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 I 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 me and the girl who helps me look after her.

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.

My mother’s inability to walk worsened after that. She totally stopped communicating and seemed very dejected. The girl who looks after my mother claims that the hospital visit had disheartened my mother very much, and I tend to agree. Perhaps my mother took all that solicitousness as a sign of how grave her condition was. Perhaps she feared it was a prelude to her being abandoned–she had lost two sisters and a mother to TB when she as a child. Perhaps she never quite registered we had come back from the hospital. I have thought a lot about what could have happened, and what we could have done differently, but I can’t think of anything.

A few days later, we noticed her wincing while passing urine. A checkup showed a urinary tract infection and a mild electrolyte imbalance. Treatment was started.

Anyway, so by October she was officially bed-ridden. We would lift her to a chair for her meals, and then place her back on the bed. We would do the chair-bed-chair-bed routine every few hours, and our own backs were quite stressed by then.  Her bed was adjacent a wall; after some days, we started propping her up against cushions placed against the wall for her meals. She was in no condition to know what a bed-pan was, so we used diapers. We kept learning every day. We realized we had to turn her every few hours. Talcum powder was bought. Plastic sheets, cotton sheets and half sheets, all were placed appropriately. A waterbed was tried out, and its squelching sounds and swaying feeling made it unusable. Handling her on the low bed, propping her up for food, all was strenuous. Catheters placed in the beginning caused spasms and bleeding; as it became clear that she had no problem passing urine, the catheter was removed.

In those early days, we thought that once her infection was under control and her electrolytes balanced, she would resume walking. She didn’t.

We switched to a hospital bed a couple of months later. Added an airbed. In retrospect we should have done that earlier. And perhaps, we could have recognized in September that she was unable to walk, and not tried to keep dragging her to the bathroom and back as we “hoped” she would improve.

Around December, we realized that repeated use of diapers was affecting her skin even though we tried changing the diaper as soon as we realized it was soiled. We switched to using underpads on the bed instead of diapers, so that the skin remained dry enough.

Around January, she developed a sudden fever. No immediate cause was visible, but it was clearly some infection so the doctor started her on a broad-spectrum antibiotic.  The mystery cleared two days later when we woke up and found two of her teeth missing. Ah, a tooth infection. One missing tooth was found under her tongue; the other was never found. We suspect she swallowed it. I guess we were lucky–if it had gone the wrong way down her throat, it would have choked her.

The loss of two teeth meant that her denture no longer fitted. We took the denture to the dentist and he tried adjusting it, but the teeth still remaining in the mouth were insufficient to hold the denture in place. A new denture could not be made because she was in no state for repeated trips to the dentist. We switched to liquidised food.

Ever since she became bed-ridden, she had also stopped talking. Well, almost. She would say a word or two sometimes, or even an entire sentence.

Like when the doctor once asked her, “Kaisi hain maaji? Mujhe pehchanti hain?” (how are you, mother, do you recognize me?) and she suddenly replied, “haan haan, kyon nahin, zaroor pehchanti hoon” (of course, why not, of course I recognize you) which left us all flummoxed for a few minutes.

Most of the days, though, we were using her expression and body language to guess what she wanted. We were observant about her smile or nod or her shaking her head or wincing. If she didn’t like a dish, she’d spit it out, which required us to be very alert while feeding her.

There has been nothing dramatic since the broken-tooth incident, just a very slow decline in her skin quality and an increasing tendency to get a cough. She tends to scratch herself energetically at times; we keep her nails filed smooth, but her skin is so delicate now that she manages to hurt herself quite often. We use oven mitts sometimes.  She often has problems swallowing, and falls asleep very easily, often in the middle of a “feed”.

We’ve by now found a rhythm of when to feed her, when to turn her, change her, clean her.

A few times a day, when she is awake, one of us holds her hand and talks to her. We use simple sentences, talk of simple things. Like naming the city we are in. Describing the weather. I read out ultra simple letters written specially for her by my son. I talk to her about her childhood, using abbreviated versions of stuff she told me when I was young. We show her labelled albums with large, easy to see pictures. Sometimes we read out (with some element of dramatizing) a tale or two from a large-print Panchatantra book. Sometimes, if she looks relatively alert, I draw a simple map and explain where Delhi is, and Shimla and Lahore, cities she spent her childhood in. She can no longer use her reading glasses, so everything we show her has to be simple, large, bold.  Usually she smiles and seems content; sometimes, she does not react.

A few years ago, I had assumed that any bed-ridden person would feel helpless and miserable all the time. That is not true for her. She seems happier now than I have seen her before (even when she was young). Especially after all the frustration and agitation she showed because of the inabilities caused by dementia, this is so much pleasanter to see. She seems to be at peace with herself, and is affectionate towards all of us. She holds my hand and takes it to her lips and kisses it. If someone had told me five years ago that I’d be spending a hour or two every day just holding her hand and sitting near her, I’d not have believed it. Hey, it sounds soppy. That I can experience her affection again seems nothing short of a miracle.

When people hear that my mother is bed-ridden, they fluctuate between sympathy and pity for me and for her. I try explaining to them that there is nothing pitiable about her condition. I do try telling them, but I don’t think they believe me; they probably think I’m being courageous or a martyr, or both.

This is not to say that there are no problems.

Her cough gets alarming at times, and keeps us tense. She is so frail that when she has those racking coughs her entire chest shakes and it seems all her energy is spent in a single bout of cough. Apparently she is not always able to swallow her own secretions, and this may cause aspiration pneumonia. Every time we feed her, and she forgets to swallow, we worry that she will not eat enough, or that she will choke. Every time she scratches herself and her skin gets injured, we are scared of infection. The possibility of bedsores worries us. What we are seeing is a slow decline, and there is not much we can do.

Then, we fear what else could go wrong. For the last few years, I’ve noticed a visible dejection and decline in her after every hospital visit, and I dread to think  that we may be forced to visit a hospital for some emergency.It is obvious that a hospital visit, with its smells and bustle and strange faces, is traumatic for a dementia patient who is clueless on why such a visit is required. I hope that I can spare her such trauma and let her stay peacefully with us till the end, surrounded by people she knows.

Yes, we are frightened by some eventualities and what may precede them. And with a bed-ridden patient, the imminence of such eventualities cannot be forgotten the way we forget them in “normal” life, where we set aside the possibility of death with an unstated assumption that “it won’t happen in the near future.”

But I think the point that gets missed, that I find so difficult to make people understand, that looking after a bed-ridden patient is not merely a load of work and worries and helplessness. There are some very, very beautiful moments one can share with a bedridden person, and my mother’s smile and the way she holds my hand sometimes is like an unexpected gift.

Dementia is a very long-drawn condition. For many years, as she and we struggled to cope with her diminishing abilities, all of us faced frustration and unhappiness. Things improved after I figured out how to reduce her frustration and mine, and found pleasurable activities we could do together, but her frustration kept returning sporadically. She would sometimes say, Why does this happen only to me? And I did not know what to tell her. She could not understand that she had dementia. She could not understand that she had dementia.

Caregivers I meet often dread how they will handle this stage of dementia. The fact is, looking after late-stage dementia is a totally different ball game from looking after someone in early or mid-stage dementia. As another caregiver once put it when she heard others talk of challenging behaviour: I know what you are saying and I’ve been there. But now, my mother is like a six-month old child, and there is only love.

Again, this is not to say things are easy. The care of a bed-ridden patient requires a lot of physical work. Also, the decline is so very obvious, and there are repeated alarming situations.

But a year after my mother has become bed-ridden, I can honestly write that I am glad I “lasted out” as a caregiver past those early and mid-stage phases, to care for her and be with her at this stage  where there is acceptance and peace and affection. For her, and for us around 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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