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behavior of concern November 10, 2009

Posted by swapnawrites in caregiving joys and travails, life, attitudes, choices.
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A few days ago, I had the opportunity to discuss “Understanding Challenging Behaviour” with a number of professionals involved (or about to be involved) in dementia caregiving.

It got me thinking :-)

There is, of course, no shortage of difficult/ challenging behavior when you are caring for a dementia patient. The nature of the disease keeps the patient disoriented about time and space, keeps memories disjointed or wrongly connected, affects even basic aspects like identity and interpreting the surroundings. A patient may not recognize a close relative, let alone a carer he/ she sees every day. Everything to a patient can be a challenge, and in response to this, the patient may react with withdrawal or aggression or any of the range of ‘challenging’ behaviors.

Then, there is this concept of  “behavior of concern” which is rather simple:  not every strange/ not-normal behavior of a dementia patient needs to worry us. Every model on dementia caregiving tells us we need to focus on behaviors with serious/ unacceptable consequences. Simply put, a behavior of concern is one that upsets or harms the patient or the persons (or community) around the patient. The rest of strange behaviors can, well, be set aside :-)

So, if the patient gets angry, we must try to find out what happened, how to prevent it, or how to reduce the duration and impact of such an anger fit.  Because anger harms the patient and upsets the people subjected to it.

Or the patient withdraws, again, such withdrawal is harmful and must be studied and resolved.

Or if the patient wanders off, or tries to light the stove (and lets gas escape) or picks up the car keys and starts driving with no real idea of how to drive and where he/ she is driving…

On the other hand, take an old lady who wears her nightdown inside out. Or insists that her brother died at the age of sixteen when he actually died at 87 (or is still alive). Are these really worth correcting or analyzing? No, they are not.

Simple, right? And obvious.

Ask any group of persons gathered to discuss dementia caregiving, and everyone will agree that certain behaviors are of concern and others are not.

But, sigh! In real life, we caregivers often forget that a dementia patient will often act oddly, and not every odd behavior is cause for worry/ action. We get overwhelmed and “sweat the small stuff” and deplete ourselves of the energy needed for bigger problems.

It sounds silly in retrospect, but I often wasted a lot of energy on silly stuff myself in the early years of my caregiving. As did others interacting with my mother.

Here’s a true example of a conversation a neighbor often had with my mother, never failing to leave my mother upset.

*———*

Neighbor: My son is coming tomorrow from the USA

Mom: I miss my son.

Neighbor: Your son? But you do not have a son.

Mom (agitated): I have a son.

Neighbor: You have a daughter, not a son.

Mom: I have a daughter. And I have a son.
…(a few more back and forth statements, with both ladies getting more excited) …

Mom (points to photograph of grandson): See? My son.

Neighbor (laughs loudly): That is not your son. That is your grandson, Vipul. You are not his mother.

Mom: I am his mother.

Neighbor: No, your daughter is his mother. You are his grandmother.

Mom (almost crying by now): I am his mother.

Neighbor (now pointing out to my photograph): If you are his mother, who is this?

Mom: My sister.

Neighbor: No, this is your daughter.

Mom: I have a son. I do not have a daughter. This is my sister.

Neighbor (now agitated, loud): Why do you keep saying the wrong thing? He is not your son. You only have a daughter. Do not say wrong things.

Mom (tears in her eyes): I have a headache.

*———*

Later, the neighbor comes to me:

Neighbor: Your mother insists Vipul is her son.

I: She brought him up as a son, she has always thought of him as a son.

Neighbor: But that is *wrong*. She should know he is her grandson.

I: She has been a mother to him, and she likes to call herself his mother.

Neighbor: You should correct her. She should not say wrong things.

I: It does not harm anyone. I do not mind.

Neighbor: You should not allow this.

I: What difference does it make?

Neighbor: I believe in being truthful.

*———*

Mom: Why does that woman say I have no son? Vipul is my son. How can she say he is not my son?

I: Of course Vipul is your son. You brought him up as a son, so he is your son.

Mom: She kept saying he is not my son. She was yelling at me. Why was she yelling at me?

I: Her talking loudly doesn’t change facts.

Mom: She said Vipul is your son.

I: That is also true. He is my son, and he is your son. Right?

Mom: Actually, Vipul is your son. But he is my son.
(which means that at some level, she knew the truth and was able to say it when not being forced)

I: That is also true. Don’t worry about what she says–that will not change anything.

*———*

There are many such incidents I remember from my years of caregiving for my mother. Often, I got irritated or angry and made no attempts to hide it. Often, this was for small and silly, inconsequential things that just rubbed me wrong. As any caregiver would tell you in all honesty, all of us have felt dejected or irritated because of behavior that is odd, irritating, or embarrassing even if it did not harm anyone.

Why? Why, for example, do we get so upset (note, I say we, because I have often got upset about these things) if a patient takes so long to eat, or drops food or spits it out, or spoils her clothes? Why do we get agitated if she wears her nightgown inside out–why this need to ‘correct’ it before a visitor comes? Why this insistence on correcting it if the patient is unwilling? Why the sense of “embarrassment” because she is not neat according to the criteria we are imposing? Why this sense of failure?

And why, pray, this need to correct an obviously faulty memory in a person suffering from a disease that is often treated as synonymous with ‘memory loss’?

Here’s what I think: Caring for someone with dementia makes us face the shortcomings of our own ego, and our difficulty in setting ego aside even for compassion.

Take the problem of confabulation, where a patient fills gaps in her patchy memory by imagined facts. Why do we want to ‘correct’ such a person? Some reasons I have got after discussing this with caregivers in various forums:

  • Somewhere, there is a belief that not challenging a factually wrong statement is tantamount to agreeing to it. It is like lying, or allowing a lie to be uttered unopposed.
  • At times, we feel that someone saying something wrong must be taught what is right.
  • Or we feel that we need to demonstrate that we know the truth better
  • Or, once an argument starts, we need to win. How can we lose when we are right?

Looking deeper, I think these beliefs stem from:

  • There is only one truth, the one we know.
  • Anyone uttering a different truth must be corrected/ convinced/ argued with, or our position is challenged
  • Our ego is tied with our ability to stick by what we know to be the truth
  • Any other truth is a challenge to our world’s rightness and rationality.

And put this way, this is not about dementia patients at all. This is about tolerating and accepting that a world can contain multiple realities and perspectives. Our need to correct a dementia patient is a tiny reflection of a greater problem in our world–intolerance. And the problem of identity. We tie our sense of worth and identity with the need to be right, with the need to have around us a world that functions as per our rules.

Now imagine a world where we accept that different people think and act differently, and that they are not wrong to do so, just different. A world where we genuinely accept this, not merely for the sake of speeches and for rational arguments. Can you imagine how much of the gossip and criticism would collapse? We would save all the energy we expend trying to chop and change the world to fit our framework. Imagine the harmony between religions, between communities, between generations. All that anger, that fear, evaporated into nothingness.

So, can caregiving become our way to develop what Buddhists refers to as one of the perfections–kshanti, or patience/ forbearance? Of building what they call lovingkindness (metta) and compassion (karuna)? And so, can caregiving help us build the stamina to effectively cope with the rest of our world? Transform ourselves into better human beings, developing skills that will serve us and our community well in all situations?

Next time a loved one’s behavior stirs impatience even if it does not harm anyone, pause and think for a moment. The realization that you can just drop your reaction is incredibly liberating. And energizing.

a community of caregivers October 12, 2009

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It was just over an year ago that I felt alone as a caregiver. Not so now. The community of caregivers is scattered around me, people performing a role that demands extreme empathy and involves overwhelm.

Yes, caregivers end up living a life with priorities and perspectives very different from others around them.  But we can connect with each other, share tips, share both the joys and travails of caregiving. We can be there for others who are just embarking on this journey.

And through honest sharing of our experiences, we can make the journey easier for others.

A few weeks ago, through a comment on my blog, I connected with Ekta Hattangady from Ahmedabad.

Ekta was thrust into a caregiving role for her mother (an Alzheimer’s patient) at an age when most girls are handling adolescence problems and excitement. She was 13 when her mother (then 42 years old) was diagnosed as suffering from Alzheimer’s Disease.  Her mother died after six years, and these six years of caregiving have left Ekta with experiences that have stayed close to her heart. The deep empathy required, as well as the sense of overwhelm and loneliness have made Ekta determined to do something for care-givers. She hopes she can help others who suffer as she did.

Read her honest and touching poem on caregiving here. 

returning with a brief update, and thoughts on brain bank October 5, 2009

Posted by swapnawrites in life, attitudes, choices.
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So, it’s been three months since my last blog entry. This, after I started the year with a daily entry for one whole month! Ah, well. In software project management, there is a saying: How does a project get to be a year late? One day at a time. That’s what happened here, too.  And after the gap crossed a month, I told myself every day, what difference will one more day make? So it crossed two months, and almost crossed three months.

The last three months have been hectic for me, but dementia and caregiving have continued to form a major part of my life. If anything, the share of my time and energy in these has gone up. It’s just that I could not gather my thoughts enough to make a blog entry.

Let me start with one major event in dementia, the World Alzheimers Day, observed world-wide on September 21. In Bangalore, the functions marking this day were organized by ARDSI Bangalore and Nightingales Medical Trust. There was a memory walk, followed by presentations on dementia and an interactive session with doctors who talked about dementia and answered questions. The chief guest also talked about dementia and policies. And there was a presentation on Brain Bank and its importance in research, and the pledging of the brains of their loved ones by three caregivers.

Here are some reports:
The Hindu: Memory Walk marks Alzheimer’s Day

Times of India: Alzheimers day round up

Indian Express: City observes World Alzheimer’s Day

Bangalore Mirror: Not enough brain tissue

And now, let me write about a topic that deeply concerns me: research and the Brain Bank. I have written about this earlier, too (see my website and an earlier blog entry )

As some of you may know, but many may not, India has one (and only one as of now) Brain Bank, and this is in Bangalore. Dr. Shankar, in an inspiring presentation, explained on World Alzheimers Day, how important the availability of human brains is for research. This is one area where it is not possible to extend findings from other primates because human brains are so very different, and also because we cannot really design tests to understand memory loss or decline of cognitive ability in primates. Dr. Shankar also talked about how, while there is a lag between the first glimpse of hope in research and the medical treatment being available to public, the Brain Bank has already helped researchers discover new things about how the brain works, and translated this into advances in treatment. You can probably get in touch with him to understand more on this (see contact details below).

I have pledged my brain to the Brain Bank, and also that of my mother (I was one of the three persons who pledged the brain in the function held on September 21, 2009, in Bangalore). But my concern runs deeper than just pledging my brain–I have been talking about the brain bank to many friends, and trying to understand why people hesitate to come forward to donate brains.

As part of a support group meeting earlier this month, I discussed the need to donate brains. A friend who had attended an earlier presentation by Dr. Shankar along with me, told me how she was very inspired to pledge her mother’s brain but the family was against it because the mother, long ago, had said she wanted all the normal Hindu rituals performed after her death and they felt this would compromise her wish.

I see their concern. I appreciate it. And I hear this concern from too many people I talk to. It makes me think.

The concept of brain bank is a relatively new one. Donating a brain for research is an activity that will benefit several people, and is therefore an act of generosity. Surely it is a work of punya, worthy of anyone who is religious? I am not sure that it in any way compromises the religious afterlife of the donee or the relatives. I do know that Dr. Shankar says that all major religions (definitely including Hinduism) allow it. Yet, people who have to take decisions that are major and that can be questioned by relatives and friends, feel unsupported and defensive about this, as if they are in some way doing something that would detract from the peace the loved one will get after death.

I really wish more religious leaders would come forth and explain this point.

My knowledge of religion is moderate, and of rituals around it patchy. But I do remember how clearly the Bhagwat Geeta talks of the soul not being affected by fire or water or sword, of how it casts off a body like a robe and takes the next one. Does donating a brain after death affect the soul, then?

A few years ago, my cousin brother died in a horrific accident–he was run over by a train. He was found near the tracks, dead from bleeding, his entire lower body absent. He was cremated with full rites, and I attended and participated in the ceremonies being a close blood relative. No one, not even in a teeny-weeny whisper, ever expressed any doubt that the incompleteness of the cremated body would in any way affect the peace of his soul.

Accidents happen. People are blown apart by bombs, they are crushed by tractors. They lose limbs, their skulls are crushed, their bodies are blown into pieces so small they have to be identified by pieces of cloth and shoes found on bomb blast sites. The indestructibility of the soul is a great comfort to the mourning friends and relatives because we feel that the essence of the person has not been touched by this mortal blow. We take comfort in what we hear of and know of the soul.

How, then, does this square up with the fear some people have that a donated brain would  compromise the journey forward that the dead person has?

A few decades ago, when the eye bank movement started, a lot of people talked against the removal of the cornea. The concerns on this have faded away as awareness has spread. While many people, traumatized by the death, may forget to donate the eyes, the opposition in principle has substantially reduced. Perhaps the same will happen to the concept of brain bank as awareness grows. I certainly hope so. A person’s eyes can give sight to two people. A person’s brain, used for research, may result in a find that will bring forth a medicine that will help thousands, millions of people. Surely worth it, no?

I have another thought on this, and it concerns my father’s death, 12 years ago. As with all deaths, we were not really ready. We went through the ceremonies in a haze. As per convention, I asked a priest at a local temple to come for the prayer meeting to address friends and relatives, and also for the havan to be performed on the third day after the cremation.

At the prayer meeting, this young and energetic priest, well-read, articulate, talked of the soul as described in the Bhagwad Geeta. It was a very well-delivered speech, consoling us about how my father’s soul lived on, and would always do so. Two days later, this same man, at the havan, described elaborate rituals without which my father’s soul would remain hungry and have no peace. On this occasion, the soul seemed like something that ate and drank and was very vulnerable. It just didn’t square up with what he had talked about on the previous occasion, a discrepancy my son (then 12) noted, as did I– but no one in the audience did. It was like one set of switches had gone off.

I have tried to understand this apparent contradiction from a number of people who are learned about religion, and also people who perform all prescribed rituals on all occasions and also attend classes in Geeta and chant it every day. No one has managed to direct me to the underlying principles that provide the consistent fabric where both these fit in. I am sure the religion is vast and rich enough to explain how both are true– if only ordinary people could understand, it would be so much easier to decide on things like whether or not they want to donate organs like the brain for research.

We make decisions and act based on our interpretation and our scattered knowledge. Many conventions and rituals carry on through the ages without being evaluated in the newer contexts. Some may be true to the underlying religion, and some may not. After all, people several centuries ago did not have to decide whether or not to donate cornea and brains, and the conventions therefore neither include nor exclude these specifically. How these donations agree with or contradict the underlying principles is for senior religious teachers to address and explain, so that those who wish to do what is right for their loved ones can act with full faith and with confidence and do what is generous and right.

This also brings me to the concept of   daan (donation, charity), which gets a lot of prominence in many Hindu mythologocal stories. We have kings who give away their kingdoms, even offer their head for that last step when their kingdom is exhausted. They give up their sons and wives (though I don’t quite think they should be treating sons and wives like property :-) We admire people who are daani (generous).

Surely, that means donation is accepted by religion as good? And if the soul is indeed indestructible, why not? Remember, donating a brain for research is an act of generosity, of daan.  Perhaps, as persons who want to do what is good and right, we need to find out more about this and act on that knowledge instead of assuming that the rituals are incomplete and ineffective because the brain has been donated. Let us not make unsubstantiated assumptions that hamper research that can benefit so many people.

I think the cause is important enough to make informed and thoughtful decisions. Discuss with your family. Think. Contact the team at the Brain Bank, Bangalore (see their page at this link).  And do what is right and generous.

You can learn more about the Brain Bank by contacting:

Dr. S K Shankar
Professor and Head
Dept. of Neuropathology
NIMHANS
Hosur Road
Bangalore – 560029, India

Phone: 91-80-26995130

E-mail: shankar@nimhans.kar.nic.in

dementia, attachment, letting go July 5, 2009

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Over the last several years, as my mother slips deeper into a confused state of lost/ jumbled/ false memories and becomes disabled for “activities of daily living”, I have simplified my communication style as well as content to match what I think she can manage. But a few days ago, when I returned from a talk on Buddhism, she asked me where I had gone and I told her. Then, she asked me what the “doctor” said, and I realized she meant the teacher, and I told her.

The conversation that followed was amazing.

I told her that Buddhism offers a model that encourages us to understand what suffering is, its true causes, and a rational way to stop suffering. I mentioned “attachment” as one of the reasons for suffering.

“I am not attached to any thing,” she said.

I gaped at her. Frankly, I had not expected her to ‘participate’ by self-analysis, and of course, I don’t think anyone is free of attachment. I definitely am not. “Is that so?” I said.

She pointed to a plaster of Paris bust of Lord Buddha that she bought about fifty years ago. “See that? I like it, I like looking at it, but if it falls and breaks tomorrow, I will not feel bad.  It is breakable and so it broke.”

I wasn’t done gaping yet. Her sentences had a coherence I associate with a normal conversation with a peer. “Oh?” was all I managed to say.

“But I am very attached to the maids,” she said.

We have had, over the last few years, a succession of girls who have helped me take care of her, and also a whole bunch of girls to do housework.  They quit, a replacement comes, the cycle goes on. My mother never manages to remember their names or faces, she muddles up their characteristics, complains about them based on imagined problems and jumbled memories, accuses them of stuff, gets angry.  Attached? No way.

My mother pointed to the floor. “See this? I am attached to its being clean. I worry that if a maid does not come, to safai kaun karega? (then who will clean it?) Who will do the other work? How will I manage if no one does the work?”

My mother’s attention span finished with that, and she switched to a six piece jigsaw puzzle. But I am still thinking about the conversation. Not just did she understand that attachment can be to things, she went a step further on her own to apply ‘attachment’ to a concept, a state of affairs and the expectation of availability of people who make it possible. Heck, that’s the attachment we all have and don’t even notice. Like expecting electricity, water, food…

My mother has never been religious, but philosophy was much the talk of the house as I grew up.  Often colleagues and friends would drop by and have extensive discussions on stuff like Theosophy and Jiddu Krishnamurthi and all that. My mother was very well read and articulate. A few days ago, I glimpsed the old her again, but with an improvement. In her younger version, she never admitted to any imperfection. She never used her life as an example for any imperfection type of concept — she was more about picking holes in others :-)

I came away thinking, this quality of conversation is not usual even when I talk to peers.

I have often read about people who suffer major setbacks and who find a thread of personal growth in them, emerging as stronger and better persons. They say, “my cancer made me a better person”, “my accident made me a better person”, “my divorce made me a better person.” (They go on tours, set up life mentorship systems and write books, too) I have felt about myself: my caregiving responsibility has helped me grow in ways I had never imagined.

But I have not heard anyone say: my dementia has made me a better person. I had not thought it could be true. Maybe it can. Maybe, free of the cluttered memories, the person sometimes glimpses what lies under the “I” chatter of the mind. Denuded of all we consider necessary to exist — memories that define us, abilities that give us the illusion that we are ‘independent’ — maybe there is a core of growth possible. Maybe, if they could string together the words some of the patients would say, my dementia has made me a better person. Or even, my dementia has made me go beyond being a person.

For a while now, I have understood that every event in life can be accepted and integrated into personal growth. It is not something I manage to do often enough, but the possibility shines before me, and sometimes I avail it. I have known that caregiving allows me to build empathy, acceptance, compassion. Watching my mother’s personality unraveling had reminded me how elusive a sense of identity is, how frail, how dependent on what you remember.

And this conversation has shown me that maybe there is even more I can learn from my mother, from what she is managing to think, understand, and accept in her state. You know, I am not that scared of dementia any more.

Knowing what dementia is, versus understanding what it really means June 4, 2009

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A few weeks ago, as I was working on how to increase awareness about dementia, I realized that most people who know about dementia don’t really know about it. They can talk about how unfortunate memory loss is, and how awful it must be, but the sentences are more like quotes from articles they have read, or what they have heard. Because, a few minutes later, they slip into behavior that can be extremely stressful for the patient, or come up with suggestions that leave the caregiver scratching his/ her head, wondering how to explain it all over again.

Memory loss is one of those overused phrases. We joke about it all the time. Misplaced the car keys? Joke: You are getting senile. Joke: Maybe you have dementia. Senior moment. Whatever. Forgot a birthday? hey, you’re getting old. Grin.

So when someone says, dementia is memory loss, we assume it to be more of the same. Maybe losing five car keys? Forgetting ten birthdays? It is bad, inconvenient, but not heart-wrenching. And just as we don’t make too many concessions for someone because they misplaced their spectacles or car keys or forgot which day of the week it is, we expect a dementia patient to, more or less, be normal (except that she has misplaced her keys, poor dear, smile).

For years after my mother was diagnosed, I made this same mistake. I made allowances for memory loss, but didn’t quite understand (or try to) how memory loss could so totally affect behavior.

Then, one day, I tried to imagine her life, and that transformed me.

She gets up in the morning and stares at the ceiling, and she can’t remember where she is. She can’t remember who she is. She knows she is herself, but what does that mean? She struggles to remember, but gets back only a couple of words, faces, smells, all of her as a child. Her body feels different. She tries to get up–she has to go to the bathroom, but where is the bathroom? She has to hurry, hurry. A face appears near her bed-she has seen the person before. The person is frowning and speaking rapidly. She cannot focus. The person seems irritated. She is scared. She is helpless. The person places a hand on her and tries to make her get up. Sentences, words are tumbling out of the stranger’s mouth–they make no sense to her, but she knows that tone. It is exasperation. She wants the person to speak slowly, but she is not able to remember how to say this–her tongue does not seem to form the words it should. The person tries to hurry her; she wants to go to the bathroom, and she is frustrated. She hits out. It is the only way she has to say something.

The first time I imagined this scenario, I was shocked that I had not thought of it before. How does a person with only patchy memory of who she is, only patchy ideas of her surroundings and the people around her, navigate the world?  Awful doesn’t begin to describe how it must be.

Not quite like forgetting where the spectacles are, no?

Dementia awareness is an area that deeply concerns me. To me, it is not just rattling a list of symptoms–it is understanding the syndrome well enough to act with compassion and empathy while dealing with this person, whether as a caregiver or a friend or a neighbor.

The tragedy is, even people who have been in close touch with a dementia patient, do not grasp what the patient is undergoing. They cope with the problems, but cannot relate, and so they end up feeling tired and frustrated and used up/ exploited.

Dementia awareness is not just abut teaching people who have never heard of dementia. It is about making sure that people who know dementia patients understand deeply enough what dementia is doing to the person and affecting his/ her behavior.

Here is an example of a family that was touched closely by dementia, but remains ignorant.

An elderly lady had a series of strokes, and never quite recovered. Even after she resumed walking, she rarely spoke. Her behavior became odd–she became incontinent, and one of her children once saw her smear a wall with feces. If asked to wear a diaper, she flung it away. She fought when taken for a bath. She no longer tried to talk, and rarely listened. Often she looked blank; sometimes she accused her children of stealing her jewelry and property. She hid her money, and then accused the maids of theft.

The lady was staying with her eldest child, who was very hurt and embarrassed by the accusations. The child felt used, misused, abused, and the frustration, sorrow, and anger of caregiving reflected in the voice all the time. Finally, caregiving stressed out this child so much that the mother was moved to another child. Three children (and their grandchildren) took turns looking after this old lady; every family reached a point of utter frustration and break-down, and the mother was finally moved to an old age home. By this time, the mother was no longer communicating, not even responding. She sat without saying anything, staring in space most of the day; once in a while she would scream unintelligibly. The children/ grandchildren would visit once in a month, or once in two months, carrying along what they remembered as the old lady’s favorite food, trying to talk for an hour, and come away feeling helpless because they got virtually no response.

Of the three siblings who looked after the mother, only one remembers/ admits that the mother was diagnosed as having multi-infarct dementia. The two other siblings still talk as if the mother was strange and stubborn in her last years. These families, touched closely by dementia, have not yet accepted that the mother had dementia, that the mother was not being stubborn and difficult but helpless and clueless. They frown at the word dementia, say they don’t know anyone with it. One of them has repeatedly told me that there is nothing a bit of willpower would  not have solved.

Even the child who knew it was dementia, and who freely admits that caregiving is difficult for dementia patients, has no clue that there are defined ways to communicate effectively with a dementia patient. This child had no access to caregiver groups, no resources, and while she accepted her mother’s condition and knew it to be a loss of memory (and not stubborn, uncooperative behavior), she is clueless on how such problems could be handled.

So here we have a family that cared for a dementia patient, and faced the typical problems. Yet, the awareness of dementia remains low–two of the three families involved still do not understand what was happening, and that it as a disease. The third, while understanding this, does not know of the existence of caregiving resources.

Dementia awareness, I think, has to go far beyond making people recite by rote the list of symptoms. Those are just words. The human tragedy behind them is mere theory; it does not register. What we need is a method of having people pause, think, soak it in their hearts, so that the ways out in terms of compassionate caregiving rise from the perception. And I mean compassion for all concerned–the patient, the caregiver, everyone. Because when a patient forgets the world and can no longer recognize the caregiver, it is not just the patient who loses an identity, it is also the caregiver. And compassion and empathy would serve all well.

HBO’s Alzheimer’s Project May 11, 2009

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I’ve been busy, not enough time to write a detailed post on a few topics I want to, but then I saw this set of video streams, and it was worth writing about: HBO’s Alzheimer Project. Have a look here.

If you want to see what dementia means to the patient, and to  caregivers, this is an absolute must. The project includes a set of videos (which will be available for sale later), and guides that go along, and supplementary material. There is also a lot of data that makes the impact really sink in. Did you know, for example, that 54% of the people in America have been touched by Alzheimer’s, as patients, relatives, friends, whatever.  The national impact of Alzheimer’s (for USA) is discussed.

One of the dementia patients interviewed (Joe Potocny) has been using a blog to record his thoughts as he progresses through the disease. He also twitters.

It was while going through these video streams and other material that I realized how different it is in India, where diagnosis usually happens (if at all) in middle to late stages.

I, for one, have not met a patient diagnosed at a very early stage, who understands he/ she has dementia but is still almost fully alert/ functional, and is therefore planning for and dreading the future. I have not seen a family where the patient explains to his/ her grandchildren what will happen to him/ her because of the disease in a few years. I do not know patients who have grasped the impact of the disease in time to say their farewells the way they may want to.

If ever I get dementia, I would like to know in time to enter the state with grace and after having said my farewells and given my hugs to all I care for, after neatly setting aside my life as memory forces me to.  Even if the disease is non-treatable, surely there can be dignity in the way one embarks on this downward slide, dignity while it lasts.

My other blog April 28, 2009

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A small note.

When I started this blog, I had assumed it would be my only blog, but as it happens, most entries in this are serious stuff, and most are related to dementia and caregiving, or the thoughts about life triggered by that. This is natural, because caregiving for my mother, a dementia patient, occupies a significant chunk of my mind-share and time-share.  And emotions, whatever.

But I do need a place to unwind. A place where I can be the rest of me (whatever’s left over after caregiving). And I don’t want to mix up small entries with the sort of entries I make here.  So, while I will continue to use this blog for serious writing, I have taken another blog to post scattered thoughts on books I read, stories I write (or try to), and other unstructured musings of my life. I don’t expect my entries there to be frequent, and they will definitely be shorter :-)

Where is Mother, or, when a dementia patient walks out April 23, 2009

Posted by swapnawrites in caregiving joys and travails.
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One of the scariest consequences of dementia in a patient’s behavior is the tendency to wander.

Imagine a lady with dementia sitting at home and suddenly thinking it is time to go to office (never mind she retired twenty years ago); she picks up a purse on the table (the purse isn’t even hers) and heads for the door. The surroundings seem familiar for a while, but then she is confused. Now she is in a strange place, agitated, not very sure who she is or what she is doing as her original reason for leaving the house has been forgotten. Meanwhile, frantic family members are trying to figure out where Amma has gone.

Or a restless, reasonably active man walking around in the house, and spotting a door. Out of habit, or curiosity, or boredom, he turns the knob. Nice weather, good breeze. Another step and he is out of the house, and no one else knows. After walking for a while, the dementia patient realizes that he is lost. Agitation, confusion, fear set in. He wants to return home, but is not sure of the address, or may remember ‘home’ from a different city, a different age.

Some real life cases:

A neighbor’s mother had dementia. The family members usually kept the door bolted (the lady was too short to reach the bolt), but one day, the maid left it open. By the time the family realized the mistake, the mother was nowhere in sight. The frantic family rushed around, checking neighboring houses, pulling in volunteers, and fanning out for the search. The lady (and she was a frail woman) had walked three kilometres on a main road, and then stopped, totally lost. A passer-by suspected something was wrong and approached her; she did not know her name or address, and kept talking about her house in Srinagar, Kashmir (this was in Delhi). The gentleman took her to a police-station. He also spread the word in all his friends and relatives about having found a Kashmiri lady. After four hours of hell, the family got a phone call telling them that a lady who looked like their mother was at Trilokpuri police station.

My neighbors were lucky.

I know of another case where a wandering person had an accident–roads with honking, unruly traffic are dangerous places for dementia patients. And, horrors, a friend told me that her uncle walked out eight years ago, and was still missing.

The possibility of wandering is a nightmare for caregivers because it is impossible to keep a 24 hour watch on a patient. The problem is more severe for patients in early to mid stage dementia, who still walk well enough, are active, and think they need to do something, or investigate something.

So, what can a caregiver do?

In many countries, the problem of wandering is widely recognized and there are programs for ensuring early and safe return of someone who has wandered. (The US has a program called MedicAlert + SafeReturn)

I am not aware of any such systematic approach to wandering in India. The problem is worse because caregivers do not fully register that this could happen, and lack ideas on how to reduce the chances of wandering. Neighbors and friends are even more ignorant and assume methods used to discourage the patient from going out alone are “cruel.”

Here are some tips for caregivers overwhelmed by the wandering problem.

  • Understand why dementia patients usually wander
  • Specifically understand why our loved one wanders (what the person is trying to do, what triggers the need, what is the pattern of wandering)
  • Creatively minimize such triggers to reduce wandering
  • Have support systems around us to locate a patient who had wandered, as soon as possible

Understand wandering in general

In general, there are many causes or triggers that make the dementia patients wander, the underlying cause being the loss of memory and therefore a loss of a relevant context to act within.

For example, the person may want to go to their old office or home. He/ she may want to shop. Maybe it is time for the morning walk, or to drop by at neighbors. Maybe the person is not trying to go out, but is looking for the bathroom or kitchen or bedroom. Or he/ she sees a door and turns the knob out of habit. It is possible that the person is bored/ has excess energy and needs to walk it off. Maybe, the surroundings look very unfamiliar, so the person is trying to escape and return to a place that is his/ her own. (Links for a comprehensive general understanding are given below)

Understand why our loved one wanders

With a general understanding of why dementia patients may be wandering, and with our own knowledge of the loved one’s past, and his/ her current state, we are in the best position to identify why our loved one may wander.

We may know, for example, how particular Amma is about her morning walk, or how punctually Appa used to catch bus number 210 to go to work. We know how Dadaji always stepped out of the house when the smells from the kitchen became overwhelming.

We can study the pattern by studying when the patient gets restless or tends to wander. It may also be possible to detect patterns that precede actual wandering, for example, the patient may often pace a room restlessly and that may indicate that he/ she is about to wander out. The restlessness may be prompted by a particular time of the day (associated with a morning walk, for example) or a sound (doorbell ringing, sound of train on nearby track) or event (just after a meal, as the dementia patient may have been a smoker who used to walk out for a cigarette after a meal).

We can look at the time of such wandering, or the activity the person was doing before. Talking to the person just when he/ she is about to wander may give us more input on what ‘need’ the patient wanted to fulfill.

Reduce triggers for wandering.

Having understood the ‘need’ of the loved one that leads to wandering, we need to get more creative.

Remove reminders/ triggers/ props: We can, for example, remove props the patient is used to having when wandering out. If we know Appa is (in his mind) headed for office, we know he will look for his briefcase (or anything he may mistake for a briefcase) and hiding that may agitate him, but he may not think of going to office without it :-)

Reduce chances of confusion: Confusion about surroundings is another common cause of wandering. If we realize that our loved one wanders because he/ she needs a bathroom, we know that solving this bathroom-search problem will stop the wandering. Maybe what we need is a sign on the bathroom, or to have a timetable to take the patient to the bathroom at regular intervals. For the night, install night lights to help the patient locate the bathroom.

Make the exit less visible/ attractive: Perhaps the patient is attracted by the door, or fascinated by a knob. We can paint the door the same color as the wall, cover the knob with cloth so it matches the door color. We can re-arrange furniture and seating so the patient is not usually facing the door. If we find that the patient hesitates to cross a dark line on the floor (as many dementia patients do because they apparently think the floor is broken or something), we can place a band of dark tape a few feet before the floor. The solution, really, will depend on how the patient reacts to such things.

Get alerted at the earliest: An open door is always a potential route of escape. Maybe the patient can be in a room that does not have an exit out of the house, and any such exit is only possible through a series of other rooms, and hence more unlikely. We can put up latches on the main doors that the dementia patient cannot reach or open.

To be alert if the patient is opening the main door, we can hang bells / chimes on the main door, so that the sound can alert others. We can also connect electronic bell to the main door and keep it activated at night. Baby monitoring devices are available in the US: these may be helpful to monitor the patient when you are in another room.

Remove general triggers: There are also some general triggers that would make any dementia patient feel restless, insecure, or confused, and thus increase the chance of wandering. Keeping these in mind may help us remember to be very cautious. For example,

  • We should not leave dementia patient alone in strange places, or the car.
  • Patients are likely to get agitated/ confused by new stuff–places, visitors, crowded family festivities
  • Patients are likely to get confused by loud sounds and TV (unable to distinguish between reality and fiction)
  • Patients are likely to be more confused when they wake up, because they may confuse between their dream-world and reality, and may have residual anxiety after a nightmare
  • Some medication increases confusion/ agitation, and increase in tendency to wander may be correlated to introducing a new medication. Alertness on this will help take medical help in time.

Good explanations of possible causes of wandering (and what can be done) are available here,  here, and  here.

Have enough support systems around us in case patient wanders

Regardless of what we do, there is always a chance of the patient leaving the house unattended. We also need support systems outside to keep damage from wandering at a minimum. While some of the measures could be related to locking garden gates, many depend on being able to use family, friends, neighbors, and police help.

To me, this is one area where things get tricky in India, because of the extremely low awareness of the wandering problem of dementia patients (indeed, extremely low knowledge of dementia as such). Ideally, we can:

  • Inform people around our residence about the problem and tell them what to do/ whom to call, if they see the patient walking alone. This could include neighbors, security guards, shop keepers and regular handymen (electricians, plumbers, gardeners) working around our residence. Let people know that we will appreciate their help.
  • Have an identification badge/ tag (name, address and emergency contact numbers) on the person, easily visible to others. This could be something like an id badge that people wear in offices, or something that is visible from the back. This is specially important when taking the dementia patient out (to a clinic, market or for an outing in a crowded area). (In the US based MedicAlert + Safe Return program, the patient uses a special bracelet, and specialized services locate and return the person enrolled in the program)
  • Keep recent photographs of the dementia patients handy, so that people searching for him/ her can show it around – we should make sure that the photos are recent.
  • Keep phone numbers of people who can help.

Unfortunately, these are not so easily executed in India.

Firstly, many of us hide the fact that we have a dementia patient at home because there is a stigma of ‘mental illness’. We need to overcome this tendency and inform people about the medical problem and its behavioral consequences and dangers.

Even if we tell people about dementia, they tend not to believe. To most people here, dementia is equivalent to accelerated aging, and so the special nature and sweeping extent of confusion is not understood. Caregiver’s actions are seen as laziness/ tyranny.

Here is a personal instance of how difficult it is: When my mother was in the early stages of dementia, she refused to accept the diagnosis, and forbade me from telling others (if I did, she claimed I was lying). Her room had a door and a window opening directly to a corridor outside our apartment, and whenever someone walked past, she would dash to the door to say hello. With increasing dementia, this started becoming a problem, because she would forget to come back in. (She absolutely refused to wear a name tag; she found it demeaning).

One day, she kept walking down the corridor, forgot why, and reached a staircase. She could not walk down alone, so she called a young boy to help. The boy (probably a kid who had learned how old ladies should be helped), helped her down the stairs and then ran off to play. Mother, left alone, and by now quite confused, kept walking and reached the road. I was returning from work and saw her; alarmed, I brought her back. She was very upset with me for bringing her back.

The very next day, I placed a lock on her door from inside, and told her she could take the key from me whenever she wanted to go out. The apartment had another door leading outside, but that was in another room–her problem was a knee-jerk need to step out when someone walked past.

My mother was furious. She complained to all neighbors, friends and relatives that I was torturing her, locking her in, imprisoning her. Most of them were fellow senior citizens, and they got angry with me and lectured me about it. I explained the problem to them and asked for suggestions, but they kept calling me cruel, and said they would not have tolerated their children doing this to them. They called me ungrateful and mean.

It hurt, it really hurt, but if I removed the lock, the danger was greater, and I knew no other way of handling it (I was not very well-informed then, and had no access to support groups). The problem was, my mother’s friends identified with her, and assumed her mental state was like theirs. They did not know the word dementia or understand it. It was only after the other episode (the Kashmiri lady mentioned above), that I was able to quote it and make people around me understand the consequences, and they became more supportive.

Luckily, awareness about dementia is growing in India, and maybe explaining such problems to neighbors and getting their support will become easier. However, in the early stages when the patient is able to hide memory loss from short-duration visitors, people may not believe that the caregiver is working in the best interest of the patient, and may be more critical than helpful.

What if we are walking down the road and see someone who looks totally lost?

The person can be a dementia patient. We should approach him/ her gently, and if possible go along with him/ her for a while on the walk and gently guide him/ her back home. We should not act hurried or anxious, as that emotion will transmit to the person.

The good news:

The fact sheet on dementia wandering states that: Six in 10 people with Alzheimer’s disease will wander. I assume that means that there are some who will not :-) Also, as dementia progresses, the deteriorating health of the patient may make it impossible for the person to wander.

What we must rememebr for our loves ones is that wandering is a possibility we must be ready for. It is a major issue in caregiving dementia patients, and considerable information is available on the links provided above and on www.alz.org. We need to apply the concepts in the context of our own patient, and even more, in the context of our own society and surroundings. I do wish that we, in India, develop a program for safe return of wandering dementia patients, and for those with enough energy to take on causes, here is a potential area to work on.

When families need attendants to help them care for dementia patients (India) April 11, 2009

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One common problem caregivers face in India is finding nursing attendants who will take care of the dementia patients. Such assistance is needed when the dementia patient is in the middle or later stage and cannot be left alone because the patient may need help with activities of daily living, or is otherwise prone to wandering, and the family members cannot do this kind of care giving full-time.

In India, people employ a untrained maid in the beginning for such help, but once the patient starts getting incontinent or otherwise difficult to handle, we usually get a nursing attendant from a home nursing agency.

The problem is, even ‘trained’  attendants are rarely trained to care for dementia patients. Most attendants have undergone a week or two of training, and while they know about first aid, home nursing and bed sores, they do not know about dementia. So, faced with a dementia patient’s difficult behavior, they take every frustration, every anger, as a personal insult. When the family members say this is a disease, they do not believe it. They get upset and this comes out as either agitation with the patient, or depression, and the situation escalates. Most stints by attendants are short-lived and end with sorrow and bitterness as the attendants cannot cope with the situation.

Based on my experience, and experience of other caregivers I have talked to, here are some suggestions for family members who need attendants to care for dementia patients:

Gather resources: Every city has some resources that can help: To get information on support groups, societies, nursing agencies that can help you understand caregiving better and know where to locate attendants, or equipment and supplies you need to caregive, you can:

  • Ask your GP/ specialist
  • Check up with the neurology department of any major hospital
  • Ask any other caregivers
  • Contact city chapters of all-India societies, such as Alzheimer’s and Related Disorders Society of India

Specifically, for nursing attendants, most cities have agencies that supply them, and information about the agencies is usually available at nursing homes and hospitals, in addition to what you may get from doctors, support groups, and other caregivers. Organizations like Red Cross may also be able to help you or direct you to those who can.

Actively seek help from resources who are knowledgeable about caregiving of dementia patients.

You can probably obtain:

  • Literature on the disease that helps you understand the caregiving impact better
  • Pamphlets you can provide a nursing attendant
  • Some organizations may be conducting short-module training for caregivers
  • Some organizations may have a helpline that any caregiver (or attendant) can use to understand how to handle a problematic situation (an agitated attendant can directly talk to a help-line if needed)
  • There may be counselors who are willing to explain things, and even visit patient homes to do so.

Do not hesitate to avail help of these.

Educate yourself on the disease, and tools and techniques to reduce behavior problems–such as patient agitation, and to diffuse/ resolve such agitation when it occurs. It is not enough to know that dementia is a disease and that the patient behaves in a certain way because of this–the caregiver/ attendant needs to know how to make caregiving smooth and stress-free.

If you have understood these techniques and have used them, any attendant who observes you feels more confident about handling the situation. When an attendant sees you handle the patient compassionately and firmly without taking any comments personally, it is easier to accept that the problems are purely because of the disease. When the caregiver gets upset, morose, or agitated at the patient’s agitation, any attendant also gets more unnerved.

Educating yourself in proper ways to handle agitation/ abuse by patients is extremely important and also tricky, because it means setting aside a natural instinct to react and protect one’s ego. There are, fortunately, many books and other resources that clearly explain how to do this.  I have resource pages for websites and for books and DVDs if you want a starting point. If the number of links on these pages are overwhelming, start with: Alz.org’s site simple brochure or advice on specific difficult behavior or download a comprehensive caregiver manual  from National Institute of Aging as individual topics or a PDF file.  (These links are all for US based caregiving, but they provide a good starting point even for those of us outside the USA).

Train the attendant for dementia caregiving. For this, if possible, tap someone else who is an authority. Perhaps someone from your local chapter of ARDSI, or a doctor or a counsellor can talk to the attendant for a short while and explain what dementia means. Let the attendant see other patients in a home or day-care center, so that the attendant understands that this is a disease. If a dementia specific caregiving note is available in the attendant’s language, give this to him/ her.

The intention of such training is that the attendant:

  • Understands and believes that dementia is an irreversible disease where the brain is physically damaged and hence cannot function
  • Understands and believes that a person who cannot remember is likely to be frustrated, suspicious, frightened, angry, accusing, and out-of-control
  • Knows  the tools to reduce agitation and handle it
  • Knows that emotional connection is still possible, and that the patient needs affection and respect
  • Knows that in case the patient gets agitated and accusing, the attendant will not be blamed for it because the relatives understand that the reason is the patient’s illness
  • Knows a number of fall-back measures to use if the patient is out of control (such as, emergency calls to family members, helplines, etc)

If you cannot get someone to help you train, prepare a short training note yourself. You can include pictures of damaged and normal brains to emphasize he physical aspect. In addition to general tips as above, also include tips specific to your patient (mention what agitates her more, etc.). This training note can be used by you every time the attendant changes :-)

In any case, make sure that the attendant knows that you will not start blaming or accusing the attendant based on ill-founded complaints of the patient. Most defensiveness of the attendant will go away with this assurance.

Let the attendant see enough examples of correct caregiving at home. Let the attendant see you interact with the patient in a way that emphasizes what you expect of the attendant. Show the compassion and patience you want the attendant to use. Patients often manage to hide their confusion/ failing memory behind bluster and anger, so let the attendant see instances where it is obvious that the problem is genuine.

Well, that’s all I have for now.

These are my preliminary suggestions, and I would love any comments that will help me improve this list.

To share my own case, I used to have a lot of problems with attendants I got for my mother. They were convinced my mother was lying and being mean and troublesome. NO amount of explaining that my mother had ‘confusion’ helped. I explained to one such attendant that, even if my mother accuses her, the attendant should not argue, but explain her point of view to me later. But no, the attendant would yell back at my mother even as I signaled to her to keep quiet.

One day my mother got very agitated and started accusing the attendant of all sorts of things that were patently impossible. The attendant started arguing back very loudly. I tried to take her aside and tell her not to get so worried, because I knew my mother was confused, and the attendant yelled at me, Confusion wonfusion kucchh nahin, Maa jhoot bolti hai. (This is not confusion/ wonfusion. Mother is lying). She yelled it out again, looking at my mother. It took me hours calming my mother down; my mother wanted the attendant dismissed immediately.

That was when I realized how absolutely deep the attendant’s conviction was that my mother was being mean on purpose. It was also the turning point for me to realize that it was not enough to just explain to the attendant, I needed to tackle her ‘training’ systematically and in a way that convinced her and also gave her tools to handle the agitation. It took me a few weeks, but the very attendant who yelled so at my mother became a reasonably calm caregiver.

The final touch was when she saw me play games with my mother. Earlier, I had hesitated to play games with my mother, thinking that my mother will refuse (games are for children) or feel inadequate (because she could not play them well enough). But finally, when I brought home a few games, I was surprised at how glad she was for them, and how each successful game made her feel so good about herself (the ‘game’ was a set of seven colored plastic rings that were to be stacked, like a cone on a rod).  And playing can be fun, too–a blog entry on my play-time with my mother, and another entry.

Day after day, my mother would struggle with that game and another (a jigsaw of six pieces), every day making the same mistake, every day, frowning and then beaming when she managed to complete the game. It took me a lot of patience to not intervene or force the pace, and a lot of courage to not get dejected. The attendant, watching from a side, looked amused and impatient (and I had to tell her not to laugh) on the first day. But a few days later, I saw the attendant watching my mother very carefully, and I realized that she had finally understood how compromised my mother’s memory and ability to think were. Sometimes a single episode that hits home is enough to change anger and defensiveness in a caregiver to compassion and patience.

I went about the ‘training’ of my next attendant very carefully. I prepared a set of instructions (in slide format). Before the attendant met my mother, I took her to a dementia daycare where she saw other patients, doctors, and caregivers, and saw that the patients were being treated in a special way when they said strange or offending things (not like any old cranky person).

By the time the new attendant met my mother for the first time, she had a framework to place my mother’s illness in. I spent quite a bit of time assuring the attendant that all behavior problems she will encounter are ones I have myself faced, and I also repeated a number of tips on how to handle agitation. I made sure that for the first few days I demonstrated often enough how to handle my mother through a variety of her ‘difficult’ moods. The attendant has been able to handle agitation far better, and has not (so far) taken any episode/ accusation personally. Her calm manner has also given my mother a more stable and secure environment, and reduced the number and intensity of agitation episodes. I am hoping this modality will work as well with the next attendant :-)

Ideally, we should have places that train attendants for dementia care–short course, long courses–giving them theory and practice, and then certificates of completion. Till that happens, we caregivers need to effectively use available attendants to care for our patients in ways that are good for the patient and good for the attendant, and I hope the above suggestions work.

Any comments/ suggestions?

when caregivers are men April 1, 2009

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In my earlier posts discussing caregiving, I tended to use “she” while referring to a caregiver. This was pointed out by a commenter (Vipul Naik), and that got me thinking. I realized that with a bit of an effort I could keep entries free of pronouns and let the reader decide what pronoun to assume. Because the fact is, there are male caregivers and female caregivers, and using any one pronoun could be seen as stereotyping or acting condescending or whatever.

So, if I use the female pronouns for a caregiver, this could be because

  • all caregivers are female and I know that and am being factual
  • all caregivers (or most) are male, but I want to be politically correct
  • I don’t know (or maybe care) what the gender distribution is, but in English, the male pronoun is default, and so, to show I am politically correct (and encourage women), I will use the female pronoun
  • I don’t know or care about the % of female caregivers, but I want to assume that caregiving should be done by females
  • I know there are enough male caregivers and want to minimize their role

On the other hand, if I use the male pronoun for caregivers, the reason could be:

  • all caregivers are male and I know that and am being factual
  • all caregivers (or most) are female, but I want to be make sure I don’t alienate men
  • I don’t know (or maybe care) what the gender distribution is, but in English, the male pronoun is default, and so that’s what I will use
  • I don’t know or care about the % of male caregivers, but I want to assume that caregiving should be done by males
  • I know there are enough female caregivers and want to minimize their role

As it happens, none of the above are true. What is true is

  • English often requires choosing a pronoun, and has no pronoun that is gender neutral for a single person. So, unless I am careful, I will end up saying “he” or “she” and I find alternating between them difficult, so I decided to choose “she”
  • I believed that there were significantly more female caregivers than male

Anyway, so here’s my rethink.

  • I have found it is not too difficult to stay gender neutral in writing. I either use “they”, or avoid pronouns, or use he/ she by reconstructing sentences accordingly.
  • I really do need to find out more about the male caregiver–their problems may be different from the ones I am used to facing (being a female)

The report from Alzheimer’s Association, 2009 Alzheimer’s Disease Facts and Figures gives the US data on male/ female caregivers. Quote: About 60 percent of family and other unpaid caregivers of people with Alzheimer’s disease and other dementias are women. Which means, gulp, that in the US, 40% of caregivers are men–much higher than I had expected. Definitely, the male caregiver is a significant constituency and likely to have fairly different set of social and other problems in caregiving.

Socially speaking, I believe the pressure is on women to caregive. That is, given a situation where a person needs caregiving and both a male and a female caregiver are available, the odds are the job will end up with (in most part) on the female. This is part of the social structure in patriarchal society, just as, all other things being equal, the chances are that the women will do more chores, and look after their kids more often, or give up their career if needed. This is not to say that there are no exceptions, but that this is more likely.  Some people call it male privilege (a term that is based on more seminal work done on white privilege: see article Unpacking the Invisible Knapsack on white privilege).

This gravitation of caregiving to females is also visible while sharing caregiving duties between siblings, where again the default often assumed is that the females will caregive (an article at The New Old Age)

But there are men who caregive, either as spouses, or sons, sons-in-law, friends, neighbors. And if a man is thrust in (or opts for) a caregiver role, societal assumptions only make things more difficult for him.

Here is an article in New York Times about gender issues for male caregivers. And a comment on it in Salon.

Note that men have typically not been brought up to nurture or empathize, and adjusting to caregiving without that, and without role models, is much more difficult. Note the lack of support systems, and the bias of support systems towards females. A male caregiver is invisible in systems, assumed to be rare. But they are not rare.

Then, also, there are men who are supporting female caregivers, but probably clueless how to do it. Most probably, this is not what they saw their fathers do. Helping nurture sick people is not something they saw their childhood (or adult) role models do.  Even if they want to help, they don’t know how to. If they are thrust in the role, they fumble more, suffer more identity crisis.

I guess if we want caregiving to be smooth and stress-less, we need to look at how to enable male caregivers to caregive better, and also help men living with female caregivers to understand how they can help. I don’t know what this needs, though. Possibly some tailored modules in caregiving training, some support group sessions focused on these specific problems, some ways to reach male caregivers who may hesitate to openly admit the role and its overwhelm. What else…any ideas?