slipping one unfiled paper at a time

This is an anecdote, but not about a dementia patient. This is an experience related to me by a friend, and about her father who remained mentally alert till he died.

My friend, let’s call her R., lived near her father – a professional who had been very organized all through his work-life. After retirement, he remained particular about his records and filing. Once, when he fell ill for a prolonged period, R had to look through his papers, and realized that they were somewhat disorganized as the files her father was using were the old government tag-file types.  He had also not kept a record of his earnings as his tax was below the minimum limit.

Having often faced sudden tax queries (because of investments made), R. realized that her father could face a problem collecting data if  he received a similar query. She bought a bunch of ‘cobra files’ and separators, and spent a couple of days collating and organizing all papers. She reconciled all his bank books and brought everything up-to-date. He was very happy, and took over the files when he recovered.  He started filing dividend receipts as they came, and annotated the pass-book every month. He insisted that she print his online bank statement every month, so that he could annotate the entries regularly. R. was very relieved to see him back in control, and grateful that he was mentally alert as well as energetic. She was particularly thrilled when he was alert enough to catch a missing dividend; he made her write a letter to the company for a duplicate cheque, and kept following up till he got the money.

Around three years after she did her jumbo cleaning-and-filing project, R.’s father died. A week later, she picked up his files, confident it would be a simple job. She was shocked to see that no filing had been done for over two years.  For the period immediately after his enthusiastic resumption of filing, bank statements were annotated and papers clipped in order (though not punched and filed), but he had stopped that work after six months. He had continued to annotate bank statements for some more months, but he clearly gave up on such work one-and-a-half years before his death.

As she was looking through the pile of papers, she found unopened envelopes, one of them containing the cheque which he had claimed he never got, and which (obviously) remained undeposited.

R. had not suspected that her father was falling behind in this work. He seemed active and alert, and always asked for bank statements  and nagged her if she forgot. Had he hidden his inability out of diffidence or ego? Had he expected to catch up some day? Whatever the reason, he knew he was falling behind, but he did not confide in anyone, or ask for help. His immediate family did not know that he was facing an area where he felt uncomfortable or inadequate…it must have hurt him and alarmed him, but he chose not to share.

R’s father did not suffer from dementia (as far as we know). He was an authoritative head-of-family man who always had (very firm) opinions about how his family should behave. He was unable to find a graceful way of asking for help, and adjusting to his reduced ability to handle his affairs.

And R., well-intentioned, an alert daughter, remained ignorant of the struggle he must have gone through before he gave up.

Handling and hiding failing abilities is not unique to dementia patients; it is a common problem. Denial of reality is one reason, but I think our cultural expectations is that we will remain independent, and that admitting a weakness is bad and asking for help is an imposition and wrong. This attitude adds to the problem. I wonder how I will handle it when I can no longer do some work I feel I should be doing. I would like to think I will accept facts and share my problem, but it is easy to say that now…only time will tell.

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India, and deeply concerned about dementia care in India. On this blog I share my own caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care in this set of pages:

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