Personal update: A year after my mother’s death

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.

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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.

13 Responses to Personal update: A year after my mother’s death

  1. rummuser says:

    Swapna, my compliments on a very well thought out and written update. Mother daughter relationships despite care receiving / care giving situations are special and I can well relate to your emotional roller coaster rides post her departure. In my opinion, you have come out of the experience a different person. Quite how must have become clear to you already but I will simply add one aspect that may or may not feature. You are more compassionate.

    My care giving experiences that dove tailed from one where I loved the care receiver to one where I had to provide care for some one as a duty was not easy to go through in the initial stages, but with time, I became inured to the difficulties of the latter and by the time that the most difficult time came near the end, I was able to handle it with aplomb.

    I had recently gone to see Django Unchained and when I wrote about that, my nephew promptly said that it was more apt to call that Ramana Unchained as I was now in a position to go out and do things like see a movie. Yes, that freedom also takes some getting used to and it is exhilarating I can assure you. It will take another six months for the anniversary of my father’s death, but I am already in a different frame of mind than I was six months ago. Like you, I have got a lot of things lined up and am going after them one after the other and enjoying the process.

    Good luck Swapna. You deserve every good thing that can happen to a person.

  2. Henri says:

    I can relate to this post. It’s true, just because your time has been freed up, doesn’t mean you will be up and ready to go! We went through that, especially my dad. With mom no longer around to focus on, he became a hypochondriac! But it slowly passed. Initially, we didn’t know what to do once mom died. We would just sit around and stare at each other. Everything you write is so meaningful and helps people so much. God bless.

  3. Pingback: Taking Care | In My Mother's Room: A Companion

  4. Jane says:

    My mother died nine years ago, and it took me eight years before I could remember her without returning to the dark time that was the nineteen months between her stroke and death. As caregivers, our memories of this sad time are burned into our brains, and we have plenty of them just waiting to erupt. And most people we know can’t relate because they didn’t see or experience the same things we did. I’m glad things are easing up for you, and I hope you’re taking very good care of yourself. You deserve it! Best, Jane

  5. Grace says:

    Dear Swapna
    Have just read through some of your postings. Thank you for writing and I would like to share my association with some of the things you went through. My mum has just fallen asleep and gone ahead to heaven a few weeks ago. For the past one and a half years, I was her caregiver with help from my sis. You said somewhere that you really enjoyed the precious moments with your mum and she was not a burden but like a child, a truly precious one. I associate with that as I too really treasure the time I spent with my mum. There were times when I carried her and the unbelievable joy and love that surges through your being when you do that is something I believe I will never be able to easily enjoy again. And the sweet innocent look that my mum gives me at that moment is so, so precious.

    At this moment, I still would wish that my mum is still with me although it was so much work, stressful and difficult. Although my sister eventually turned around and was committed to helping out, she gave me much heartache from the beginning. Fortunately for her, she turned around in time to receive the joy of what I spoke about earlier and she is a better person for it. Hence, I associate with your sense of “loss”. My constant dependence on my Lord and Savior, my guide and strength, Jesus Christ is keeping me centered and grounded. I am thankful that He guided me to have the last precious moments with my mum. I had to go against my older siblings’ wishes of keeping my mum in the retirement/nursing home that she had been for more than 10 years. My mum was 91 years when she passed on and I felt that we should at least see her off at home, with those who love her at her side instead of strangers. Mum slipped away in my arms, peacefully and for hours after that as I continued to carry her, she just looked like she was sleeping in my arms.

    Swapna, I have prayed a prayer of blessing for you. You deserve to be blessed as you have been such a blessing to your mum and also as you continue to be a blessing to the caregivers. Lastly, I like what you said “I continue to be gentle with myself, though..”, Yes do continue to be gentle and care for yourself as we caregivers so often forget, one crucial person we should take good care of is ourselves. I believe “We can never truly love another until we have learnt to love ourselves.” God bless and may God’s peace be with you:)

    • Dear Grace

      Thanks for reading the post and sharing your own experience. I’m happy to know that you have so many precious memories of the times with your mother and that your faith carries you through your loss. Thanks, too, for your good wishes.

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

  7. TANU TULI says:

    Nothing can be more informative than a personal experience and that too when written by such a great human being like you in an exceptionally expressible manner. I can relate with many of the posts and believe me I am totally into it when I go through it, like I myself is Swapna.

    Just to brief about me, I am the only son of my parents and my dear father is suffering from Alzheimer’s Dementia for the past few years. I moved to Abu Dhabi 2.5 years back where we (both husband & wife) are working and I wanted my parents to be shifted here. Due to country regulations my parents can live with me only for 3 months and then they have to go back for 1 month at least. We did it 3-4 times in 2 years and then I finally thought to go back to India and be with them.

    Due to non-availability of job in my field in India at that time I had to take the tough decision to stay here in Abu Dhabi and again bring the parents. But this time it is very difficult as my dad is now behaving very differently. I think it is the advance stages of his medical situation. His frequency to go to toilet for both the purpose is increased like anything and he actually does not have control at all. I am sure the muscles must have have weakened by now as he is 72 years old and also the control from mind is no more there. Bed wetting is also there every now and then. Mostly my mom is there to take care of him but in the morning, during lunch and post office timings in the evening, even throughout the night I try to give my full time to my dad. Sometimes I have to sacrifice my wife’s and my 3 year old son’s time as well but as of now that is something on second priority for me.

    They have just spent 1 month here and after 2 months they will be going back. I am looking for the care giver and going through various sites, talking to various organization and most probably would like to try to appoint 1 during my India visit in July. I think this is required at first place and then my returning to India which can not be immediate.

    I am sure when I am back to India the situation by then will be more difficult to handle but I would try my best to be with my dad in his difficult times. I would also try to share the experience in little more detail in future.

    Just wanted to share with you one important thing which may help you in getting out of the loss and feeling much better than the present situation. Please try to be with as many children as possible. Preferably small children between 3-5 years old. Children are the best creation of God and believe me to be with them is synonymous to be with God feeling really happy.

    At last thanks for sharing your experience and many more valuable information through this blog. Please keep your work going for the benefit of the society.

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