All in a day: what care for a bedridden mother involves
October 14, 2011 29 Comments
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.
The next round of her cleaning is performed at 5:30 am, by which time typically a “big job” does need a rather thorough cleaning up. Again, this involves a lot of rolling back and forth while taking care of the hygiene, and the ease (or not) of rolling depends on the degree of cooperation and the physical energy…but more on that later.
Cleaning done, it is time for putting the morning eye-drops (a relatively simple task), and then she has to be propped up for her first medicine of the day, her thyroid medication (which, like all her medication), is given dissolved in water because she cannot swallow pills. She can barely swallow liquids, either.
It is amazing how my mother manages to slip down the bed even though she never seems to be moving. Luckily we have a hospital bed so the head-side can be cranked up using a lever (takes fifty turns, I counted), but she needs to be positioned properly before we turn the lever so that she is sufficiently upright when the head-side is raised into an almost-vertical position. That means yanking her up the bed, something done by standing at the head of the bed, and pulling her up gently. Often, she resists by grabbing the side rails of the bed. An amazingly tight grip, too.
Once propped, she has to be coaxed into opening her mouth, the liquid is poured in, and then one tries to make her swallow it. Sometimes she keeps stuff in her mouth for several minutes, in spite of our stroking her throat, her cheek, requesting her to swallow. Sometimes she opens her mouth and out it flows. Sometimes, she falls asleep midway, liquid still in her mouth. Various techniques exist for these, like stroking her cheek, her throat, talking to her, demonstrating by miming an exaggerated gulp, touching her lips. Once in a while she obliges, and swallows properly.
Medicine given, she slumps back into sleep, and is lowered back into a supine position and turned to her side. The next activity starts after a while, when next she seems awake.
Catching my mother awake is tricky. One has to keep peering in and checking every ten minutes or so, because every time she is awake, one has to “seize the moment” to get something done. Yank her up, prop her up and nebulize her or try to brush her teeth (she can no longer spit toothpaste out, so we use diluted Listerine which she does manage to spit out).
By around 8:30, her breakfast has been prepared by then (liquidized fruits and biscuits) and she needs to be fed. We keep checking up on her every ten minutes. Meanwhile, if she is soiled, she has to be cleaned up.
Meal times are tedious. She falls asleep, forgets to open her mouth, forgets to swallow, looks blank, spits the food or just drools it out. Time taken ranges from half-an-hour of almost continual feeding to two hours of interspersed feeding. Sometimes one has to lower her and let her sleep in between breakfast, she is so fast asleep. Somewhere, one decides that okay, she’s had enough for it to qualify as breakfast, and one has managed to give her the BP medicine, and so, yes, breakfast is officially over.
Bath is no longer a daily activity nowadays. Earlier on, when she was alert enough to enjoy being bathed, we did it oftener, but now the need for a bath is weighed against her apparent energy levels, how cold it is, and so on, and sometimes one cleans one part of the body one day, and another part another day. The skin is kept clean, dry, powdered, and soft, but the combination of what is used to do so varies. The dilution of soap is varied, whether face cream and body lotion are needed depends on how her skin feels and whether we think she is feeling cold when they are applied. It is something one estimates, as she says nothing. We can only guess, because she no longer protests if the water is somewhat cold or hot, and only winces in case of extreme temperatures. Speed is of the essence while bathing her to minimize exposure (though the door is kept closed and the heater is on). Sponge one part of the body, and then immediately dry and powder it and cover it. Most of her clothes are open along the length and hence easy to slip off or on, but we still make her wear a loose vest to keep her chest warm, and she resists when we try to pull it off or on. I guess we’ll be simplifying it with velcros or ties soon…
The day goes on. Every hour or two, peek and clean if needed. Turn her every two hours. Near meal times, check every ten minutes and see whether she’s awake. Grab that moment. Prop her up for meals, for medicines, for nebulizing, for brushing her teeth. Before each propping up, straighten her and pull her. It is amazing how much she manages to slip down the bed in even an hour, given that she doesn’t seem to want to move. It is also impressive how firmly she grips to the bed’s railings or stiffens to resist any attempt to move her. I guess she thinks we are intruders.
Lunch at 1pm is as challenging an “activity” as breakfast, and “dinner” at 5pm is again, much the same. By six pm, all that remains to be done is her night-time nebulizing and her teeth-brushing. The night-time diaper is secured in place at 10pm after another struggle; she locks her knees so tight that threading the diaper through the legs is tricky.
Then, set the alarm for 2 am.
Of course, that’s not all her care involves. There are multiple rounds of washing clothes, the complexity of the pre-cleaning depending on the degree and type of soiling, because soiling happens in spite of diapers and underpads. Her food has to be cooked and liquidized. There is cleaning, buying, organizing food, groceries, medicines.
All through this work, my mother shows no emotional connection. She looks blank regardless of how much one smiles at her, or makes small chit-chat. Or she drops off to sleep, or looks mildly annoyed when being manipulated physically into one position or another. She does not respond when we introduce ourselves or talk of things she used to enjoy just about three months ago. Her eyes follow the movement if someone is walking or waving a hand, at times, and once in a while, say once in two days, she will respond to a “hello” or “good morning” with a matching phrase, but those moments are so rare I try to freeze them in my heart to compensate for all that blankness…
Till a couple of months ago, my husband and I would split the work so that we could both do this as well as continue some of our “normal” activities. I would usually take the “day shift” and he would take the “night and dawn shift”. When he had to go out of town, I would handle it all, and sometimes, when he was in town, I’d take a day outing and leave him to handle part of the “day shift”. The arrangement worked well inasmuch as my mother’s care was handled while both of us also managed to squeeze in the more essential activities related to our other commitments and interests, and we remained within tolerable limits of fatigue.
But the situation has been changing, and now I leave more of the care work on hubby whenever it is feasible for him, because the physical effort these care activities take me have been increasing slowly and have sort of crossed a threshold, leaving me far more exhausted.
The direct care activities, which involve interacting with my mother, take my husband around 5 to 6 hours a day when he handles them alone. The challenge for him is the way they intersperse through the day. Because he has to keep checking her for soiling, keep turning her, keep trying to catch her sufficiently awake to feed her, it does not allow him sufficiently long stretches of free time to do anything more complex than checking emails (the simpler ones) or taking a few calls. Work that needs concentration is very difficult to squeeze into the day, and has to be deferred for late in the evening, by which time the sense of fatigue is stronger. There is a feeling that the day has gone past without getting much done, because of the way it fragments.
I face greater challenges. The direct care that takes my husband six hours, now takes me over seven hours. There had been no such significant discrepancy some months ago, when my mother was still able to cooperate somewhat, but now I am severely disadvantaged because of my height or weight, or should I say, the lack thereof.
I am short and underweight. At five feet nothing, and a weight that typically oscillates between 35 and 42 kilograms (and is significantly less than the minimum recommended for my height), I have to look up at everything and everyone. When I tackle a swinging glass door, I have to plant myself really firmly on the floor so as not to get swayed by heavy door swinging at me with a vengeance I never quite understand. My mother, three-and-a-half inches taller than me, has always been at least ten kilograms heavier, too.
The problem is that, in addition to being bedridden, my mother has become increasingly uncooperative, sometimes limp and heavy and passive, and at other times outright resistant, stiffening at touch, preventing me for trying to move her by grabbing my wrist or clinging on to the bed rails. All care activities involve moving her and coaxing her to do something, and I am at a physical disadvantage through most of this.
For example, when I have to yank her up the bed to correct her position, she grips the railings more often now. I cannot reach out and disengage her fingers from the railings; I am too short for that. I have to walk across to do that, first one side of the bed, and then another, and I make her fold her hands on her chest. But often, by the time I tackle the two hands and reposition myself for pulling her up, she has gripped the railings again. My husband, being significantly taller, can just lean across and make her do the necessary degripping-the-railing, without performing circumambulations around the bed.
My hand is much smaller than my mother’s hand. When I try to keep a firm hold on her hands, she is easily able to twist her fingers out, and close my hand into hers so tightly that I have to struggle to free myself. Her grip is strong, her fingers bony, her hand big. It gives me a workout just to break free. When I roll her over to one side to clean her, holding her in position with one hand while I clean with the other, it takes me a lot of energy to keep her steady; she is, all said, bigger than me. I have poorer leverage. Her lack of cooperation makes the task much more taxing now.
When I have to keep walking around the bed to adjust her because I am not tall enough to lean across, and she uses that interim period to slip back into her original position so that I have to start all over again, I sometimes remember the Vikram and Betaal stories in which the industrious Vikram keeps trying to ferry the Betaal but the Betaal always manages to escape back to the tree so that Vikram has to start all over again…
I have my workarounds, of course: a huge pile of bolsters and cushions that I use to wedge her in place while I do my worship rounds around her bed, but the work is still substantial, and the bolsters are not always effective.
Sometimes I wonder whether watching me would be a cartoonist’s delight; think slapstick, canned laughter, Tom and Jerry type of futile, repetitive action.
Maybe part of the reason I get more tired now is because I am getting older.
For these last few months, I have started wondering whether I need to pull in help for the days when both hubby and attendant are away. The problem is the quality of substitute attendants, their clock-watching nature, their discomfort with the hygiene and their taking shortcuts. Night-shift attendants don’t spend the day resting; they work through the day, and then assume they can somehow handle the night, too. They doze off, they pretend they did not notice the soiling, they skip the turning. Given how fragile my mother is, neglect could be very costly.
People talk of caregiving as something that needs love and patience, but love and patience don’t make me taller or stronger or enable me to hold her hands down more firmly. Howsoever much I may love my mother and want to do a good job, her hand is still over an inch longer than mine. And it is wider, too.
The sheer physicality of the work is something people underestimate. They underestimate how this part keeps growing.
A 40 kg person trying to handle someone heavier and taller is very different from a 70 kg person caring for someone shorter and lighter. Everything takes me more time, more energy, in spite of all the optimizing I do and the ergonomic tricks I try to use. Height and size are so critical now. I expect this experience is similar for anyone who is physically caring for someone taller and stronger and uncooperative. We don’t talk enough of this, we don’t share enough tips and tricks for this, we don’t have enough support and information related to this part of caregiving.
Funnily, a couple of years ago, a well-built woman of around 80 kg told me how she was unable to lift her mother (who was half her weight) after a fall; imagine how much more difficult it would have been had she been lighter than her mother!
My mother used to fall a lot some years ago. I (shorter and lighter then, too) had to lift her, and for that I had put together a set of stools of increasing height that I would use. I would leverage her so as to lift her to a low stool, then the next taller one, and so on. She was cooperative, too, trying to get up. We would manage.
Now, she is either totally passive, or actively resistant. Though outsiders may think she must be easier to handle (she’s just lying in bed, right?), I find it tougher.
The day long care for my mother is also tricky because of how it takes up so much time, leaving the caregiver no time for other things. I interleave her work with my own cooking, eating, and other work, but everything I do is interruptible. If I notice her stirring awake when I am midway of my breakfast, I jump up and feed her instead; catching her awake is so chancy.
Often, on a day when I’m handling it all alone, I have to make a very conscious effort to remember to eat my own meals in time (I actually set an alarm for it). I have to make an even more concerted planning to make sure those meals are healthy. Mostly, I am so tired I am sorely tempted to gobble down cream biscuits or jam sandwiches or chips or omelets rather than salads and sabzi and roti and daal. I feel I “deserve” those sugary kicks. I feel I have “earned” them. As I am a light sleeper who does not handle interruptions in sleep well, and cannot easily catch up sleep in daytimes, when I handle my mother’s care fulltime for more than two or three days I am left sleep-backlogged and ragged.
I dare say that if I had to do it all the time my body would find its rhythm and adjust…
I think one main aspect is that I have not redefined my life to be only caregiving. I also have other work I want done. Some is the essential part–the bill payments, tax work, managing investments; some is because of the activities like my blog, my dementia site, people I try to help, the usual correspondence, my other writing work. I cannot stop them all abruptly for some days when pulled into such full-time care–I need to maintain some degree of continuity (even if low key) on the days the attendant is away. Squeezing in even a few of these tasks makes the day more tiring; not doing them leaves me feeling frustrated, as if robbed of my days.
Life is passing me by.
The attendant who cares for my mother usually looks cheerful and energetic. Clearly, she does not find it taxing work. For her this is a full-time job, and she gets her sense of fulfillment doing it. Her salary helps her and her family live a better life, and she can get her daughter admission in a school of choice. The attendant is decades younger than me, she is taller, and she is stronger. She does not have to be available for anyone else or for any other work, and can adjust her day’s routine around this work on an ongoing basis. She has found her rhythm of sleeping and waking, cooking and resting. This is her work and her life; for me and hubby, though, this care is something we fit in along with other commitments and responsibilities we still have as part of our lives.
I really wish there were enough good quality attendants one could employ for tiding us over when the current attendant has to go off to her village, but I am unable to decide whether the risk of employing an incompetent and negligent attendant is worth taking. A new attendant needs constant supervision and training for almost a week, and may turn out to be quite useless in spite of that. If my current attendant is off for two weeks, I don’t think it is worth spending one week in this training, given that the quality of replacement attendants is typically poor, and most of them anyway don’t feel involved with the patient for short duration assignments.
Or am I just being too risk aversive?
Every time the attendant goes off, I tell myself that I’ll consider other care options next time she goes on leave; we’ll manage somehow this time.
In management jargon, we have this oft-quoted story of the boiled frog, where a frog kept in a beaker of water on fire does not realize he can and should jump out, till it is too late. I sometimes wonder whether our continuing to handle the care when the attendant is away repeatedly is acting a bit like that boiled frog, because the caregiving work is getting heavier and heavier, slowly but surely.
I dare say I can tune myself into full-time caregiving as my sole role, and take it as the only occupation that will occupy me physically, mentally, and emotionally for the days that the attendant is not there. I would have to rearrange my life, cut out a whole bunch of stuff, alter my self-identity. I’m sure my body would find its rhythm. I won’t grow taller, of course, but I may end up becoming more muscular. Come to think of it, my mother gives the term “resistance training” a whole new interpretation.
But then, I’d be a different person, and I’m not ready for such a transformation. I wouldn’t be answering those emails or paying up the advance tax or settling those bills. I wouldn’t be feeling inadequate because I didn’t. ..
And I wouldn’t have written this blog entry either…(though it did take me a lot of squeezing out time for three days)…
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
If you like this post, please Share/ like this post using the buttons below.
You can also follow this blog by getting email notifications; click the “Follow me” option at the bottom of the right sidebar. Thank you!