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. 

When I tell someone my mother is fully bedridden, cannot even sit up or turn on her own, I am often asked, “But at least she goes to the bathroom herself?”  I don’t know how people expect that a patient who cannot even sit up, let alone walk, will be able to go to the bathroom, but apparently, the “bathroom” business is difficult to imagine any place other than the bathroom, even in the context of a bedridden patient.

I now realize that most people confuse between being fully bedridden and being advised complete bed rest, but what is amazing is how many repetitions it takes me before people register that a person who cannot sit up or turn will not miraculously gain these skills for those short intervals of time when toilet-training insists we find a proper outlet for natural wastes.

I think part of this inability to accept that dementia can cause people to become bedridden  is because of that whole business of calling dementia “memory loss”, because memory loss seems like forgetting keys or names of people, not forgetting how to walk. And also, though most people can theoretically accept that the brain manages all activities of the body, they don’t really believe this; they believe some activities are so basic to being alive that they cannot stop.

Also, most press interviews, most literature, most stories on dementia patients focus on forgetfulness or challenging behavior, and do not mention such complete helplessness and dependence.

I find it amazingly tough to make people understand that something that damages the brain can result in losing the ability to walk. People accept this well enough in the case of stroke or paralysis, or even head injuries, but when it comes to understanding the impact of dementia, people don’t see how it can make someone bedridden. It is as if, when the brain gets damaged by a stroke or an accident, such helplessness is possible, but if the same damage happens more insidiously, over time, by a progressive degenerative disease, then it cannot have the same impact…

Maybe I’ll use this analogy next time 🙂

Anyway, so the next question people ask–once they realize that yes, the patient has to do “everything” on bed, is that, so does your mother use a bedpan?

This is quite a valid question, because many bedridden patients do use piss-pots and bedpans. But things are different for persons with dementia, who typically become incontinent even prior to becoming bedridden. They don’t know where the bathroom is, they don’t realize in time that they have to “go”, they may not feel the urge, or may not know what to do when they feel that pressure. “Accidents” of the soiling type increase quite a bit in the later part of mid-stage dementia.

Using a bedpan is only possible if the person senses the urge, knows what that urge means, can think of asking for help, can use the bedpan. These are precisely the sort of abilities that go down because of dementia. Many patients are placed in diapers much before they become bedridden. So, the probability of any bedridden dementia patient asking for, and effectively using a bedpan is indeed very low.  

Shocked expressions are what I typically encounter when I try to explain this. Again, I attribute this to the fact that the understanding of dementia is restricted to “memory loss” thanks to popular media depiction. People do not emotionally register that “memory loss” is only a more visible symptom in the beginning and does not represent a complete picture of the havoc dementia wreaks.

There are hundreds of diseases we do not understand, and it would be silly to assume that people should understand this aspect of dementia. Knowing about memory loss, is, in fact, a good way to start understanding dementia, because it could lead people to get a diagnosis.

The tragedy is, I encounter such shocked disbelief even from family members of persons who are in the early stages of dementia; these family caregivers should really be more aware of the stages of dementia because they will have to adjust their lives around it to provide support.

Anyway, here is another thing that totally baffles people: my telling them that my mother has problems swallowing because of her dementia.

We all take swallowing so much for granted 😦

Most people assume I am talking of biting and chewing problems, and give suggestions that I should perhaps give her softer food. I tell them she is on liquid diet, but it takes a lot of time for people to understand that someone may have problems swallowing even liquids. I have even had (on multiple occasions) people advising me to give her food she doesn’t have to swallow, and it takes them time to remember/ register that all food has to be swallowed. Of course, one can use tube feeding, but that is not what they are suggesting. (The efficacy of tube feeding in dementia patients is still a matter of debate, but these people were not referring to such nuances).

When I talk to people about my mother’s bedridden state, I often start wondering why more people do not talk openly about this. The more we talk, the more we can share tips and do a better job.

Think, for example, about how freely parents, grandparents, aunts and what not share tips and episodes on challenges and triumphs of bringing up babies. Look at the amount of articles, the amount of help books (not just the bible by Spock, but those racks after racks full of books).  No one expects common sense and instinct to suffice for child-rearing. When it comes to caring for infants, also dependent creatures requiring skilled care and constant attention; even people unconcerned about parenting themselves don’t go out of their way to avoid interactions.

But helpless elders and their care arrangements and tips and tricks are invisible.

What a pity, is it not, that we take our elders so lightly that we hide this part of their lives under wraps, make it invisible, not benefitting from collective wisdom and making this twilight phase of their lives smoother for them and the families around them. In a culture that prides itself on respect and care of elders, should we not be open about such topics, so that no family feels hapless and ignorant while trying to ease the lives of these persons…

Of course, I confess I hadn’t noticed the utter lack of literature and information on these topics some years ago, but as they say, things are different when the axe falls 🙂

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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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India, and deeply concerned about dementia care in India. On this blog I share my own caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care in this set of pages:

4 Responses to Questions people ask, and the invisibility of problems and solutions related to the twilight years of helplessness

  1. Rummuser says:

    I am glad that you have decided to write about this problem which too does not get the attention that it deserves. I have been on separate correspondence with you on this topic and can relate to your experiences. I personally went through the humiliating experience of being totally bed ridden and dependent on others for normal day to day functions and was able to imagine the emotional state of people on such a condition on a permanent basis for no fault of theirs. We do need more propaganda, if that is the word, about care givers’ problems in such cases, so that more compassion and assistance is forthcoming.

    • swapnawrites says:

      Yes, it is very difficult for the bedridden person (especially those who are mentally alert enough to realize it), and we only make it more difficult by our whole way of talking that makes taking any help seem like such a shame. I really wish we all could be more matter-of-fact about it, but I think it is the way we are conditioned, as if needed help is weak and wrong…

  2. M. says:

    My mother has dementia (& IS incontinent) and very, very limited mobility. She spends the day in her reclining chair and since having a UTI in July and being in hospital, she has the “runs” off and on. The diarrhea unfortunately gets around her vaginal area and my step-dad and I wonder how in the world do we keep a bacterial infection from happening? He did test her urine a couple of weeks ago, and her doctor’s office said she had/still had the UTI and is back on the meds that seem to cause the diarrhea of sorts. She also has anti-diarrhea meds, as well. It is hard to find any real information for this with dementia, incontinent patients. She was only in the hospital about 2-3 days. CAT scan was done and all was ok. Any help with this serious situation would be greatly appreciated. She is 84-1/2 yrs. old. She has been mentally deficient about 2 years now. She does not tell us when she has to go to the bathroom, which was being done with a walker, or holding her by her hands and walking her to the potty, but she got very tired doing that. She mainly just relies on her diaper situation.

    Thank you very much.

    • Sorry to hear this, M. I am not a doctor, so I cannot offer any medical advice, but I am emailing to you separately to share my own thoughts and experiences that could be relevant.

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