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.
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.
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.
 |
| Basavanagudi Market |
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 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.
The guilt factor is one of the hardest to overcome. However, experience (not with Parkinson's) with physical challenges/disability has shown me that this is a disservice....
ReplyDelete