Tag: day care

My husband is a living doll: A 78-year-old wife taking care of her 86-year-old husband

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Saraswathi Subramoney, 78 years old, is the caregiver for her 86-year-old husband who suffers from Parkinsonian dementia. The couple lives in central Bangalore in a well-appointed apartment full of curios gathered over the decades. Their children (they live in other cities) visit often to help and comfort, but Saraswathi is primarily responsible for her husband’s care and has to cope with it alone most of the time. In this interview, she shares the progression of her husband’s condition, her ways of handling care, and her feeling of exhaustion and overwhelm. [note]

Dementia Care Notes: Can you describe the events that led to your husband’s diagnosis?

Saraswathi: The first indication that something was wrong with my husband came around 3.5 years ago, when he fell down a couple of times. We visited Mumbai soon after, and consulted a senior doctor in a leading hospital there. The doctor assessed my husband, conducted various tests and scans, and finally declared that what happened to my husband was only “old age” (my husband was 83 years old). The doctor showed us the brain scans, pointed out some areas, and said the gaps were caused by “ageing”.

We returned to Bangalore. Over the next few months, my husband’s condition worsened to a point I found very difficult to handle. Examples of the behavior he showed were:

  • Losing balance while walking or climbing stairs.
  • Fits of anger and shouting.
  • Insisting on going for “work” (though he had retired long ago).
  • Insisting on going out for errands that were not needed (such as booking tickets at the railway station).
  • Insisting on getting updated bank and FD statements every few days, and wanting to go even on Sundays after I told him that the bank was  closed.
  • Going out alone without telling me, such as slipping out of the apartment when I was in the kitchen.

Our family doctor said my husband should not be allowed to drive. I therefore started hiding the car keys. My husband began insisting that the car keys be placed at the same place every day, and would refuse to eat if he couldn’t see the keys. He would shout at me.

I consulted a psychiatrist, who gave no formal diagnosis but started treatment. Eight months later, after it was clear that the medication hadn’t improved my husband’s condition, the psychiatrist recommended that I consult a neurologist. Around this time, my daughter noticed that my husband was leaning to the left while walking and holding his left hand awkwardly.

My husband was able to answer most of the questions asked by the neurologist (those usual what is 100 minus 7 type of questions), and scored seven or eight out of ten. The doctor diagnosed his condition as Parkinson’s, and prescribed medication to be given in addition to the medication already prescribed by the psychiatrist.

We had to go to Mumbai again for some work around then, and so we revisited the doctor we had first consulted. This senior doctor told us, “Stop all medication immediately. When a patient walks into my room I know whether he has Parkinson’s or not. Your husband does not have Parkinson’s”. He told us to continue only one medication, which was for calming my husband.

This became very confusing for us. We therefore consulted doctors in a large, reputed hospital in Bangalore, and they diagnosed my husband’s condition as Parkinsonian dementia. We continued their treatment for eight months. This hospital used a panel of doctors for attending patients, and every visit we would end up meeting a different doctor and have to explain the case again–this new doctor would either prescribe something new, or continue the old medication. I was unhappy with this arrangement as I felt it did not give us continuity. A senior doctor I shared this with advised me to switch to treatment under the local specialist who was closer to my house.

The symptoms my husband was showing at the time he was diagnosed formally were:

  • Abusing.
  • Shouting.
  • Poor balance and frequent falling.
  • Wandering without telling.
  • Often, he would fall and be brought back by neighbours.

We are, since then, continuing treatment under care of this specialist.

Dementia Care Notes: What was your reaction to the diagnosis?

Saraswathi: I found it unsettling that doctors came up with different answers, especially the Mumbai doctor’s insistence that this was just ageing and his emphatic way of telling us this was not Parkinson’s.

When the diagnosis was finally clear enough, I was deeply affected.

Till then I had heard of many diseases like hypertension, diabetes, stroke, but I had never heard of dementia. I tried to be strong enough to do what was needed, but when I was told that there was no cure, I felt mentally and physically down.

The doctors gave me information on care for my husband, but did not fully explain what to expect. They did not counsel me on my own stress management or how I could stay healthy as a caregiver. I myself am old and have health problems that have become worse with the amount of work and stress I am facing. I do not know what to do about these.

Dementia Care Notes: What is your husband’s current state?

Saraswathi: My husband has become very weak and lost weight. His ability to understand and do things has deteriorated a lot. He is usually on a wheelchair and needs help to be moved from and to the bed. He needs to be helped for everything. He does not seem to know me or any of the things in the apartment. He does not really know who I am.

It is like he is not there for me. He is like a living doll.

Dementia Care Notes: What is your current arrangement for caring for your husband?

Saraswathi: Though my children do not live in Bangalore, they have set up a “pukka” system to help me care for my husband.

Currently, I use the services of a day attendant, a night attendant, and a dementia day care centre.

The day attendant arrives at eight a.m. in the morning. The night attendant (who has been there since the previous night) leaves after the arrival of this day attendant. The day attendant cleans and bathes my husband, and gives him his breakfast and medication. Around 9:30 am, the vehicle from the dementia day care comes to pick up my husband, and my husband then spends his day at the dementia day care (six days of the week). He is brought back at 4:30 pm by the day care vehicle, and the day attendant attends to him till six, and then leaves.

The night attendant arrives at eight pm and takes over care.

For these two hours, from 6pm to 8pm, I have to handle the caregiving myself. This is extremely difficult because I cannot physically do anything for my husband. For example, I cannot push the wheelchair or lift my husband from the chair to the bed or vice versa. I am very scared of risking anything, because if I get injured, who will take care of me and my husband?

Sometimes I manage to make the day attendant stay for some extra time by paying him “overtime”, but he does not always agree because he has other tasks to do.

I have considered using a full-time attendant, but am hesitant because that would mean cooking for the attendant and that can also be a problem.

Dementia Care Notes: How satisfactory are the services you use?

Saraswathi: The availability of the dementia day care centre is a very big relief, because for those hours the centre’s staff takes over both the work and the responsibility.

At home, I definitely cannot do anything without the attendants. The work involved is very tiring physically, and on the days that the agency sends a female attendant for the night shift, we face a problem because she finds it difficult to lift and move my husband around.

The two hours every evening when there is no attendant are also extremely stressful for me, given my age and frailty.

There is one more problem; our apartment is full of a lot of things. My husband used to be very fond of buying curios and he decorated our post-retirement apartment with them–of course, they mean nothing to him now. Sometimes I find some items missing. I do not know which attendant took them, and have no way to prevent such thefts. That my things are getting stolen and I can do nothing about it frightens me and makes me sad. I find it stressful. I have moved my jewelry and other precious belongings to bank lockers, and use cheques for most payments, but I have to keep cash at home for emergencies, and am scared of theft.

Dementia Care Notes: As you are living alone with your husband, you must also be handling other work and responsibilities?

Saraswathi: Yes, I handle all the work required to manage our house and our finances.

Earlier, when my husband was alert and active, he handled the bank and investment work, and paying bills and all such errands and responsibilities. Now I have learned about all these things. I make the bill payments, get bank passbooks updated, and reconcile statements and do all such work.

I also manage the house, which means doing the shopping and cooking and other house work. I cannot sit back and relax, because I am responsible for everything.

Dementia Care Notes: This is a lot of work to do in addition to caring for your husband. At 78 years, frail, and suffering from medical conditions (diabetes, hypertension), this can be very stressful. You also seem to have lost weight over the last few months. Can you tell us about your emotional state?

Saraswathi: It is true that I have lost weight–over the last six or eight months, I have lost six kilos. My BP and sugar levels are also worse, and I think it is because of all the work and the tension.

While I am managing to do whatever is needed, I feel very tired and am not sure how long I can keep doing everything.  My children comfort me and tell me I must take care of myself. They are trying to see how they can take turns to come here so that I can have more days to relax.

Another reason I get stressed is that I am scared that something may happen to me. Suppose I fall down in the flat or fall ill? My husband will not even know anything. My children live in other cities; I have to depend on neighbours to call them. But who will know if something happens to me?  How will they know? Yet I am also scared of having a full-time attendant living with me. That will mean cooking for the attendant, and I do not want that work to get added to what I am already doing.

My husband’s state will get worse. I am not able to think clearly about how I will manage that. I do not know what I will do. I hope my children manage to come up with a solution.  Right now, I am just somehow continuing to manage my responsibilities.

Thank you for opening your heart to us, Saraswathi!

[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.

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