Update on my bedridden mother

It’s been a while since I wrote about my mother, and that is because nothing much has changed. People I meet often ask me for updates, “How’s your mother?” and my answer has been the same for the last two years, “She’s stable, okay, but slowly deteriorating.”

Here is the status update. She is still alive. She is still bedridden. (No miraculous reversal has taken place). She talks maybe, a couple of words every week or so, nods or shakes her head sometimes, and the rest of our understanding of her needs and wants is essentially guesswork or our watching for the miniscule shrinking or relaxing of her muscles.

Blood test reports show her health as good. Her hemoglobin count would be the envy of many. Her skin is fragile but smooth and soft for most part (substantially smoother and softer than mine, but I am not asking to swap places). She sleeps most of the time. Once a week or so, she nods when I ask her whether I should talk or tell her a story, but I am barely past the introductory paragraph of the story and she’s nodded off. No, I am not that bad a story teller. I am not boring her to sleep. I think all voices to her are lullabies 🙂

Swallowing is still a problem for her. Mealtimes are typically 45 minutes to an hour, every gulp a challenge for her, and also for the person feeding, because we have to know whether she swallowed the first mouthfull of food before we pour in the next mouthful (otherwise her mouth gets overfull and she coughs horribly because the food goes the wrong way).
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Questions people ask, and the invisibility of problems and solutions related to the twilight years of helplessness

So okay, this bedridden care challenge stuff continues to be top of the mind for me. In addition to recalling a lot of related conversations I’ve had with others around it, I also got to chat with a friend currently caring for a bedridden parent. We exchanged woes and anecdotes. At one point, when talking of how little people around us understood about what was involved, we both burst out laughing. Hysterical laughter, unfortunately.

I must hasten to add that, before I was plunged into the bedridden caregiver situation myself (for a father with a hip fracture, and well over a decade ago), I’d behaved as if bedridden persons and persons who care for them were a category of persons I had to look through. Reason? I had no clue about what that sort of life involved (being bedridden, or caring for someone who is). I had more discomfort than curiosity. And I totally lacked the skill of conversing with family members involved in such care. Should one enquire after the patient, was that polite, or was it politer to pretend no such entity existed? Should I behave as if the caregiver was living a normal life, and discuss TV serials, or should I be oozing with sympathy, or asking for descriptions? What was acceptable, what was normal in such interactions? I found it far simpler, instead, to avoid the caregiver.

Again, it was not as if I thought I’d never become a caregiver for an elderly bedridden person. Nor did I think I would become a caregiver. Basically, I just didn’t think. Didn’t want to, didn’t need to. There are many ways to walk down corridors to avoid people.

Which, possibly, is why when I first got plunged into such care I found myself clueless. I suspect I’m not the only one thus caught unawares.

Now that I’m on the other side, I am not particularly surprised when people look embarrassed when they learn that I’m a caregiver for a bedridden person. Nor am I surprised when they seem clueless…

There is, of course, a commonality in the questions people ask. I’m sharing some below. 
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All in a day: what care for a bedridden mother involves

My mother’s attendant (an excellent, competent and empathetic worker) is off to her village for a few weeks, and hubby and I are handling my mother’s care 24×7. My misadventures with the use of other trained attendants (and substitutes) is already well-documented (read this blog entry: Trained attendants for dementia home care: sharing experiences), and as ever, this time too, we’ve decided to handle the care ourselves rather than run around to agencies, pleading for another misadjusted, negligent, untrained, unhygienic attendant for the stop-gap arrangement.

In a post I made just a few weeks ago, I mentioned that late-stage care is very different from care of early and mid-stage dementia patients. I also mentioned what care involved, but didn’t quite describe the impact on the persons giving the care. But today, with my husband off for work for some days, and as I try to mentally and physically adjust to handling the care solo, the nitty-gritty of care is all I can think of, so that’s what this post will be about.

A few years ago, when my mother was in mid-stage dementia, my main challenge was handling her confusion, disoriented, rages, and despondence. I also had to prevent her from hurting herself, which often needed dashing to hold her when she would try to walk without support (because she had forgotten about her balance problem). I needed to help her bathe and eat, and though she sometimes resisted or argued, she cooperated at other times. She wanted to remain clean and well-fed; the only problem was, she had forgotten how to achieve all that. It was tricky to support her while walking, but I learnt techniques that were not too tiring. We managed, she and I, with the help of grab bars, stability exercises, and sheer luck.

My emotional connection with my mother during all this was sometimes positive, sometimes not so positive, but at no time did I forget that she was “there.”

Now that my mother is bedridden, the required caregiving is heavily physical. Care starts at 2:00 am, when her diaper is checked. If it hasn’t leaked, she just has to be turned, an activity that can be done using just a night light. If the diaper has leaked, that means removing the soiled diaper, removing the soiled underpad, clothes, sheets, cleaning and drying and powdering her, putting fresh sheets, clothes, diaper, underpad, all of which requires more strenuous and repeated turning this way and that, under the glare of a light, waking her up. Manipulating a diaper out and in is tricky because she locks her knees tight and it takes quite some energy to prise them open sufficiently to thread through the diaper flap. Keeping her steady enough to Velcro the diaper needs a lot of holding her straight, too. Often, she resists and glares. Or she lies there, lump-like, passive, unwilling. She was asleep, remember? This is intrusion.

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Two years down the line: Care for a bedridden mother with dementia

My mother often told me stories when I was a child; while I have forgotten the details, some images linger on. Like the one of a delicate, sweet princess who was so loved and pampered that she never had to put her feet down on the floor.

It is almost two years now that my mother has been the princess now, bedridden as she is, and in late-stage dementia. We try and give her all possible comfort though she rarely utters a word to explain what she wants. I am not sure she feels pampered, though. For it is not by choice that she lies on bed and cannot even turn, nor is her silence her choice.

I have described this stage of my mother’s dementia in previous posts (you can read the entries chronologically is you check out the page here, and read from bottom up (sorry, but that’s the way blogs work). The milestones are covered in A new phase of caregiving: a bedridden mother, Ramblings on love, hate, and a life worth living, A year later: One year of care for a bedridden mother, Enjoying fun time with my mother, Keeping her happy: Challenges of late-stage dementia care,and Some days are good.

But as we complete two years, it is perhaps time for another update, even though nothing drastic has happened.

Most volunteers and organizations who aim at supporting family caregivers of persons with dementia focus on early and mid-stage dementia. Challenges tackled are typically related to agitation, wandering, aggression, and other difficult behavior, and volunteers counsel caregivers on preventing or coping with these, or on enriching the life of patients through reminiscence therapy and activities and things like that. Caregiver manuals typically skimp over late-stage care, possibly because in many countries, patients in this stage are cared for in institutions.

Not so in India, where almost all care for all stages happens at home.

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Some days are good

This is an update to my previous post regarding my mother’s condition; after a two-month-long deterioration, my mother stabilized, and then began showing awareness of her surroundings again, and responding to us on some days.

As anyone who has lived with a dementia patient knows, there are good days, and there are bad days. Before March, while my mother was generally inactive and not talking, there were days when she’d nod, smile, and say a few words. She would clasp my hand and kiss it.  She smiled.  Once in a while, she’d surprise us with a full sentence that made sense. Such good moments were what brightened the caregiving and brought smiles to our lives.

Those good moments reduced and then vanished around March this year.

My mother stopped uttering even a Yes or No and she no longer nodded or shook her head or clasped my hand. She barely opened her eyes when fed, and often refused to open her mouth. She did not wince or show any pain reaction. She did not react even when the technician jabbed her for a blood sample. It usually takes multiple jabs to take out a sample from her, and they have to poke around the needle in her flesh in a way that seems like sheer torture, but she slept through that entire process. The test reports were within acceptable ranges, and the doctor could not find any problem when he examined her. But she was fading, and we could not reach her as she sank into some world of her own.

We continued to talk to her, hold her hand, try and coax her, but at times it felt as if we were intruding, because it was not clear whether she preferred our presence or wanted to be left to her silence. We also kept trying to tweak things in ways we thought she would be more comfortable–wiping off her sweat, making her drink ORS when it seemed hot, and so on–but it was mainly guesswork, because she was not complaining or wincing or showing any happiness or unhappiness.

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Keeping her happy: Challenges of late-stage dementia care

My mother has slipped down some more on the incline of deterioration in her late-stage dementia, a slipping so gradual it is difficult to register it as it happens. But it was just two months ago that she enjoyed the story I was telling her every day and then the frequency tapered slowly, and now it has been several days since she indicated she’d like to hear the story. She sleeps most of the time, often not opening her eyes even when we feed her.

Around two months ago, when asked a question, my mother sometimes nodded or shook her head, or turning her face away. Once in a while (if the question was very simple, like, “Are you feeling cold?”) she’d even say a word or phrase (Haan) in response while nodding. She would nod vigorously if I asked her whether she wanted me to talk or to tell her a story, but sometimes she’d shake her head to indicate she wanted to rest instead.

We deciphered (hopefully correctly) her choices and her moods by asking simple questions and watching her body language.

When not sleepy, she enjoyed company and people talking to her , though it was often clear she did not fully understand the content of what was being said. For example, I don’t think she understood the details of the story (and it was always the same story), but she understood that someone was telling her a story, and showed her liking for that companionship and affection.

Now, it is increasingly difficult to understand her desires because most of the times, she does not respond (through words or even body language) when asked a question.

After her last round of blood tests and checkup, the doctor told us she is doing well as far as the physical parameters are concerned, and that the minor imbalances (the sort she has often had before) were within acceptable range and not sufficient to explain the change we were seeing. He agreed that she is declining in terms of her responding. “What can we do?” I asked. He explained that such gradual deterioration was natural given her dementia, and there was nothing to be treated as such. “Keep her happy,” he said.

I don’t think we human kind are very good at being happy. Or keeping others happy.
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A year later: One year of care for a bedridden mother

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

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

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

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

February has been a mixed month for my mother, the most painful part being when she went down with fever but could not tell us where the pain was. Being a dementia patient in an advanced stage, she cannot communicate her problems to us, which means we have to be detectives. Much investigation and deduction was attempted, without success, medication given to control the fever. Two days into the problem, she broke and swallowed a tooth–ouch! She broke another tooth again, the next day. Ergo, a tooth infection. Fever’s under control, and a dentist was requested to make a home visit to assess her dental status 🙂 A major project is now to be planned–a trip to the dentist to remove another tooth that is tethering on a breakdown, and to clean up the stuff left behind by the two not-so-neatly broken teeth. That she is fully bedridden makes the challenge more, well, challenging. Ah, well.

But what’s prompted me to write this blog is something quite unrelated, actually, a few unrelated things, that happened these last two weeks.

Firs, I’d like to share a memory dating around seven years ago. Seven years ago, I was still naive about dementia and how it affects people, still thinking increased memory loss was like losing ten keys a day instead of one. My mother was in her own denial mode, unwilling to admit to any memory loss. The world around her (as I can see in retrospect) bewildered her, and she was not going to tell anyone that. She was a fighter, she was. Often I saw her writing with a fierce concentration in a diary, and snap it close when I entered her room. One day, she left it open near her breakfast tray, and there it was, written with a red pen, written so angrily that the pen had torn through the paper. There were many broken sentences on the page, and I stopped short when I saw my name. She had written that she hated me, written it again and again and again, and written about others she hated, and at the end, there was: I hate hate hate the world.
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this month, a year ago

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

A few posts ago, I mentioned how much has changed in my mother’s state in the last year. As dramatic, as important, has been the shift in my perception and attitude. Last year, around this time – give or take a month or two – I was busy sorting out my approach to my mother’s challenging behaviors. She would have mood swings, she would say things that hurt, she would swing dramatically between sweet coöperation and gentle behavior, and angry, frustrated words and actions. Thinking and blogging and reading – these helped me explore what could be happening and how to handle it.
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there and yet not there

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

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

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

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

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

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

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

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

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

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

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

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


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A new phase of caregiving: a bedridden mother

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

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

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

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

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

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

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

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

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

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

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


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