March 25, 2013 – Swapna writes…

My mother died one year ago; it’s time for me to post a consolidated personal update. Here goes…

I’ve written a lot about my mother in the past. I’ve shared memories of her as a person (including my childhood with her). And I have, over multiple posts, shared episodes of her dementia journey in this blog. I don’t really have much to add to that right now, and I’ll use this entry to share, instead, my experiences of this last year as I have tried to adjust after her passing away.

My mother’s death was a major shift for me not just emotionally but also because I no longer had to coordinate her care. A year ago, most of my life centered was centering around my mother’s care and also my efforts to help other caregivers. This was my main form of self-identity. Of course I was doing other things, too — I had other work and responsibilities, I read books (gobbled them may be a better way to express the truth), I took long walks, I did jigsaws, I saw an occasional movie DVD. But my self-identity was closely knitted around my mother’s care, and this part of my role/ identity collapsed overnight.

One immediate consequence of my mother’s death was disorientation. I’d become used to a constant state of alertness about her, expecting any crisis to happen at any time. I always carried my mobile, even for a five minute trip to a shop. That I no longer needed to remain alert was very odd. I would feel vaguely guilty that I no longer needed to keep her in my mind all the time. I even have intense anxiety episodes sometimes–for example, waking up with a horrible feeling that something’s wrong or about to go wrong, and that it is related to my mother. Even after remembering that she is dead, and telling myself that, the anxiety takes a while to subside. I’m relieved to share that this disorientation and anxiety has kept reducing over time, both in intensity and frequency.

Then there have been these memories of my mother. While she was alive, I was anchored to her current reality and did not have the time, energy, or need to recall past memories related to her. Her death removed that anchor to the present. I found myself rudderless in terms of a context to think about her. Memories from childhood and my youth all rushed at me with equal weight and validity. I found this distressing and disorienting. Good and happy memories made me nostalgic and I felt a great sense of loss. Bad memories (my mother was not a perfect and neither was I, so we had our share of clashes) brought back restlessness and regret about issues/ grievances we never smoothened out. Both types of memories, good and bad, were disorienting and left me anxious.

In the past year, I have also met many persons who knew my mother, and their recollections of my mother has affected me. Some were her peers, and are active and fit; chatting with them made me acutely aware of how my mother could have been without her dementia, reinforcing my sense of loss.

I’ve been trying to work my way out of these experiences, and also been examining how to carve out my future.

I had not planned for my life after my mother’s death, because any such plans/ dreams could have distracted me from my role and caused me to resent my caregiving work and responsibility. I had a few vague ideas on things I’d like to try, but nothing clear, tangible, prioritized. So yes, I now have some clear spaces in my life, but I have not experienced any paradigm shift. I’ve realized: Removal of some activities and responsibilities from the day does not automatically confer the mindset and energy to use the cleared up spaces. How does one do what one wants, if one is not clear of what one wants?

A major problem I am facing is lack of energy. All my life (except for a period when I was quite ill), I’ve had abundant energy. It was not always positive energy, sometimes it was excessively negative, but energy as such was never in short supply. This last one year I’ve been so low in energy that I sometimes fear I’ll never recover my drive and energy and that I’ve changed in an irreversible way. Even outings and vacations are tiring. I go for an outing and return without feeling refreshed, almost like I’ve been working hard at “Project Enjoyment” and I now need a vacation to recover 🙂

I’d like to add that every caregiver is different, the situation around the caregiving is different. Grief and loss and the process of healing, recovery and rehabilitation vary from person to person, but there are commonalities, too. I’ve been fortunate inasmuch as I’m in touch with other caregivers who are coping with bereavement and know that my experiences are not exceptional in either range or degree. Many caregivers, after months or years of their loss, continue to feel anxiety or disorientation and remain uncertain about what to do next. The impact is highest for persons whose lives were woven around caregiving and who saw the severe deterioration at very close quarters. Even within the same family, others who were not as involved or as close to the person who died have different recovery pace/ paths. I’ve known caregivers who were so numb at the death that it took them over a month to be able to cry. Books on bereavement and grieving (yes, I read some) also often say this process could take years.

The problem is, we see only the outside part of others, and so if we are feeling confused, disoriented, or anxious or irritable, we may feel we are the only persons with this dark, small, vulnerable inside. We think everyone else handles loss much better, and that we are being inadequate and negative and are disappointing people around us.

From what I see around me, it seems that society expects people to be reasonably active and positive within a few weeks, or maybe a month or so of the death. After that socially accepted grace period, people start saying things like, “when will you move on,” and “she’s at peace, why can’t you move on,” and “come on, be positive, you are free now,” and “snap out of it now, for heaven’s sake” and “when will you get normal” and things like that. Perhaps these statements reflect a general discomfort that people have while interacting with a person who is feeling “low.” Because they don’t know what to say or do, they are tempted to dismiss feelings and they say things that would stop persons from expressing their grief. Or they avoid the person till enough time has passed and they need not mention the bereavement.

Any trauma needs time to recover from. I suspect that anyone (not just caregivers) who has undergone something traumatic/ been bereaved gets sympathy only for a limited time window. People around them “cut them slack” for just a few days or weeks. I suspect that this socially normal duration is far shorter than what the person may need. And the grace period assumed is probably even shorter if the person who died was very ill and fully dependent, persons about whom neighbors, relatives and friends feel justified in saying that the person “is better off dead” and “death must be such a relief.”

Anyway, in terms of future directions…

For the past three months, I have been organizing and consolidating the resources I have created for dementia caregivers. Based on past emails from caregivers and my notes on phone interactions, I have modified and enhanced my existing resources. For example, sometimes persons sent in queries for which answers are already available on my site, so I added more questions in my FAQ and modified pages to make related links obvious, or added some more information. I have checked my to-do lists and wish-lists, completed most items and added the remaining to a new wish-list. I’ve also put in behind-the-scenes technical work to streamline my maintenance effort later. It’s been slow and tiring work.Sometimes I feel that this cleaning up and consolidation effort is the right way to organize myself and free mental resources; at other times, I fear that I am using this consolidation as a rational, legitimate-sounding way of procrastinating 🙂

As of now, I expect that I will continue to provide support to dementia caregivers in India through creation and maintenance of online resources, but I’m still in a flux about what else I want to do and how I’ll combine all the things I want to try out.

I’ve always been a curious person, and I enjoy learning new things. But time is always a constraint, and my current low energy poses a problem. On some days I feel excited about what I want to try, then I feel overwhelmed about how can I ever fit it all into a day or even decide what to start with, and finally I reach the other end of the pendulum swing where I tell myself that I don’t need to do any of this, why bother! On the plus side, I have tried some new things, found that I may like some, and that I don’t like others. Vacations and sightseeing, for example, don’t interest me much; I have found I don’t enjoy the malls in other cities any more than malls in my city, and I’m not into history or religion or eating different cuisines from local hotspots. But I love walks of all sorts. I have plans to try some types of craft.

Overall, I’m not unhappy with my recovery pace, but it has been more difficult and long-drawn than I’d hoped it would be. I continue to be gentle with myself, though, and hope things will keep evolving. And my future activities are still nebulous, but not as nebulous as they were earlier.