Some days are good

This is an update to my previous post regarding my mother’s condition; after a two-month-long deterioration, my mother stabilized, and then began showing awareness of her surroundings again, and responding to us on some days.

As anyone who has lived with a dementia patient knows, there are good days, and there are bad days. Before March, while my mother was generally inactive and not talking, there were days when she’d nod, smile, and say a few words. She would clasp my hand and kiss it.  She smiled.  Once in a while, she’d surprise us with a full sentence that made sense. Such good moments were what brightened the caregiving and brought smiles to our lives.

Those good moments reduced and then vanished around March this year.

My mother stopped uttering even a Yes or No and she no longer nodded or shook her head or clasped my hand. She barely opened her eyes when fed, and often refused to open her mouth. She did not wince or show any pain reaction. She did not react even when the technician jabbed her for a blood sample. It usually takes multiple jabs to take out a sample from her, and they have to poke around the needle in her flesh in a way that seems like sheer torture, but she slept through that entire process. The test reports were within acceptable ranges, and the doctor could not find any problem when he examined her. But she was fading, and we could not reach her as she sank into some world of her own.

We continued to talk to her, hold her hand, try and coax her, but at times it felt as if we were intruding, because it was not clear whether she preferred our presence or wanted to be left to her silence. We also kept trying to tweak things in ways we thought she would be more comfortable–wiping off her sweat, making her drink ORS when it seemed hot, and so on–but it was mainly guesswork, because she was not complaining or wincing or showing any happiness or unhappiness.

April passed without any change, and May began. Once in a while, she would open her eyes, but that was all.

Around the third week of May, she started showing small improvements for no apparent reason as such.  She would remain awake when fed. Her mouth no longer had to be pried open; she understood our requests to open her mouth. She did not need as much coaxing and prompting to swallow, though meal times still extended for over an hour because she was very slow.  And she would sometimes smile, or hold my hand.

By now she has reverted to where she had been in January or so, but why, we have no idea.

For example, she sometimes agrees to hear her favorite story. She even seems to enjoy it, though she  often uses the story as as a lullaby, and is asleep before I reach the climax. Perhaps that is not too complimentary to my skill as a story teller, but she looks happy and peaceful, not bored, as her eyes close and she sleeps off 🙂

When I tell her the story (it is the same story every day), I often ask questions and answer them myself, and use a lot of dramatic gestures. Most of the days, she listens as if she has never heard this story, but there are also days when she nods and smiles, as if the story is an old and dear friend she is meeting. A couple of times over the last three weeks, to my story-based question, kitne brahmin the?(how many brahmins were there?)  she has piped out the answer before I gave it, by saying chaar (four).

One day when I was pouring the medicine in her mouth, she made a face and said, Kadvi hai (it is bitter).

Her deterioration and reversal reminds me of an incident. I once met an elderly gentleman to condole him over the death of his wife who had suffered from a number of problems, including dementia. While describing her forgetfulness and confusion, he told me that there were days when his wife would suddenly seem alert, and would even recognize an old friend and mention where they had met last. On such days, hearing her talk coherently, the husband found it difficult to accept that she had dementia, and he would feel hope. Then the next day, she would blank out again.

When my mother seems alert and responds, I think of the day as a gift, a sort of shining of the sun through the clouds, to be enjoyed as it happens without building up expectations. Such moments may not last.

It is not as if she is “normal”, whatever that means in her present context. She is still fully dependent, and everything needs to be done for her. She cannot sit up by herself; she has to be propped up.  She cannot even turn on the bed without assistance. Each meal time takes over an hour, she still mis-swallows and coughs, she is unable to understand and remember most things, she is unable to find the words for what she wants to say.

Her apparent alertness is also misleading, because often this alertness is with respect to some world different from ours. Like the day when I ask her to open her mouth and then I take the glass with her soup near her lips, and she nods, opens her mouth–and then kisses the glass. It happens again and again, and her eyes are bright and she seems alert but she does not understand that the glass is for drinking, not kissing 🙂 She nods when I ask her whether she is hungry, but again she kisses the glass instead of letting me pour the soup in her mouth.

But on some days, the sun of her awareness is bright indeed.

Here is something that happened a few days ago:

A relative expressed her desire to see my mother. I was not sure how to handle that request. I rarely take visitors to meet my mother; in the last year or so, there have been only three such occasions when someone has wanted to meet her. I warned the persons that my mother was likely to get stressed if asked questions, so please could they just say hello and leave it at that. My mother was sleeping on two occasions, and the would-be visitors peeped in and came out, saying she looked peaceful. In the third case, the person I took to meet her was someone she had not known, so I introduced the person as a new friend, and the visit was over in a few minutes.

Fact is, while I believed that my mother found such visits taxing and preferred her normal routine and usual surroundings, it was not as if my mother had told me to avoid bringing visitors to her. Was I imposing my beliefs on her if I discouraged visitors? Then again, why were visitors interested in meeting her–was it to satisfy their curiosity, or out of a sense of “duty”, or because they wanted to feel good about meeting her, or did they feel their visit would cheer her up and give her variety in her boring life? I could not ask people why they wanted to meet her–that sounds rude…

So anyway, I cautioned this lady not to ask my mother any questions, and not talk of complex things, and told her my mother is prone to dozing off in the middle of talking. As it happened, the day the lady decided to meet my mother was one of my mother’s “good” days, and my mother was awake and apparently alert when the lady entered the room. The lady said hello, and asked, How are you, and my mother sighed, nodded, and then closed her eyes. The lady stood there for a minute, and then left.

As soon as the door closed behind the visitor, my mother opened her eyes, and gestured to me to sit. I was amazed. “I thought you were sleepy,” I said. And my mother replied in a full sentence: Neend to sirf bahaana hai (Sleep is just an excuse).

I was really stunned. That my mother used a strategy to evade a situation that was stressful to her and could express it to me so clearly was something I hadn’t expected. Over the next few minutes, I held her hand and told her the same old favorite story and she slept off with a smile on her face.

She woke up a few hours later, very agitated. She tried to speak, but had problems finding the words. After struggling for a while, she managed to say, mujhe naam kyon nahin yaad aate? (Why can’t I remember names?) And it occurred to me that my mother was disturbed over the lady’s visit, and had probably been fretting over it in her dreams.

It took a long while to calm her. Calming any agitated person is tricky, but calming a person who cannot understand things is particularly difficult, because how does one explain? I could not give her the name of the lady who had come, because the lady was not someone my mother had known well, or known in her childhood, and my mother remembers hardly anything of the recent past, even on the best of days.

So I thrashed around mentally for any happy, peaceful memories she could still be having. She showed no recognition of any one them. Her agitation had rendered her breathless and she was clenching my hand as if she were drowning in something dark and deep, her face tense as she was unable to find words to convey her emotions. I switched track and talked of the spiritual teachers I knew she revered, and pointed out to their pictures, which are pasted all over the walls. I talked of how remembering things did not matter, because things changed. I talked of how the only thing that mattered was peace, shanti, and how that could be breathed in with every breath. Along with her, I did some slow, deep breathing.

Forty-five minutes later, she finally calmed down and relaxed her grip on my hand.  Then she fell asleep, a gentle smile back on her face.

This incident left me thinking.

It is clear that on her good days, my mother is able to sense that her memory is not working. In this instance, she knew enough to understand that she should have recognized this lady. She had enough of an instinct to play the “sleep” card to wriggle out of the embarrassment, but that feeling of inadequacy haunted her afterwards, possibly by brooding, possibly in a dream.

One lesson I have derived is that I should avoid any visitors who know her and with whom she could feel inadequate like this. I can now, without hesitation, inform visitors of her agitation, and ask them to only peep in when she is sleeping if they are so keen on “seeing” her. If their intention is to cheer her up, that obviously does not work.

But I have also been wondering about the way my mother chose to withdraw in the apparent interaction by pretending to sleep. If her chosen method for stress is withdrawal, does this explain her deterioration in March?

Fact is, we have no idea what caused the changes in March and May–the earlier extreme deterioration, and the reversal. I had pondered that it was probably a combination of subtle things around her or inside her, some problem that corrected itself. Or maybe some changes that happened inside her acted like two negatives making a positive.

But now I wonder whether something had happened that made her feel very scared or threatened, and she just withdrew.

Many years ago, when my mother used to watch TV, she often confused between real life and the TV soap opera type of dramatic statements, and therefore felt threatened every time someone shouted in the TV serial. Even after we removed the TV, this confusion arose whenever she heard a loud sound. She would accuse the attendant of hitting her if there had been an unexpected sound at night.

We have  made a safe environment around her now, with a predictable routine, companionship, relaxation. But some things cannot be prevented. Loud sounds of borewells being drilled on neighboring plots. Trucks noisily unloading heavy construction material at night. Loudspeakers blaring announcements for “melas” held within this and other socities. Diwali crackers. World Cup fireworks celebrations. Loud shouts in the corridor.

And her own nightmares, which we have no idea about.

My mother lacks the ability to know these are unimportant and transient sounds and not dangerous. She cannot emerge from them. She lacks the ability to seek help for any danger she perceives. Was her silence a reaction of extreme withdrawal because of some such event or events we were not even aware of?

We will never know what caused her deterioration, and her emergence. Suffice to say that whatever it was, an illness we never discovered, a minor imbalance in the body, or the perception of a a fearful world, she seems to have come out of it, and is back to where she was before that decline. I am grateful for that.

That day, as I was helping her through her extreme agitation, using every bit of what I knew of her, I was also wondering how such agitation would be handled in a respite care. No amount of debriefing by a family can convey the full extent of knowledge that people close to a patient have of her; the staff would have been severely handicapped, howsoever sincere and well-meaning they were.

Whatever, it is not easy for anyone–the patient, the family, the institutions involved in the care…

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.

5 Responses to Some days are good

  1. austere says:

    Not easy at all.
    I squirmed reading it.
    And yet those complete sentences, perfectly correct.
    Wonder what must have happened neurologically when she took a bit of a break.

    • swapnawrites says:

      Makes me wonder a lot, too. She’s withdrawn before (for a week or so at a time), typically after a hospital visit, but once after she overheard someone talking about an accident and assumed she was unwell and in a hospital though she was at home. How is one to know when the decline is because of physical reaons and when it is caused by fear and withdrawal and surrender? It can happen again, anytime.

  2. Doreen Platt says:

    I am on the other side of the coin from you – I am living with dementia. As such, I find it very heartwarming to read stories like yours that show how much you care about understanding what is happening in your mother’s head and how you can improve her quality of life. Sometimes caregivers get so overwhelmed with the daily care, they end up just trying to take care of physical needs and that takes away the dignity of the one who is living with dementia.

    Yes, sometimes I stutter and can’t find the right words and sometimes I walk into walls which looks silly, I know. And yet, when I do things like that, what I appreciate most of all is being allowed to retain some dignity.

    Doreen

    • swapnawrites says:

      Doreen,

      So happy to see you here, and to read what you have shared.

      You are so right about caregivers sometimes forgetting about the dignity of the patients. Hopefully, as we hear more about “living with dementia” from persons suffering from it, we will develop an appropriate “instinct” to maintain the balance between giving patients the space and dignity they need, while also knowing when to help and how to help.

      Also, the fact is that we are all at risk of dementia as we grow older. A sobering thought, and one that should make caregivers more sensitive….

      Again, thanks for sharing your experience, and take care,

      Swapna

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

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