Priorities and scope of care

A few weeks ago, I had a long phone chat with a caregiver that confirmed what I suspected: some caregivers feel that persons around them only keep thinking of what more the caregivers can do for the patient, without sparing a thought for the wellbeing of the caregiver.

This caregiver, let me call him/ her Emm, is handling fulltime support of a parent with dementia, alongside the responsibility of running the home and earning the money to do so. When Emm first contacted me, the parent (who had several medical problems) had not yet been diagnosed with dementia, but Emm had chanced upon my website and realized that the parent’s behavioral oddities could indicate dementia. Over several long calls, we discussed multiple aspects of caregiving and future planning. A formal diagnosis was obtained after a few months, and Emm’s self-education on dementia proved helpful in extracting more support from the consulting doctors than they were voluntarily offering. Emm also joined multiple forums to connect with volunteers and caregivers. Caregiving has subsequently stabilized.

In our last catch-up-and-chat call, Emm expressed disinterest in discussing dementia or knowing more about it. “I do not want to think about dementia” were the exact words. The parent was stable, seemingly content, clean, fed, with all medical checkups up-to-date. Emm wanted to use this stable period to work hard and build savings. Having already read up enough on dementia, Emm was confident about being able to recognize if the symptoms were worsening, and would contact me or others for help at that stage. “I hope you don’t mind if I don’t like to talk about dementia,” Emm told me.

I’m not exactly fond of talking about dementia myself, I said 🙂

I explained to Emm that while I do work in dementia care, I definitely did not expect everyone to go around twisting and turning their lives to make dementia the axis of their lives. The way I saw it, the whole point of support is that caregivers and patients should be able to live their own lives smoothly in spite of the patient’s dementia.

Emm continued, ” You know, I keep hearing in groups about how we must spend time sitting with the patients and talking to them and all that, but I don’t have the time and energy to such things. The care takes up so much time and energy that I have to struggle enough to meet my work deadlines and sometimes I just want to relax. Sometimes I feel so guilty.”

I could not find the right words for a few moments. Then I went on to assure Emm that what Emm was doing was already superhuman; to handle fulltime care alongside fulltime work alone was remarkable. Feeling guilty should be nowhere in the picture. Emm was handling both caregiving and career very well indeed.

We then moved over to chatting about stuff Emm could do to earn more and to relax or get friends and so on, and did not talk of dementia.

I thought long and hard about the call after it ended.

It occurs to me that caregivers are flooded with lots of advice, and this advice is usually not placed into any overall framework or perspective. So caregivers have to cope with increased work, and when they get advice, they must look at all their work, and all this advice, and evaluate this entire bundle to decide their priorities, and judge what is essential, what is do-able, and what is not.

A lot of caregiving advice I hear or read focuses on ‘love,’ and love is never ending. There is always one more possible way caregivers can show their love, and unfortunately, advice usually contains no tips to help caregivers prioritize between tasks.

The way I see it, there is a basic degree of caregiving that forms the core: knowing how to communicate with the patient, helping them with daily activities, creating a routine for them, having an environment where they are able to remain active as well, as safe.

Basic caregiving is a matter of doing things differently, using ways that are more effective and efficient because they take the realities of dementia into account. Instead of arguing or explaining, caregivers can be gentle, simplify, emotionally connect/ distract patient. When helping a patient, we save time if we let them work at their pace and remain calm (we don’t waste time and energy arguing, getting angry, and their getting angry). Home adjustments can make homes safer and more convenient for patients who can then walk without falling and not be tempted to wander out. The overall effort in all these core activities requires caregivers to make multiple changes in their habits and at home, and also uses up more time and energy than living with a “normal” adult would have.

Yet when caregivers achieve this core, many advisors don’t take time to appreciate what has been achieved. Instead, they urge caregivers to do more for the patient. What caregivers can do for the well-being of the patient is a never-ending list. Play games, take them for walks, take them for outings, spend time with them on reminiscing, and so on.

When caregivers say they are tired, more advice follows, more items to their to-do list: take time for yourself, care for yourself, take outings, listen to music.

Yet how is the caregiver, already tired, to take out the time and energy required for self-care?

Time and energy are limited resources for everyone, and caregivers are no exception. To do something for a patient (or even themselves), they have to take out the required time and energy from some other activity. Tips on how to do this are not often discussed.

In some dementia support forums, there is an implicit assumption that caregivers will keep pumping in more and more time and energy into the wellbeing of the patient, past the point where such investment into the patient’s wellbeing means cutting on basic needs and other responsibilities of the caregiver himself/ herself. And the caregiver’s failure to spend more time and effort on the patient is seen as failing in the duty to keep the patient happy, or as a suboptimal compromise.

The underlying assumption of some advisors is that once a patient gets dementia, that should become the focal point for the caregiver, and any other passion/ career/ responsibility the caregiver has must be placed on the backburner. Some people even talk of how caregiving is a privilege, how care for a dementia patient is an opportunity to grow and develop love and all that. This may be so for some persons, and more power to them, but effective caregiving can be done without making dementia a life-transforming mission for the caregiver. Not everyone wants or needs such “growth.” A caregiver is not inferior or bad if they chose to have a different set of priorities.

Whenever someone gets a major disease (whether dementia or some other major disease), families integrate this into their lives in a variety of ways.

Some families totally change their life and approach, maybe switch to some New Age style of living or backpack across continents or give up corporate jobs and start a niche bookshop on alternate medicines or switch to an ashram (or convert their homes into one).

Others integrate the care into their normal life, and find ways to balance between responsibilities and roles and continue more or less along the same path they were on earlier.

Some families flounder and get overwhelmed, and some families break up, fight, have divorces, collapse.

I do not think it is right to assume that the only correct way to care is to totally transform life around the caregiving. It is perfectly fine for persons to find a balance which allows them to continue with their old career; such families do not lack “personal growth” or “positivity”–they are choosing different fields to express themselves through. As a caregiver, I am not obliged to start centering my life and priorities around dementia beyond what is necessary for the patient’s care.

As for duty, duty is a funny thing.

A caregiver with a mother who is a dementia patient will get one set of lectures on duty from dementia care volunteers, and quite another from her teenaged son’s homeroom teacher at the PTA, and perhaps a third from her husband who needs a bypass surgery.

Here are some of my initial thoughts, which I expect I will refine over time…

  • I think we must differentiate between the basic caregiving skills (needs of patients and families that are at the bottom of the pyramid) and between advanced care environment choices.
  • I think we must help caregivers achieve the basic care environment and be appreciative and celebratory about it, rather than dismiss it as if it were nothing or not good enough because more can be done. Achieving a stable core of care requires major habit and attitude changes and also time, energy and money investments, and it provides a good environment for the patient and family. This milestone should receive the appreciation it deserves.
  • Suggestions for enriching patient lives (beyond a reasonable content level) should not be treated as more important than the caregiver’s core wellbeing. The caregiver’s basic needs–enough sleep, nutritious food, fresh air, ability to cope with other responsibilities–cannot be ignored or compromised upon for this component. Enrichment activities suggested are best if they add to the enrichment of both patient and caregiver (sort of get real bang for the buck) and not only the patient.
  • All assistance given should take into account that caregivers are stakeholders in caregiving and their wellbeing is as important as the wellbeing of the patient.
  • Instead of keeping on adding to the list of what more caregivers should do, suggestions should include ideas on what caregivers need not do, and help caregivers identify what is less important. Ideas should include tips on how to prioritize the competing demands on time and energy, and reduce workload.
  • There should be no stated or implied “guilt inducing” words. This whole business of noticing only what is not, being done and taking for granted what is being done drives caregivers into guilt-depressions or hiding.

Take Emm, for example, who found effective ways to stabilize the parent’s care and then began focusing on earning and savings. Should the environment around Emm appreciate these achievements, or make Emm feel guilty for not being SuperCarer?

I dare say no one in touch with Emm would have considered Emm inadequate, but the point is that because the general talk around caregiving focuses on doing more and more for the patient, Emm is not comfortable talking of Emm’s own need to remain sane and keep earning.

I strongly feel that repeatedly depicting care as something that necessarily needs fulltime dedication makes discussion/ support forums intimidating for persons not choosing (or not in a position to choose) that path. Such caregivers think they will not get suitable support and solutions in such forums, or may be subjected to preachy lectures, and so they do not approach people for help. Further, some caregivers feel inadequate or guilty while others may feel angry or misunderstood. Either way, caregivers hesitate to share their problems and end up getting isolated. Many caregivers have told me that they feel that persons offering advice are only concerned about patient welfare and not the caregiver.

According to me, effective support of a caregiver should focus on helping caregivers and patient reach a stable point where dementia and associated care gets integrated into the family’s fabric of life. The patient is generally peaceful/ content, as active and independent as possible, with up-to-date medical checkups, and enough care given for hygiene and nutrition. The caregivers are healthy, content, balancing their various activities, interests, and responsibilities, satisfied about themselves and their role, powered up enough to last the long caregiving journey. It is then for the caregivers to decide whether they want to go a step further and make major life shifts and revolve their lives around the patient, or whether they want to use the time and energy left after caregiving for some other cause/ career/ hobby/ responsibility.

BTW, telling a caregiver he/ she must take care of himself/ herself without offering any resources or tangible suggestions on how to free up the time for such self-care is only rubbing salt into the wounds…


More blog entries on caregiver role and identity are available here: Caregiver Role.

Resource page to prepare for the caregiver role is available here: Understand the caregiver’s role


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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal 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. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

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