Seven months after mother's death: updates and musings

It is seven months since my mother died, and I sometimes get queries on how I am doing, so I’m sharing an update.

My mother’s death meant I lost the person my life had been revolving around for the last several years. My typical day’s structure, necessary for caregiving, became redundant when she died. My sense of identity changed. My role, responsibility and activities needed a rethink. Given the sweeping change caused by her death, I think I’m handling my situation well enough.

I am living a reasonably active and productive life. While I have not firmly decided the way I will divide my time and energy across current and new activities, I am clearer now than I was some months ago. Redefining my life activities and directions will take more time, but that’s okay; I prefer to proceed cautiously and experiment with small changes, see what works, what doesn’t, and tweak things rather than do something dramatic and then have regrets.

I have also worked off some of the habits that, given my mother’s death, had become pointless. For example, in the early months after her death, I would not be able to move away from home without that elastic snap-back of “something’s missing, I must go home now” — that feeling has gone. I have moved physically away from the environment where I was taking care of my mother, and that may have speeded up this process.

I continue to face challenges on the emotional front, where my readjustment is slower. I am learning to be gentle with myself, especially when I feel overwhelmed and inadequate. I continue to ponder over my new identity, my desires and my possible prioritizations. And, I also try to understand what “moving on” means. I tell myself that while a situation may change abruptly, the related habits and personal characteristics take time to change, and that well-set patterns have an implicit inertia.

Let me share, for instance, one major aspect: socializing and having friends.

I have been an introvert all my life. That is, while I enjoy interacting with people in small groups, I cannot handle too many such meetings. After every few interactions, I need to move away to someplace where I can be alone for a while so that I can “recharge” myself. Being an introvert, I also need to make more effort to make new friends, because one has to meet enough people enough number of times to locate a few who are sufficiently similar to become a friend, and I find it taxing to keep meeting people.

My years of caregiving essentially isolated me from the mainstream. I became reclusive in my habits, and for a variety of reasons, I lost contact with most of my friends. Also, I have emerged from years of caregiving as a person quite different from what I was, say, fifteen years ago. I am different in what I like to do, what I find important, what I am curious about or concerned about, what I feel about issues and incidents, what I want to buy or see, and so on. Some of my earlier friends now have life direction, interests, and priorities that are very different from mine, and there may not be enough commonalities to resume friendship.

It is natural for paths to diverge over time and as personalities change. I think under normal situations one keeps getting “replacement” friends as one changes direction, but as I was submerged in caregiving, I had neither the time nor the energy to keep refreshing my “base” of friends. Nor did I have the opportunity.

In addition to this, let me admit it, some experiences of loss of friendships were downright disheartening.

I often read articles claiming that caregivers don’t take care of themselves, that they don’t ask for help, that they don’t let others help them. But for me, there were instances where I did ask for help and company, and did not get it. You do that a few times, get rejected, and then you stop doing it because it is simpler to stop asking than to ask, get rejected/ criticized/ lectured to instead, and cope with that hurt.

Let me share one annoying incident as an example of how low interactions with peers as a caregiver isolated me in unexpected ways. A year or so ago, I happened to meet an acquaintance who asked after my mother. When I answered the question, this person told me that a common “friend” (supposed to be “close” to me) had said something quite different about my situation and they believed her (and not me) This “friend” who was quoted was an extrovert and well-known and respected as someone who helped everyone and stayed in touch with everyone.

Frankly, I had no idea how to respond. I knew it would sound petty and argumentative and complaining to point out that this “friend” had not met my mother for many years and had not talked to me either, and therefore she had no basis to give any update. I felt awkward and defensive for no fault of mine. I blanked out (I am not good at interactions, anyway) and I think I somehow changed the topic, which probably confirmed this person’s suspicion that I was lying. I also realized that I would probably keep running into similar awkward situations when I met common acquaintances whom this “friend” had kept “updated” based on her fertile imagination and her need to sound well-informed about everyone and everything.

Anyway, my immersion into caregiving, my isolation, and my natural introvert nature has all coalesced into a situation that cut me off from most people. I now have to decide which old friendships have enough common ground to be revived, and which don’t, which friendships can be trusted, and which can’t, which ones are based on respect and which are not. Basically, which connections are worth working on, because my social energy is limited and I must choose carefully. I also know I will need to make new friends more suited to what I am today (not that I am too sure of what I am today). It seems quite a project, and the pay-off is far away.

Another thing that keeps disorienting and distressing me is a strange sense of loss that hijacks me sometimes.

I saw my mother go through her decline for years, and I stayed emotionally close and connected through the process, so I have some degree of closure and acceptance on that reality. Not a day passes when I don’t think of her. I miss her and the time I was spending with her, in a gentle way.

More difficult, though, is coping with a sense of loss I experience when I see how she spent her last several years alongside how her peer group is faring.

In the past few months after her death, I have met my mother’s friends and peers, many of them after several years. They ask me about her last few years, or start telling me stories from their shared past. And they bring back memories of a mother who was younger and more active. As I talk to these friends of my mother, I notice how, though they are my mother’s contemporaries, they are physically active and cognitively sharp. I become acutely aware of what my mother could have been like without her dementia, and how different life would have been for me, too. The sense of loss hits me hard.

Currently, there are some days when I slump because I am swamped with memories of my mother (usually after I’ve met someone elderly who is bright and active). And there are days when I feel very shaky about having become a recluse combined with the fact that I don’t have the energy or desire to change that, and how will that affect my future? And on such days, I feel paralyzed and my energy dips. Dark chocolate helps, as do puzzles and fiction, but I don’t think that’s a sustainable solution.

On other days, I operate within an acceptable band of activity and relaxation, and with a growing hope that these emotional hijacking sessions will reduce over time.

I know it will take time to find my new equilibrium of friends and interests and to find my peace with the overall loss. The overwhelm I feel sometimes will decrease in intensity and frequency. I also know this will need effort on my part, and this is what people call “moving on.”

But what is “moving on?”

I sometimes have people advising me that I should not think of the past and “move on” and forget what happened because now I am “free.”

I find that approach strange and unacceptable. It assumes that my life was a black hole when I was a caregiver, and that is not true. My years as a caregiver are an integral part of my life. They had their ups and downs, like any other phase of life has. The years involved work, responsibility, tension, isolation. And the years also gave me the fulfillment of staying emotionally connected to my mother, they taught me many things about life, identity, joy. Those years changed my perspective about what matters and what does not, what dignity is, what connection is, and so on.

As far as I understand, “moving on” is something that happens all the time, for everyone. And even at major junctions like what I am facing currently, any “moving on” can be robust and wholesome only if it involves resolution and peace and consolidation of lessons learned. I don’t see moving on as something that can be achieved by amnesia or denial or pushing the past under the carpet. Besides, given my long and immersive years of caregiving, any such carpet would have to be a rather large and thick one

Basically, I have no regrets for my years spent caregiving, and I also found fulfillment in them, so why should I ignore them just because my future may include other, very different activities?

I have been trying, in my own way, to wrap up the past and make way for my future. For this, I have started consolidating my dementia care thoughts and my experience sharing, hoping that sharing and structuring will help me neaten my mind and perhaps help others. As part of this, here’s one e-interview (A Caregiver’s Role) and below is a video where I share my late stage dementia care experience. (You can also view it directly on youtube here.)

Currently, each such “content” creation exhausts me, and not just because of the effort involved. Sorting out my thoughts to create content makes memories return (and sometimes overwhelm), and these are tinged with nostalgia and loss. But then I tell myself, if this content is of any value to others, then my making productive use of it is a good way to move ahead.

Different people must be using different ways to handle readjustments and redefinition of life. So far it seems to me that, for me, there shall be no dramatic waking up one morning to find I’m all energetic and “new”; I am traveling on a slow and gentle curve, turning just a bit with each unit of work I do and each neatened up idea I put down and then set aside. And somewhere down the line, I would have cleared up enough mental and emotional space to get the time and energy to explore things and experiment with directions I have deferred earlier. Let’s see what life uncovers

I’ll add more updates later, as I get more clarity on what is working for me, and what is not.

Main links referred to in this post

• A Caregiver’s Role
• Video: Late stage dementia care at home: a caregiver from India shares her experience

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