Our presence here makes a difference to her: a son talks of supporting his caregiver mother

Ranganath Subramoney is a Dubai-based consultant. His father, now 86 years old, lives in Bangalore and is suffering from Parkinsonian dementia; the caregiving is being primarily  handled by Ranganath’s 78 years old mother, but Ranganath is in Bangalore ten days a month to help, besides remaining available over phone. Here Ranganath shares how he and his siblings try to ensure that their father is cared for, and their mother does not get overwhelmed. [note]

(Read the earlier interview of the mother)

Your mother has already described how care is being coordinated currently for your father by using a number of services (attendants for the day and night, and a dementia day care centre).

The arrangement for Ranganath’s father involves using a day attendant for 8am to 6pm, a night attendant from 8pm to 8am (all days), and availing a dementia day care centre’s service for 9:30 am to 4:30 pm, six days a week. Even with this arrangement, Rangathan’s mother has to handle some hours of caregiving alone. Read her interview here.

Yes, my mother has accurately described the modality used for my father’s care.

I’d like to add that while the use of attendants for the day and night is good in its form and function, any disruption in the availability of attendants throws my mother into panic.

When my mother contacts the agency for a replacement, they tell her that they cannot send a replacement at such short notice, and need two or three days. The agencies supplying attendants do not seem to have the resource planning required to handle such emergencies.

For example, sometimes the attendant who is supposed to report for work calls up to say that he/ she will be delayed by a few hours, or that he/ she cannot come on that particular day because of some personal reasons. When my mother contacts the agency for a replacement, they tell her that they cannot send a replacement at such short notice, and need two or three days. The agencies supplying attendants do not seem to have the resource planning required to handle such emergencies. As a family, we are very severely inconvenienced by these situations. I am, frankly, not surprised at these problems because these attendants are required to work seven days a week and naturally need time off to attend to their own personal work and sort out their problems. A system of rotation of attendants may be more sustainable for agencies.

Sometimes, the agency sends attendants who do not know how to do the work they have to do, and my mother has to instruct them in great detail and supervise them closely.

Another problem we face is that the quality of the staff sent varies a lot. Some attendants are well trained, others are not. Sometimes, the agency sends attendants who do not know how to do the work they have to do, and my mother has to instruct them in great detail and supervise them closely.

You spend ten days a month in Bangalore, and your siblings also visit as often as they can, but there are several days a month when neither you nor your siblings are in Bangalore. How does your mother handle problems and emergencies on such days?

My parents were amongst the first families to move into this apartment complex twenty years ago. We are fortunate that everyone in the building  knows us and is very helpful. For example, if the attendant is delayed, the watchman or lift operator will lift my father to or from the bed, and so on. Neighbours also step in to help whenever needed.

If the problem cannot be resolved with available help, one of us siblings comes here. My sister in Vizag is closest, and can arrive earliest in case of an emergency. Also, I have often wrapped up my work and come here within two days to help cope with the situation.

It helps her to know that someone is always available to listen to her. We, on our part, try to say the right thing so that she knows she has been heard, while also giving her suggestions on what she can do.

My mother obviously gets very tense when there is a problem. She is alone, old, and frail. We encourage her to call us whenever she wants, however small or big the problem is. It helps her to know that someone is always available to listen to her. We, on our part, try to say the right thing so that she knows she has been heard, while also giving her suggestions on what she can do. We try to make sure she does not panic or feel helpless.

It is not just for setbacks that my mother needs support. The whole situation is overwhelming for her, and she feels better if she is able to talk to one of us, or to her sister or other relatives whenever she’s unhappy or worried. All of us are available to her over phone and we are very clear that large phone bills should not be a deterrent for her.

My sister talks to my mother every day. My brother and I talk to her two or three times a week, and this goes up to three times a day or more on the days when there is a problem. Basically, we do not want my mother to feel alone at any time.

We siblings also keep in constant touch with each other so that we remain updated on the situation and on my mother’s emotional state.

With all the phone calls between us and with my mother, I think the biggest beneficiaries of our situation are the telecom companies 🙂

How have you siblings been coordinating to share information and take decisions together? How do you share the work and responsibility?

I am based in Dubai. My brother is in Mumbai, and my sister in Vizag.

In the earlier days, when my father was being diagnosed and the treatment decided on, my siblings made frequent visits here to take him to doctors  and make decisions on treatment and medications and so on. My siblings would call/ e-mail and inform me almost immediately of what a doctor diagnosed or advised, or what the test results were. We also surfed the Internet extensively to understand what the doctors had said, and to research the suggested drugs (will they help, what are the side-effects, and so on). Whenever possible, we discussed to decide between options.

In those early days, because of the way my business was structured, I was able to visit only once every two months, and my siblings, being present on the spot more often, took the lead in the work and the decisions.

As my siblings are both working in jobs, they were not able to keep up the intensity of frequent trips to Bangalore because their leave got exhausted. Meanwhile, I redesigned my consulting work to make more time available for trips to Bangalore.

Currently, I am in Bangalore around ten days a month, and will be increasing this over the next few months. While I and my siblings continue to talk over phone and exchange e-mails very frequently, I am taking the lead in terms of decisions as I am on the spot more often.  I am able to understand the options better and see the impact of medications and can set the tone of what we do based on this.

I also make it a point to arrange my trips to Bangalore so as to overlap with my siblings’ presence here, so that we can meet face-to-face and talk about things.

How often are you and your siblings in Bangalore, and how do you plan to increase your availability over time?

My sister is currently looking after her father-in-law, a dementia patient in his late 80s. Because she already has her hands full with caregiving for her father-in-law, she is able to schedule only one trip every three months or so. However, being in Vizag, she is closest to Bangalore and therefore able to arrive here fastest in case of emergency.

My Mumbai-based brother manages a three or four day trip every six weeks or so, typically combining some leave with a weekend.

I am currently in Bangalore around ten days a month, an arrangement made feasible because of the nature of my work.

My work already includes travel, and my clients are used to getting my services mainly over phone and e-mail. Any face-to-face meetings with them are anyway scheduled in advance. I have reduced my overall work, and also told my clients about my reduced availability for face-to-face meetings.

I am continuing to adjust my workload so as to increase my availability here, and by March/ April 2011, I expect to spend around three weeks every month in Bangalore.

<>I have been increasing my availability in Bangalore in a phased way. For the period around March 2009 to June 2010, I was here for five to six days a month. With my father’s state worsening, I ramped this up to ten days a month since July 2010. I am continuing to adjust my workload so as to increase my availability here, and by March/ April 2011, I expect to spend around three weeks every month in Bangalore.

In essence, I am relocating to Bangalore, and using this as the base of my work instead of Dubai, which means that I will be living here and traveling out of Bangalore when I need to visit other cities and countries for my work. My family will also relocate to Bangalore at a convenient point, in sync with the schooling year of my daughter.

…by increasing my availability here, I am increasing the amount of certainty every month.

The way I see it, when one of us siblings is in Bangalore, my mother gets an environment of support and certainty, and by increasing my availability here, I am increasing the amount of certainty every month.

Could you share your interactions with your father, and his current state?

In the earlier days, it took me an effort to remember that he was facing problems in understanding and responding. There would be times when I’d ask him to do something, such as “turn to your left side”, and he would do nothing even after I asked him a number of times. The natural tendency in such a case was to feel irritation and raise my voice, to lose my cool. But soon enough, it became obvious to me that he did not understand. I learnt, over time, to remember that he was not able to “receive” me when I asked him to do something, and to remain calm. If he did not respond, I would bend his legs and turn him over myself.

What took time was emotionally registering the fact that his condition was not curable.

…he does recognize people even if he does not participate. When visitors come, and are talking, he sometimes even says something–it may be something tangential, like “should I get you something to eat” (which he cannot do anyway).

Now, he hardly says anything on his own. If people around him do not talk, he stays quiet. But he does recognize people even if he does not participate. When visitors come, and are talking, he sometimes even says something–it may be something tangential, like “should I get you something to eat” (which he cannot do anyway). Sometimes, when there are people around him, he tries telling us a joke or sing a song. It is obvious that he enjoys company.

We try to make sure someone visits him every few weeks, so that he feels good and can enjoy their company.

Any overall comments about caregiving, long-term plans, and all that?

I think it is natural that family members have to adjust our lives to do what needs to be done. We all have to be ready to make such changes in our lives. Perhaps we should plan ahead for such a possibility, and be mentally prepared for it.

From what I have noticed, when I am in Bangalore with my mother, it makes a lot of difference to her. She is not tense about the care, and setbacks do not make her panic. She does not feel so lonely. I am glad I am able to increase my time here, with her.

Another thing is that my father, in spite of his state, responds to and appreciates company sometimes, and I am able to enjoy moments of interaction with him. Again, my trips here make that possible.

Caregiving for my father, and supporting my mother, is a concern our entire family shares.

All of us are concerned about my mother, who is not in a state to handle care alone, and we do not want her to collapse because of this stress. Hopefully our efforts to be with her for most of the month and thus reduce the “window of uncertainty” will help; she is definitely happier and more comfortable when one of us siblings is around.

I cherish and appreciate the collective concern and care displayed by all immediate family members. Over phone and  with occasional visits , both my sister-in-law in Mumbai and my brother-in -law in Vizag, offer great comfort and  solace to mother. Equally, my brother and sister call and visit Bangalore, and it all adds up.

Over phone and with occasional visits , both my sister-in-law in Mumbai and my brother-in -law in Vizag, offer great comfort and solace to mother. Equally, my brother and sister call and visit Bangalore, and it all adds up.

My mother also needs to get breaks. We have been discussing the use of “respite care” for my father at specialized centres for some days a month (when none of us siblings can be around) so that my mother can visit her sister and other relatives during that time, and does not have to handle my father’s care alone.

After much deliberation we have recently taken the first step in trying this out. We have availed the respite care facility in Bangalore to place my father there for some days and brought my mother to Mumbai to spend some time with my brother and sister-in-law, hoping this will ease my mother’s stress levels and allow her to regain her composure and  strength (both have been depleted over the last 18 months).

Looking ahead, if this works well, we would probably execute this plan on a monthly basis, rotating mother’s stay with my sister, etc. confident that our father is being well cared for in the Nightingale respite care facility in Bangalore.

…but we are also determined to keep father with us, in his home, during remainder of the month when one of us is present along with my mother for the caregiving.

And so we learn, adjust, and act!

Thank you, Rangathan, for sharing in detail how the family is working together for the caregiving of your father and for ensuring that your mother is not overwhelmed by the caregiving.

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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.