Ramblings on love, hate, and a life worth living

February has been a mixed month for my mother, the most painful part being when she went down with fever but could not tell us where the pain was. Being a dementia patient in an advanced stage, she cannot communicate her problems to us, which means we have to be detectives. Much investigation and deduction was attempted, without success, medication given to control the fever. Two days into the problem, she broke and swallowed a tooth–ouch! She broke another tooth again, the next day. Ergo, a tooth infection. Fever’s under control, and a dentist was requested to make a home visit to assess her dental status 🙂 A major project is now to be planned–a trip to the dentist to remove another tooth that is tethering on a breakdown, and to clean up the stuff left behind by the two not-so-neatly broken teeth. That she is fully bedridden makes the challenge more, well, challenging. Ah, well.

But what’s prompted me to write this blog is something quite unrelated, actually, a few unrelated things, that happened these last two weeks.

Firs, I’d like to share a memory dating around seven years ago. Seven years ago, I was still naive about dementia and how it affects people, still thinking increased memory loss was like losing ten keys a day instead of one. My mother was in her own denial mode, unwilling to admit to any memory loss. The world around her (as I can see in retrospect) bewildered her, and she was not going to tell anyone that. She was a fighter, she was. Often I saw her writing with a fierce concentration in a diary, and snap it close when I entered her room. One day, she left it open near her breakfast tray, and there it was, written with a red pen, written so angrily that the pen had torn through the paper. There were many broken sentences on the page, and I stopped short when I saw my name. She had written that she hated me, written it again and again and again, and written about others she hated, and at the end, there was: I hate hate hate the world.

Frankly, I was very upset.  I don’t think anyone likes being hated, and having to look after someone who spent her time scribbling that she hated me, and everything and everyone around her, was not just disconcerting, it was disgusting. I don’t remember what I did that day, I think I hit a couple of pillows, I wept, I despaired. Then I moved on with what needed to be done, but that thorn was there inside me for days. The hurt reduced slowly, as I began grasping how hostile the world appeared  to her. Then I forgot about it.

I remembered it a few days ago, when I was standing with her, holding her hand.  She was smiling at me, and it suddenly struck me that her smile wasn’t just a simple one, it was a full smile that reached her eye and gave her face a character I had not seen for years. Though bedridden and helpless, and unable to speak, she seemed so much at peace. I bent over her, kissed her forehead, and said, as I do every day, I  hope you are happy. I want you to be happy. I love you. And my mother, who finds speech an ordeal and rarely utters more than 4-5 words a day, spoke up for once. She said, very clearly: I love you, too.

I think few gifts can be more precious than my mother spending all her speaking energy of the day to say such a thing.

The reason I am writing about this is also because of something that happened around the same time, a conversation with some acquaintances.

I do not socialize much. Firstly, there is a problem of time, but even more, there is the problem of my life being on such a different track that I can rarely find enough to talk about to others. Most of my “circle” is therefore confined to those in similar dementia/ caregiving areas, or fellow writers who know nothing about this part of my life. Still, I have neighbors and acquaintances and occasionally get chatting with them, sharing updates.

So this woman asked after my mother, and I said, “She is bedridden, unable to turn herself, barely able to speak, but still seemed happy and at peace most of the time. She smiles a lot, and holds my hand, and I think she is happy most of the time.”

And this woman said, “It must be awful being dependent like this. What sort of a life is this!” Shudder, shudder. “Wouldn’t she be better off dead?”

I repeated my statements on my mother generally seeming content, even described it a bit, but this woman only repeated her statement about my mother being better off if she were dead, shudder, shudder, and a roll of eyes.

I didn’t know what to say, and I excused myself and walked off, scared I would end up being outright rude to someone who was only expressing what she considered “sympathy” .

I am sure most of us have days we would rather not have. Days when we wish some strange and wonderful force would pull us out of the time and place, and plunge us into a better past, or a better future (and we are sure nothing can be worse). When the woman said that thing about dying, I tried placing myself back into such a day and having a friend walk over to me and look soulfully into my eyes and say, “Swapna, you would be better off dead.” And I shuddered.

So what is it that lets people tell me (and this woman was not the first) that my mother should die? And persist in saying that even after I confirm by examples and descriptions that my mother seems happy enough? Not as if people should die if they are not happy; the world would be empty in a jiffy if that algorithm was applied. What really feels odd to me is that always, always, this statement is delivered in a tone dripping with sympathy.

Okay, so maybe she wasn’t wishing my mother dead, only using a twisted way to express sympathy with me because I was taking care for such a dependent person. She chose to do this in this extreme way though I had not expressed any overwhelm to her. But does this woman really think I’d be better off if I continued to look after my mother while a part of me wanted her dead? How could caring be easier if the carer resents the patient for living?

I am fairly sure this woman had not registered my description of my mother’s general state of content. She could not hear a word beyond “bed-ridden”. I am also sure that if this woman had seen my mother when my mother was active enough and frustrated enough to hate the world, this woman would not have dreamed of saying she would be better off dead.

I have been rambling awhile, and I’m not really sure what the point of this blog post is, if  a post must have a point, that is.  Maybe I am wondering why people use the concept of death so easily when applied to people in a state they do not identify with. Why many of us don’t understand that someone may be happy even if he/ she does not possess something we consider essential for happiness. Or perhaps,  why people do not think through what they say.

Or maybe all this verbiage is my way of saying that a life that appears troubled and empty from outside may be very worthwhile to the person living it and to the persons around him or her. That sometimes, the gift of a person’s presence comes in sparkling moments. That, as HH Karmapa said at TED India a few months ago, “there are symbols of happiness in every breath we take.”  And may we all see them, and understand that others may be seeing them in their lives, even if we cannot understand how.


My blog entries of my experiences of looking after my bedridden mother(she is in late-stage dementia) are available here: Late stage care (Caring for mother).

Resources to understand late stage care are available here: Late-stage dementia care page of Dementia Care Notes


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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.

32 Responses to Ramblings on love, hate, and a life worth living

  1. Laura Bramly says:

    Swapna, this is a beautiful piece and very powerful. You said a lot and made many good points.

    I think that your mother still has purpose, and one day that purpose was to let you know that she loves you, and that is amazing. What a gift for you! The problem is how other people see usefulness and purpose. One person’s definition is not the same as another’s. Until we see that people with dementia can and do have purpose in their lives, it will be difficult to change the stigma attached to the disease.

    Your acquaintance might actually have been reflecting her feelings about what she would want for herself if she had dementia or was bed ridden. Perhaps she thought that she would not want to live if she was bed ridden, but transferred those feelings over to the conversation about your mother.

    • Hi Laura,

      Thanks for dropping by and sharing your thoughts.

      Yes, I think the acquaintance was probably using her own fear and horror of being bedridden to make her comments. What I find unfortunate is that many people are afraid of such dependence, when most of us will, for at least part of our life, become dependent on carers. Perhaps we need to understand that care can be accepted with a much grace as it can be given.

      My mother always said she’d never want to become dependent on anyone; she would rather die. But her definition of ‘unacceptable dependence’ kept shifting as her dependence increased, always remaining well ahead of where she was. Dependence is frightening, but death is often more so. And the truth is, my mother is happy enough now, happier than she has been before.

      In a way, caregiving has helped me overcome my fear of becoming helpless and dependent, because I now understand that if one lives with dignity and remains considerate and affectionate, one is never a burden even if one needs help for many activities:-)

  2. austere says:

    I thought it was transference as well, but it didn’t stop me from feeling appalled.

    This is a beautiful post, Swapna. Fragile- beautiful.
    Thank you.

  3. Payal says:

    Hi Swapna,

    I don’t think I’ve commented here before, but I often come by to read your blog. There’s a lot to see and learn here.

    I agree with Austere: appalling is the word! Telling people that their loved ones are better off dead is insensitive any way you look at it. Also, I doubt one can presume to judge the quality of life of someone else, especially if their circumstances are very different from yours. Like you say, your mother is contented and for that she needs to be applauded because we always find it so easy to complain.

    A friend of a friend recently had a freak accident and lost a leg. The past few months has been an incredible struggle for her, but her spirit has been unflagging despite the periods of excruciating pain. There is just no scope of feeling sorry for her or pitying her as she takes care of mundane matters, like getting back to everyday living. So, yes, there is no way to judge how fulfilling someone else’s life is. What matters is what *they* think!

    • swapnawrites says:

      Hi Payal

      Thanks for reading and sharing your comments. Yes, people can sometimes be appallingly insensitive because they do not move out of their rigid viewpoints.

      As you have said, quality of life, happiness, fulfillment–all these are extremely person-dependent. And if we open our hearts and minds, we will find so much around us that inspires and energizes, as your experience shows.

      Swapna

  4. Sandra Fredine says:

    Thank you, Swapna. Your written wanderings are close to my heart.

    I agree with the many perspectives given over a seemingly callous remark and will offer another.

    Many – maybe most – offer opinions based on their own paradigm of ‘happiness’ and ‘acceptability’ and most of those – despite their current concepts or theories on faith or religion seem to resort to ‘heaven’ equating to ‘happiness’.

    My caregiving has garnered comments like, “You’re a saint” or “You’ll earn your reward in Heaven”. Hahaha! I can only :). Are they saying that I, too, would be better off dead? I’m not aware of anyone achieving either without death…but I’m no expert. I do attribute it to their particular believe system that portrays death as a release, a gateway to something better and deserved.

    I just shake my head and smile. The only thing I have come to know is that these diseases have two sharp edges. One is the edge that fogs and frustrates – and the other is the edge that lets them forget and look at hings in child like wonder and amazement.

    • swapnawrites says:

      Hi Sandra

      Yes, I agree, everyone offers opinions based on their own paradigm, and perhaps death is the great release in theirs. Yet, no one really would wish that end on themselves 🙂

      And I like the way you express the two edges of the disease, one that frustrates, and one that fills us with wonder and amazement. If only most of us were able to shelve the overwhelm and see the second edge 🙂

  5. Henri says:

    Swapna, I cried when I read that bit about your mom’s diary entry! I can see how much you love your mom. I am glad you are strong and are able to stand by her through the difficult times, but are also able to appreciate the fact that she looks content. Caring for a parent is tough, but it is also the most natural thing to do, na? I don’t what the point of this comment is, but just brought back memories of my mother. I miss her. I do. Lots of love and positive energy coming your way! Keep writing.

  6. Stuti says:

    I think you’ve hit the nail on it’s head there…” caregiving has helped me overcome my fear of becoming helpless and dependent, because I now understand that if one lives with dignity and remains considerate and affectionate, one is never a burden even if one needs help for many activities:-)”

    Our deep fears are not of death, but of poverty and hence dependence. You’ve overcome that. How cool IS that 🙂

  7. swapnawrites says:

    Hey Stuti, thanks for dropping by. Yes, life is so much simpler if we stop being afraid. I don’t always manage to overcome fear, but one keeps trying…

  8. Eshwar says:

    Hi Swapna,
    Thank you so much for maintaining this blog. Your words show me a better way. They provide me an opportunity to mature and feel more positive in the presence of my father.
    I often feel that my father has sunk the best parts of his personality into the abysses that are forming in his brain. All that has remained behind, I feel at such times, is the shell of a man who was once splendid and loving.
    But from your blog, I’ve learnt that I must make more efforts to cajole the loving personality out of the shell. His love is still there, as pure as before. I, on the other hand, have lost the lever to draw it out. I promise to try and craft one.
    P.S: You might recall offering me your wisdom during the ARDSI workshop last month. I remain much obliged.

  9. Eshwar,

    Thanks for dropping by, and of course I remember you 🙂 I would be delighted if my blog opens up to you, or anyone, the possibility that we can relate to someone with dementia with love, and find interactions enriching.

    For many years, as I tried to handle my mother’s dementia, I focused only on the irritants, the daily work, the difficult, and often hurtful and embarrassing behavior–the sheer overwhelm. That is how everyone around me saw it, too: a task, a duty. It took me years to graduate from that attitude of reluctance and overwhelm to one of calm acceptance of her state. It took even more time to grasp that she was still capable of love and positive emotions if I could provide her an environment that took her abilities and constraints into account. It has involved effort and commitment, but the rewards are definitely worth it. Her occasional smiles touch my heart as nothing else can.

    Wishing you the very best in recovering your loving relationship with your father as you both cope with the disease progression.

    Take care,
    Swapna

  10. Ally says:

    I’m deeply moved by you =) You sure are an inspiration. Wish you best of luck Swapna!
    Take Care,
    Ally

  11. pramada says:

    thank you for posting this swapna. so much of what you say resonates with me…and i know how you carry on…much love

  12. geeta says:

    thanks so much…and to you too pramada, for sharing on FB (that’s how I reached this post).
    Your experiences with your mother are almost the same as we have had with my mother-in-law – including the fight she put up against what I always privately call the clouds in her mind.
    There are days of despair and days when the clouds do part, though this has been happening less often now, after ten years of living with Alz.
    About the insensitive remark from your friend, I can only say there are so many states of being (or non-being, some of us have the privilege to glimpse a few of them…

    • swapnawrites says:

      Thanks for sharing your experiences, Geeta. Yes, we caregivers often experience a resonance when we share experiences…I wish more of us would share, because that way, we would not feel alone.

  13. Akanksha says:

    Swapna its really touching to read this. I have always wondered how you draw strength on a day to day basis to deal with your mom condition. And now to read what she write about you 7 yrs ago, it must have been v v difficult.
    As for people’s comments, they will never be able to understand how attached u may be despite yr mom’s condition. So dont think too much on that. Most people think of care giving as a big burden and the earlier they are relieved easier for them.
    Life is hard for some people an Its been v hard for u but you have taken it so positively. Something for all of us to learn from

    • swapnawrites says:

      Hi Akanksha, yes, it was difficult back then, but once I emotionally grasped how difficult it was for her, things started improving. It was like we were both on the same side, working together to cope with the problem. Thanks for dropping by. Cheers, Swapna

  14. Vandana Patnaik says:

    Hi Swapna,
    It is a very poignant one…very touching and left me misty eyed.
    The lady’s comments might have been scathing but that is the way many behave on hearing of someone in that state.It’s may be her own fear of being in that same state as your mother or it could also be of you.It may be impossible for her to look after someone who needed that kind of care.
    We can never predict future and I wouldn’t want to comment on that lady’s reaction for we don’t know what the future holds for us.But one thing I am certain of is that there are certain people,however /whatever state they are in, we wouldn’t wish them dead in any circumstance.There presence itself is the reason for us to keep us going.
    This is the first one of ur articles I have read, but I am going to read the others as well and soon.
    Keep writing and may God give you the strength to go on loving and looking after ur mum.

    • swapnawrites says:

      Thank you for visiting the blog, Vandana, and for sharing your thoughts. Yes, people are very scared of getting bedridden or looking after someone who is. A few years ago, I had not thought I could look after a bed-ridden person, but when it came down to doing it, I found I could do it. And so far, it had been fulfilling. Maybe people who are so scared of it will some day find they need not have been so scared…

  15. deepti menon says:

    Dear Swapna,
    Your writing left me teary eyed… I admire your spirit and love the way you have described your mom’s condition with so much of positivity. Would you like to send your wonderful piece to the latest Chicken Soup series? It is titled ‘Chicken Soup for the Soul – Indian Doctors’ where they are looking out for heartwarming stories on medical conditions. A piece like yours would give solace to a number of care givers. The editor is Raksha Bharadia, and her mail id is rakshabharadia@gmail.com

    I am sure she would welcome your article. You could use my name as a reference… Deepti Menon.
    Once again, let me reiterate how much I love your style and the truth in your writing.
    In admiration,
    Deepti

  16. Krishnanjali Menon says:

    Dear Swapna

    Your writing really touched my heart, Thanks to FB i got a chance to read , keep up the spirits . I know how it is when people comment things so easily when we are trying to hold on someone close and are care givers. You have inspired us to keep a positive mind . God bless
    Krishna

  17. Fanny Chakrabarti says:

    I admire your spirit and the soul with which you’ve expressed your experience. It never is easy and yet so easy to fall in to the ‘i wish things were different’ trap. I lost my mother to a prolonged illness. Sadly, she had lost the will to survive. She just gave up, leaving us helpless and clueless. I have been ‘looking after’ my in-laws for the last eight months. Both ailing and both dependent for most of their needs. The only real thread that connects us is an innate sense of ‘care’ – am being honest because love cannot just happen, now can it? – that fortunately forms an integral part of me. And, thankfully, it is this and faith in God that keeps me going.
    I must also admit that some of what your readers have penned in touched a chord…to search for all the good and pure that the ailing person once had and still does, deep within the recesses of his ailing body….
    God bless you, not once but several times over.
    best wishes
    Fanny

    • swapnawrites says:

      Thanks for sharing, Fanny. I can feel your pain about your mother losing her will to live– I’ve seen it happen, and it is always sad for people around the person. As for the care you are giving your in-laws, yes, it is our innate sense of care for others and our faith in all that is good and worthwhile that keeps us going…

  18. Pingback: Two years down the line: Care for a bedridden mother with dementia « Swapna writes…

  19. Pingback: My lowered social immunity, unsolicited pity people have for my mother, my wanting to curl away and hide: I need a break « Swapna writes…

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