I don’t want to.
•  Take time off: Find someone - an uncle or aunt, a cousin, a brother or sister and ask them to look after the Alzheimer’s / Dementia patient parent for a couple of weeks at a stretch, and as often as you can get them to give you a break.  And yes, a couple of weeks. A couple of days are not enough.  You need to cut off completely from care-giving responsibilities to really unwind.  Go away in these two weeks.  Don’t call.  Don’t think about the patient.  I have not done this myself till now.  Starting tomorrow, I am going to take time off for 10 days!
• Find or rekindle a hobby:  If you already have a hobby – reading, music, painting, photography, biking or anything that you enjoy, then rekindle your interest.  I used to read 35-45 books in a year.  Since January this year, I have read 1.5 books.  I have lost something I loved to do.  Reading a book and going to different lands, learning new things, having new adventures.  I have lost all that and I recognize I have done this to myself.  Now I am slowly hobbling towards rekindling my hobby of reading.
• Do something artistic: I wanted to write. There were earlier attempts, but they all fizzled out for various reasons. Then I got great advice from my friend Justin, “Write for the pleasure of writing.  If something comes of it, then consider it a bonus.” And I did write. Then I created a blog. Then the blog posts got picked up by people. Then I got commissioned to write articles. WOW, what a feeling it is!
• Learn something new: I want to learn dancing. Perhaps even belly dancing.  I’ve looked for dancing schools nearby but haven’t really found any good ones and have not yet signed up.  What’s holding me back?  Well, wondering if I will be able to keep up with the schedule of dance classes with my consulting work and care-giving responsibilities. 
• Have THE CONVERSATION with the patient parent: This is the conversation on what our parent would want in terms of end-of-life care and/or medical intervention when their illness progresses to a stage where we can no longer take care of them ourselves. I have agonized over this conversation for over a year. The one time that I had a conversation with my father on the medical intervention he is OK with, and with his doctor on what we can do, there was a sense of relief. I have not had the complete conversation.  But I am working my way towards it.
• Laugh a lot.  Laugh out loud.  I find that when I laugh with a friend / family member, or laugh when I read a joke on WhatsApp or Facebook, I feel better.  But there are times when I am out with friends who are all having a good time and laughing, and I feel hollow.  It depresses me. But if I can find something to laugh about, then I laugh, no holds barred. The effect of laughing may last for a few minutes or for a few hours. However long the feeling lasts, it is worth it.
• Exercise: I am personally not great at this.  I walk 6 kms in a little less than an hour, 2-3 times a week.  Nothing great at all.  Not enough, according to most wellness advocate’s advice.  But, it is better than nothing.  And the days I walk, I feel good.  When do I get the time?  In summer, I wake up at 4:45am and hit the park at 5:30am.  What will I do in winter? Well, walk in the early evening, I think.   

This is not a complete list.  And I am not an expert on helping caregivers take care of themselves. I just hope that this post with help start a dialogue between caregivers so that we can help each other.

First published in The Quint on 21 Sept 2015

Our Parents Need Time Too. Indian Companies, are you Listening?

http://news.bbc.co.uk

I smile as I read the recent news of companies like Microsoft, Netflix and Adobe, instituting inclusive (and what to most Indians will look like very benevolent) leave policies for new parents.  

Unlimited / Generous Paternity Leave Announced

These companies have recognized that there is a need for both parents, male and female, to take time off from work when they have a new baby.  Or adopt one.  Or become a foster parent.  They recognize that to retain highly valued talent, they need to help them tide over the critical 1^st year of a baby by being very generous with the leave that they can avail.  And they have made these policies inclusive by enabling men to take time off when they have a new baby in the family. 

There are of course, Indian companies or subsidiaries of MNCs who have paternity leave that range from a pathetic 2 days to a couple of weeks.  But the companies that are listed above have taken this to another level. 

And this makes me smile.  

Finally, diversity is not all about exclusive programs for women, but inclusive programs (albeit skewed more towards women).  Will this policy attract and retain good people? On the face of it, yes. And please, do give them a chance. I believe that it will work and it is something to celebrate.

Paternity Leave is great.  But what about Elder Care Leave?

July 2015: Anna sleeps in Delhi heat and humidity 

during the 5 hours it took @CGHS 

to apply to transfer his card to Delhi

Then I start thinking about the care of the elderly.  I have often said that looking after an elderly person, and that too one with a degenerative disease, like my father’s, is akin to looking after a child.  

Whereas with a child, parents live with the joy and hope that soon their child will grow and become more independent, there is no such joy and hope for a person who looks after an elderly patient parent/s.  The parent/s will become more frail and dependent till finally death takes them.  A child will live with parents for many, many years but an elderly patient parent will be with us for only a short time.

So why, I ask, have no companies, or governments for that matter thought of instituting “Parent Care Leave”? Leave that I could have availed to look after my father, who has Parkinson’s Disease, Dementia, & Diplopia, vs giving up a full time job.  Leave that I could have used to ensure that I spend quality time with my father vs spending ~4 hours travelling each day to and from Gurgaon.   Leave that I can avail when my father is rushed to hospital and needs care.  Leave that would enable me to manage the financial constraints that not earning puts on a family, especially when I am the only earning member.

Using Parent Care Leave

Since 2011, I have not had a vacation. All my leave days have been used in visiting and caring my father when he was with my siblings and then looking after him when he moved to Delhi in 2014. 

Anna (in yellow) with his younger brother
(KV Krishnamurthy in blue),
Anna's housekeeper & attendant (in green)

In 2014, I brought my father to Delhi to take over care-giving from my siblings. I had to set up a separate, fully functional flat for him.  I was working a full-time job then and had to take PL (privileged leave)and Casual Leave (CL) to fly to Bangalore, pack up and transport his household to Delhi.  Not to mention the many hours after work and two marathon weekends, unpacking and setting up the house.  Hours and days finding him household help, attendants, doctors, therapists, et al. 

I couldn’t relax on a weekend or take a day’s vacation, as I needed the leave to fly him to Delhi, settle him in, and reserve some days for potential hospital stays.  And there were hospital stays, midnight emergencies, hallucinations and delusions that had to be managed on the phone.  All while spending a minimum of 12.5 hours on travel and work.  Not to mention looking after my home and my husband’s elderly parents, who are 91 and 80 respectively.

So, in the end I stopped working.  There was no other choice. There is only so much I could do in a 24-hour day.  And when the choice came down to working or looking after 2 homes and 3 elderly people, I chose care-giving.  It was a no-brainer. 

I thought that I would take a few months off, settle things down and then re-join the workforce.  Wishful thinking, at it’s best!  A new job, meant new commitments, proving myself over again, longer hours, travel, etc.  

Added to this, is the fact that with the elderly there is no predictability.  An upset stomach can send someone to the hospital and time to recover could be 5 times longer than it is for someone in their 50s.  So in the end I decided against a full-time job.  I decided to do something that would give me energy - consulting in areas of interest and coaching organization leaders.   

Tho’ this is my unique challenge, I believe that parent care is going to be a real problem in a few years.  The great “demographic dividend”, that we talk about so proudly today, will become our country’s super senior citizens in 35 years.  Already, nine states in India have lower fertility rates than the highly developed countries of the world i.e. lower than 2.1 which is considered the replacement rate.  Our old age dependency ratio will nearly triple from 13% in 2000 to 32.8% in 2050 i.e. 1 of every 3 working Indians will have to take care of an elderly person by 2050.

While the government is still wrapping its arms around how to get the maximum benefit from the great demographic dividend, I hope they will think of changes to our healthcare and wellness programs to manage a large elderly population. 

But, let’s not leave everything in the hands of a government.  Can some forward-thinking company look at how to retain some of its most experienced people (normally in their 50s), by helping them take time off to look after the same parents who got leave when the child (me & you) were born?

I am asking for the institution of Parent Care Leave. 

That’s not outrageous.  It’s just reality.

First published in The Quint on 14th Aug 2015

Dealing with Dependance

Anna lives a few houses away from mine in a flat that I rent for him. I run the house, including all the support staff. Tho' most Indian homes have some support staff, unlike other countries, it is not easy to get or manage support staff. Hence, I visit Anna at least 2 times a day if not 4 times.  Anna has got used to me running in and out of the house at odd times.  The one constant visit is in the morning, when I wake him and chat over his first cup of coffee.

Basavanagudi Market

So when I told him last week that I needed to go to Bangalore for 3 days, he was not happy.  He was just not happy about me not being around.When I asked him why when both my husband and father-in-law would continue to meet him during the day, and that I was just a phone call away, he just said "Its not the same". I brushed off the statement and ignored the pout.

So off to Bangalore I went.  He wished me all the best and said, as he customarily does, "Be careful."

Over the week we dealt with 5 distinct phases:

Phase 1: Familiarity and Security. This was the phase Anna and I were in.  He was used to having me around, chatting, going out, joking, providing emotional support, etc. This is the normal state other than when he is having delusions or hallucinations.

Phase 2: Depression / Sadness. This started the morning after I left. He talked less, walked less, asking when I would be back.  He would not respond to simple questions like what he would like to eat.  He got maudlin with Sanjiv, my husband, seeking reassurance that he was not a burden.

From eatsofindia.blogspot.com

Phase 3: Disorientation.  The progress from sadness to disorientation was fast.  Anna started to think he was in Bangalore. Perhaps because I was in Bangalore. He wanted to eat mysorepak and jaangiri (south Indian desserts). He could not understand why it was difficult to get these in Delhi.

Phase 4: Delusion.  Then started his money delusion - that there was money in a bag that had been lost.  The morning after I returned, when we were drinking coffee, he kept flipping the pages of the newspaper, like flipping thru' a wad of notes, looking for something.  He was looking for his wallet.
This phase lasted for over a day.  He went from thinking he had lost money, to thinking that he was a pauper and that there was no money to look after him. I continued to use logic to break the delusion.

Phase 5: Reassurance. The second day after my return, Anna actually walked to my flat mid-morning, something he has done only once before, to chat with me.

Anna: "I understand that there is no cash in the house.  That there is no cash missing. As you have explained."

Me: "Good, Anna."

Anna: "But I distinctly remember cash in a green bag"

For the life of me, I don't! So we spent 45 mins, going thru the logic on how there is no cash at his place (for safety reasons), how I withdraw money when he or the household needs it (he can't do this himself), etc.

Then I whipped out the trump card, his Pension Passbook, that I had just had updated in Bangalore.  We spent another 30 mins reading (and re-reading) his pension credit amounts, interest credit amounts, withdrawals, etc.

It has taken over a day for Anna to come back to nearly how he was when I left.  It tells me that I have to:

Stop building dependence.
Yes, it is critical to create and maintain structure and schedule in a patient's life. But there can be too much of it.  So I need to find a way to wean Anna from seeing me daily. Perhaps replace the meeting with a call. Perhaps tell Anna that I will not see him on a day at random.

Stop feeling guilty.
Even when I am dog tired, I will still stop by Anna's to say "Hi" and chat for 5 mins.  I do this because I feel guilty.  Guilty that I have not seen him, or that he will be waiting for me.  I have to realize that this is self created guilt and that it serves no purpose.  It does not help me or him.  

Dealing with (Money) Delusions

From barclaylittlewood.com

I have been asked "What are delusions and hallucinations?” 

Technically, delusions are false beliefs and have a common theme and are paranoid in nature.  Hallucinations are episodes when the patient sees, hears, smells or feels things that aren't there.

It is believed that the long term use of Parkinson’s disease medication causes delusions and hallucinations. Hence, these tend to worsen over time. Delusions and hallucinations are so vivid that they can cause distress to both the patient and the caregiver.

Anna is also affected by both delusions and hallucinations (in addition to disorientation and vivid dreams).

In this post I am going to concentrate on his delusions around money and how we deal with them (I will cover hallucinations, disorientation, and vivid dreams in other posts).

Anna's delusions around money revolve around 2 themes:

1. Not having money – Anna is worried that he does not have money. No money to pay for his daily needs like buying food and paying servants' salaries.  No money for medical expenses. He often thinks that he is in a government guesthouse or hotel and does not have the money to pay the rent.
2. Money has been stolen – Anna has a recurring delusion that “money in a brown leather bag” has been stolen.  He believes that this money has been taken by someone in the house; the attendants or the servant.  He has grabbed at attendants’ trouser pockets to see (feel) if the money is there and has asked attendants to empty their pockets. 

Why These Delusions? 

Tho’ delusions are thoughts or beliefs that aren't based on reality, I believe that Anna’s money delusions are rooted in personal experiences.

Anna grew up in a very poor household. His father was a village school teacher.  My grandfather, Tatha, had 10 children – 7 girls and 3 boys.  Anna has often told us how, when there was no food to eat, they would tie a wet towel around their stomach and go to sleep at night.  The wet towel kept the stomach from aching with hunger and helped them sleep.  

From good-for-nothin.blogspot.com

Anna thinks that he has lost money.  Lost money in not making investments when he should have; lost money in selling assets.  Tho’ we have told him many times, in his pre-Parkinson’s days, that these are notional losses, he continued to believe that these were real losses. 

Anna has been a victim of fraud. He was defrauded of money by a bank. Tho’ it took me over 6 months of work to get the money back, it affected my parents badly – after all, banks are safe places and should not be the perpetrators of fraud, as we believed they were in this case.

Anna is worried about me not working a regular job with a regular income.  And that there is an additional strain on me – what with having to look after 3 elderly people.

How Can We (The Caregivers) Deal With Delusions?

Depending on the strength of the delusion, i.e. how intense / disturbing the delusion is, we can do one or more of the following:

1. Play along: When the delusion is not distressing Anna too much, I just play along.  So, I tell him that the “brown leather bag” is with me.  That the money is safe and not lost. That for his safety, there is no money in the house and that all spending cash is with me.  Often this calms him.
2. Ask why: If the delusion is not mild or continues for some time, I often ask Anna why he is thinking about money.  Is there something that he wants to buy? Often, I find out that he is concerned as he has not seen his pension account passbook or because he believes that a lot of money is being spent on him. I spend a lot of time explaining to him how we manage the basics for him - house rent, salary of all help, doctor’s fees, food, etc.
3. Reassure Often: Every 12 – 14 days, I try to show Anna his bank account balances.  There is very little change between time periods, but seeing his bank account balance helps.  Often he forgets that he has seen his passbook a couple of weeks ago. Sometimes there is confusion as he believes he has more money than there is in the account. Finding the right balance of sharing is the key.
4. Distract: When the delusion is intense, and none of the 3 points above work, the only option left is to distract Anna’s train of thought.  I find that taking him out of the house helps.  A sightseeing ride in the car, a trip to a mall or market, or a long wheelchair ride, all help. I find that at the end of a “distraction” Anna is tired and will want to take a nap.  When he wakes up, the delusion may have ended but is likely to return over the next few days.
5. Deny / Contradict: This is the last resort.  So when Anna grabbed for the contents of the attendant’s pocket, I said firmly “No, Anna!  You cannot do that.  If you want to see what is in his pocket, I can ask him.” Anna did not respond.  I politely explained the issue to the attendant, who understood, and emptied his pockets.

Instances of delusion can occur at any time.  I have, over a period of time, taught Anna’s household to recognize and respond to Anna’s delusions.  They, and I, are still learning, and I believe, will continue to do so, as each delusion is different in its own way, both in context & content.  Added to this, is the fact that, how we react is based not on a mathematical formula but on how we interpret the situation.

None of this is easy.  None of this can be planned for. None of this is predictable.  So its learn-as-you-go doing the best we can.