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

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

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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.

Keeping her happy: Challenges of late-stage dementia care

My mother has slipped down some more on the incline of deterioration in her late-stage dementia, a slipping so gradual it is difficult to register it as it happens. But it was just two months ago that she enjoyed the story I was telling her every day and then the frequency tapered slowly, and now it has been several days since she indicated she’d like to hear the story. She sleeps most of the time, often not opening her eyes even when we feed her.

Around two months ago, when asked a question, my mother sometimes nodded or shook her head, or turning her face away. Once in a while (if the question was very simple, like, “Are you feeling cold?”) she’d even say a word or phrase (Haan) in response while nodding. She would nod vigorously if I asked her whether she wanted me to talk or to tell her a story, but sometimes she’d shake her head to indicate she wanted to rest instead.

We deciphered (hopefully correctly) her choices and her moods by asking simple questions and watching her body language.

When not sleepy, she enjoyed company and people talking to her , though it was often clear she did not fully understand the content of what was being said. For example, I don’t think she understood the details of the story (and it was always the same story), but she understood that someone was telling her a story, and showed her liking for that companionship and affection.

Now, it is increasingly difficult to understand her desires because most of the times, she does not respond (through words or even body language) when asked a question.

After her last round of blood tests and checkup, the doctor told us she is doing well as far as the physical parameters are concerned, and that the minor imbalances (the sort she has often had before) were within acceptable range and not sufficient to explain the change we were seeing. He agreed that she is declining in terms of her responding. “What can we do?” I asked. He explained that such gradual deterioration was natural given her dementia, and there was nothing to be treated as such. “Keep her happy,” he said.

I don’t think we human kind are very good at being happy. Or keeping others happy.

A year later: One year of care for a bedridden mother

Last October, my mother became bedridden, a consequence of the progression of her dementia. Frankly, I had always dreaded the possibility of taking care of someone so fully bedridden, and everyone I knew dreaded such a state, too. With a year over, I guess it’s time to share how she reached the bed-ridden state and how home care for this has been this last one year.

Looking back to the months before she became bedridden, I am surprised we didn’t realize how much she was deteriorating. She was facing obvious problems while walking; she would not lift her legs, even on being prompted. She would drag a leg only after a lot of coaxing, not lift it. Sometimes she would move the same leg twice; for example, she would move her left leg twice while the right leg stayed back, and we had to yank her upright or she’d have fallen. Every trip to the bathroom was an ordeal for her and for us, and soiling became common. She reduced speaking, and barely showed any interest in anything. We hoped she would improve, and kept trying to talk to her, playing games, and so on, telling ourselves that she was tired.

On a day in late September, while sitting in a chair she fell sideways at a strange angle and bumped her eye on the chair’s arm in a contortion a circus performer would have envied. The eye turned alarmingly bloodshot; frightened, we called the doctor who prescribed eye drops to start on and then came for a visit. She examined the eye with her torch and told us she didn’t think there was any deep injury, but recommended we get my mother checked up the next morning by a specialist who would have the right equipment to do a proper check. So next morning, there we were, at a hospital, my mother in a wheelchair, flanked by us.

Everyone at the hospital was very nice to us. The attendant who pushed the wheelchair talked sweetly to my mother, the receptionist talked sweetly, the nurse, the doctor, the doctor’s intern, all were extremely helpful. My mother looked piteously at them and held out her hand; by turns, they took her hands and squeezed it reassuringly.  We confirmed that the injury was superficial, and that nothing needs to be done, and came back.

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.

Palliative care in dementia

In a support group meeting I attended in December 2009, I was introduced to the concept of Palliative Care and how it may be applied to a patient with dementia.

The thrust of palliative care is ensuring the patient’s quality of life, and keeping that in focus while taking decisions such as how aggressive medical treatment should be.

A few years ago, I had assumed that medical intervention is a must. If one has an infection, an antibiotic course is inevitable. Last year, in September, my mother’s lab results showed a urinary infection, and the doctor started her on an antibiotic, based on the culture report. It did not work. Again, based on the fresh culture, a new antibiotic was given. Again, no effect.  Medication for the infection was discontinued finally, on advice of the specialist, after confirming that my mother was not exhibiting any symptoms of the infection (asymptomatic infections are often not treated).

While we were lucky that the infection was asymptomatic and treatment was not necessary, the incident still left me shocked. I had not envisaged a situation when, despite the sensitivity report showing the antibiotic was suitable, the medicine would not work. It had not occurred to me that medicines worked only because the body processed them in a way that allowed them to work…that the body can reach a point where it cannot use the medicines fed to it. Suppose, I thought, the infection had not been asymptomatic? Would the treatment have become increasingly aggressive? What is the trade-off between suffering symptoms of a disease as against the stress on a tired, aging metabolic and excretory system which is plied with stronger and stronger medication?

As my mother becomes frail, I can see a number of such trade-offs that will need to be made. She already has swallowing problems, and these are going to increase. Aspiration pneumonia is likely to occur. She is bed-ridden, and though we are using an alternating-pressure air mattress, we are apprehensive about bed-sores. Then, there are other infections, like chest infections, that can occur however well we guard her. There may be a stage when she cannot swallow enough food to sustain her. For all these situations, there are aggressive approaches,but these do not always work, and sometimes they worsen the situation by introducing other problems.

As a lay person I know very little of the trade-offs, but I am keen to understand enough so that when a doctor suggests something I can ask the right questions and understand how the treatment helps, and how it may not help. The concepts of palliative care as applied to dementia seem relevant and worth studying, and I am searching for comprehensive documents that discuss these.

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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Decision making for dementia patients

As I mentioned earlier, one of the most frightening parts of caregiving for me is taking decisions on behalf of the patient.

In most aging, the elder takes his or her own decisions, but in the case of dementia patients, decision-making is the caregiver’s responsibility. Is the patient in pain or not, and should I call the doctor? What, exactly, is paining, and how much? Did the patient’s pain reduce with the medication? If the doctor offers a choice, should antibiotics be given or not, if the patient may not benefit from them? How aggressive and invasive should treatment be? Should the patient be hospitalized?

My current phase of caregiving may require tough decisions that my mother can no longer participate in, as she just does not understand anything. There is so much confusing information around, so much “there is no right answer” type of advice, so many pros and cons to weigh.

Let me illustrate with an example.

Moving forward as a caregiver, accepting new realities

I use this blog as a means of introspection, mainly with respect to my caregiving role and its impact on my choices and attitude. As January draws to its end, so does my month-long one-blog-a-day exercise it is time for me to consolidate my thoughts and get ready for the year stretched in front of me.

A number of my blogs so far have described the current status, and examined the past to see what  I did, and what in hindsight), I would do differently if life pressed rewind. And it now makes sense to see what lies ahead to incorporate all I discovered about myself into my future.

One lesson I have learned is that there are no easy answers for what is right or wrong, but being better informed about the various option, and their pros and cons, will allow me to make choices I remain comfortable with, even in hindsight. So yes, I will read up more on topics that are relevant now.

Bioethics and dementia

Just saw this site, Nuffield Council on Bioethics, and read their work on dementia.

I have only one word. Wow!

Sometimes, someone catches every thought you have or could have had.

Every section, every point, every sentence resonated. I wish  could make this compulsory reading for…oh, well, everyone, because dementia and caregiving is something that affects everyone. Anyone can get dementia, anyone can be thrust in the role of a caregiver. And even if not, there are people around you who are patients or caregivers, and they deserve a life, too. What I loved about these reports is that they address a wide range of impacts. They don’t just talk about the patients’ right, they acknowledge the carer, and they acknowledge the role of society in it all, even that of shops and restaurants a patient may visit (or should be able to).

Dignity. Ethics. The right to life fully, despite the condition. The dilemmas and difficulties. The carer’s own life, and the balancing act. How every case is different. How difficult it is. How it hurts. What can help. It’s all there.

I thought I would place a summary here, but I can’t do justice with a summary, so go ahead to the page and have a look yourself….

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this month, a year ago

Last year, I blogged daily through the month of January, and I always felt I had a lot to share. This year, as I go through this a-blog-a-day month, I find myself in a very different frame of mind. More mellow, with less to say…

A few posts ago, I mentioned how much has changed in my mother’s state in the last year. As dramatic, as important, has been the shift in my perception and attitude. Last year, around this time – give or take a month or two – I was busy sorting out my approach to my mother’s challenging behaviors. She would have mood swings, she would say things that hurt, she would swing dramatically between sweet coöperation and gentle behavior, and angry, frustrated words and actions. Thinking and blogging and reading – these helped me explore what could be happening and how to handle it.

thumbs down

My mother holds three Masters degrees (Education, Philosophy, and Psychology).  Being highly educated has been, to her, a very important part of her personality. She considered anyone uneducated as less intelligent and just…less of a person.

When she saw someone use a thumbprint instead of sign a document/ cheque, she would wrinkle her nose. Being an अंगूठा छाप (one who needs a thumbprint for a signature), was, to her, the ultimate insult.

Things have changed now. She cannot sign any more, not even hold a pen correctly. She does not remember her name, or remember what writing is.Today, with great hesitation, we needed her thumbprint on a life certificate that the authorities require. I was dreading her reaction  —  but she did not seem to register what was happening as the doctor (with an expertise that shows this problem is common enough) pressed her thumb on an ink-pad and took its impression.

I don’t know whether to feel relieved that she did not mind, or to feel that her not minding is yet another tragedy of her situation…

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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going down, a day at a time

Looking back on last year’s July/ August/ September, I find myself wondering why I did not notice my mother’s steady deterioration, and the only reason I can get is that I did not want to see the reality.

For example, over those months, my mother’s walking worsened gradually, such that by late September, she was not really walking–she was being dragged along as we ‘walked’ her to the toilet.

The problem was, she could not remember that she was supposed to lift her legs and place them on the floor again for each step. Sometimes she would not lift any leg, just gape at us when we asked her to. Sometimes she would lift the left leg, take a step, and then lift the same leg again.  I would keep talking to her, keep cueing her by patting first the left leg, then the right. There was no improvement, and then came the day when it took two persons to make her ‘walk’ to the bathroom, and we accepted the fact that she was not walking.

I had been told by a caregiver whose mother had Alzheimer’s, that one day, her mother just stopped walking. Another caregiver, again with a mother with dementia, said something similar. I remember that day when I sat next to my mother, in a state of shock, finally registering that my mother had stopped walking – probably because she forgot how to.

It took another month for me to understand that her ‘forgetting how to walk’ was probably not easy to reverse. When I tried to study the act of walking from the perspective of someone whose brain is affected by disease, I began to appreciate  how very complex the activity of walking is, the multiplicity of tasks it involves, and the degree of coordination it requires. Strange how much we take for granted regarding what we do with our bodies and minds.

My mother has not walked a step since October beginning, and is on the bed all the time, except for the times we lift her and place her on a chair for variety.

Now I am happy enough if she wiggles her toes when I ask her to. How standards change 🙂

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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Palliation

A support group meeting I hope to attend will be including an expert who will talk on palliative care. I am really looking forward to this meeting. Such meetings provide me a forum to share my experiences and insights with others, and also get input from them. There’s nothing as effective as interacting with fellow-travelers on this caregiving journey, where we get a compassionate and helpful environment to understand how we can handle our roles effectively.

The meeting is particularly welcome right now because of my changed caregiving situation.

Around three months ago, my mother slipped into a bed-ridden state. She nods and smiles occasionally, but does not talk, except for a word or two–around five words a day 😦  .  She cannot prop herself up on bed, or turn sides without assistance.  As I, along with the medical and nursing resources available to me, examine ways to improve her situation, I am also trying to adjust to this new reality. Stuff that was priority a few months ago seems trivial, or at least, not important in my immediate context, and I am redefining my life.

One casualty along the way has been my blogging. It is as if I had decided that I will blog only when I am free to do so, and when I am feeling good and relaxed enough to compose something. I suspect that’s not going to be likely for a while, and so I am wondering whether I should blog anyway, even if the posts are small, to share my current caregiving situation and the thoughts it brings to me. I haven’t decided yet, but perhaps there is a merit in sharing this part of my life as it happens…

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