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 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 continue to face challenges on the emotional front, where my readjustment is slower. 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.

My years of caregiving changed me in many ways. 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. Our paths have diverged, and I am not much in touch with them. I am trying to make new friends, but my somewhat introvert nature makes that tough.

Seeing my mother’s decline and staying emotionally close and connected through the process, is helpful in the process of closure, but even now, not a day passes when I don’t think of her or miss her in a gentle way. And there is 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 our interactions would have been. It hurts.

It will take time to find my new equilibrium of friends and interests and to find my peace with the overall loss. 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, and tension. They also gave me the fulfillment of staying emotionally connected to my mother, they taught me many things about life, identity, joy. They 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. I think any “moving on” can be robust and wholesome only if it involves resolution and peace and consolidation of lessons learned. It cannot be achieved by amnesia or denial or pushing the past under the carpet.

Anyway, 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.)

Main links referred to in this post

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

12 Responses to Seven months after mother’s death: updates and musings

  1. Sheikh shahzad usmani says:

    I like this. It is written in such a way that every sincere caregiver can go into its depth and understand how really you are ‘moving on’ and adjusting yourself with everything new to you. I am with you….I am sorry i could not contact you since my mother’s death.. The views and future plan mentioned by you will definitely guide me and other such caregivers too. I also miss my mother everyday and wish to tell you all my experiences and my feeling of guilt ….so that you can write my full story in your notes or in your website… Have courage to live this new life systematically….pray to god for you…

    • Dear Sheikh, Thank you for writing and sharing your thoughts. I remember how much love and care you gave your mother through her dementia journey right till her end, and I am know that while you must be missing her, you have no reason to feel guilty. I always remember your ideas and suggestions about areas where more support is needed, and your sharing your experiences has been very valuable to me. I hope you are able to reach peace with your loss. Warm regards, Swapna

  2. Swapna, sending a virtual hug your way.
    For Baba i still get asked how he is doing, and I point to the sky. For me the definitive moment came on a nature trail when I stood mesmerized by a rotting trunk that white ants had taken over and were returning to the ground. Sometimes i still cry, and talk to the sunshine where he is now.
    Yes, patience and step by step. I am just so proud of you.

  3. Poonam says:

    Hi Swapna, I am from india living in the US. My mom passed away a few weeks back. She had dementia and we were taking care of her at home. She declined rapidly over the last couple of years just as you described with every next baseline being lower than the previous decline. I saw your video on taking care of her at home and it totally resonated with my experience. I wish I had found your site earlier. I agree that more people should share their experience and also really liked your thought about changing how we view dependence and independence.

    • Hi Poonam,
      Thanks for dropping by and sharing your thoughts and experience. I’m sorry to hear about your mother, and hope you find peace and closure over time. Yes, we caregivers do often find some resonance with each others’ experiences. The more we share, the more the chances of feeling less alone about it all and also get exposed to multiple perspectives. Stay in touch,
      Best Regards, Swapna

  4. Jaideep says:

    Hi Swapna,
    I recently lost my mother due to dementia. You blog is really very helpful for caregivers, hope I have read it earlier. We get too busy in our hectic work alcoholic life and have less time for beautiful moment of sharing time with family members.
    What I regret is how I could have made my mom life better even knowing she suffering from dementia.
    It’s also very important that your second half is helping which was not in my case.

    There are sweet memories of mom which my brother shared with me. http://www.youtube.com/user/drkuldeep/feed?feature=context-cha

    • Jaideep, thanks for dropping by and sharing your story. I hope you reach peace and closure with your loss. It’s good that your brother has captured memories of your mother that you can view whenever you miss her; I am sure they bring solace. All the best, and warm regards, Swapna

  5. Pingback: Personal update: A year after my mother’s death | Swapna writes...

  6. Lila says:

    I am just now finding you! I have been searching the internet for over 2 years and your shared personal experiences in terms of what it really means to be a caregiver and specifics really hit home. I hope you continue your work. I found two youtube talks that you did and they were so helpful and I felt such a connection.Thank you so much for your honesty and forthrightness.

  7. Pingback: A personal update: two years after my mother’s death | Swapna writes...

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