A Conversation

It’s 2.30 am at night.

My mother refuses to sleep.

She is a profound Dementia patient and as is common with them she has sleep deficiency,. Her Neuropsychiatrist is of the opinion that she has only a bit of working memory left.

But she does sometimes talk about the remote past.

I resent these sleepless nights as I have to go for work the next morning. But then I think perhaps these are the moments I will miss someday.

So, we continue having this great conversation.

Mother : I had given you ₹ 800/- for the house?

I : Which house?

Mother : 124 No. (Where she used to stay before marriage. Most probably that whole area must have been demolished by now.)

I : I bought this flat with that money.

Mother : Which flat?

I : This one. Where you are now.

Mother : What is the number of this house?

I : 33

She is not satisfied. So she repeats her question about the money that she has given me. I repeat my answer. The same conversation goes on twice, thrice.

The fourth time it’s a bit different.

Mother: I gave you ₹800/- for the house.

I : I bought this house with that money I told you.

Mother : Do you think I am an ass. Who gets a house for ₹800/-?

I : Mother you are making a fool of everyone, including the physician. You know everything. You are up to date. Your memory is intact. And am going to tell this to the doctor tomorrow.

Mother: Who are you?

In our country Dementia patients are known as tertiary patients. Tertiary patients are those who are not medically treated properly. Forgetfulness and loss of memory are taken as signs of old age which just happen with age and do not require medical attention. They are incurable and end only with the demise of the individual. So no botheration need be taken and the oldies talking gibberish have to be either ignored or laughed away because they have the biggest issue and that is they are old and in their second childhood. In my extended family, the father was not allowed to be in social gatherings as he was a huge embarrassment to the so called educated elite family.

It goes without saying that Dementia patients require a lot of care, compassion, love, patience and perseverance. Caregivers are required to take care of themselves more as it is very stressful to deal with such patients.

My mother’s physician always asks about how I am keeping before moving on to my mother’s health condition.

Dementia is not curable but can be slightly contained if diagnosed early. One should not take habitual forgetfulness lightly. However, dementia is different from attention deficit issues. It’s best to consult your medical practitioner if you feel you are not able to remember ordinary day to day details off and on. Though it is very difficult to recognise the early signs. I often regret I could not figure out the signs in my mother’s case when she was suffering from unusual anxiety about little little things, used to unnecessarily worry if guests were expected at home, was fearful of strangers or if the calling bell rang at odd hours.

She would also get very upset if I was late from office, grocery shop, running errands or personal visits to the neighborhood. Once she followed me to the neighbour’s leaving the front door ajar in her house gown and walker. I thought she was being odd and encroaching in my personal space. But it never occured to me that she was traumatized of being left alone. I repent my lack of awareness and the consequent delay in her diagnosis. By the time we realised that there was something terribly wrong with her she was in an advance stage.

In our country even General Practitioners treat Dementia as one of the many old age issues. However, Dementia is a borderline disease which requires neurological as well as psychiatric treatments. It is very difficult to find a physician who specialises in treating the disease. As I said there are very few who view the condition as one which requires specialized care or treatment. But as per statistics available online India has 8.8 million Dementia cases which will increase considerably by 2050.

Unfortunately, we do not even have any support groups who can spread awareness amongst masses and the need and expertise for dedicated care for such patients.

Dementia patients are to be handled delicately. Caregivers need to be adequately trained. Even in hospitals, which call themselves super speciality centres, do not have appropriately trained nurses, attendants and other staff who can handle such patients. As a result, they are badly neglected even in ICUs and HDUs.

Therefore, whenever mother’s attending physician advises hospitalization (other ailments – my mother has a complex medical history) my first reaction is to arrange all facilities at home so that she should be spared the ordeal. In worst cases where it has been unavoidable I have secured special permission for self and her regular caretaker to go feed and check upon her even in ICUs.

The purpose of this post is to implore readers not to ignore Dementia as just an old age issue. Dementia patients cannot express their needs, pains, discomforts and worries. Their comfort zones are very crucial for them and they don’t appreciate any disruption therein. For example, my mother used to get very perturbed if the wall clock in her room stopped working. We had to change the cells in no time. They need patient hearing, loving care , lots of day to day management and diversions and a whole lot of understanding and observations.

If you care please do share this post as much as possible to spread awareness and concern. 🙏🙏🙏🙏