When an elder in the family has dementia: the impact on children

A couple of months ago, the daughter of a dementia patient told me she was worried about how her children would be affected on seeing a grandparent get angry and accusatory and throwing tantrums. And again, a few days ago, another woman described a scene where her son yelled back at a grandparent who had been yelling. “These are not the ‘values’ I want my son to imbibe,” she said.

I’ve been thinking about this quite a while, and I feel that, in all our caregiver talk and awareness drives, we don’t focus enough on the impact on young children – on what to explain to them, and how to help them cope and adjust. In this context, I chanced upon a very nice article where the author describes how she, as a child, felt about the secrecy around a grandparent’s dementia: Essay: Children need to be brought into the Alzheimer’s conversation.

So what happens in a family when a grandparent acts forgetful, asks questions repeatedly, or says something harsh to the grandchildren? Do the adults act matter-of-fact about it and say it is the nature of dementia, do they take pains to explain things to the child and suggest ways to communicate with the grandparent and cope with strange behavior, do they “protect” the child by pretending nothing is wrong with the grandparent, or do they try to reduce interactions between the child and the grandparent?

Every dementia patient behaves differently, and every family is different in terms of the challenges they face. Some patients say things that hurt – like telling a granddaughter that they had wanted a grandson instead, or berating a child for being dark-complexioned, or short, or fat, or thin, whatever. These are tricky situations to handle, and consoling the children gets tough. In some families, the children get irritated and snap at a grandparent who is forgetful or repetitive, a reaction which typically makes things worse and ends up in a free-for-all yelling match.

Of mirrors, identity, and the faces of dementia

I’ve always been bad at recognizing faces. If you have stood in a school’s lobby, peering at dozens of kids in uniform, not quite sure which of the alleged cherubs is your son, then you know the sort of problem I’ve lived with all my life. I dread to think how this problem will make things worse for me if I get dementia. And I know that for my mother, who had a similar difficulty with face recognition, this would have added to the woes of her dementia confusion.

Most people see the same face, the same person, regardless of the person’s changing expressions. But for me, each person has many faces, depending on the mood or place or what he or she is doing. This means, I have to remember so much more if I want to be able recognize someone. Other clues are not dependable either; people change their styles of clothes, their hairstyle and color, they put on weight, they lose weight….so very unfair, I tell you

Decades of living with or near my mother has, however, made me confident about recognizing her face in all its moods. As I saw her slip into the confusion of dementia, I would watch her once-sharp-and-beautiful eyes look glazed, confused, even dull. I became familiar with those tiny changes in the muscles of her face that indicated the beginning of agitation; I tuned myself to preempt her agitation before it became full-blown. Her face is, to me, a collection of parts, and I know how each feature changes through her range of emotions.

Understanding, believing, denying

Because of my concern about dementia awareness in India, I participate whenever I can in awareness programs, talking to people about dementia and caregiving.   The Dementia India Report 2010 says, “Awareness of dementia in India is low.” I see this as a polite understatement in a country where people usually fail to recognize dementia as a medical problem because they see the symptoms as either normal old age, or a mental problem (read: madness). Many (most?) doctors are not alert about dementia.

Awareness of anything, as I understand, needs both information and belief.

Usually, when we explain dementia, the focus is on disseminating information (and maybe case studies/ stories/ incidents), assuming that people exposed to the facts will believe them. But sometimes, even after hearing or reading about dementia, people don’t register what it is.  Information percolates only if people are willing to believe it, and many things come in the way of believing that dementia symptoms are caused by medical problems.

Care for everyone but a dementia patient…

Time to start writing about the changes I tried to make in my life to handle caregiving better. This is going to be another set of mistakes laid bare on the page, sigh, braided together with spots that worked…

But before I start examining and describing what I did,  let me step back to look at some basic premises.

A lot of people I meet say that everyone makes adjustments to take care of elders, and I think what they wonder is why talk/ write about something everyone does–surely, it could not be that different for dementia patients.

So I’ll start this phase of my blogging by describing my caregiving experience for my father, who was absolutely sharp mentally right to the end. Sharp, articulate, and very aware, even on the last day of his life.

Being the Wind, being the Sun

I read a story long ago of the Sun and the Wind arguing about who is more powerful.

Then they spot this man walking on a road below, wearing a cape, and decided that whichever of them could make the man take off his cape was the more powerful one. Wind took the first turn, and blew a gale hard on the man, hoping to force the cape off him. The man only drew it close around him, gripping tightly like his life depended on it. The harder the Wind tried, the tighter the man clung to his cape. Then the Sun took his turn, and shone gently on the man, and the man relaxed and took off his cape.

Of course, the story doesn’t make all that much sense if we factor in that the Wind did the only thing it could, and so did the Sun. But I always think of this story when I remember my years of caregiving for my mother.

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

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

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

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

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

Caregiving, identity, impermanence

As caregiving has occupied a larger and larger chunk of my timeshare, mind-share, emotion-share, my sense of identity has become tightly-bound with this role. I find it affecting all my other roles, and it remains in my mind like a persistent buzz, even when I am not handling any related work.

For a while now, this has puzzled me.

First off, there is nothing unique about handling multiple roles. All of us juggle roles, and cope with it. Even a school-going boy balances between roles: student in class, boy playing cricket, participant in a painting competition, fond (or not so fond) son, polite son of colleague at his father’s office party, and so on. When older, the balance moves to balancing job roles (boss, subordinate, colleague), family (parent, child, sibling, spouse), participating in community activities, and so on.

If I could do it all over again

A natural part of retrospection is wondering how things would have been different if, some years ago, I had known what I know now about dementia and caregiving. This is not an exercise in regret or guilt, more a way to deepen my understanding of the past, and also, perhaps, to help me answer questions when neo-caregivers ask me about the journey ahead of them.

Some things are obvious. I should have learned more about dementia and caregiving as soon as it became obvious that my future was intertwined with these. I should have built up my toolkit, connected with the community, shared my experiences and heard others share theirs. I should have been more patient, more loving, more understanding….

But one thing does not come out in this list, which is to me, more important. I am not sure a neo-caregiver, dreading the role, would even bother to hear me talk about this – but here it is: given a chance t do it all over again, I would have more fun-times with my mother.

slipping one unfiled paper at a time

This is an anecdote, but not about a dementia patient. This is an experience related to me by a friend, and about her father who remained mentally alert till he died.

My friend, let’s call her R., lived near her father – a professional who had been very organized all through his work-life. After retirement, he remained particular about his records and filing. Once, when he fell ill for a prolonged period, R had to look through his papers, and realized that they were somewhat disorganized as the files her father was using were the old government tag-file types.  He had also not kept a record of his earnings as his tax was below the minimum limit.

this month, a year ago

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

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

there and yet not there

Nowadays, my mother sleeps for most of the day, and the rest of the time, she looks sleepy. I have tried holding her hand and talking to her, she smiles lazily, sometimes utters a word or phrase, and then closes her eyes.  If I ask her whether she is sleepy, she nods her head.

This is not a sudden change, but it took me a while to register this new ‘default’ state. I realized yesterday that we had not played games with her for a number of days, because whenever I suggest a ‘game’, she shakes her head. I have managed to make her count my fingers, or identify colors and objects, but even that seems to tire her, and so I have to stop after a short while.

A year ago, she would do small jigsaws, place rings on a rod, and play games where  she recognized or matched colored pictures. She saw albums and commented on them. We used picture charts. She even read a few phrases from a large-print Panchatantra book.  She could read aloud letters from her grandson (written in simple sentences, printed out in large font). She practiced her signature every day, and sometimes managed it almost correctly.

dependence

When my mother  was younger, she was fierce about her independence. She always said she would never become dependent on anyone, that she would rather die.

Then, as she became older and her physical and mental abilities reduced, her definition of what was ‘dependent’ kept shifting, always remaining slightly beyond where she currently was.

In my mother’s case, her dementia compromised her ability to understand the progressive nature of her problem and the inevitable growth in her dependence; it is hurtful to see that a person who valued independence so much can do nothing about her state, and understand nothing.

But thinking of her earlier determination not to become dependent, I cannot help wondering why the idea of dependence is so unacceptable to most people.

I think it is easier to say you will never become dependent or inconvenience people in the phase of life when you are independent. When I think of it, I cannot remember even a single person who, while dependent, remembers and acts upon this need to ‘not depend’.

I also think this concept of ‘never being dependent’ is often more about ego and sounding correct. It is wrong to inconvenience others; so, saying you “would rather die” sounds correct and possibly a bit heroic.

Why do people say they do not want to become dependent? Is it out of consideration for the potential caregiver, or is it ego, or both? I think it is very difficult to accept help gracefully, and it may be easier to refuse help (or ignore the help you are getting) than to accept it in a way that is fulfilling to both the giver and the receiver. I often think of the book, Tuesdays with Morrie, as an example of how people can ask for help and receive it with dignity.

Here’s a thought: most of us, if we don’t die in accidents or of a heart-attack, will end up in a dependent state for at least some time. It makes sense to be emotionally ready to accept this gracefully when it does happen–though we may try our best not to reach that state.

Consider an old man, determined to remain independent, frustrated and angry at an illness that makes him bed-bound, always talking of how he hates this dependence, and trying to sabotage his recovery process by getting up to do things (against medical advice), because dependence is abhorrent to him. People around him are equally irritated, and everyone is always frowning. There are no thank-yous, no smiles, only one man proving he does not want to ‘inconvenience’ people, and others arguing with him to accept that he cannot do anything himself.

Contrast this to someone who accepts that her current state makes her dependent, is ready with smiles and kind words to her caregivers, and asks for help in a simple, direct way. People around her may be tired, but they feel valued for what they do, and often find themselves smiling back at the patient.

Which patient would you rather caregive for? And which patient would you rather be?

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going down, a day at a time

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

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

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

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

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

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

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

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

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

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A new phase of caregiving: a bedridden mother

I find myself strangely shy as I try to act out on my intention to blog every day through this month; as part of my attempt, I am wondering how I managed it last year, and I am surprised to find how very different my life is now.

My overriding mindshare, both last year and now, is caregiving, but the texture has changed completely.

Last year, I was busy accepting that dementia had altered my mother’s way of talking and responding, and that the changes in her memory and abilities (and the frustration they caused) were the main reason her behavior required a new paradigm of interaction. My focus was two-fold:  one, creating a method of interacting that took her reality into account; two, introducing whatever was possible in her days to stimulate her mentally within the bounds of her abilities, while making sure she had enough ‘successes’ to enthuse her to keep doing her best.

Over the year, on the plus side, we found that the behavior problems most caregivers face (and that I faced earlier), vanished and everyone was, consequently, more content and less stressed.

However, dementia is a progressive disease without a cure, and progress it will, whatever you do. The pace may vary, and the specific of the sequence of deterioration may vary, but the direction is the same: downhill.

And so, by the end of the year, my mother reached a completely bed-ridden state. She barely talks, and while we are trying to see whether any medical/ nursing approach can help, the overall thrust of caregiving has changed. While earlier, too, we were focused on making sure she is comfortable and feels secure and loved, this is now a major part of the approach. That, and trying to ensure we understand every clue about what she wants or whether she is in any discomfort.

For example, while feeding her (food has to be spooned in her mouth), we have to make sure she is swallowing it properly, and sense whether she wants to eat more or not (check facial expression, check burps, check that turning away of the face or the opening of the mouth).  She does not tell us when she is cold, thirsty, or in pain — again, body language is all we have.  She sometimes nods or shakes her head if asked very simple questions, but most of the time, she looks somewhat blank. For bulk of the day, she sleeps.

Yet, despite this significant deterioration, this extreme helplessness, she responds to affection, and is is both easy and fulfilling to given her the emotional company she wants. Sometimes I find myself just holding her hand, not speaking, for several minutes, without thinking (as I would have earlier, and as an observer may feel) that I am ‘wasting’ my time. She cannot eat her food herself, but when I put my hand in hers, she grasps it back with a strong grip and sometimes even pulls my hand to touch her lips, as if for a kiss.

I have not fully re-adjusted to this new phase of her dementia, but it is not as difficult as I thought it would be. Possibly, she is being productive in a meaningful way, because all of us around her find ourselves more able to give and accept love, at least while we are with her.

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

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

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behavior of concern

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