When you are in the rut of things you can’t think: a doctor-caregiver shares

Vidya (name changed) is a doctor whose grandmother (mother’s mother) suffered from dementia. Vidya’s mother and aunts took care of the grandmother, with some support from Vidya. The family finally reached a point when they could no longer handle the caregiving and had to move the patient to a long-term stay facility. [note]

Could you give us background information about the case and the sequence of events?

Granny lived in my city for many years, staying with either my mother, or my aunt (my mother’s sister). The two houses were close by, and Granny would move from one house to the other whenever she felt like.

Granny suffered from a condition called Transient Ischaemic Attacks or TIAs. The first episode occurred when I was in medical school and I remember she was hospitalised. She recovered quickly and was back to normal. This was followed by one or two smaller episodes of shorter duration, during which she inadvertently passed water where she was sitting/lying. Apparently she seemed okay so it was not taken seriously.

Some time later, Granny took ill and started behaving bizarrely. For example, she once smeared her poo over the bed and the walls of the bedroom. We then called a psychiatrist friend who, after evaluating the patient, suggested that it could be a case of dementia.

As her other parameters were alright, we didn’t think it was necessary to take her to a hospital to assess her physical status and do investigations. Of course I did speak to a senior doctor at the time, who said that anyways nothing much can be done for such a patient.

But as time passed, the bizarre behavior worsened. At that time, Granny was living with my aunt, who was in her late sixties. My aunt found it very difficult to manage to take care of Granny on her own and we all decided to get some home-help. My mother employed a ‘nurse’ from a well-known organization in Kerala. With this, we started a phase where we used a number of such ‘nurses’ to care for Granny.

These nurses were not actually trained in nursing, so to say. They were just young girls in need of a job, who had taken on the task of caring for an ill person as best as they could, for a fee. Some of them had previous experience elsewhere. Some were good at heart, some were hygienic, others were not. We had to manage with what we got as we had no other source of home help.

After we began using home help, Granny continued to stay at my aunt’s place for a couple of years and then moved to my mother’s house for roughly a year and a half with the ‘nurse’.

The care was also hard to manage because my mother and her sister were both in their sixties and had their own health problems.

One major problem was that the ‘nurse’ would suddenly leave and go home for reasons best known to herself, or because she had finished her tenure (of max. 5-6 months at a time ). During the absence of the nurse, my aunt (or my mother) had to manage Granny’s care on their own. That was quite a task as Granny was a heavy woman. I lived separately, and though close by, I could only help sometimes with the care. The care was also hard to manage because my mother and her sister were both in their sixties and had their own health problems. Granny’s third and youngest daughter, (she was in her fifties) lived in another state; she would come many times to help her sisters with the care especially during the absence of the nurse.

Granny (along with the nurse) was next moved to the city where her third daughter lived. After living for a while with this daughter, Granny was moved to a long-term stay and care facility for older people where she passed away after three years.

Can you look back at the years between the possible onset of dementia of your grandmother and the point when it was formally diagnosed, and share with us what you think can be done to facilitate early diagnosis?

The best possible thing to do is to keep evaluating the person’s health from time to time with proper assessment by qualified doctors and based on that , necessary investigations.

One could then try and control any imbalance of substances for instance-lipids. Or rule out other things like thyroid problems. There can be many things that need to be looked into. A proper control of various parameters could possibly slow the progress of the condition.

Perhaps there were other problems also that needed to be addressed in Granny’s case that could have made her better.

There are different causes of dementia as well that need to be evaluated. Perhaps there were other problems also that needed to be addressed in Granny’s case that could have made her better. And who knows, initially it may not have been dementia at all. I can’t be sure because I didn’t get all the parameters checked and I think I should have consulted someone else as well. But now, thinking back, we may have come to the definitive diagnosis too soon, too easily.

Often, people assume that if there is a doctor in the family, this doctor is responsible for, and will ensure that everything that is needed is done. As you are a doctor, did you experience this expectation?

Well, my family did look towards me for suggesting the next, best step, but it was more of a responsibility that I felt on my own rather than it being implied or stated.

Did your professional background equip you sufficiently for what you needed to do? In what aspects of caregiving did it help? In what aspects was it of no particular advantage?

I’m afraid I wasn’t at all equipped for caregiving because our medical curriculum does not give any importance to the subject of older people’s health and how to deal with it.

At that time, I thought that as I was a doctor, I had the advantage in caring for my grandmother. But now looking back, I’m afraid I wasn’t at all equipped for caregiving because our medical curriculum does not give any importance to the subject of older people’s health and how to deal with it.

Because of my being a doctor, I could get direct access to other doctors to discuss Granny’s condition. This was only of limited help as the city where we lived lacked facilities to provide actual care to older persons in her condition.

As a granddaughter, looking back to those days, can you share a couple of incidents that were frustrating or where you felt inadequate and helpless/ agitated?

One such incident I would say was when Granny , not knowing what she was doing messed up the whole room with her poo and everyone was tired and frustrated with the cleaning and the awful smell. It was physically very demanding.

Can you share a couple of incidents when caregiving was fulfilling and heart-warming?

On some occasions when Granny could recognise people around her I felt I could still feel her around with us, and it felt all worth while.

Your grandmother was finally transitioned to a long-term stay facility. Can you share with us the pros and cons that the family considered for the decision, and what the emotional impact of the decision was? What would you now advice people in a similar situation to think of?

The decision to do so wasn’t easy because the whole idea was new to us – that of Granny being taken care of, away from us. It would mean seeing her less often and her being with people she didn’t know and who we hoped would be good to her.

But at the point of time, it had become physically impossible to take care of her in any of her daughters’ houses as they were old and had their own health problems. I lived in my father-in -law’s house so I couldn’t have Granny living with me. Besides, were we doing the best for her anyway? I don’t know. It was only gratifying to see that she was with family.

Each family has to make up their mind as to what and how much they can do and then take their own decision.

In your caregiving situation, your grandmother was looked after, turn by turn, by all her daughters. Do you have any tips on how sharing the care responsibility between diverse family members can be made smooth for both the patient and the relatives?

I would say all three daughters shared in the responsibilities and tried to coordinate as much as possible, especially in the trying weeks when the caregiving nurse had completed her tenure and went back to bring a replacement.

Communication between the family members is the key to a smooth functioning of caregiving.

Is there anything else you wish to tell other caregivers?

… all of us in our family were not really prepared for the caregiving, though we did our very best. We didn’t know exactly what we were facing and what it could lead to.

Looking back, I think that all of us in our family were not really prepared for the caregiving, though we did our very best. We didn’t know exactly what we were facing and what it could lead to. So we didn’t know what care was needed, and we didn’t plan for it. We fell in the turmoil of getting things done. For example, I didn’t sit back and think–What am I doing? Is this the right thing? Is there anything else? Maybe many other caregivers are in a similar position today, as we were then. Because sometimes when you are in the rut of things you can’t think….

I would advise caregivers to spend some time locating expert professional help to understand what sort of care will be required, and then to plan how they will give the required care.

Thank you for your time, Vidya.

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Note: This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of dementia patients, the families, the care environment, or professionals. Every patient, every family is different and so is their experience.
Some names and details have been changed to protect the identity of the interviewee.