Impermanence, Death, Closures and Continuity through Body Donation

In brief, my mother died at home two days ago, on Sunday evening from aspiration pneumonia. In accordance to her wishes, I donated all the parts of her body that I could. Her eyes went to the eye bank; her brain went to the brain bank for research; the rest of her body went to a medical teaching hospital for students studying anatomy. Again, as per her wishes, her body was at no point put up for viewing, and no other rites were held.

These various body donations put a dignified, respectful and heart-warming end to a life that had been racked with challenges and deterioration for many years now. My mother looked peaceful, and it was the sort of end she always wanted, and I was glad I could respect her wishes.

Sharing below some of what happened.

The day started much as normal. My mother had been stable but deteriorating. The March beginning blood tests were normal. She had problems swallowing and would sometimes make gurgling sounds; they sometimes subsided in a short while, but sometimes needed medicines, including antibiotics. My mother was spending most of the day sleeping and not showing any interest in people around her most of the time.

It was around mid-morning on Sunday that she started the gurgling again. It seemed worse than the minor kind that subsided on its own, so we made her lie on her side, and called the doctor. Her expression showed no discomfort in spite of the gurgling sound, but her breathing was shallow and rapid. After a while, her body seemed warmer than normal.

Hubby and I surfed for gurgling while waiting for the doctor. We downloaded pages and PDF files with scattered, even contradictory information. Some people said gurgling came and went, some gave the gurglers just a few hours or days to live after it started, some gave them a few months, some said there was no correlation. Some explained that gurgling sounded bad to the family and worried them, but was not actually a hurtful experience for the patient. One document cautioned medical practitioners not to use the alternate term for gurgling (death rattle) in the presence of family members.

The doctor came, checked her, made me hear the gurgling through the stethoscope placed on her chest, prescribed antibiotics to be given via IV. He initiated the process of a nurse coming over with the IV stuff, while hubby went to buy the medicines. After a while, my mother’s gurgling reduced, and she seemed very tired. I tried to talk to her, but felt she wanted to rest. We cleaned her, and let her rest. Things seemed better with her. Meanwhile, we were following up for the nurse with the IV, and as soon as we realized the nurse would be arriving shortly, hubby went to my mother’s room to tell her that.

She was not breathing.

Read the full post here

Confused, disoriented elders who wander: what can be done, and a video with tips.

A few days ago I heard of an incident that had an unfortunate hum of similarity with many such incidents one hears of: an elder was found dead in a lake near his home; he had probably slipped in, but no one really knew. I was told, “He had been wandering for months. What could they do!” The way of speaking implied that such tragedies are inevitable once someone begins wandering.

We’ve all heard stories of some seniors who start getting confused and disoriented as they grow older, of their wandering off looking for homes demolished decades ago, looking for people and places that no longer exist, wanting to do things like go to office when they have retired years ago. We’ve heard of such wanderers being found after a few days, injured, starved, clothes tattered, with no one knowing what happened in the interim.

We’ve heard of families still waiting for the wanderer to return.

And that occasional sentence, What could the family do! uttered as a statement of hopelessness, and not as a request for suggestions.

Yet, while the tendency to wander may happen, wandering and tragic consequences are not inevitable. There are things that can be done.There are ways to reduce the chances of such wandering, and there are ways to improve the chances of finding a person if he/ she wanders. These are not fail-safe ways, they may not always work, but a reduced probability is worth it, no?

The problem of wandering is so common that I find it strange that we don’t have a more vigorous discussion on tips and tricks for it. Somehow, I suspect that till someone close to us wanders, we assume wandering only affects others; we don’t think it could happen close enough to hurt us. Perhaps the problem doesn’t seem immediate enough to engage us. But the problem of wandering is best tackled by reducing the chance of someone wandering, by ensuring they always carry an identity, and by having quick ways to locate people who wander.

And here’s the thing: we cannot prevent wandering if we only read tips about it after people wander. Tips must be available widely so that when an elder acts confused and seems prone to wander, family members don’t shrug helplessly, saying “What can we do if she wanders!” in a way that shows defeat. Instead, they genuinely ask around, “What can we do if she wanders?” because they know they can get suggestions and solutions.

When my mother started getting confused and disoriented enough to start wandering, I had a tough time. I tried explaining to her that she should not wander; it failed, because she did not see herself as wandering. She was trying to see who has rung the doorbell or walked past in the corridor. She had stepped out for some work, except that she forgot what it was. I would dash out to catch her before she hurt herself (she had balance problems) or got lost, and every time she would get angry at me for stopping her from what she wanted to do. (Looking back, I could have found better ways to distract or persuade her). I tried to make her carry a tag; she got angry again. Once, I asked a neighbor to sit with my mother for around ten minutes as I caught up with an outside errand; I returned to find the neighbor had left my mother alone because “Auntie promised me she would not wander.” My mother, meanwhile, had wandered.

So I started making sure she was never alone at home, and I would lock the door from inside. My mother complained to some friends who then scolded me for mistreating her. “I would not like to be locked in,” one elderly man said. “My children would not dare to do this to us.” This was after my mother’s diagnosis and I explained that she got confused, she had a balance problem, even a small accident could cause a fracture, or she could get lost. He assumed I was some control freak out to trouble my mother (too many TV serials with bad children?) One neighbor even egged my mother to sabotage my efforts and demonstrate her “independence” by walking out, so much so that my mother would sit on the sofa waiting for the moment that the door was unlocked so that she could dash out of the “jail.”

BUT: No one suggested anything I could do to reduce the wandering 😦

The funny (sad?) part is, all these persons who were critical of my (unskilled) attempts to keep her safe, all of them had known of some wandering episode of someone or the other. They knew some people wandered; they just didn’t think my mother was the “sort who wandered” even though she wandered. Because, “Auntie seems fine” or “Auntie used to help my daughter in her studies” or some such thing.

We definitely need more recognition of the fact that people who seem normal in short interactions may also wander.

And we need to get cracking on sharing tips so that when seniors start showing some confusion, some disorientation, families know of these ideas and can implement what is suitable, so as to reduce the chance of an actual wandering episode or tragedy.

An example: A few years ago, a lady wandered because of a door left unguarded for a few minutes, but the family had stitched a label with the name and phone number at the back of her nightgown, and a passerby called within minutes that he had spotted a lady wandering; she was brought back safely. One small action, one small tip, and look how it averted a tragedy! When I heard of this incident, I remembered my futile attempts to make my mother pin an identity to her pocket and her angry protests; I had not thought of stitching a label at the back of her nightgown, at some place she would not notice it.

Yes, we need these tips pooled and talked about.

Two months ago, prompted by my concern about wandering, I had prepared a video with tips on wandering, and also written a rambling blog entry about my concern for wandering here: Diverse responses, networks of concern and support, problems like dementia and wandering. Recently, I created the Hindi version of the wandering video to make the tips and suggestions accessible to a wider audience. I created the video as part of my work on dementia, but the tips would apply to any confused/ disoriented person

This, friends, is my way of adding to the pool. But information can reach families that could benefit from it only if people spread the word. It may seem like a small thing not worth doing–why bother, let others share the link–but perhaps one person you tell, one tip they employ might prevent a tragedy. Or they may get inspired and think of some more tips and share them around. It could begin a conversation, the sharing of a concern that would avert tragedies. And frankly, none of us is immune from such tragedies…

The Hindi wandering video is here: (If the player does not load, you can see the Hindi video on youtube).

The English wandering video is here: (If the player does not load, you can see the English video on youtube)

And if you don’t really believe that wandering is a real problem that it hits people unawares and can lead to tragic consequences, have a look at this presentation by Sailesh Misra of Silver Innings which includes real life examples (identities changed) of wandering episodes in India: Wandering and Missing Senior Citizens: Why does this happen and what to do then

And if persons do wander and get lost, here is another link from Sailesh you may find useful: Blog for missing senior citizens.

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Sharing my personal experiences and thoughts on youtube

Whenever a caregiver says he or she wants to do something about dementia care, my standard suggestion is that they share their experience, not just the rosy parts, but the challenges. Often such sharing is difficult when one has moved on and found one’s caregiving pace and peace; it opens wounds, painful memories one would rather set aside, but there are persons who would benefit by knowing that they are not alone in their agony phase, and that it is possible to come out of it. So I suggest talking, blogging, putting up stuff on Youtube.

So when, a few days ago, I chanced upon a recording of an interview I’d give in June 2009, I figured I should do something about sharing it. I’m already used to sharing my caregiver experiences through my blog, through face-to-face caregiver sharing sessions, through newspaper interviews.

But this was a video recording, and it was almost three years old, and as I struggled to figure out format conversions, and added “question” slides and other stuff to edit it and structure it and make it youtube-ready, I found myself strangely moved, to a point I was paralyzed by grief for some hours.

You see, in this interview, I’d been at the best phase of my caregiving. My mother clearly enjoyed my company, the attendant looking after her was affectionate and competent, and although I had made a lot of compromises in the rest of my life to provide my mother what I call an “empowering” environment, they all seemed so worth it.

In one segment of the interview, I even commented on how my mother’s dementia was not progressing much.
This was June 2009, yeah.

And just four months later after some physical decline in walking and some other setbacks, my mother was bedridden. By October 2009, my mother was completely bedridden, unable to get up for anything (and yes, that means not getting up even to go to the toilet).

I sounded so happy with the current state in the interview. Trying to edit it and collate it was an intense reminder, and it hurt to remember those days. I was suddenly missing those story-telling sessions, those games. But life moves on, and I guess one should grab one’s happiness when it happens, because I’m not sure one can ever say how rapidly the situation may decline. My mother’s just recovering from one bout of chest congestion, she continues to sleep bulk of the time, and it is only very seldom that she shows any cognizance about my touch or voice.

Ah well. Anyway, here it is, 14 minutes of a time capsule. (This was recorded in the days when I was just starting to get active as a volunteer and as someone talking about awareness and all that) :

(if the player does not load, visit this youtube link directly)

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Forcing caregivers into a one-dimensional care role

While it takes time for people around a dementia family to accept that dementia is being caused by a disease, an interesting (read: sad) effect is that when people accept the importance of the caregiver role, many also assume that the primary caregiver’s life should revolve around care, and that he she should not and cannot do anything too different from caregiving.

To explain what I mean, let me share some things I have been asked/ told when seen outside home by people who knew my mother had dementia:

  • Oh, you are here, but what about your Amma? Is she alone? Who is with her? Who is taking care of her?
  • I know you have offered to help me, but I don’t want you to neglect your Amma to do my work.
  • I don’t understand how you can go out when your mother is so unwell. You should be with Auntie.

Typically, these statements come from persons who do not know my mother at all/ have never met her, and to whom I have explained the care arrangements around my mother umpteen times and so they know that I spend quite a bit of time with my mother. But that’s not enough for these caregiving purists.

Though I remain polite when subjected to such statements, I do feel unhappy at such comments. Read the full post here

Active, visible elders, and inactive, tucked away, hidden elders

This is about some thoughts triggered by a senior citizen event I attended, where the hall was full of articulate, well-dressed, energetic elders (some came with younger relatives), all animated and social. My first response was a general happiness, but that feeling was short-lived as I was swept away almost immediately by a tremendous surge of loss because I thought of my mother, who had been such an intelligent and energetic person, and I wondered how our lives would have been if she had not developed dementia. Some weeks have passed since that function, and I have had time to mull over that experience and my response to it…

As I shared with some online caregiver friends immediately after that incident, I was so swept away by the sense of loss that day that tears prickled my eyes and I had to blink them away. I could not concentrate on watching those senior citizens accept prizes and sing and all that; I could only think of my mother and the past several years. I remembered how she (as my re-examination of past clues shows) had started experiencing the dementia gaps and setback well before the diagnosis, and had started withdrawing, hiding, covering up, raging, suspecting she was going crazy and therefore blaming everyone….trying to view those years as they would have been for her was terrifying.

I left the function early and could not get rid of that horrible pit in my stomach for a few days. I thought I could then understand why so many people have problems understanding that my mother’s problems are genuine; they have seen “normal” ageing, and want to think everyone ages that way, and I wished I could slip back into that comfort of normality but alas…

The sadness I felt for was not just for my mother, it was also for myself, and for everyone who experiences this loss as patients, as family….

Read the full post here

Of Mom, and a story about dutiful worlds

Centuries ago (okay, around fourteen years ago), after my father’s death, my mother was convinced that my sole task in life should now be keeping her happy. She wanted company. All the time. She would allow me toilet and meal breaks and meal-cooking breaks, and I could take off time when she was resting, but if I dared say I had to go out for work, I’d be subjected to a lecture on duty towards her, and on my greed to want to work.

This was back when no neurologist we consulted had bothered to tell us about dementia or even cognitive decline, though my mother had complained to them about memory loss. We had no idea that she was having problems staying oriented and in understanding things, let alone changing her way of thinking. We have no idea that she probably wanted familiar faces around her all the time because of those (unstated) problems.

Possibily because she grew up in a rather well-to-do family, my mother had always believed that anyone who worked for money was greedy. That people who worked in jobs did so only for money, which was a filthy thing to do. She had a phrase she often used to express the “greed” of persons who worked hard in paying jobs: निन्यानबे का फेर (ninyaanbe ka pher, OR, the trap of ninety-nine).

It’s an interesting concept. Basically, someone who has 99 rupees will want to earn one more rupee to make it a round 100, and that wanting a bit more to round it off neatly will keep the person on the grind. A bit like Tolstoy’s How much land does a man need.

After my father’s death, my mother began commenting on my being in the निन्यानबे का फेर trap very frequently.

Read the full post here

Update on my bedridden mother

It’s been a while since I wrote about my mother, and that is because nothing much has changed. People I meet often ask me for updates, “How’s your mother?” and my answer has been the same for the last two years, “She’s stable, okay, but slowly deteriorating.”

Here is the status update. She is still alive. She is still bedridden. (No miraculous reversal has taken place). She talks maybe, a couple of words every week or so, nods or shakes her head sometimes, and the rest of our understanding of her needs and wants is essentially guesswork or our watching for the miniscule shrinking or relaxing of her muscles.

Blood test reports show her health as good. Her hemoglobin count would be the envy of many. Her skin is fragile but smooth and soft for most part (substantially smoother and softer than mine, but I am not asking to swap places). She sleeps most of the time. Once a week or so, she nods when I ask her whether I should talk or tell her a story, but I am barely past the introductory paragraph of the story and she’s nodded off. No, I am not that bad a story teller. I am not boring her to sleep. I think all voices to her are lullabies 🙂

Swallowing is still a problem for her. Mealtimes are typically 45 minutes to an hour, every gulp a challenge for her, and also for the person feeding, because we have to know whether she swallowed the first mouthfull of food before we pour in the next mouthful (otherwise her mouth gets overfull and she coughs horribly because the food goes the wrong way).
Read the full post here

Questions people ask, and the invisibility of problems and solutions related to the twilight years of helplessness

So okay, this bedridden care challenge stuff continues to be top of the mind for me. In addition to recalling a lot of related conversations I’ve had with others around it, I also got to chat with a friend currently caring for a bedridden parent. We exchanged woes and anecdotes. At one point, when talking of how little people around us understood about what was involved, we both burst out laughing. Hysterical laughter, unfortunately.

I must hasten to add that, before I was plunged into the bedridden caregiver situation myself (for a father with a hip fracture, and well over a decade ago), I’d behaved as if bedridden persons and persons who care for them were a category of persons I had to look through. Reason? I had no clue about what that sort of life involved (being bedridden, or caring for someone who is). I had more discomfort than curiosity. And I totally lacked the skill of conversing with family members involved in such care. Should one enquire after the patient, was that polite, or was it politer to pretend no such entity existed? Should I behave as if the caregiver was living a normal life, and discuss TV serials, or should I be oozing with sympathy, or asking for descriptions? What was acceptable, what was normal in such interactions? I found it far simpler, instead, to avoid the caregiver.

Again, it was not as if I thought I’d never become a caregiver for an elderly bedridden person. Nor did I think I would become a caregiver. Basically, I just didn’t think. Didn’t want to, didn’t need to. There are many ways to walk down corridors to avoid people.

Which, possibly, is why when I first got plunged into such care I found myself clueless. I suspect I’m not the only one thus caught unawares.

Now that I’m on the other side, I am not particularly surprised when people look embarrassed when they learn that I’m a caregiver for a bedridden person. Nor am I surprised when they seem clueless…

There is, of course, a commonality in the questions people ask. I’m sharing some below. 
Read the full post here

All in a day: what care for a bedridden mother involves

My mother’s attendant (an excellent, competent and empathetic worker) is off to her village for a few weeks, and hubby and I are handling my mother’s care 24×7. My misadventures with the use of other trained attendants (and substitutes) is already well-documented (read this blog entry: Trained attendants for dementia home care: sharing experiences), and as ever, this time too, we’ve decided to handle the care ourselves rather than run around to agencies, pleading for another misadjusted, negligent, untrained, unhygienic attendant for the stop-gap arrangement.

In a post I made just a few weeks ago, I mentioned that late-stage care is very different from care of early and mid-stage dementia patients. I also mentioned what care involved, but didn’t quite describe the impact on the persons giving the care. But today, with my husband off for work for some days, and as I try to mentally and physically adjust to handling the care solo, the nitty-gritty of care is all I can think of, so that’s what this post will be about.

A few years ago, when my mother was in mid-stage dementia, my main challenge was handling her confusion, disoriented, rages, and despondence. I also had to prevent her from hurting herself, which often needed dashing to hold her when she would try to walk without support (because she had forgotten about her balance problem). I needed to help her bathe and eat, and though she sometimes resisted or argued, she cooperated at other times. She wanted to remain clean and well-fed; the only problem was, she had forgotten how to achieve all that. It was tricky to support her while walking, but I learnt techniques that were not too tiring. We managed, she and I, with the help of grab bars, stability exercises, and sheer luck.

My emotional connection with my mother during all this was sometimes positive, sometimes not so positive, but at no time did I forget that she was “there.”

Now that my mother is bedridden, the required caregiving is heavily physical. Care starts at 2:00 am, when her diaper is checked. If it hasn’t leaked, she just has to be turned, an activity that can be done using just a night light. If the diaper has leaked, that means removing the soiled diaper, removing the soiled underpad, clothes, sheets, cleaning and drying and powdering her, putting fresh sheets, clothes, diaper, underpad, all of which requires more strenuous and repeated turning this way and that, under the glare of a light, waking her up. Manipulating a diaper out and in is tricky because she locks her knees tight and it takes quite some energy to prise them open sufficiently to thread through the diaper flap. Keeping her steady enough to Velcro the diaper needs a lot of holding her straight, too. Often, she resists and glares. Or she lies there, lump-like, passive, unwilling. She was asleep, remember? This is intrusion.

Read the full post here

Two years down the line: Care for a bedridden mother with dementia

My mother often told me stories when I was a child; while I have forgotten the details, some images linger on. Like the one of a delicate, sweet princess who was so loved and pampered that she never had to put her feet down on the floor.

It is almost two years now that my mother has been the princess now, bedridden as she is, and in late-stage dementia. We try and give her all possible comfort though she rarely utters a word to explain what she wants. I am not sure she feels pampered, though. For it is not by choice that she lies on bed and cannot even turn, nor is her silence her choice.

I have described this stage of my mother’s dementia in previous posts (you can read the entries chronologically is you check out the page here, and read from bottom up (sorry, but that’s the way blogs work). The milestones are covered in A new phase of caregiving: a bedridden mother, Ramblings on love, hate, and a life worth living, A year later: One year of care for a bedridden mother, Enjoying fun time with my mother, Keeping her happy: Challenges of late-stage dementia care,and Some days are good.

But as we complete two years, it is perhaps time for another update, even though nothing drastic has happened.

Most volunteers and organizations who aim at supporting family caregivers of persons with dementia focus on early and mid-stage dementia. Challenges tackled are typically related to agitation, wandering, aggression, and other difficult behavior, and volunteers counsel caregivers on preventing or coping with these, or on enriching the life of patients through reminiscence therapy and activities and things like that. Caregiver manuals typically skimp over late-stage care, possibly because in many countries, patients in this stage are cared for in institutions.

Not so in India, where almost all care for all stages happens at home.

Read the full post here

Trained attendants for dementia home care: sharing experiences

In my March 2011 caregiver survey, many respondents mentioned issues related to trained attendants for dementia home care. Since then, I’ve gathered some information on specific problems and wish lists, but my efforts have been slowed down, ironically, because the trained attendant who helps me care for my mother went off on leave 😦

Yes, folks, trained attendants are a critical element of dementia home care.

Before I continue, I’d request you to spare a few minutes for, to share your own wish lists and problems related to trained attendants. No personal details are asked for.  (ETA: The survey is now closed, and the link has therefore been removed)

Now on to briefly narrate my own successes and failures in using attendants (allegedly trained) for helping me care for my mother…and some lessons I’ve learned along the way.

As in most dementia cases, I became a caregiver without realizing I was one, when my mother started exhibiting the problems typical of early stages of dementia. As she had not reached the threshold when a neurologist was willing to give me a diagnosis, I’d just be told: “This is common among elder people.”

Because I was ignorant about a medical reason underlying my mother’s strange and difficult-to-handle behaviour, I assumed such problems were part of ageing, and wondered how others managed and retained their sanity. I did not know there were caregiving techniques that could be applied.

My mother would forget to eat lunch left for her in a hot-case, or walk out of the house and look puzzled, or get confused between dusk and dawn, and I would try to “explain” things to her. At that point, I did not even consider employing a trained attendant.

Then came my mother’s diagnosis. The doctor told me problems of “memory loss” would increase, but the nature of problems looming on the horizon still eluded my comprehension. Even so, I could see that she could no longer be left alone at home. Accusations and delusions were becoming commonplace, as was self-neglect.

Though I wanted to recruit help, my mother vehemently opposed the idea.

She (1) did not think she had a problem (2) refused to have anyone around her all day (3) felt I was neglecting my duty as a daughter if I wanted to go out of the home instead of being with her all day. She found fault with every maid I suggested.

Read the full post here

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.

Read the full post here

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.
Read the full post here

Summary post for the Jan 2011 blogfest

Having driven myself crazy trying to locate something in my own blog, I finally decided to create this summary post to give a quick reference point for all 31 posts I made this January. Here goes:

Jan 1: A new year, and this begins my month-long blog-a-day : Declaring my intent to blog through every day of January 2011

Jan 2:Day 2 and warming up to the blogging: How people, because of their ignorance about dementia, may be inadvertently hurting dementia patients and their family, and comparing awareness of dementia with other medical problems

Jan 3: Ignorance is not bliss… : Sharing memories of how persons, ignorant about dementia, have repeatedly hurt my mother by their insensitive and presumptuous remarks, and dismissed my explanations because they projected their own needs on my mother

Jan 4: Enjoying fun time with my mother : How I have found that my mother and I can enjoy many activities together, such as playing games and telling stories, even though she cannot really remember rules of games or follow a story.

Jan 5: The unexpected quality of openness : Having fun time with my mother resulted in our being relaxed with each other and her being able to open up more about her fears and problems

Jan 6: Being the Wind, being the Sun: Meandering thoughts about the years, my mistakes, my opening up, and learning. A decision to look into the past to see those mistakes and see how things could have been different if I had understood dementia earlier. The past is over for me, but others are still on that caregiving journey…

Jan 7: Pattern spotting : Explaining my belief that the tendency to fit every behavior into a rational model (that attributes intention) causes a lot of pain if the person behaving oddly has dementia; we see stubbornness and meanness where the real reason for the behavior is possibly confusion and disorientation. Sharing anecdotes that could be interpreted in alternate ways if I’d known of her dementia

Jan 8: Hints and misses : Things are always clearer in hindsight. Looking back to see how some incidents in the past (before her diagnosis) were indicative of dementia

Jan 9: Learning from our experiences : Explaining why I have decided to share, in the following blog entries, the progression of my mother’s dementia, and how it changed her life and mine.  What follows over the next few days may not be pretty.

Jan 10: Beginning to understand the reality of “memory loss” : How it started becoming obvious to me that “memory loss” was not just forgetting where you placed a key; it meant you couldn’t read TV timetables or make out whether it was morning or evening: anecdotes shared.

Jan 11: Murderers, thieves, and an old woman amidst them : My mother’s confusion and disorientation created many difficult situations for us. She was scared and unhappy, and I was hurt by her accusations and clueless on how to handle suspicions.

Jan 12: She doesn’t cook for me : Describing the difficult years of care, of being accused of neglect by my mother because she forgot things, of embarrassment I faced, and criticism

Jan 13: Hurting herself without meaning to : Incidents recalled when she exposed herself to cold weather or hot, skipped her medicines, and so on: all without wanting to hurt herself, but too confused because of her dementia

Jan 14: A common loneliness…: Looking back at those difficult years, trying to understand how lonely and insecure she must have been, how I did not understand, how I lacked ways to reach her. I, too, was overwhelmed by her constant suspiciousness and fault-finding and repetitive behavior

Jan 15: Care for everyone but a dementia patient… : Beginning to describe how I tried to adjust my life to care for her. How dementia onset is so insidious that one does not realize one is caring for a patient, and there is no guidance on how to handle it. I did not know I had embarked on a long caregiving journey…

Jan 16: Paring down to essentials : Continuing my description of how I had to keep shaping my life to cope with my mother’s continuously increasing memory loss and disorientation, and the consequent demands and accusations and insecurities. How people around me did not understand or support, and I had to keep cutting out chunks of my life

Jan 17: Reshaping career and identity : As my mother’s dementia grew, the impact started affecting even my ability to continue with professional commitments, and major adjustments were required

Jan 18: A new place, a new start : Describing the move to another city, how it was difficult for her to accept, and how I tried to gear the new apartment in the new city to exactly fit what my mother needed

Jan 19: The turning point, and becoming proactive : Sometimes, there are no simple solutions.  Describing how, when some persons close to us just would not understand dementia and kept hurting my mother by their comments, I had to take a number of drastic steps to give her a space that was safe. And how she finally started turning around and relaxing in this space I finally managed to create for her.

Jan 20: Not Alzheimer’s or Parkinson’s? Then why’s there a problem? : People are strangely reluctant to accept that someone could have a genuine problem if they have not heard of it.

Jan 21: On diagnosis, on doctors who may not know or care : Sharing my distress at how poor awareness of dementia is even within the medical community. How doctors in emergency services and in other specialties dismiss my warning that my mother has dementia.

Jan 22: Our first consultation with a specialist : Beginning a set of entries on my mother’s medical problems and our visits to neurologists. Here, I describe the fall that marked the beginning of my mother’s problems, her deterioration, and our first consultation with a specialist who was a good shrugger and explained nothing.

Jan 23: When the specialist laughed at her : Continuing the description of our attempts to find out what the problem was; this second specialist was one who wouldn’t bother to look at her MRI and who laughed at her.

Jan 24: Finally, some clarity about the diagnosis: The third specialist gives us a diagnosis, and tells us what to expect, but I could have done with more input on the “care” aspect

Jan 25: Echoes across caregivers, touching lives : I talk of my commitment to share multiple caregiver experiences through my website, and share my experiences of talking to other caregivers; there are commonalities we all share. Yet many caregivers are unable to speak of our problems, even under the cover of anonymity, and instead carry the hurt inside them for years. Links to available interviews.

Jan 26: A sense of loss : When a dementia patient loses his/ her memories, we suffer not just because we see our loved one suffering; we, too, lose our shared memories and our shared past. For spouses of patients, this is especially heartbreaking.

Jan 27: Understanding, believing, denying: On dementia awareness, and why just saying “memory loss” is not enough; people do not get a measure of the horror of dementia with that innocuous phrase. And shared anecdotal evidence of how even persons, even medical persons, who theoretically accept dementia as being caused by a medical condition are not emotionally convinced of this.

Jan 28:Over years of caregiving…: A rambling of how over a decade of caregiving has changed, or hasn’t changed me. I talk of the shifting profile of my work, my social life, my approach to life, and yet some changes are not deep enough

Jan 29:Past tense and kadhi pakodi : How someone thought my mother was dead because I often use the past tense to describe her likes and dislikes. Tracing her fondness of kadhi pakodi over the years to show what has made me inadvertently switch to the past tense. We all change over the years…

Jan 30: My mother, a collage of my memories : A nostalgic piece about my mother, her childhood, my childhood, a jumble of memories, some shifts in impressions as I re-examine things with adult eyes. Some scanned memories, some tears that make me stop writing.

Jan 31: Phew! A month-load of blogs done; time to pause to breathe and have dark chocolate : Blog marking end of 31-day blog fest and over 51,000 words, and declaring I’m off to have dark chocolate and pamper myself by doing weird stuff.

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My mother, a collage of my memories

I’ve been writing a lot about my mother as she has been these last few years. She is now bed-ridden, apparently peaceful and happy, and mostly silent, uttering a few words for an immediate need, but not articulating anything complex. But she was very active some years ago, sharp, very clear about what she thought and wanted, and today I’ll step back into the past and share more of the person she used to be before all this happened.

My mother was a very private person, for one. But she was also very particular about helping people and often went out of her way to do things for them. One thing she was very insistent about was about donating her body. At a time when she was already facing problems writing, she once heard someone say that body donation does not happen if the person has not clearly declared the intention of body donation. A couple of hours later, she handed me a paper. Here’s an excerpt:

My mother does not know I blog. But given the above, I think I am meeting in intent what she would have wanted.

Outside India, people understand that people who get dementia were not “lazy” or inactive, low-IQ laggards who could have avoided such a fate by being active. But in India, as I wrote some days ago, people behave as if dementia is something that touches only people who were, in some way, negligent.

No one could have called my mother lazy or low in willpower or negligent.At a time when women barely studied and very few studied up to graduate level, my mother completed multiple post-graduate courses. She taught in colleges and schools till she had to give it up because of my father’s frequent transfers and other such problems.

When I was in school, my subjects were very different from what she’d studied. But till I reached class eight, she tried to stay abreast and teach me when needed. She had never studied geometry, but she picked it up for me. And Sanskrit.

She loved driving. Absolutely loved it. Drove much better than my father did. I remember once, when a colleague of my father had to be dropped somewhere, he somewhat hesitantly requested that my mother do the driving instead of my father 🙂

Read the full post here