Neena (name changed), a chartered accountant who left her professional work to look after her mother-in-law, describes the challenges and heartbreak of home care of a bedridden patient with multiple medical problems. An earlier interview of the care (when the mother-in-law was not bedridden) is available here: Caregiving challenges, trained ayahs, depression: a caregiver’s story.[note]
Dementia Care Notes: Please describe the circumstances that led to your mother-in-law becoming bedridden.
Neena: Ma is now 86 and suffers from multiple medical conditions, including heart problems, osteoporosis, Parkinson’s Disease, and dementia.
Over the last few years, she had become increasingly dependent on the hired help for walking, and also grown very scared of falls. When she was taken for walks or to the bathroom, she often got confused about how to lift her legs to walk, and her legs would get sort of locked, and she had to be repeatedly prompted about which leg to lift, about moving the leg forward and so on. When our regular help went on leave and we had a substitute helping Ma, this substitute did not know how to handle Ma at such times, how to coax her to walk and so on, and others had to help. Multiple instructions often confused her even more and she would completely stop movement and her body would become stiff. Getting her to move at this point was very difficult. At other times she would just start collapsing onto the ground! She had to be carried to her bed at times and this was a huge task as Ma had become heavier with absolutely minimal exercise!!
It was around that time, that one day we had just come back home from a lunch when the ayah was screaming for help. Ma was in the process of walking back to her bed from the bathroom. My husband, me and my kids rushed to her room to find her about to fall with the maid hanging on to her and unable to manage to keep her upright. She was foaming at the mouth, breathless and trying to vomit! Her entire body was shaking, perhaps a combined effort of the stress and Parkinson’s Disease. We managed to get her onto a chair which was now kept halfway from the bed and bathroom door. She was gasping for breath and collapsing. We realized that something was majorly wrong. My husband carried her to her bed and we made her comfortable. Later we realized after talking to the doctor that she probably had a stroke at that time!
Then one day, very unexpectedly, Ma tried to get up on her own and fell down at 4a.m. We still do not know what exactly happened, but whatever Ma did was very silent and deliberate. Her bed clothes were folded neatly to the side and she had perhaps tried to walk to the loo, her memory totally blank that she was now unable to do that unattended. She fell headlong with a heavy thud. The attendant, a very competent and sincere person who never slept off on her night shift, realized what happened only when she heard Ma fall.
Ma’s head was bleeding, and though we tried to stop bleeding, the wound on the head, which started as a small one, seemed to swell and form a large bump. We called for an ambulance and took Ma to the hospital.
It was only in the hospital that we learnt that Ma had also suffered from various fractures and dislocations, all on her left side. Her shoulder and wrist bones had fractures. Worse, the head of her femur had come out of the ball and socket joint and had got dislocated from the socket, and lodged itself elsewhere.
The doctors refused to operate on Ma to set things right, given her age (“she’s too old”, I was told) and medical conditions. Instead, they placed her on traction. She was in the hospital for some three or four days, a hectic and expensive stay, and we were expecting that the stay would be continuing till Ma improved. Ma was now completely bedridden and on traction, a 3 kg water weight tied to her ankle and kept in place with a crepe bandage.
Then, one day, the doctor told me I had to take Ma home and take care of her at home.
Dementia Care Notes: Please describe how you prepared your home for the care of your bedridden mother-in-law. What did you put in place before bringing her home from the hospital?
I was stunned and overwhelmed when I was told that I would have to take Ma back home in that helpless state with traction and tubes sticking out of her, and that I would have to take care for her at home. I had no idea what such care involved. She had a Ryles tube in her nose, a catheter and a traction.
Neena: I was stunned and overwhelmed when I was told that I would have to take Ma back home in that helpless state with traction and tubes sticking out of her, and that I would have to take care for her at home. I had no idea what such care involved. She had a Ryles tube in her nose, a catheter and a traction.
One morning, I go to the hospital, expecting another “normal” hospital stay day, and the doctor calls me to say that I have to move Ma out of the hospital immediately because he had to go out of town, and he did not want her to stay in the hospital in his absence. He felt more hospital stay would not help Ma anyway. Treatment was expensive, and nothing more could be done, and the doctor said that if he was not there and Ma continued in the hospital, the other doctors would place her on ventilator and all that, which would not help. I finally agreed that I needed that day to make arrangements and would take her the following day.
The doctor who insisted that we take Ma home was the physician who had been handling Ma’s care for over four years and knew her well. The orthopaedist at the hospital also concurred with his view that she should be taken home. In a way they indicated that she did not have much time so we agreed.
I had no option but to get ready for home care within a few hours. It was a huge challenge.
The next several hours were really very tense and busy. I asked the doctor what equipment I would need and used a contact number he gave to reach an equipment supplier. I needed to buy an air mattress (to prevent bed sores), and to hire a hospital bed and an oxygen converter (an equipment that converts water to oxygen, which was needed as Ma was having breathing problems and may need to be given oxygen ). Prior to this, I hadn’t even known what such equipment looked like, why they were needed, and how they were used. There was no time to find out about other suppliers or compare quotes or brands; I needed to get these things right away, and was extremely relieved that the supplier I had contacted was helpful. I later found out that he was the sole supplier in such a huge city.
I spent the next few hours talking to an assistant in the orthopaedic department, trying to find out what I needed to know. I tried to understand what exactly traction did, how it helped in fractures, and so on. With Ma on traction, it would be impossible to turn her for weeks altogether, and I was clueless on how we would maintain her hygiene and prevent bedsores. Or, given that Ma was on traction, how much should I crank up the bed to make her upright given that her femur had been dislocated. I kept asking the assistant questions, and was lucky that the assistant answered my questions patiently and in detail. A male nurse gave me some detailed and practical advice on how to handle the actual hygiene part, cleaning up soiled parts, changing sheets, clothes, etc., positioning pillows and so on.
A male nurse gave me some detailed and practical advice on how to handle the actual hygiene part, cleaning up soiled parts, changing sheets, clothes, etc., positioning pillows and so on.
These were very packed discussions, but at the end of them, I was slightly more comfortable about handling the care. I don’t know what I’d have done if the assistant had been less helpful. God bless him.
The other problem that needed immediate work was actually setting up home for Ma.
Ma’s room already had plenty of furniture — a double bed, dressing table, and so on. There was no place to fit a hospital bed. I rushed home and tried to get a carpenter to dismantle the existing double bed, but was unable to find a carpenter, so I requested a couple of drivers working in various apartments in the building to move the bed to a side, and also move around the rest of the furniture. Later, I discovered that they had broken the bed while moving it.
The equipment supplier, fortunately, kept his promise and was prompt in sending the bed and other equipment. By evening that day, Ma’s room was ready.
My husband had to go to work the next day as he had several important meetings and I had to get Ma discharged and get her home. As we finally got her onto a stretcher to take her to the ambulance she screamed in pain and I could not stop the tears that kept coming. What would I do? How could I handle her and not give her any pain? A passerby saw me and was probably wondering at my insanity in taking such a patient home. But I told myself that I would be happy to have her home in her last few days and did not really want her to die in the hospital. Honestly I did not know what I was thinking. I just knew I had to go ahead.
Ma was home, bedridden, installed on an air-mattress on a hospital bed, in a room hastily prepared for her care. We already had enough plastic sheets and some other required supplies, so that was a relief.
Ma had been placed on catheter for her urine, and a Ryle’s tube had been inserted through her nose directly into her stomach for her feeding, because she was supine and could not be fed through her mouth. Because of these, I could not handle the work alone or with the help of a normal attendant; I needed a nurse. The physician understood my dilemma and my plight and extended all help. He arranged for a nurse immediately.
It was only later that I realized that the physician had not expected my mother to live for more than one or two weeks…
It was only later that I realized that the physician had not expected my mother to live for more than one or two weeks, and even the orthopaedist had been sure that the chances of her surviving beyond four weeks were extremely low.
It is now over four months since that happened, and Ma is still very much with us.
Dementia Care Notes: Please describe some of the challenges you face in the actual care for your mother-in-law.
Neena: There were plenty of glitches in the beginning. We had a nurse for the day shift, and a full-time help also, because moving Ma on the bed, or cleaning her, could not be done by one person alone. But the first nurse we got used to sleep off, and it was after a couple of days that I realized that she was working the night shift in the hospital and then expecting to work the day at my home and earn some more money; naturally, she was sleeping instead of working. She would also stand on the bed to haul Ma up roughly, and I had to find a replacement.
Friends came in to help and I got an excellent nurse agency who sent me a very competent nurse. I was thankful for such mercies and thanked God and my friends.
…one day, the traction contraption moved, and the nurse said she would undo and redo the crepe bandage to correct it. To our shock, when we opened the crepe bandage, we saw a very large and ugly wound there.
A major problem we faced was because of an unexpected complication in the traction. Ma had a crepe bandage to keep the ankle frame in place. Nothing was said about this in the checkups the physician and orthopaedist did at home in the first few weeks. Then one day, the traction contraption moved, and the nurse said she would undo and redo the crepe bandage to correct it. To our shock, when we opened the crepe bandage, we saw a very large and ugly wound there. It was awful. It was nauseating. I almost threw up right there. Ma had always screamed when we would try to move her, but we hadn’t known that this was also because of this awful wound.
The doctors said that with such a wound, continuing with the traction was not possible. Though Ma’s hip was still not okay, the traction had to be removed. Yet, even after we removed the traction, and though we are regular in cleaning and bandaging the wound, it has not healed. The whole area is black, which is unhealthy because we have no idea what lies underneath, and the damage could be reaching the bones, and we have no way to stop it. One of our additional activities now is cleaning the wound and bandaging it using sterile bandages and so on, as advised by the doctors. But we still don’t know how serious the damage under it is, and at what rate it is growing. All we know is that Ma is in great pain whenever we move her, partly because of whatever is there in this area, and partly because of the unhealed hip (which will probably never heal now because we cannot place Ma on traction).
We also face challenges in managing Ma’s Ryle tube and her catheter. Ma would keep pulling out the Ryle tube with her right hand, which was free. She would first remove the bandage securing it, then slowly pull it out when no one was watching, for example when the attendant had gone out for her lunch or to have a bath or something. We had to tie her hands with a soft cloth to the railing for the short durations when we were not in the room. Once Ma removed the Ryles tube after the nurse left and so had to go without feeds till she came back. I don’t know how we passed those hours! Now, a new nurse has found a better way of fixing the tube in place and Ma does not try to remove it as often. But there are still complications, like sometimes we see some sediment in the tube, and once there was blood.
Once Ma removed the Ryles tube after the nurse left and so had to go without feeds till she came back.
Because Ma does not take any food or liquid through her mouth, her mouth remains dry, and we have to make sure we moisten it. Her lips sometimes become red and swollen, and it looks very alarming.
The catheter also causes problems at times. Some of the nurses sent by the agency are not very skilled at handling it. Keeping Ma hygienic in spite of the catheter requires special attention. Diaper rashes occur sometimes. We have to be very alert all the time because of all these complications.
Dementia Care Notes: Does your mother-in-law communicate her needs to you or the attendant/ nurse?
Neena: Ma has Parkinson’s, which means that her head keeps bobbing, and even her eyes keep darting around, and we cannot make out what object she is looking at. She cannot focus her eyes, and one eye seems to constantly move to the ceiling. This makes it difficult to know what she is thinking about, or what she wants.
Mostly, Ma is unable to express her needs. She screams when we try to turn her or clean her, probably because of the unhealed fracture and also the wound in the ankle, and we can do nothing about these two problems. We do need to move her to prevent bedsores and also take care of the hygiene, and we also need to make her sit up slightly sometimes, and she is obviously in great pain every time we try to do that. Sometimes, she manages to say that we should let her alone.
When I sit with Ma, she sometimes grips my hand hard and tries to speak. She may blurt out something, which I may or may not understand. If I coax her to talk, or ask her to explain, she is usually unable to answer.
Most of the time she does not communicate, but there have been some occasions when she has not just said something, but amazed us with her clarity.
Most of the time she does not communicate, but there have been some occasions when she has not just said something, but amazed us with her clarity. Then she lapses back into silence for days again.
Dementia Care Notes: Please share how your mother-in-law interacts with you and other family members.
Neena: Earlier, when Ma was still talking, my children used to always peep into her room before going to school to tell her they were going, and she’s wish them well and say, God bless you. They continued to do so after her becoming bedridden, but things had changed. Ma was obviously finding it very difficult to bless them, and she would struggle to talk, and that would take time. It was very disturbing for the children to see their grandmother struggle to say her usual God bless you, and Ma would also look very distressed that she could not speak. The children could not keep waiting too long, as they would get late for school. Over time, the children stopped going to say goodbye before leaving for school.
My daughter is very emotionally attached to her grandmother, and would often go in to talk to her, hug and kiss her. But I notice that the child looks very disturbed every time she emerges from Ma’s room, and has reduced her visits. I think seeing someone so helpless and in such pain is very distressing.
My son, who is younger, is more uncomfortable because of what he calls “too many wires” around his grandmother.
Ma is often sleeping, anyway, and even if someone goes to her room, the chances are that they will find Ma asleep. My husband often finds that he is unable to catch her awake, though he tries to talk to her when he can, especially just before he is going out of town. However, because of the situation, his visits to Ma have also reduced. Seeing her in pain, unable to communicate, is very difficult for all of us.
I stay at home and coordinate her care, so I end up spending the most time with her. Often, when I see Ma struggle, I get very disturbed.
But there have been some special occasions when she has managed to connect with us…
Dementia Care Notes: Can you share some of these special moments?
Ma was always very particular about celebrating birthdays and giving gifts on birthdays. Recently, for my son’s birthday, I bought a card for him on her behalf and wrote her name on it, and we waited for her to wake up so that she could give it to him. She finally seemed alert enough in the evening, and we called in my son and told Ma it was his birthday. I gave her the card to give it to him, saying it was his birthday. Ma actually took the card from me, said, Yes I know, and held it out to my son. My husband then asked her whether she’d wish my son, and Ma not just wished him, she actually sang the line Happy Birthday to you a few times! It was absolutely amazing.
Another time, my husband told her he was leaving town for a tour, and she surprised us all by asking him when he would be returning. He told her. She then put out her hand to shake his hand. He shook hands, and told Ma, Take care, and she replied, Take care.
These sort of moments are very rare. After them, Ma slips back to her uncommunicative mode for days, but for those few moments when such things happen, it seems to us that she is just the same, that there is nothing wrong.
And then she is back to her silence, only screaming in pain, or saying garbled things no one can understand, or looking at me and grabbing my hand, and being unable to speak.
Dementia Care Notes: What about other close relatives? How have they responded to this situation?
Neena: My husband has an elder brother, who was informed of the deteriorated situation the very day when Ma fell down. The brother (who resides in another city in India) asked us to show him Ma on Skype after we brought her home, but he has not managed a visit to see Ma in the last four months.
My husband’s elder brother gets in touch once in a while with my husband to get status updates on Ma but has not yet asked us how we are coping.
My husband’s elder brother gets in touch once in a while with my husband to get status updates on Ma but has not yet asked us how we are coping. When I contacted one of his children on a birthday to wish her, the child asked me how I was, and I said, you know your grandmother is not well, so things are difficult, the child said, oh ya, my parents were saying something happened, what happened? I don’t think the children have registered the magnitude of the problem Ma is facing. Perhaps it is because they are at a distance, and hearing about something is very different from experiencing it up close.
We heard from a relative that my brother-in-law felt that, “What’s the big deal about what they are doing for Ma? Everyone looks after parents. And why are they spending so much money, why can’t they just get someone from a village and train her? That’s how people do it.” This relative told him, “Do you even know what it takes to look after someone like your mother?” and suggested that he come and stay with us for a few days to see what caregiving was like, and how much skill it took. Unfortunately, my brother-in-law has not yet managed a trip to see the situation and judge for himself.
We feel let down by my brother-in-law’s reaction. I don’t know whether this reaction is because this whole situation is so alien and uncomfortable to him, or whether he underestimates the entire situation and its impact on us but whatever the reason, his contact is minimal. His wife also has not called to ask me how I am coping.
Ma has noticed the absence of her eldest son. She sometimes calls out his name when in pain, but when I ask her about it, she clams up. When I asked her, do you want to speak to him, she said a firm NO. I asked her, are you angry, and she again said, NO. On Ma’s birthday, when this son called, she did not utter a single word. I think she senses something and feels hurt.
Dementia Care Notes: Tell us some more on what a day’s care involves.
Neena: Ma usually doesn’t’ sleep at night, but dozes off in the morning, and many times during the day. We do not wake her up if she is sleeping.
We feed her 50ml of liquidized food, milk etc. every 2 hours through the Ryles tube. Other activities include the diaper change, sponging, etc. All such activity tires her and she sleeps off again. Movement is painful to her, but we have to do that to the extent needed for preventing bedsores, feeding her, or cleaning her.
Usually, when we try to visit her, she is sleeping, but I do manage to see her awake at times. She may hold my hand and try to talk, as I explained earlier. Because of her Parkinson’s, and her constant moving of her head and eyes, it becomes very difficult to communicate. She is usually not coherent enough for me to understand what she is saying.
Dementia Care Notes: How are you managing all this care work? How do you coordinate it, and get whatever you need for it?
Neena: I have two persons working with Ma; one is a nurse who works from 8am to 8pm, and one is a full-time attendant who lives in that room. We need two persons as Ma cannot be moved by one person given her fractures and also her Parkinson’s. Also, a nurse is needed because there are many nursing tasks like cleaning and bandaging, handling the Ryle tube and the catheter, and so on.
Sometimes, even though there are two persons, I need to help in the physical work. Sometimes, when one of the two hired carers are on leave, I have to participate more actively. Ma has to be held on one side by one person while the other does the cleaning, but because Ma’s bones are broken, her body is crooked and contorted, and she also slides on the bed, and we have to straighten her and pull her up, while trying not to hurt her too much.
I also have to make sure that these two hired carers (nurse and attendant) get their required meals and tea and biscuits in time.
We have other household help, too: a maid for the cleaning and cooking, and a driver. When this household maid is on leave, I have to do the housework not just for the house, but also for the nurse and attendant employed for Ma’s care. For example, the cooking. While our family may have handled the absence of the household maid by eating out, because of the nurse and attendant, I have to make sure complete meals are cooked for each mealtime, and there are also the intermittent tea and biscuit breaks. It gets very tiring and frustrating for me.
Ma’s care requires a lot of supplies. Our chemist who earlier did not keep such supplies, now maintains stock for all we need, like urobags (where the urine collects for draining out), catheters, diapers, Ryle tubes, syringes of various sizes, all sorts of sterile bandages, etc. Care for Ma is also very expensive, currently costing us almost Rs. 70,000/= every month. It is so high partly because Ma needs so much equipment and supplies, and trained attention including nursing attention. It is possible that if I had the time to look around and compare prices and suppliers, I could get some supplies slightly cheaper, but where is the time? Also, the agencies supplying attendants and nurses charge very high, but it is so difficult to get proper help and again, how can I go about looking for it, and how can I risk trying out new things with Ma being in this state?
The presence of two helpers all day long is also intrusive in our family life. They jabber and chat all day, and I sometimes have to tell them to be quiet, there is a patient in the room…
Dementia Care Notes: Tell us more about how this caregiving and responsibility affects you.
Neena: As I said earlier, the doctors had not really expected Ma to live beyond a few weeks. When, after a couple of months, the orthopaedist heard that Ma was still alive, he said I must be doing a really great job of caring. The physician said something similar. To me, these were not compliments. All I wonder is, did I do right, am I doing right by taking such good care as to prolong her life, when she is in such pain and so dependent. But on some days, when she talks, it seems that I am doing the right thing.
Often, I get really disturbed watching Ma. Earlier, Ma was very particular about remaining well-groomed; her sari was always properly draped, and she was always trim and smart. Seeing her defenseless and dependent now, being undressed by others, sometimes lying there like that while the nurse and attendant arrange the sheet or clean her and all that, makes me wonder what Ma must be feeling; how does she handle it?
…as I stay at home and coordinate her care and am directly responsible, I cannot stop going into Ma’s room because I am distressed. I have to help in all the activities often, and even when I come out of Ma’s room, that scene keeps running in my mind.
When Ma screams in pain, I feel very emotionally disturbed. Others in the family also find her state distressing, but they can reduce their interactions. However, as I stay at home and coordinate her care and am directly responsible, I cannot stop going into Ma’s room because I am distressed. I have to help in all the activities often, and even when I come out of Ma’s room, that scene keeps running in my mind.
Just a few days ago, I came out and sat on the living room sofa, switching my mobile to silent, unable to think or do anything. I just stayed sitting silently for a long time. When my husband came in after a while from work, he thought I’d slept off on the sofa, but I had just been numb.
At one point, I reached a state when I felt I could not handle it, and I briefly even thought of using a nursing home, but the few I visited were such dismal places, I felt I can’t put her there, and that I would be able to manage it better at home.
The helplessness of caring for someone in this state, and the way it has taken over my life has left me feeling inadequate in many ways. I recently developed the carpal tunnel syndrome, and found I could not even chop vegetables. The cook/maid was on leave, and I had to hire someone to come in to chop vegetables and make roti; she charged Rs.1000 for that, and I felt very helpless and incompetent. Just a few years ago, I was an excellent multi-tasker, managing my career, the home, and my kids, and staying cheerful, and now I could not even chop vegetables!
I know I cannot afford to remain like this, and so I have taken up walking regularly and I do Buddhist chants to calm myself. These help. In fact, my husband often reminds me to go for my walk, and I think it is because he knows that I will be frustrated and in a bad mood if I do not take my daily walk. Also, to my surprise, some of the ladies in adjoining apartments joined me in my walks , and were very supportive about what I was doing. Everything has helped me keep my sanity.
Recently, I also took on a short management consulting assignment in an NGO and it really helped me feel useful and competent again.
Dementia Care Notes: What about the future? Have you and your family discussed how you will handle further deterioration in your mother-in-law’s state?
Neena: We have talked about it, yes. None of us want Ma to be in pain. On one level, when we talk of it, we all say that we do not want to prolong her misery.
But I am really not sure what we will do when there is an illness or emergency.
At that time, would we not feel, as her children, that we must do whatever we can? My husband is her son, and won’t he want to rush her to a hospital and do whatever the doctors advised, even if it seemed to prolong her life in her state of agony?
…if something happens, I think, in spite of our distress at her current state and unwillingness to see her suffering continue, we will end up taking her to the hospital.
I do not want Ma in pain, and while I am taking care of her to the best of my ability, rationally, I feel I am willing to let her go. But if something happens, I think, in spite of our distress at her current state and unwillingness to see her suffering continue, we will end up taking her to the hospital.
It is very difficult to know what we will do when the situation arises.
Dementia Care Notes: Any final words?
Neena: Very often I have wondered what could Ma have done so wrong that destiny had so much pain written for her . Not only physical but emotional too. I have been married for nearly 25 years now and have always seen Ma bending backwards to please family and friends, to be helpful and stand by them in need. Then why this….. And as a mother myself I cannot fathom the pain her heart feels knowing that her elder son and her favorite always has not bothered to come and see her and comfort her. Nor the three granddaughters who she loves so dearly. The only consolation sometimes is that she still has family and grandchildren around her and we have given her something to be happy about. Her eyes still light up when she sees the kids.
Thank you very much for this detailed interview, Neena!
[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.