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.

From a Powerful Speach to Speaking Slowly

From squidoo.com

Anna has had a couple of good weeks.  He has not had too many vivid disturbing dreams, there have been only a couple of hallucination / delusion instances, he is walking more, talking more, being far more insightful, joking and laughing with us. Tho' all this makes me more happy, there is also the fear & dread that soon he will have a hallucination that will contrast dramatically with these couple of good weeks.  And I kind-of feel guilty, feeling this way.

I know that it is inevitable & that there will soon be bad days.  But not now.  Not today. Not the last couple of weeks.  So, world, you can huff and puff with all your might later, for now, I am going to look at only the bright side.

Here is what happened this morning, when I went to have my customary early morning coffee with Anna. He told me about his first trip overseas, that too as a speaker at a conference.

In 1964, Anna was sent by the GOI to attend and present at a conference in Copenhagen. Anna's area of expertise was small scale industries. He made a presentation (more a speach) in front of his first international audience.  When he finished, he got a nice round of applause.

Powerfull speach from engl220-iliad-books-ixxiv-3-638

On returning to his seat, a Nordic gentleman, who he had been sitting next to him said, "A very powerful speach, Mr. Murthi". 

Anna smiled, graciously, and  said "Thank You", feeling very proud.

Till.......

The gentleman asked, "But what did you really say?"

Anna and I both laughed out loud.

He went on to tell me that over the duration of the conference, he realized that he needed to speak slowly to enable the interpreter to translate what he was saying.

So in preparation for the next conference (somewhere in Finland), he practiced speaking slowly. But, at the next conference, he spoke so slowly that the interpreter had to interrupt his speach to ask him to speak faster. Which he did.

Body Language from Online-Therepy.com

Anna's take?

You can prepare all you want. But, something will happen that you are not prepared for, and you need to learn and change fast.

Weekend Expeditions

Each weekend, I take Anna out on what I laughingly call, an expedition.   I believe that he needs to get out of the house, see new things, participate in some not-so-common activity. This belief is not based on published research.  It is based in the fact that when I was ill and home bound, I desperately needed to go out. Every other day, my husband would come home from work and just drive me around for 30 mins.  It helped me, and hence I think it helps Anna.

Wheelchair Woes

In India, it is a challenge to find places where I can take Anna in a wheelchair.  There are no pavements to talk off. The chances of being hit by a motorized vehicle is marginally higher if Anna's wheelchair is on the road vs on the pavement, not to mention that he could easily get sea sick riding the uneven roads of Delhi! All public parks have locked gates, and zig-zag barriers. Most shopping areas have steps (uneven to boot) and no wheelchair friendly access inclines, not to mention crowds and enough gentle jostling to tip over a walking person.

Expedition Mall

So I am left with taking him to malls.  The trick is to get there before 11am, just as they are opening. There are fewer people (this makes a difference as crowds sometimes panic Anna).  Malls have large flat corridors, have lifts, are air-conditioned and there is always something different going on. We have only 3 malls close to our place, and hence I take Anna there every weekend.

At first I was worried that Anna would get bored going to the same malls time and again. So each time I take him to the mall I try to do one thing that is different and one thing that is familiar.

The different thing can range from showing him the decorations from all levels (Select Citywalk is great for this), to the different colored T-Shirts that men wear now-a-days (Yes, Anna, men wear post-box red t-shirts), to the different kinds of sports shoes (one even cost Rs. 18,000/- !!).  Each new thing creates a thread that can be followed as we walk the corridors.

Then comes the familiar.  This is coffee!  It has now become a ritual that we will drink coffee and have "something small" to eat. Tho' Anna is happy to share coffee with me or his attendant, he can be quite a child, pouting, if I don't divide the pastry / muffin / doughnut such that he gets the larger piece. If I attempt to leave the mall without getting him a cup of coffee, I will be reminded, oh so politely, that an essential activity have been missed out.

By the time we get home, it is time for lunch - 2ish.  Each of these trips takes 3-4 hours.  Each of these trips, are looked forward to (Anna is ready and waiting patiently on the sofa at the appointed time). Each trip gives Anna something more to see and think about.

When I shared with Anna's neurologist, details of our weekend expeditions, he had a good laugh.

"I have never heard the term expedition being used this way. Such an appropriate word to use", he said.

It is.

There is a lot of preparation. 

There is purpose, there is discovery.  There is creativity, there is fun. 

And there is always time.

I only ate the duck's head!!

My father’s fondness for sweet things is legendary.  It is second only to his love for coffee. So intense is his liking (craving) that he once famously, ate a duck’s head, traumatizing my younger sister.

Before you let your imagination go to places it shouldn't, here is what happened:

When my sister was about 4 years old, Anna went to pick her up from a birthday party.  It was the end of a working day, and he reached just as the party ended.  My sister ran out of her friend’s house and jumped into the car, balancing a beautiful blue marzipan duck cupped in her hands.  The engine still running, Anna asked her if she had left anything behind.  She realized that she had and told him that she would run in to get it.  She then entrusted her beautiful precious return gift to Anna, asking him to hold it while she ran inside.

When she returned to the car, and settled in, she asked for her duck back.  To her horror, Anna returned the duck but with its head missing!!

“Where is my duck’s head?” she asked.

Anna did not say anything. Adults have selective hearing too.

“Did you eat my duck’s head, Anna?” she asked.

“I was hungry”, he replied, matter-of-factly. 

The ride home was made in silence.

When my mother heard what Anna had done, she was very upset with him.  How could he do something so mean to his youngest child?  Anna thought there was nothing wrong, after all, he was hungry. 

We have never let him forget this infraction.  From that day on he has not been entrusted with anything sweet, for fear that he would “massacre” it as he did the duck!

9 Feb 2015 : I will catch an infection at this "madivay mandapa"

Anna stays in a rented, ground floor apartment a few houses down the road.  I manage the house and all support staff as his diseases prevent him from doing so. I visit him at least 2 times a day. Once, early in the morning when he gets up and has his first cup of coffee and the second, when I return from work.

Our morning meeting gives me an idea of what the day is going to be like for him. Some days he is fine and some days it starts like this:

Ganjam Mantapa, Basavanagudi
Photo courtesy weddingok.com

Me: Hi Anna! Good Morning.

Anna: Sangeeta, I will catch an infection. When are we moving out of this Madivay Mandapa?

(A madivay mandapa is a place where marriages are solemnized.  Normally a building with a large hall with many adjoining bedrooms, where the bride and her family stay during a wedding).

Me (choosing to ask about the location and not the health warning): Anna, why do you think we are in a madivay mandapa?

Anna: When are we moving?

Me: Anna, we are in Sheikh Sarai, at home.  We are not in a madivay mandapa.

Anna (looking at the attendant, and speaking Kannada that the attendant does not understand): He said so.  Aren't we in a mandapa?

Me: No Anna. We are in Sheikh Sarai. Anna, why are you thinking of a marriage?  Did you dream of one?

Anna: No

Then I look at what he is eating with his morning cup of coffee.  There is a biscuit and a yellow puffed-rice mixture.  Now I understand!

Me: Anna, is the mixture reminding you of early morning coffee at a wedding?

Anna: Yes. (The frown on his face reduces!)

I don't know what this symptom is called, or whether small episodes of disorientation is caused by Parkinson's medication or by dementia.

What I have come to understand is that I need to be more observant and cognizant of external stimuli.

Finding linkages between stimuli and Anna's comments helps me understand better what he says.

When I get it, it is an Ah-Ha moment for me.  And for Anna, I think it is a moment where he knows he is understood.

I Swam on Day Zero

Maracas Bay (Panoramio.com)

I don't know when and how Anna learned to swim.

However, I do remember, Anna taking us to the West India Club or Maracas Bay (Port-of-Spain) every weekend to swim.  He loved to swim and he wanted us to love it too.  Weekends swimming was his dedicated time with his 4 children. We were enrolled into swimming classes.  I even got a certificate stating that I was "Proficient in Free Style Swimming; Can Hold Breath Under Water" :-) We were encouraged to paddle into the sea and use the waves to propel us to shore, all the while, thrashing our arms and legs to keep us afloat.

When we asked Anna how he learned to swim, this is the story he told us.

(c) Phil Shaw; From coolstuffdirectory.com

"When I was born, the nurse had to hold me upside-down, as they do for all babies, to ensure that I cried.  But this nurse was not as experienced as the nurses you all had when you were born. I was slippery. As she held me by my ankles, head down, I slipped out of her hands.  The nurse gasped in fear and looked down, dreading what she had done. Luckily, there was a tub of water where I fell. And, lo and behold, there I was swimming in the tub! I learned to swim on Day Zero."

As children, we believed this story till we were nearly teenagers. And we each kept the truth of this tale from our younger siblings and cousins, so as not to destroy Anna's fun at repeating it to any child who would listen, including his grandchildren.

And now you, dear reader, join the group that know how Anna learnt to swim on Day Zero.