Mala (name changed) has a mother suffering from Alzheimer’s Disease, something the family found out only after years of watching her slowly-increasing forgetfulness. Care is being given by Mala’s father, who refuses help. In this interview, Mala goes down memory lane to describe the early symptoms, the diagnosis and treatment, the family’s coordination for the care, and Mala’s own hope and guilt.[note]
Dementia Care Notes: Please share something about your family.
Mala: We are three siblings; I have two elder brothers and I am the youngest. Our family is an upper middle class family, and we are all educated and pursuing good careers. Daddy retired over a decade ago, and Mummy was a home maker. All of us currently live in the same city; my eldest brother and his family lives at some distance, my other brother and his family live next door to my parents, and I live with my in-laws just a few minutes of walking distance.
Daddy (now almost 80 years old) is my mother’s caregiver, and while we all try to support him in various ways, he insists he does not need more help right now, and will ask for help if he needs it.
Dementia Care Notes: Tell us about your mother before the symptoms started.
Mala: Mummy was what we would probably call an ideal homemaker. Though a graduate who had worked for some years, she was happy to leave her job and switch to full-time home making. My father, a quiet man, worked at his job, earning money. Mummy was the one who was always there for us, her children, when we were younger. She loved to cook for us. She was very social, and was prominent within our community for her participation in various group activities. She loved oil painting, and also helped with managing the society club administration, and was always volunteering to help in this thing or that.
Dementia Care Notes: Please describe when and how she started changing.
Mala: I think the changes happened very slowly, or maybe we just didn’t pay enough importance to them. After Daddy retired, Mummy was still a very socially active person, meeting relatives, attending functions, arranging neighborhood bhajans, and so on. My brothers had moved out for their studies and jobs.
I think I first noticed Mummy’s forgetfulness around the time my marriage was fixed. We had recently moved to an apartment my parents had just bought, and Mummy would often keep things at strange places and the kitchen arrangement was all mixed up, not the way an enthusiastic cook would handle it. I told myself it was just because it was a new apartment, but it still felt a bit odd.
In the six months between my engagement and marriage, I saw Mummy behave in many strange ways. She seemed very disinterested in all the hustle and bustle of purchases for the wedding. She would tag along for the shopping as if not really interested, and even when we traveled to our home town to place the order for the jewelry, she did not seem excited at this holiday and meeting our relatives in our home town. She had been so social earlier that this detachment felt odd. My Mausi also commented on this indifference, but we all felt that Mummy may be feeling sad because the only child left at home (my brothers had already moved out) would also be leaving home soon. I thought it was some sort of “empty nest” syndrome. I had to keep coaxing Mummy to buy a new saree for herself so that she looked pretty during the wedding festivities.
During the ceremony, she walked off in a disoriented way when the kanyadaan was taking place, which felt very strange. It was like she was just doing things in a disoriented way, not happy about it.
During the ceremony, she walked off in a disoriented way when the kanyadaan was taking place, which felt very strange. It was like she was just doing things in a disoriented way, not happy about it.
I was especially surprised because Mummy had been so happy and active for my brother’s marriage, and even for a cousin’s marriage a few years ago, but I assumed that she was just very sad and would get over it, and besides, I was excited at entering a new phase of my own new life.
After my marriage, when I would visit my parents, I saw that Mummy had lost all interest in cooking. She had stopped cooking special dishes. Relatives told me she was quiet and inattentive. I would visit as often as I could, but I was also busy with my new life and my in-laws and career and all that. I didn’t think anything was seriously wrong with her, just that she was taking a long time adjusting to the home being empty.
I began registering that something was wrong around the time I went to my parents’ home for the delivery of my first child. It became obvious then that Mummy had really changed. For one, she seemed very scared of holding the child, and would just not pick him up. She only helped me by continuing to do the cooking, but she kept making mistakes even in that. Rice would not be soaked long enough and be served undercooked; daal would be put on the table without the seasoning. If Daddy pointed out a mistake, she would calmly say she forgot and correct the problem, but she always looked preoccupied and distant. Daddy would sometimes get irritated, thinking she was being careless or doing things wrong on purpose.
I had no idea of what was happening. I had never lived with any grandparents, and did not know whether this was the normal way that people aged..
I had no idea of what was happening. I had never lived with any grandparents, and did not know whether this was the normal way that people aged, but I thought it might be. As I was trying to handle my child, I would expect Mummy to help, for example, to set out the bath water and oil and soap. I would be surprised and irritated when she could not follow even simple instructions. Looking back, I can see that what I considered simple instructions were not actually all that simple. I would sometimes snap at her, but she would not get upset even if I scolded her.
Sometimes, as I found the child-rearing tiring, I would wonder how Mummy had managed bringing up three children, and would be awed at what mothers do for their children, and also feel very abashed about not having valued her when I was younger.
The way I saw it was, she was getting older, and ageing seemed to create more problems than what I had expected.
The next few years were very busy for me. I don’t remember too much of how she changed over those years. I would visit, of course, but I was engrossed with my family, and Mummy seemed silent. All Daddy ever said was that she was getting more and more forgetful, but otherwise things were okay.
Dementia Care Notes: How did you realize that your mother had a problem that needed investigation?
Mala: It was actually by chance. I happened to attend a workshop on dementia as part of some work, and as the doctor conducting the workshop kept explaining each of the warning signs, I felt my heart sink as I found myself thinking: Mummy has that symptom. Sitting there, finding that Mummy was showing so many of the symptoms being described, I started suspecting that Mummy could be a dementia patient.
My emotional reaction was one of guilt for not having realized this earlier. Then, as the doctors explained about “reversible” dementia, I felt hope. Maybe Mummy’s problems were a reversible form, and could be solved.
The challenge was how to convince Daddy and my brothers about the need for consulting doctors. You see, none of us had seen her problems as a “mental problem”, just as growing forgetfulness.
The challenge was how to convince Daddy and my brothers about the need for consulting doctors. You see, none of us had seen her problems as a “mental problem”, just as growing forgetfulness. Her behavior did not have that agitation or rage that we associate with “mental problems.” And the idea of consulting a psychiatrist was very alien to us all. Words like “psychological problems”, “counseling”, “mental issues”, were all frightening.
I sat down with Daddy and my brothers to discuss more on what Mummy’s symptoms were. As we talked, I heard of more incidents that convinced me that Mummy may be having dementia, though I continued to hope that it would be the reversible type.
For example, Daddy told me how Mummy, on some days, said she had no children, and on some days, claimed she had only one child, while sometimes she would correctly state that she had three children. And my sister-in-law described numerous occasions when Mummy had seemed very disoriented, wandering about the two apartments (my parents’ apartment and my brother’s apartment), not at all sure what she was doing or where she was.
We all finally decided to consult a doctor.
Dementia Care Notes: Please describe how you got a diagnosis and started treatment.
Mala: Even after we decided to consult a doctor, we had no idea where we should go. We finally opted for a well-known nursing home in our locality, visiting as normal out-patients, and were directed to a junior doctor. We had no idea what to expect.
Mummy was quite bewildered about why we were visiting a doctor. I remember her asking me, “Why have you brought me here?” and when I said it was because there may be some medicine for her forgetfulness, she smiled and said there was nothing wrong with her. All through the visit, as the doctor talked to her, she was over-cheerful.
He (the doctor) gave us no explanation, and spent no time explaining the side-effects or anything else about the medication.
The doctor did not order any blood tests or scan, and directly put her on some medications that I now recognize as medications used in Alzheimer’s Disease. He gave us no explanation, and spent no time explaining the side-effects or anything else about the medication.
I feel very let down when I think of how the doctor dealt with us. He behaved as if we were the sort of people who will not be satisfied unless given a medicine, and as if we could not understand anything. He did not even try to explain or investigate more.
Dementia Care Notes: How did your mother respond to the medicines?
Mala: Mummy’s state deteriorated after the medicines were started.
Earlier, Mummy was forgetful and disoriented and uninterested. But after starting the medicines, She became even more forgetful. Her ability to recognize people went down, too, and she started calling my father “old man” and refused to share her bedroom with him.
The worst part was that her nature changed. She became irritable and agitated. Though not outright violent, she was clearly feeling very different. She often behaved like a college girl, and would be very distressed when she saw her gray hair, which she thought was really premature graying.
When we reported the problem to the doctor, he reduced the dose. After a while, on our insistence, he agreed to do more investigation. That was when they did various tests, including an MRI which, they claimed, confirmed the diagnosis of Alzheimer’s. I had been hoping even at that point that Mummy’s condition would be a reversible one.
The investigation done at this time included a neuro-assessment, and I was present for it.
When the doctor asked Mummy if she knew who I was, she said, “Of course. She is my sister.” I was shaken up. Mummy knew my name; I had no suspicion that she thought I was her sister and not daughter. I had not thought of testing her and asking her who she thought I was. Later, my brother told me that Mummy often did not know who was who, and called most people by the name of my sister-in-law.
Dementia Care Notes: How did your mother’s condition change with the treatment? How was care given?
Mala: The doctors told us that medication helps and should not be discontinued, though they adjusted the dose. Mummy’s hallucinations continued. She would seem to see things that weren’t there. Her behavior was increasingly strange. She would talk to herself in the mirror, and also try to walk out of the apartment, insisting she wanted to return to her father’s place. All this was even more problematic to deal with, especially because Daddy was having health problems of his own by now, and he was less mobile.
Daddy became upset and irritated more often then. As he had problems walking, he would ask Mummy to fetch a plate and she would fetch something totally different, and he would think she was troubling him deliberately. Though I had talked extensively about dementia to him, he was unable to accept that her strange behavior was because of that.
We tried to get a full-time maid for Mummy, but Daddy refused. He did not want someone hanging around the apartment all day. He did agree to employ someone for the cooking, and so the maid who was employed for cleaning the vessels was upgraded to “cook” status, and he trained her to his satisfaction. Food at home was, by now, very simple fare.
Mummy’s altered personality was very stressful for Daddy. I remember he got agitated a few times and said that we should stop the medication, or place her in an old age home and that he could not handle her any more.
It was a difficult time for all of us. My eldest brother, who lived at some distance, was supporting my parents financially. My second brother, my parents’ next door neighbor, was always available for emergencies. I was unable to help, as I had also got my own duties to my in-laws and a young child, but I tried to be there emotionally for “quality input”. My father, although tired and frustrated, still refused to take help. There were many episodes that were very challenging and worrying for us all.
Dementia Care Notes: Please give some examples of problems you faced.
Mala: Once, Mummy wandered off in the morning. We just could not find her. We alerted the police and then started looking. We were very tense, but we tried to think clearly. Mummy was fond of visiting the temple, and too scared to cross the main road. We therefore started searching in the various small side-roads. After several hours, we finally found her sitting in a park, watching children play.
When Mummy saw me, she smiled. “Oh, you have come, let us go home,” she said, as if this was all very normal.
After that day, Daddy was very careful to keep the apartment locked from inside so that she did not wander.
There were lots of small problems, mainly things we did not realize were happening.
For example, my mother used to tie her hair in a bun. To all appearances, she looked neat. It was only by chance that I realized one day that she no longer combed her hair, and it was all very horribly tangled. I took her to a beauty parlor to get her hair cut short, as I knew this problem would continue. Mummy was very upset about that. By chance, a close relative was visiting those days, and Mummy assumed that this person had come home just to cut her hair, and ranted at that person for a long time, accusing her of chopping off the hair.
Dementia Care Notes: You had mentioned that your father was not well.
Mala: Yes, Daddy was having severe health problems that affected his mobility. He had been refusing surgical intervention for years, but he finally realized that he could not look after Mummy if he was unwell himself. He then agreed to the surgery.
Once Daddy’s problems were solved, he became mobile and also less irritable, and was determined to manage Mummy’s care himself. He still does most of the work for her, and refuses to either employ a full-time help or let us (his children) help.
Dementia Care Notes: Does your mother continue to get very agitated? What is her current state?
At Daddy’s insistence, we stopped Mummy’s medication. The difference was visible in just a few days. Mummy’s hallucinations stopped.
Mala: At Daddy’s insistence, we stopped Mummy’s medication. The difference was visible in just a few days. Mummy’s hallucinations stopped. When on medication, she used to have a hawk-eyed look most of the time; that changed. She was no longer disturbed. She was still very forgetful, but the agitation type of behavior stopped.
I feel very bad that she suffered so much (and so did Daddy) because the medications did not suit her.
Sometimes I want to kick myself for not finding out more about the side effects of medication, and sometimes I feel upset that the doctors did not warn us about them. Even when we told them of the hallucinations, they did not suggest we try stopping the medications.
I know that some patients benefit from medications; I have heard from friends whose parents seemed much better with medication. But if there are some patients who suffer side-effects, shouldn’t the doctors tell us about that? I had assumed that Mummy’s deterioration was because of her Alzheimer’s, and it was only Daddy’s repeated insistence that we try stopping the medication that made us agree to experiment.
Daddy is taking care of Mummy more cheerfully now. He cajoles her, he jokes with her. He has adjusted to her dementia and accepts that deterioration will happen.
Mummy continues to be very forgetful. Her other problems are also increasing, for example, she is sometimes incontinent (especially in the morning), and sometimes she forgets where the bathroom her, but she no longer gets agitated. She does not even try to walk out of the apartment any more, just paces in the apartment, though Daddy keeps the apartment door locked, just in case. Mummy is usually silent, though she sometimes talks to her pillow or mirror.
Some months ago, Mummy fell off a chair once and injured her arm that needed some stitches and also suffered from some hairline fractures. She kept trying to pluck off the bandage, and we had to be very alert for some days. My brother took leave to support Daddy for the operation and the subsequent care.
She also has some sleeplessness, and is responding well to a mild medication for that.
Dementia Care Notes: How does your father handle his own needs and life along with all the care he needs to give for your mother?
Mala: Daddy was never a very social person and is used to a sedentary life. He uses a dementia day care for some fixed days a week, and on these days, as Mummy is at the day care, he gets some hours of respite and also fits in any socializing or bank work or other work he wants to do. He is not willing to put Mummy in day care for all days, because he says he gets bored alone.
Daddy seems to have found his rhythm in looking after Mummy, who is more peaceful now. He says he will handle Mummy’s care as long as he can, and will ask us for help when he needs. He tells us he is confident we will help him, but he does not want this to affect our lives too much before need be. He keeps pointing out that we have our own families and careers and other responsibilities, too.
Dementia Care Notes: What about your relatives? Have they accepted your mother’s dementia?
When close relatives visit, Mummy is very happy. She answers all questions by talking constantly and incoherently, and seems to enjoy herself.
Mala: Yes. We explained it to them, and they have accepted. I know of cases where families face problems because relatives do not believe the patient has dementia, and in that respect we have been very lucky. When close relatives visit, Mummy is very happy. She answers all questions by talking constantly and incoherently, and seems to enjoy herself. Her answers may make no sense, but no one comments on that. They keep a friendly eye on her, and are affectionate.
The funny part is, when we explain her dementia to relatives, they often start telling us old incidents, some almost ten years old, where Mummy behaved in strange ways, like repeatedly getting lost inside their house when visiting. These relatives had also noticed her extreme forgetfulness, but had assumed it was absentmindedness, even though the incidents seemed rather odd. It is only now, when we all sit together and compare notes and get the whole picture that we realize for how long Mummy has been facing problems.
Dementia Care Notes: Your mother was very fond of socializing. Is that possible now, or has it stopped completely?
Mala: Close relatives do visit, and Mummy enjoys their visits. Neighbors do not visit, as they know she is suffering from some problem, and do not want to disturb.
Sometimes, we manage to take Mummy out for functions. We are hesitant because she is mildly incontinent and refuses to wear diapers, but short trips are still possible.
Actually, even now, a casual visitor cannot always know that she has dementia.
Actually, even now, a casual visitor cannot always know that she has dementia. When people are around her, she sits up straight, looks very dignified and gentle, and nods and smiles as if she is understanding everything, and in a short visit, her problem is not obvious to people who do not know her.
Dementia Care Notes: How well does she connect with her grandchildren? Are they able to accept her dementia and connect with her?
Mala: Mummy was very fond of her grandchildren. When they were young, say, less than six years old, they, too were very fond of her. Then they started sensing something was wrong with her, and would sometimes get irritated with her because of her forgetfulness. We explained dementia to them, and they became more patient. However, the bonding is not so good now, and Mummy does not seem interested in them. They do not interact much now.
Dementia Care Notes: As a family, how are you planning to cope with her further deterioration?
Mala: So far, we have been managing to share the work and everything is going on smoothly. All of us are concerned and participate in different ways. My eldest brother provides the financial support; my middle brother is always available for emergencies, and sometimes has to take so much leave I think it must be impacting his professional growth and career prospects. I try to stay emotionally connected and also keep reading up on dementia and making suggestions and so on. My father, of course, bears the brunt of it.
We give suggestions to Daddy, like once I tried to fix an ayah for taking care of Mummy and after great reluctance Daddy agreed. But unfortunately the ayah did not turn up the next day and daddy got a chance to say “I told you so!!” He then said that we have given it a try and now I would like to have things the way I want it. Beyond a point he is right and we have to respect his wishes.
Another thing: Daddy is very independent in his ways. He has not taken any of us in confidence about how he has arranged his finances.
When it became clear that Mummy can no longer sign, I suggested that he relooks at his investments so that her inability to sign does not become a problem, and I know that after that he changed some of his investments to manage them more easily, but he did not tell any of us the details. I do not want to be misunderstood, and am very indirect in the way I bring up sensitive topics like finances.
Another example is, Daddy does not believe in making a will. I tried to bring the topic up in a roundabout way, quoting some newspaper articles on problems elders face, but that is all I could do. I do not want any confusion after his death, but in our family, such topics are just not talked about.
I am very careful in what I say and how I say it, because in our family, we have never spoken of unpleasant things like death, wills etc., about what may go wrong in the future. T
I am very careful in what I say and how I say it, because in our family, we have never spoken of unpleasant things like death, wills etc., about what may go wrong in the future. There is an assumption that we will all manage to do what is needed, but also that negative topics should not be brought up.
One thing I felt strongly about was donating Mummy’s brain upon her death for furthering research on Alzheimer’s. What gave me the confidence to convince my father and brothers was the fact that Mummy has often spoken about eye donation and had explicitly wished that after her death if any of the body parts are useful to anyone, it should be donated. This wish I hope to fulfill when the time comes by donating her eyes for giving sight to a blind person and by donating her brain to a brain bank for the cause of finding a cure for Alzheimer’s. Who knows, someday this may help researchers to find a cure for Alzheimer’s and I may be one of the recipients!!
We do not talk about how we will handle the next stage of Mummy’s dementia. Sometimes I wonder, if something happens to Daddy, all this will collapse. There is nothing in writing, no will, no other instructions. I guess we will manage, though; we have done okay so far. The motto of my brother, for example, is “if I have to do it, I will do it.” We do not get emotional about these things.
Dementia Care Notes: Do you have any overall comments?
Mala: I feel very confused and guilty at times.
On one hand, when I put together all those early warning signs that were there, I feel we should have known about Mummy’s dementia much earlier, and got it investigated.
I have heard some specialists say that medicines should be the last resort for geriatrics, and that also makes me wonder, because other specialists are quick to prescribe medicines.
On the other hand, given the way she reacted to the medication, I am very doubtful about the advantage of early interventions that people keep talking about. In our case, medicines did not help at all; they made things worse, and we did not get proper advice from doctors. I have heard some specialists say that medicines should be the last resort for geriatrics, and that also makes me wonder, because other specialists are quick to prescribe medicines.
I feel angry at times that we did not receive good guidance from the doctors whom we first approached and sometimes I redirect the anger at myself for not doing enough of reading up when so much of information is available on the Internet. If an educated person like me didn’t do the right thing at the right time, how helpless will be those who are uneducated, completely ignorant of all aspects of the disease! How many elders may be getting accused for “deliberately trying to act difficult” when actually they may be in the initial stages of dementia!
I know that each dementia patient is different, but how is one to know what is best for our patient, our family?
Whatever you do, you are groping in the dark. You cannot know while acting if you are right, which step may help, and which may not. This makes me feel very uncertain about things, but I also feel guilty at times for having missed out what seems obvious in hindsight.
I think I spent a lot of time truly accepting Mummy’s dementia. There used to be ups and downs, good days and bad. On the days she was better, I would be convinced that her problem was minor, was reversible. There was hope, or maybe that was inability to accept. Is hope wrong? Did it delay our doing what was needed? Or accepting? For Daddy, his inability to accept continued even longer, and he was not able to connect her strange behavior to her medical problem and would get irritated or dejected. He was bearing the brunt of her behavior, anyway.
Daddy’s ability to accept her condition and to change his way of caring improved a lot after his health problem was solved.
One more observation is that Daddy’s ability to accept her condition and to change his way of caring improved a lot after his health problem was solved. Maybe if he had not been suffering himself, he would have reconciled to her problem and coped with it without suffering as much as he did.
Right now, though I am trying my best to support my parents, I am not able to do much for them. Daddy, who is close to 80 years old, does all the work and refuses to take help. I feel guilty and helpless and frustrated. But I cannot intrude; one has to accept the boundaries he has set. He keeps saying, “She is my wife, and I am the one who will look after her as long as I can,-if I was in her place she may have done much more for me” -and we have no choice but to respect his choice and decision and support from the sidelines as best as we can.
Thank you, Mala!
[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.