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His condition affected every sphere of my life: a son talks of his father’s Alzheimer’s

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Varun (name changed) is a writer whose father has dementia (Alzheimer’s). For a few years, Varun helped his mother care for his father, but later, his mother decided to move with the father to their hometown because she felt he would be more comfortable there, and care would be simpler with relatives and friends around them. Below,  Varun shares his experiences and thoughts about caregiving. [note]

“Varun”, who gave this interview anonymously in November 2010, continued to ponder and process his caregiver experiences and, increasingly began sharing them with friends and caregivers. He is now open about this aspect of his life, and wishes to give his real name: “Varun” is “Eshwar Sundaresan.” We have retained the interview below as originally published, and have also added, at the bottom of this interview, the link to a blog post he made in September 2013, where he shares his personal growth derived from his experiences with his father’s dementia.

Dementia Care Notes: For the period your father was living with you, how did his condition affect your work, leisure, and social life? What sort of adjustments did you need to make to balance your other roles/ aspirations with this responsibility?

Varun: His condition affected every sphere of my life.

I don many roles in my professional life – writer, journalist, consultant, and others– and I began staying at home more than usual so that I could handle any emergency that presented itself. I inevitably lost some revenue, but I felt that my mother needed my presence in those first three years. On two occasions, I went overseas on important assignments and I was forever anxious about the home front. My mother handled him extremely well in my absence. During these overseas stints, I also had the guilty realisation that I was enjoying my father’s absence. By not seeing him and my mother suffer on a daily basis, I felt… liberated. I admonished myself for being a bad son, but I couldn’t ignore this overwhelming sense of relief flooding through me.

My leisure time and social life dipped to zero.

My leisure time and social life dipped to zero. If I felt like having a drink – and I did feel like that often – I drank at home, after everybody had gone to sleep. Interactions with friends happened through my laptop. Happiness moved online. I decided not to have any romantic relationships in my life for many reasons. One, I wasn’t in the frame of mind to actually contemplate romance. Two, I didn’t want to complicate my life further. Three, I knew that a special new person would draw me away from my immediate responsibilities.

The only positive development, if I could call it that, was that my father’s condition inspired me to write a short story which won an award.

Dementia Care Notes: Can you share a few challenging situations you faced while caring for your father? Can you tell us how you handled them?

Varun: Almost all the day-to-day problems we face with my father revolve around smoking. Around two years ago, I and my mother decided to curb his habit and we’re still facing the consequences of that decision.

Ever since we rationed his cigarettes – to around 5 a day – he began stealing from home to fund his habit. No matter how well we hid our wallets and purses, he dug them out. We soon realised that in this one aspect – his desire to smoke – his resourcefulness exceeded that of a “normal” person. On those days when he didn’t find any money, he began buying packets from the local shopkeeper on loan. Of course, once the nicotine entered his bloodstream, he had no recollection whatsoever of having asked for the loan. On one occasion, he willingly accompanied me to the shop and blasted the shopkeeper for lying through his teeth. ‘Everybody’s a crook,’ he thundered. Of course, the next evening, he was back at the shop, begging for cigarettes.

Once the loan-route was sealed off, he began scanning the roads for cigarette butts. If he found a butt that could offer a single drag, he’d pick it up – no matter how filthy it was – and smoke it. This new development worried us no end. We could somehow endure the social stigma of such behavior, but what if he were to catch an infection from a cigarette butt?

We temporarily reverted to his earlier quota of cigarettes, but he did not give up the practice of picking up butts from the road. This has now become an enduring ritual and we have no idea how to deal with it.

Now, he’s acutely aware of when he will be given a cigarette – like, after the morning coffee, after lunch, after the evening tea and then after dinner. So meals and beverages have become harbingers of nicotine for him. He wants to rush through them so that he can get his cigarette. Even the slightest delay in placing a cigarette in his hands provokes extreme anger. At all other times, he’s meek as a kitten.

Our only hope is that memory – which has been reduced to less than a dozen sketchy details in his mind – one day refuses to remind him that he’s a smoker.

From the above account, you may have also realised that he has become schizophrenic. One moment, his mind is plotting its way to a cigarette and the very next, he believes himself to be innocent as a lamb. At such times, he accuses us of being callous. ‘Nobody understands me,’ he cries.

He’s almost always anxious and, as is common, he keeps repeating his questions ad nauseum. When he’s visiting his sister, he assumes her to be his daughter (my sister) and keeps fretting that his grandchildren have not returned home. All we can do is calmly tell him that his grandchildren are safe and happy in another city and he has no reason to worry.

Dementia Care Notes: Often, spouses find it difficult to move from a partner role to a carer role. Can you share how your mother handled this transition? How do you think a child can support a parent who is caregiving the other parent? Any advice, looking back?

Varun: My mother is like the Rock of Gibraltar. She’s a natural caregiver. Having spent her youth in a joint family that expected her to be the dutiful daughter-in-law, she’s used to taking care of the smallest needs of a large group of people. So she barely flinched during the transition from the role of a partner to that of a caregiver.

She was, of course, shaken by the first diagnosis of dementia. During that time, and later during particularly stressful times, I just offered her a shoulder to cry on. She didn’t expect much more than that. Other than that, I interfaced with doctors and informed her of time-tested techniques from the medical world. Whenever she resisted the proper caregiving technique – because it went against her instincts – I persisted with my talks till she accepted the technique. For instance, she became quite defensive of my father when someone wasn’t empathetic enough to his condition. Alternatively, she’d try to reason with my father to behave more rationally. In such times, I had to ask her to let him be. People suffering from dementia do not understand logic. But they do understand a hug, a squeeze of the hand, a caress. My father’s especially fond of hugs. He doesn’t care who gives it or why it is being given. He responds very positively to that form of affection. So we try and give that to him. As much as possible.

I think that in today’s day and age, the child can help the parent the most by:

  • Being there, as much as possible.
  • Reassuring her that society’s perceptions does not matter two hoots. My generation finds it easier to accept this premise and I can, therefore, sell the idea to my mother.
  • Exploit the power of the internet to keep her informed.
  • Remind her that she has the resilience required to undertake this super challenge.

If I were offered the twisted choice – as to which of my parents should be affected by this condition – I’d choose my father. Because women have an infinitely larger capacity to handle pain than men. So my mother can, all said and done, take much better care of my father than vice-versa.

Dementia Care Notes: Were there things you considered or did to improve your father’s quality of life? Did it seem possible? Any tips?

Varun: My father was an ‘extra-strong’ personality in his prime. And his assertive attitude survived the advent of the disease. I realised very soon that there was no way he was going to turn obedient. We had to accept his wishes, whether we liked it or not. All we could do was to make sure that he wouldn’t harm himself (he isn’t the kind of person who’d harm others).

So these were the decisions I took:

  1. He insisted on going to the temple every morning, unsupervised. We knew it was to scout for cigarette butts on the road. And to dip into the priest’s plate for a coin or two. But if he was denied this outing, he became furious. So I decided that he would visit the temple, come what may. My mother, when she visited the temple, dropped enough coins on the plate to compensate for the priest”s and the Lord’s loss. Once he returned from the temple, he was calm. The rest of the morning and afternoon passed like a hazy summery dream.
  2. In the evening, he’d again want to go to the park for a brisk walk – and I mean brisk. Even today, he sets a Gandhian pace for the rest of us. We were reassured by the fact that the park was quite close to home. And the locality we lived in had become familiar with him and his ways. Like the kind shopkeeper, who never took offence to his outbursts, the people in the neighbourhood would, we felt, return him safe to our home in case he got lost. But he never did. In fact, he self-regulated his walks. During the first year, he would walk into distant neighbourhoods, sometimes through thick traffic. But as soon as he realised that he was losing his bearings, he restricted his walks to shorter distances. Soon, his walks began and ended in the local park. This self-regulation, I think, was put in place by his fear of getting lost. I, for one, did not want him to vegetate at home and lose his physical health – which, touchwood, is still rosy, thanks to his penchant for walking. So I decided that there would be no restrictions on his walking and I think it’s one of the best decisions we’ve taken.
  3. Upon a doctor’s advice, I prepared a photo album for him, tagging each photo with detailed annotations and dates. We kept this album within his reach. He’d open it every day and pore through it, as if he were seeing it for the first time.
  4. I took him and my mother for a workshop held by my city’s ARDSI chapter, a magnificent organization that helps families like mine. At that workshop, my mother listened to experts and other caregivers. Knowing that we’re not alone in this situation helped her a lot. She also got plenty of practical tips on how to handle aggression, repetitive questions etc.

  5. My suggestion is to map behavioral patterns with the times when a particular medication was initiated. You might make a discovery.

    We consulted various doctors regarding his medication. I had a feeling that Donep (and other brand names of the same compound) was not really helping him. If anything, it was making him more aggressive. Some doctors insisted that better results would be achieved over time. But even after years, the medicine achieved nothing productive. I consulted another doctor and with her blessings, stopped Donep on a temporary basis. We found that his mood actually improved. He was a little more lucid and a little less worked up. I suppose these drugs do have different effects on different people. Some other victim’s reaction to the withdrawal of Donep might be entirely different. My suggestion is to map behavioral patterns with the times when a particular medication was initiated. You might make a discovery.

Dementia Care Notes: Your mother finally moved along with your father to their village. What sort of pros and cons were considered while making  this move?

Varun: Well, my mother did not allow me to consider pros and cons. She was quite convinced about the move. I wasn’t. So I requested the professionals from my city’s ARDSI chapter to pay a home visit and talk to her. They did and realised that she had made up her mind. So they advised her on caregiving and also to report any discrepancy in my father’s behavior at the earliest.

There are many reasons behind my mother’s relocation. I can speculate on and/or verify a few of them:

  1. She wants to be closer to the temples she loves to visit.
  2. She wants me to rethink my own life and, perhaps, find myself a life partner. She’s come to believe that this cannot happen with them over here.
  3. She thinks that my aunt – who lives a stone’s throw away from her new residence – will offer enough emotional and physical support in case of an emergency.
  4. She feels that this is her cross to bear. And hers alone.

I have never been convinced about this move. A room in my home remains empty, awaiting their return. For the time being, I had to restrict myself to a few basic parameters:

  • Their new residence is a condo which has excellent security arrangements.
  • Around 70% of the residents of the condo are retired folks who offer great company to my mother.
  • The locality is small and cosy. Everybody knows everybody. Even auto rickshaw drivers will take you home without asking for the address. It’s that easy to get that familiar with the others. It’s the kind of place that will accept my father’s idiosyncrasies and even celebrate them!

For now, that place is their world. And I’ve made my peace with it.

Dementia Care Notes: Are there any problems being faced because your parents are now in a village? How are these being handled?

Varun: As of now, there are no logistical and day-to-day problems. The locality has accepted my parents and there’s home delivery for everything.

But my parents are currently travelling in Gujarat where my father has, on one occasion, displayed mild violence because he was denied a cigarette on time. This has made me anxious for my mother. I wonder whether she should be allowed to stay all alone with my father. What if he becomes more aggressive? So my plan is to reassess their situation once they return to our hometown and, maybe, veto my mother’s decision to stay on their own.

I fear that, at the moment, my mother’s desires are in opposition with my father’s. My mother wants and deserves a break every now and then. From time immemorial, her idea of a break has been to travel to a close relative’s home. She wants to continue this practice. But, of course, every new place adds a dimension of disorientation to my father’s mind. My mother is still young and she certainly must lead as full a life as possible. Knowing this, I’d like to explore day care or fulltime care options for my father. But my mother is quite averse to this suggestion because she feels that my father will collapse in her absence. She has circumstantial evidence to back this claim. If he doesn’t have her in his sight for more than a few minutes, he panics. So my mother is even more sceptical about allowing others to take care of my father.

A qualified doctor friend recently told me that in these cases, the caregiver becomes as dependent on the victim as vice-versa. The caregiver begins to define her own life on the victim’s condition. Without the victim’s dependence, she herself is lost. So I must watch out for this co-dependence angle.

…my mother’s state of mind must remain the most important consideration in whatever decision I take.

Having said that, I know that my mother’s state of mind must remain the most important consideration in whatever decision I take. I cannot unilaterally take a decision based on rational thought. I must make sure that she’s onboard with the decision, whatever that is.

In all these situations, I become painfully aware that I’m, after all, a secondary or tertiary caregiver. The brunt of the ailment is borne and best understood by the primary caregiver alone. I cannot be the referee in this tug-of-war against Alzheimer’s.

Dementia Care Notes: Have you and your family considered how you will handle care when your father deteriorates? Can you share some criteria/ decisions on this?

Varun: I’m quite clear that, when my father is physically incapacitated, we must have a fulltime nurse to assist my mother. Perhaps the nurse will be required before that stage. I’m mentally preparing myself for adult diapers, bedpans, a special bed, bedsores, the smell of disinfectant in the air and the constant anxiety all these things introduce to a household.

All I can do is prepare financially for this era. I’m utilising my father’s absence to undertake lucrative assignments that will fund these times.

It’s amazing how Alzheimer’s teaches one to walk the invisible line between emotions and pragmatism.

Ideally, I’d like my mother to rediscover the joy of life at her age. Maybe explore hitherto-unexplored opportunities. She doesn’t have to be chained to his bed till he passes on. I fear that, when my father does pass on, she’d be left rudderless. So shouldn’t she find parallel meanings in life right now?

…but the final decision on my father’s caregiving model will be my mother’s alone. I’ll give myself no option but to support her.

But, as I said before, I cannot make these decisions on her behalf. I’ll continue to talk to her about these things, but the final decision on my father’s caregiving model will be my mother’s alone. I’ll give myself no option but to support her.

Dementia Care Notes: Overall, based on what you have seen so far, is there something you would like to share with caregivers who are just starting their caregiving journey?

Varun: To the primary caregivers, I’d say: don’t judge your loved one who’s suffering untold inner turmoil. Let him or her be. You’ll rue the fact that he is a shell of the splendid human being he once was. All the good traits will vaporise and all the vices will amplify. Don’t remember this shell. Remember the past. Remember that he was a great husband/father (or mother/wife).

To the children of the primary caregivers, I’d say: put aside your otherwise perfect life when you address this condition. If your spouse is not empathetic about your suffering parents, then find a way to balance the present and the past. Give your parents a life they deserve while not compromising the future of your marriage or your kids. The modern spouse cannot tolerate loss of control over the TV remote. So please don’t get worked up over his or her inability to tolerate the loss of peace. We live in a transitioning society. It’s up to us find the middle path. Our children may or may not turn up at our funerals. But we must delay the funerals of our parents. More than that, we must make their last mile as happy and memorable as we can.

Thank you, Varun.

Eshwar Sundaresan, writer, talks openly about his father’s dementia and about caregiving, and wishes to acknowledge his identity as “Varun” above. In September 2013, Eshwar wrote a detailed blog entry sharing more related experiences and thoughts (click here: They understand only love Opens in new window); this blog entry helps us appreciate how he has integrated and grown because of his father’s dementia and the related caregiving environment in the three years since the above interview.

Thank you, Eshwar!

[This is part of the caregiver interviews on this site. View the list of all caregiver interviews].

Note. This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of persons with dementia, their families, the care environment, or professionals. Every patient, every family is different and so is their experience.

Care in a dementia day care centre: a social worker explains

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Jincy Shiju is a social worker at Dementia Day Care Centre, Bangalore (a service run by Nightingales Medical Trust).  Currently, the centre services six dementia patients for day-time care on weekdays. The activities of ARDSI Bangalore Chapter are also carried out through the Centre. [note]

Dementia Care Notes: Please describe the steps you follow to admit a patient for the day care facility.

Jincy: When a client’s relatives approach us for day care facility, we first ask them to get the client assessed by our doctor. During this assessment, our doctor checks the client’s current status and identifies which areas to focus on during rehabilitation and care. We next gather information about the client from the client’s family, using our “client social profile” format, and we sit with the family to get clarifications and additional data about the client.

At the end of this information-gathering, and before we take in the client for actual care, we are therefore well informed about the client’s personal and social history. For example, we know:

  • Client’s personal history, such as preferred name, school/ education, occupation, cities lived in, languages known, family details (such as spouse, children, grandchildren and others), friends/ neighbours, pets.
  • Special memories and anecdotes.
  • Social involvement, such as whether the client likes to socialize, social activities enjoyed, etc.
  • Emotional habits, such as how the client expresses emotions such as joy, sorrow, does the client like to be touched/ hugged, how the client expresses frustration.
  • Religious beliefs and habits.
  • Behavior challenges.
  • Routine the client is used to.
  • Food habits, likes and dislikes.
  • Hobbies, activities that the client likes or may want to try.
  • Whether the client likes intellectual activities.

Dementia Care Notes: How do you handle new patients when they are admitted?

Jincy: We use a gradual approach to help the client adjust to the day care facility and staff.

The first day, the client stays with us only for a few hours, and a relative remains present.

Over the next few days, we increase the hours of the client’s stay with us. The relative remains present at the facility but sits in a different room, not visible to the client. The client is handled by our staff without the help of the relative. We use this adjustment period to get more comfortable about the client’s habits and likes and dislikes, and ask the relative for more data as we need it. The client, too, starts adjusting to our staff and facility.

Usually, after a few days, we are able to care for the client from morning to evening, and the relative no longer needs to be available for consulting.

Dementia Care Notes: Do you provide food? Are the patients comfortable eating the food you provide?

Jincy: Some families send food with the clients, and we heat and serve it at mealtimes. Others are happy to let us provide food to the client.

Dementia Care Notes: How well do the patients adjust to the day care?

Jincy: Some clients show better behavior here as compared to the agitation they show at home. Others seem agitated and restless and keep saying they want to go home. We usually manage to engage the clients in various interesting activities, and distract them from restlessness.

Sometimes, we do face problems such as restless clients trying to wander, or clients getting angry and aggressive.

Dementia Care Notes: Are some clients reluctant to come for day care?

Jincy: Yes, some clients tell their families that they do not want to come. Sometimes they even refuse to get out of the car and enter the facility. We have to persuade them. But once they enter the facility, they seem happy enough and spend the day peacefully.

Dementia Care Notes: Can you give some examples of how you handle challenging behavior?

Jincy: One of the problems we face is of wandering. Clients get restless and want to go out.

We first try to calm the clients by talking to them. If they want to walk around, we stay close with them or follow them, or we take them for a walk in our garden or to the park nearby. We do not stop them from walking, but make sure they are accompanied. As soon as they seem calmer, we guide them back to the facility.

Sometimes, we also stop wandering by locking the main door, so that they can only wander within the facility. If asked, we pretend that we have misplaced the key, or that the key is with a staff member who is not present and will be back shortly. We then try to distract the client.

Some clients insist they want to go back home. We never refuse this need, but let them know that their family will take some time to come. We may pretend that we have called the family, and that the family members are taking time because of a traffic jam. Or that our van cannot drop the client home back right now because there is no petrol or the driver has gone for lunch. Often, reassuring the clients that they will soon be going back is enough to calm them down for some time. We also try to distract them by sending along a different staff member to talk to them.

On a few occasions, when clients seem extremely restless, we may have to request the family member to come. We once had a patient who tried to climb out of the facility and was extremely agitated. After the family member arrived, however, he was very calm and it was difficult to believe that he had been so agitated just a short while ago.

Dementia Care Notes: So, in some situations, you need to call the family during the day, to ask them to take the patient home?

Jincy: This may happen for medical reasons, or extreme behavior challenges, but is not common.

In case of medical problems, in addition to immediately informing the client’s family, we also call in doctors from the neighbouring hospital to assess the client’s problem and advise us. Sometimes, the client is too unwell to stay at the day care, for example, he/ she may be having a severe asthmatic attack. Then we ask the family to take them home or to a hospital.

Sometimes, when the client is very agitated and insists on family presence, and when we are not able to calm the patient, we inform the family and request some member to come. In such cases, the client usually calms down on seeing the family member, and the family member is able to then leave. Or the family member takes the client home for the day.

Dementia Care Notes: How often do you need to call in the family to ask them to come or take the patient away?

Jincy: We have six clients currently. We usually do not need to call any of their families for help more than once or twice a month.

Dementia Care Notes: How often do you communicate with the family regarding the patient’s status and activities?

Jincy: Every day. We have a register in which we note down the daily report for a client. This is shown to the family every day by the driver who drops the client home at the end. The family signs an acknowledgement for having read this, and also uses the same register to note their comments and to inform us of any change in the client’s status or of any other problem.

In addition to this, family members call us whenever they need to tell us anything, and we also call them in case we need more information, or are facing a problem.

Dementia Care Notes: You have patients from different regions of India. Is language a problem at times?

Jincy: Usually, we are able to understand the client’s language because we have staff members who know the language, or are able to guess the meaning by asking questions. Once in a while, we face problems with a particular word; in such a case, we call the family to find out.

One such incident was when a client kept saying “peshaab” and we did not know what it meant, and were unable to guess. The client seemed insistent and agitated, and soiled himself by the time we managed to contact the family and understand that peshaab means urine.

Usually, however, families inform us of the words the client will use and we are prepared for handling the client.

Dementia Care Notes: Under which situations do you refuse to accept a patient for daycare?

Jincy: Currently, we do not accept bed-ridden patients for day care. However, we have another facility, Nightingales Centre for Ageing and Alzheimer’s, that accepts bed-ridden patients for short and long stay.

Dementia Care Notes: Are some of the patients incontinent? Do you accept such patients? How do you handle incontinence?

Jincy: Most of our clients are able to tell us when they want to go to the toilet. We also keep watching them for any restlessness. In any case, we take them every hour or so, so that there is less chance of accidents.

In case of accidents, we clean the clients and change their clothes. We have extra sets of clothes for such accidents.

Some clients, who are more incontinent, use diapers.

Dementia Care Notes: What is the ratio of patient to nurses right now at the day care centre?

Jincy: The ratio is one nursing aide to 3 patients.  The nursing aides are trained staff who help them with various activities, and two social workers who provide training and guidance and make sure that the care is being given properly. There is also one housekeeper and one driver.

In addition to these persons, we also often have volunteers and counsellors who come in for additional support.

Dementia Care Notes: What sort of activities do the patients spend their time on?

Jincy: In addition to the normal activities like walking, going to the toilet, and eating, we have activities that clients enjoy, such as games. Our staff spends time talking to the clients if the client likes it. Sometimes, we arrange for programs like pet therapy and art therapy. We also take clients for outings. The type of activity and the time spent on it depends on the client’s ability and interest.

Thank you, Jincy!

The day care centre described above is no longer operational, you can check our city wise resource pages for what is currently available in various cities.

[This is part of the expert interviews on this site. View the list of all interviews of health care professionals and volunteers.]
Note. This is an interview of an expert/ volunteer. The views expressed and the suggestions given are those of the interviewed person, and not a recommendation being made by Dementia Care Notes. Suitability and applicability of the suggestions remain the responsibility of the reader. For professional advice suitable for your situation, please consult an appropriate professional.

Conflicts in the family over dementia care

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Sarla (name changed) lives in the USA with her husband. Her mother-in-law, who lived in India, passed away after suffering from Alzheimer’s for some years. In the detailed account below, Sarla describes the progression of the disease and the care, and how the family’s lack of communication, resentments, and conflicts came to play in the situation. We see the whole gamut of the experience–the initial denial, the spouse hiding the loved one’s problems because he wanted to remain independent and not bother his children, the problems of caring from overseas, the lack of coordination and trust, the clashes and criticisms because of differing perspectives over what care constituted, and what the end-of-life decisions should be. [note]

Sarla gives her conclusions at the end. We, as readers, may draw our own lessons on what we can do in a similar setup to avoid the problems faced by Sarla’s family while caring for the ailing mother-in-law.

Coping with Alzheimer’s from 10000 miles away

By Sarla (name changed)

You want to get on a plane and be there but also know it is not feasible every time. You live here and they live there and that is the reality today.

What is it like to monitor a serious sickness of a loved one from 10000 miles away?  You get a call early morning telling you of a problem. You stay awake all night (being 12.5 hrs behind) waiting for updates. You try to hide the panic you feel (everything seems so much more scary because you are not physically there) and stay calm for the parent who is handling the crisis.  You want to get on a plane and be there but also know it is not feasible every time.  You live here and they live there and that is the reality today.

This story is about my mother-in-law and her Alzheimer’s Disease, about her care, and how our family of three siblings, two overseas and one in India, was unable to coordinate her care cordially for her sake.  All the players thought they were doing the best at that time.  It is about choices we all made in our lives and the consequences of those choices.  It is about Amma and Papa’s indomitable spirit in the face of overwhelming health problems. And how Amma and Papa suffered, and the situation shook up and shattered the fragile balance of our family.

My mother-in-law (Amma) was an energetic vital person with a love of life, family and friends.  When she got breast cancer, she fought it with her typical aplomb.  Doctors were amazed at her progress.  When the cancer came back in the bone, she fought it again.  Being a woman of a generation where she was more used to doing things for others than herself, she felt guilty at the money that was being spent on her treatment.  But she retained her fighting spirit.  She loved perfumes and on one of my visits informed me that she had given all her perfumes away as she could no longer smell. The doctors did not have an answer to that.

The first sign of her behavior problems came in Aug 2004.

But before I continue, let me explain the composition of our family. My parents-in-law (Amma and Papa) have three children. My husband is the eldest son; there is another son (my brother-in-law, Bhaiyya, who is the youngest) and one daughter (my sister-in-law, Didi, who is the oldest).  Both the sons live in USA.  Didi lives in Delhi.  In 2004, when the problems were first noticed, Amma was visiting Didi.  Bhaiyya was in India for a visit, which made it a packed house with various spouses and children. Amma got disoriented about where she was.  Bhaiyya took her to a doctor, who did an MRI, found some ‘anomalies’ and recommended some medicines, saying it would help her memory.  Amma refused to have them.  My husband, visited soon after and he, too, was not able to convince her to take the medicines.

But Papa insisted that she was mostly ok and this was just aging. He was a very tough person and wanted to appear even tougher to his children who lived far away so they did not worry.

When we would call Papa from the USA, he would tell us that Amma was forgetting more.  He told me this when I visited them in Delhi in Sep 2005.  I found Amma to be a little quieter.  She showed some signs of memory loss (asked where Didi  was and then recalled that she lived in another house).  But Papa  insisted that she was mostly ok and this was just aging.  He was a very tough person and wanted to appear even tougher to his children who lived far away so they did not worry.  Amma was a fun loving person, too.  The three of us drove to India gate and had ice cream.  It was, looking back, the last fun thing we did together.  My husband visited in Dec 2005 and they celebrated the parents wedding anniversary with Didi’s family.  Amma displayed most of her spirit and dry wit.  In spite of the fun they were having, my husband felt that Papa was trying to tell him something, but could not draw it out of him.  When my husband returned to the USA, he told me, ‘I guess Amma is having some memory loss but they are hanging in there’.

In those days, (2005) Amma and Papa were living by themselves in an apartment in East Delhi. Amma was 81 and Papa was 90.  They were tough, independent people.   All through Amma’s cancer treatment they handled the doctor visits to a hospital over 20 km away without help.  This was not a small feat in Delhi traffic.

Before I describe how Amma’s condition progressed, I’d like to digress a bit to explain the sibling relationships here, because these created unfortunate dynamics later and affected Amma’s care.

Didi (my husband’s sister) had a stressful life trying to earn a living for herself and her family by giving tuitions. My husband and I had helped her financially for many years, including financing her children’s education.  This had strained our relationship and resentment was building up towards ‘the rich brother and sister-in-law’ who had nothing to worry about. In their mind we had a perfect life in the US  – quite luxurious, and no financial responsibility as we did not have children.

Bhaiyya (my husband’s brother) lived in the US. My husband had put him through graduate school in the US, and supported his family financially for several years.  So there was the suppressed resentment from his side also towards us.

Around 2005, when Amma and Papa were living separately, and Amma had started showing some signs of disorientation, their face-to-face interactions with the three children were limited.

Didi was living in Dwarka, the other end of Delhi. She visited Amma and Papa about once a month and spent half a day with them. Bhaiyya would call Amma and Papa about once a week and talk for 15 minutes. He visited India once in six years because it was too expensive to travel with a wife and children.

We talked to Amma and Papa at least 3 to 4 times a week.  Papa would stay with the same story about Amma.  When we tried talking to Didi to find out more, she told us they were ‘fine’.  My husband tried telling her that she should take Amma to a doctor for a checkup.  She ignored it and continued with the status quo.

The turning point came in May 2006, when Didi went to an extended family function and saw Amma dressed in a non matching salwar kameez.  This made her take notice as Amma was ‘looking bad’ in front of so many other relatives.  She talked to Papa and the truth started to emerge.  In the last few months, Amma had been unable to take a bath herself.  She had no awareness of personal hygiene and would go out with uncombed hair.  Papa finally told us that she would wake up in the middle of the night and get violent with him.  All these symptoms were disturbing and completely new to us – we did not know what was happening to Amma.

What followed was a traumatic time for the entire family.  It was difficult to persuade Amma to go to a doctor – when she was taken to VIMHANS on a pretext, her first reaction was accusing ‘You people have brought me to a mental hospital’.  She was diagnosed with having Alzheimer’s Disease, something we probably knew at the back of our minds, something my husband had been saying for some time, and I did not want to believe.   Various medications were prescribed for this, the most notable one being Aricept.

It was quite clear that Amma and Papa could not live alone any more.  We managed to convince a very reluctant Papa  to move to Dwarka to be close to Didi. This happened in Dec 2006.  He still wanted to live independently, just be in a flat close by.

The move, though unavoidable, made Amma’s condition deteriorate more rapidly.  She was apprehensive about changing her home.  By the time she got to the new place, she was unaware of her new surroundings.  She stopped recognizing family members though she had some spurts of recognition.  It seemed like the change in environment had impacted her negatively.  There was a paid caregiver assigned to taking care of her and preparing the food.  Papa had taken over supervising the caregiver and managing the house.  Didi visited and checked on them when she could.  We, along with US based Bhaiyya, were paying the rent for the house, and for all the household and medical expenses.

I visited Delhi in Apr 2007.  It was a shock to see Amma even though I had been adequately warned on the phone.   Though she had lost the power of recognition, she could be very animated if someone talked to her.  She lived in her own reality, an extension of the life she had led.  It showed me that if a person in this condition could be kept engaged, their quality of life could be better.  Papa was running ragged but as tough as he could be.  He insisted on taking care of Amma, and giving her the medicines himself, something we were no longer confident he could do.  We had already had an earlier episode of him giving her the wrong dosage.   This posed another challenge of care giving – two old people living together where one (Papa) could not and would not be separated from the other.  They were living their destiny together.

This posed another challenge of care giving – two old people living together where one (Papa) could not and would not be separated from the other. They were living their destiny together.

In early May 2007, the paid caregiver left Amma and Papa alone in the house and took off for hours.  Papa tried to help Amma out of bed and they both fell.  As a result of the stress, he had a severe asthmatic attack.  He was always very careful about his health, but his lungs had been getting weaker in the recent years.  They called Didi, who rushed them both to the ICU.  And we got a call, one we would not forget for a long time.  My husband was coincidentally leaving for India in a day (looking back maybe it was fate?).  Soon after he got there, Papa passed away, no longer having the energy to keep going.  He was 92 and had stoically taken care of his wife during her illnesses for over six years.

Until now my husband, Didi, and Bhaiyya had been talking – any resentment between the siblings was well hidden.  Things took a dramatic turn after Papa’s death.  It became about control and stress about assets, though there were not that many assets to fight about.  Papa’s will transferred all assets to Amma, who was unable to act on her behalf.  Their bank accounts did not have any nominees, so were essentially frozen.  Being overseas it was difficult for us to figure out how to resolve this, and Didi had no interest in doing so.  I think she knew we would continue to bear the financial responsibility of taking care of Amma  and eventually their assets would go to her and her two siblings, the direct heirs.  This way her share would not be depleted.  She also probably thought that her brothers would relinquish their share to her as they ‘would not need it’, which probably would have been true had the relationships not deteriorated. It pains me to say this as I write this, but unfortunately we had enough reasons to come to this conclusion.

But we could not take Amma to the US – once again we were confronted with the consequences of the choices we had made by moving that far away.

Amma had a bigger setback after the fall.  She lost mobility and now had to be moved to stay with Didi.   Didi had never treated her very well and this was the last thing Amma would have wanted.  But we could not take Amma to the US – once again we were confronted with the consequences of the choices we had made by moving that far away.  My husband agonized about it a lot.  I tried to console myself with the fact that at least she was not aware of what was happening to her.  But of course she was, at some level.  A few days after her fall, Amma contracted a urinary infection, developed a potassium imbalance and had to be hospitalized.  After being in critical condition, she recovered somewhat and returned home.  But this time she was unable to swallow and had a feeding tube inserted in her.  All this happened in the space of two weeks after Papa passed away.

Even the doctors started saying that her condition was terminal and using a feeding tube was unnecessarily prolonging her life.  Didi felt that she could not bear to remove it.  To be honest, even today I cannot begin to imagine what it would feel like to have to make that decision.  I can just quote something a friend of mine, who initially worked in nursing in the US, told me – ‘at some point it is not about what you feel and how it would affect you, it is about not making them unnecessarily suffer if there really is no hope’.  As we saw, it was easier said than done.

In the United States, a lot has been written and discussed about end of life decisions, living wills etc.  I don’t think it is that common in India.  Amma did not have one but we knew her spirit – she would never have wanted to prolong her life like this.  My husband felt very strongly about this – he also reiterated that Amma had told him in one of her coherent states (before the fall) that she did not want to live any more.  Since there was no written statement, the jury will remain out as to her exact wishes.  One could only surmise them.

The relationship of my husband with his siblings went progressively downhill after this.  We were the ‘evil ones’ who did not want Amma to live.  In  Jan 2008 my husband visited India to meet Amma. I visited a couple of months later, in March 2008–seeing Amma in that condition was something I would not wish on anyone. My husband made a trip again in early May 2008 by which time her condition was worse.  We also felt Didi was spending money with complete disregard to budgeting, as it was not her money.  Didi accused my husband of being unpleasant and interfering.  It did not seem possible to have any meeting ground, and the brother and sister were barely on speaking terms.

Amma remained on a feeding tube for one year.  It was removed by Didi three weeks before she finally passed away, at the end of May 2008.  It was an agonizing time for my husband and I, but we could not find a better answer.  All the siblings had to agree before something drastic like removing the tube could be done.  We got news of her passing away through a text message – neither Bhaiyya nor Didi had even bothered to call us.

Today, almost three years later, my husband, his sister, and his brother, are still not talking.  The distribution of Amma and Papa’s limited assets has still not happened, as we deal with processing of a succession certificate in Indian courts.  All we want to do now is honor their memory.   Without going into details about this, we feel betrayed by the way Didi handled this affair.

What are the lessons I take away from this?  Would we have done anything differently?  Here are some of my thoughts:

  1. If you have very independent parents, as they age, maintaining their independence versus having them move in with you because they need help, becomes a fine line.  By the time my in- laws desperately needed help, we could not get them their preferred kind of help, and they ended up depending on Didi.  It was too late to have them come live with us.
  2. I am aware that when parents move in with one of their children at a younger age, it poses its own challenges – I hear that from friends.  The younger people feel constrained and in some cases find the older people interfering.  The older people have their own opinions about how the younger ones lead their lives.  Some old people are not very nice to their children and daughters-in-law etc.  It is not always possible for everyone to get along.  But I would hope that most younger people would soften, as they see their parents get more vulnerable as they age, and then want to take care of them.  I was a strong proponent of my ‘independence’ when I was younger.  Today I feel it would be a small price to pay if I could make the later years of the life of my own parents better.  I have also observed from watching friends and relatives who have taken care of aging parents while they live with them, that this ends up being the best thing for the parent though it is of course often very hard for the younger people who are caregivers.
  3. These days, at least in the USA, we have more counseling help available on how to handle an Alzheimer’s/dementia patient.  But when that patient is living with their spouse, controlling the behavior of the spouse becomes equally difficult.  They are the same age group with less control over their responses and reflexes.  There are no easy answers to this.

  4. All personal paid care givers, nursing attendants require tight supervision.  Having them know that they are accountable to a younger person may help somewhat.  Without assigning blame, the neglect displayed by the paid caregiver proved to be a costly one for us.  She felt she had complete control of the house with two old people in it – there was not enough accountability.

    In fact I would say that this whole area of hired caregivers needs to be addressed (a topic for another write-up) – we could have personal online reviews of agencies to start with, for example.
  5. We have to find ways to have parents communicate all their problems clearly early so help can be obtained.  It is very generous of them to not want to bother their children, but they have to be persuaded that letting them know everything is the right thing.    I find that older people get even more diffident in their communication.  In my in-laws’ case, I think Amma and Papa might have been comfortable taking help from my husband and me, but we were far away, so they did not want to trouble us.  They were not so comfortable with their daughter, and their pride and self-respect prevented them from asking Didi for help except in desperate situations.  They were hurt by her indifference and had become sensitive.
  6. As loved ones start aging (I use that term because this could happen to anyone, not only old parents) we need to remain observant about changes in behavior and health conditions.  That may help in detecting problems early.   In Amma’s case, I believe all of us were in denial for some time about an upcoming serious problem.  It is too scary to confront, but somehow one has to find a way to persuade the person going through it, that it will help them.  In her case, given the treatments available today, treatment a year earlier may not have helped the inevitable progression.  But in the future there may be other options.  All the symptoms Amma had were new to us and we learnt as we went along.  We started educating ourselves as we went through it.  Years after Amma reported losing her sense of smell, I read an article describing the fact that this could be an early sign of Alzheimer’s.   It seems like new things are being discovered about this, which is encouraging.
  7. Above, I have included some background about sibling dynamics to analyze for myself what caused the relationship to deteriorate to a point of no return.  Maybe some things are very specific to our family situation.  Though we were not able to, I believe one should try one’s best to keep sibling relationships at a workable level.

End of life decisions, however tough, should be discussed at a time when it is not emotional, which is as early as possible.

  1. End of life decisions, however tough, should be discussed at a time when it is not emotional,   which is as early as possible.  Make a living will by the time you are 50.  Ideally don’t let what happened to Amma in the last year of her life happen to a loved one.
  2. In conclusion I would like to dedicate this to Amma and Papa.  Their indomitable fighting spirit and courage through the ordeals will always be an inspiration to us.

Thanks for sharing, Sarla!

[This is part of the caregiver interviews on this site. View the list of all caregiver interviews].

Note: This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of dementia patients, the families, the care environment, or professionals. Every patient, every family is different and so is their experience. Some names and details have been changed to protect the identity of the interviewee.

Taking dementia patients for outings: a volunteer shares his experience

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Satish Srinivasan volunteers two days a week at a dementia day care centre in Bangalore. As part of this, he coordinates activities for the persons with dementia and also takes them for outings. [note]

Dementia Care Notes: Please give us an idea of the locations you have visited along with the patient, and how the patients responded.

Satish: We have been to 13 places so far. Aquarium, Science Museum, Planetarium, Elders Enrichment Centre Malleswaram, Bimba Art Hut, Lal Bagh Flower Show, Ramakrishna Ashram, HAL Aerospace Museum, Bangalore Dairy, Lal Bagh, NCAA, Ragi Gudda Anjaneyana Temple, Durga Puja Pandal.

In all cases, patients responded well and were enthusiastic. Some examples of their responses:

  • When we went to the aquarium, one patient ,who was normally  not communicative, said she had an aquarium at home with similar fish!!
  • There was a particular patient who used to ask me every time I came in as to where we were going today!!
  • One client thanked me profusely after each visit.
  • One client wanted his picture (hard copy) which I gave him. Next time he gave me a 50 rupee note and said thanks. (I had to politely return it to him).
  • They loved the Lal Bagh flower show.
  • They liked playing badminton and cricket and knew the basics.

Dementia Care Notes: Please tell us the state of dementia of the patients you take for the outings. Are they able to walk without support? Are any of them on wheelchairs?

Satish: The patients are either in the early stage or middle stage of dementia. Some walk without support and some with support. Only one client needs a wheel chair.

Dementia Care Notes: What about the toilets at the destinations? How dementia-friendly did you find the locations you visited?

Satish: Toilets are available in all places we visited. Generally, all these places visited are dementia friendly with lifts, wheel chairs etc. available.

Dementia Care Notes: Please give us an idea of the planning that each outing requires, such as how you decide on a destination, and check its suitability for the outing, how you prepare the patients, and how you take them and bring them back.

Satish: A fair amount of planning is required such as:

  • Suitability of the weather (should not be too hot).
  • The place is to be open on the day of the visit. This is to be checked out earlier. Many places are closed on Mondays. Some places are open 365 days of the year.
  • The timings of the visit are also important. Many temples close at 12 noon and open only in the evening.
  • The place of visit should be close to the day care centre so that patients can return to the day care centre in time for lunch. Also, in an emergency, the group should be able to return to the day care centre quickly.
  • Patients should use the toilets before leaving. Those with incontinence use diapers.
  • Water and biscuits are carried.
  • The transport should be road worthy and diesel/petrol to be filled in advance.
  • Camera to be carried to capture happy moments.

The destination should be interesting and not very crowded.

The suitability for outing is verified out earlier by physically checking out the place.

The group travels in a van.

Dementia Care Notes: Please tell us how long each outing is and how you handle it if a patient gets tired midway.

Satish: Each outing is between one to two and a half hours. We normally leave by 1030 am and are back by 1 pm. If a patient gets tired midway, we make him/her sit for a while and give him/her water and biscuits.

Dementia Care Notes: You mentioned once that you find the outings a stress-buster even for the social workers and caregivers of the day care centre. Please elaborate on this.

Satish: The social workers and care givers are very excited about these outings. These outings break their day to day routine which is stressful. Some of the care givers have asked me to organise a visit to Taj Mahal at Agra.

Dementia Care Notes: Based on your experience, please share some tips for family caregivers who want to arrange such outings. For example, tips on planning, on the types of locations that can be visited, or that should not be visited, etc.

Satish: The tips to family care givers would be to do the detailed planning as outlined above. The data base of places to be visited, days open, timings, entry fees, facilities available can be shared with all.

Dementia Care Notes: You conduct activities for patients in the day care centre. Please tell us some more about these activities, such as, which activities do the patients like more, and how they respond.

Satish: Antakshari, carrom, cards, blocks, snakes and ladders, separating seeds, knitting, colouring, painting are some of the common activities.

Dementia Care Notes: Please describe any one popular activity in some detail.

Satish: Antakshari is a very popular activity and patients take part singing songs in their own language etc.

Dementia Care Notes: Please share your tips for family caregivers for conducting home-based activities for their patients.

Satish: I suggest one visits the day care centre to see the range of activities available. Only those activities that interest patients should be pursued.

The family should try and get extended family, volunteers, neighbours  to help in home-based activities rather than try and do it all alone.

Thank you, Satish!

Note: The day care centre described above is no longer operational, you can check our city wise resource pages for what is currently available in various cities.

[This is part of the expert interviews on this site. View the list of all interviews of health care professionals and volunteers.]
Note. This is an interview of an expert/ volunteer. The views expressed and the suggestions given are those of the interviewed person, and not a recommendation being made by Dementia Care Notes. Suitability and applicability of the suggestions remain the responsibility of the reader. For professional advice suitable for your situation, please consult an appropriate professional.

Ekta Hattangady: Fifteen years old when her mother was diagnosed with Alzheimer’s

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Ekta Hattangady was 15 years old when her mother, then 45, was diagnosed with Alzheimer’s. Over the next 4 years, till her mother passed away, Ekta juggled the role of caregiver and student, facing the unusual situation to the best she could. Now much committed to the cause of supporting caregivers, she shares her experiences and perspective below. [note]

Dementia Care Notes: Your mother suffered early-onset dementia. Often, when old people show dementia symptoms, it is attributed to old age. Please describe the sort of behaviors your mother showed which led to the family consulting a doctor for a diagnosis.

Ekta: Well, the above statement said she was diagnosed at 45, but she was demonstrating “peculiar” symptoms for at least 2-3 years before. When I was 13, I remember she gave me a huge sum of money and asked me to manage the household expenses. In hindsight, this tells me that she was aware of her difficulties. Among other things, she’d forget her keys, to switch off the geyser, put off the gas, have no recollection of having eaten, lack of inclination towards company, etc. The GP said it was probably related to her menopause.

But the symptoms grew worse. She had been teaching at the pre-primary of a popular school and they said that she seemed quite lost. She wouldn’t respond to greetings from colleagues, run out of the classroom wondering where she was, and just not be able to complete her sentences.

Finally, we took her to a psychiatrist, supposedly the head of the Indian Psychiatric Association, and he diagnosed her with Schizophrenia. This is the worst thing that has ever happened to my mom or to me! She had an adverse reaction, became violent and it was impossible to deal with her. I still have a mark just below my shoulder, she had bitten me there.

We finally took her to Dr. Wadia in Mumbai, had an MRI at Leelavati Hospital and he said it was EOAD. Some simple cognitive tests – like asking her who the current prime minister was (she said Deve…Deve…couldn’t complete the word Devegowda) and drawing a clock (saw her number going out of the circle) – helped to understand her problem. The diagnosis came not as a relief, but as a terrible blow. I had lost my mother even though she was alive.

Dementia Care Notes: Please share whether your mother registered the impact of the diagnosis. Please tell us how the doctors explained the disease, or prepared your mother, you, and the rest of the family for what to expect.

Ekta: Like I mentioned before, I think mom knew she was sick, just didn’t know what it was. She didn’t register what the diagnosis meant and she asked if she had “menin..menin…” – she meant “Meningitis”.

The doctors only explained how the disease would progress. They themselves probably hadn’t dealt with someone who’d got it so young, so it was hard for them to help us prepare for the worst. Nobody thought that we might need help…me and my sister…

Dementia Care Notes: You were very young, just in your teens, and awareness of Alzheimer’s was low in those days. Please share your understanding at that time of the impact of the disease and what you were expecting. And your emotional response to the situation.

Ekta: This was before the advent of the internet, our information was limited. However, our GP helped us get info from a foundation in the US, I think it was run by Nancy Regan and I did read all of it. My understanding of the disease was perfect, I knew what would happen, but beyond that, I cannot describe anything else. I did what I had to. I guess some days I felt burdened, I felt depressed, lonely, misunderstood…angry…yea…sure…But I felt an innate sense of guilt, because even before the diagnosis came, I knew what it was…and when it came, I felt my mother got AD because I thought she had it.

I carried the weight around for years. Made wrong choices, dealt with it in a completely unsuitable way, but well, there wasn’t anybody around to think that I needed any sort of support or help!

Dementia Care Notes: Please share some incidents (both happy and unhappy) about how your peer group, relatives, and neighbors responded to your mother’s condition and your new role.

Ekta: Nope, no support from family, especially extended family. I took it with a pinch of salt, but I guess I am unforgiving. I do not keep in touch or even qualify them with cordial greetings when I see them, even now. At best, I nod and smile. I accept their decision to not help or understand, and they need to accept that I don’t care about them now.

My friends’ families were much better. I went through my class XII and college days only because of my then best friend’s family…I used to stay with them, and her mom made sure I was okay…ate on time…studied…slept…everything. She took care of me like her third daughter, and I am indebted to her.

My other best friend was in charge of providing the much needed respite of having to think about mom. She was my complete fun quotient. We hung out, did regular teenage girlie things. And I remember those days with fondness and gratitude now.

Dementia Care Notes: Please share what sort of care you found particularly difficult to give as a caregiver.

Ekta: Giving care was never a problem, but yea, being around her all the time, I felt irritated. After the so-called active stage of wandering and stuff, caring for her became easy. We just had to feed her and change her and make her sleep. But she needed constant attention. We had a nurse, but I guess my family expected my sister and me to be around. She gave up her studies to care for her! And when she got married, the responsibility fell unto me. I resented that I couldn’t go out and stuff…but I did it anyway. I did go out at nights, requesting our day nurse to stay over, etc. She was really nice. And I think the last two years were the easiest.

Care was never the problem. It was the hurt, what I was going through…my loss of my mom which was the hardest. Even as I write this, I feel my tears well up. I miss my mother greatly. I don’t have any recollections of her as a healthy person anymore and it really hurts. I don’t want to remember her that way.

Dementia Care Notes: Please tell us what sort of difficult decisions had to be made, and share some examples.

Ekta: For my sister yes…she had to decide whether she could continue to go to college. My mom was in the wandering phase then and there used to be a lot of tension at home. My grandfather yelled at my sister and said it was not their duty to stop her from leaving the house just because we were at school. That was that, my sister announced at the dinner table that night, that she was dropping out, my father didn’t even react to that.

I was much younger…by the time I was the primary caregiver, she was mostly bedridden, definitely not wandering, etc. So no, I didn’t have to do anything of that kind.

Dementia Care Notes: Please share any fulfilling moments you experienced in those days despite all the problems you were facing.

Ekta: Ha ha, no…no fulfilling moments. It was my hardwork that saw me get good grades in the class XII exams, and my friend’s family that took care of me. When my mom could still speak, we’d ask her, “Who’s your favourite person in the world?” and she’d say my name….Yea, I remember those moments with love. My mom and I were close. I look like her…it’s, I guess, moving in a way.

Dementia Care Notes: Looking back, combining your professional knowledge now with your raw experience as a teenager, please share some thoughts with us. Please share any practical advice you have for families of loved ones diagnosed with early-onset dementia.

Ekta: You have to decide what you do with your life. Don’t put your life on hold. If you can afford help, hire it. Do not feel bad about it. Always share your burden with someone else. Pray lots. It gives strength.

If I am called on for help today, I mostly share my feelings and negative emotions from that time. Most people just feel relieved that they’re not alone in hating their sick loved one or the other members of their family. It’s natural! Alzheimer’s affects the entire family!

Have a support system of people who understand. If it is not your friends and family, seek people who have been caregivers, they’re likely to be more empathetic, supportive and give correct tips.

I am going to sound hard. There’s nothing anyone can do for you or your loved one. N.O.T.H.I.N.G. unless you let them in. So let them in…

Dementia Care Notes: Based on what you know, please tell us what sort of support systems are available for such families now. And the gaps.

Ekta: I am not qualified to answer this question. But my guess would be networks with empathetic doctors and social workers that can work with families are missing. But honestly, I am not sure I would have sought help even if I knew it existed (it didn’t then). There has to be a way to get the help to the people…when it’s at your doorstep, you’re so desperate, you will try anything. But if it’s away, and you have to attempt to make contact, it is more likely you won’t.

Dementia Care Notes: Please share any other comments or advice.

Ekta: My parting advice would be just let people in…share your thoughts more…and you will find you can touch the lives of others like you. There is no better way to heal, than to help someone else heal.

Thank you, Ekta!

P S. Message from Ekta: Do have a look at some related blog entries by Ekta, My Mum was Just like Iris Murdoch Opens in new window and My Caregiver’s Song Opens in new window.

[This is part of the caregiver interviews on this site. View the list of all caregiver interviews].

Note. This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of persons with dementia, their families, the care environment, or professionals. Every patient, every family is different and so is their experience.

Dementia Care Notes