Experiences across divergent caregiving situation

By Swapna Kishore, cyber.swapnakishore@gmail.com

When Caregivers Link invited me to co-facilitate a two-week long e-group discussion (focus: home care staff), I was happy to agree. Years ago, when I was overwhelmed by my caregiving role, I had benefitted from support group meetings; I felt an online forum would allow caregivers to connect from across geographical locations, interacting at their own pace and time. I wanted to be part of this experience, and to see how useful and fulfilling it was for the participants.

The group was an interesting cross-section of caregiving experiences: caregivers living with the patient, and remote caregivers struggling to support from a distance; active carers, and those whose loved ones had passed on; primary caregivers, and persons who were supporting primary caregivers.

As the participants shared their experiences and problems, and made observations/ gave suggestions about general problems and each other’s situations, the common issues across diverse individual caregiving experiences started becoming obvious.

A focus area of this e-discussion forum was concerns/ issues related to the use of paid care staff.

All participants felt that paid care staff was critical for providing effective home care. Most of them mentioned unavailability of trained care staff as a major problem they had faced. Participants talked of unreliable agencies that sent untrained staff (while claiming they are trained). Families had no way of checking the credentials of agencies or staff, and were sometimes cheated out of deposit money.

Family caregivers reported inadequate training of these so-called trained persons. Some could not read the prescriptions or names on medicine strips, and could not be trusted to give the patient the correct medicine at the correct time. Some did not understand and appreciate hygiene. Many were ignorant about which tasks to perform (like dental hygiene). Many could not recognize medical problems, and did not warn the family in time. Some were ignorant about basics like preventing bedsores.

Problems were also faced related to unacceptable attitudes and poor reliability of the paid care staff. Some were rough with the patient, and lacked empathy. Some (part-time) care staff lived in unhygienic conditions and carried infections to the patient from their homes. Care staff often reported late for work, or were absent. Absenteeism emerged as a major problem area, because it meant the family was left (at short notice) wondering how to handle the care.

Caregivers were also worried about safety and security problems created by the constant presence of paid care staff. Petty thefts seemed common. Family caregivers worried that their parents were alone in the house with strangers.  Many caregivers were unhappy about the lack of references for the hired staff.

Another thing was mentioned by caregivers: families face problems adjusting to the presence of the care staff. Full-time staff is difficult to employ if the family lives in a small apartment, and cooking meals for full-time staff was additional work. Additionally, female family members did not feel comfortable with male staff’s presence for so many hours. Hired care staff sometimes did not know how to use household gadgets such as modern bathroom taps and geysers, and gas stoves and TV remotes. Misuse of phones was mentioned.

Multiple care staff, medical services, and household help need to be managed. Many families use more than one care staff (like a day person and a night person), along with physiotherapists, nurses coming home for procedures, and doctor home visits. They also take the patient to clinics and hospitals for medical procedures and check-ups. They employ maids, drivers, and other help. Coordinating and tracking these takes up time and energy.  Caregivers also discussed pros and cons of various care arrangements, such as using full-time staff versus using a day-shift person and a night-shift person.  Some caregivers described how they switched from being the sole caregivers to employing paid care staff; this usually happened when they could no longer handle the patient’s work, or when their inability to leave home started becoming a problem. Looking back, many felt that they should have employed care staff earlier.

Tasks that paid care staff perform include patient hygiene, feeding the patient, taking the patient for walks and for outings and doctor visits, etc. Caregivers mentioned that, over time, they had learned that supervision was necessary and that some important tasks should not be handed over to untrained staff (on the days that the trained care staff was absent). On the other hand, family caregivers also reported that they found some tasks very difficult for the family to handle in the absence of the paid care staff–these often included patient bath and personal hygiene.

Many caregivers mentioned that the agencies underpay the care staff; home care staff is often effectively paid less than normal household help, something that may explain why the job is not attracting the best talent.

Problems/ issues with home care staff were not the only topics discussed in the e-group. The caregivers mentioned other areas that made caregiving difficult/ tiring/ distressing.

Some caregivers directly providing patient care mentioned conflicts and misunderstandings with family members who lived at a distance. While some caregivers were happy with how other family members shared work and responsibility, other caregivers felt that family members living apart did not understand caregiving problems, did not participate in the work and responsibilities, and/ or were critical. As a result, these caregivers felt let down. Family relationships were affected. Conflicts occurred more when the family members living apart had no direct caregiving experience and/ or were misled because of the patient’s complaints (often an outcome of the patient’s confusion arising because of conditions like dementia).

The problems of remote caregiving were mentioned by family members living in different cities who were not sure how to help (especially in caring for parents living alone). Problems included coordinating care from a distance, and responding in time to emergencies/ serious situations. India lacks services that would make “remote caregiving” smoother.

Caregivers found it difficult to get information required to plan and provide home care. They expressed the need for directories of services, certification of services, and of caregiving material they could use. Lack of family physicians was also mentioned as a problem.

Finally, apart from problems related to patient care, one area stood out as a major concern: caregivers felt overwhelmed and emotionally isolated.

Caregivers get isolated from friends and others because they are busy caregiving, and they do not meet people who understand and support them. The presence of forums like the online group helps them, because in such forums they are not alone in their problems, and can share both problems and tips.

Discussing things that stress them, caregivers mentioned slowed down/ abandoned careers, and compromises made in other family commitments. They explained that visitors lacked sensitivity, especially when interacting with someone facing a mental problem, further driving the family into isolation. Some mentioned the helplessness and lack of dignity that the patients felt because of their dependence, especially when the hired help bunked.

Some caregivers were thinking ahead into their own lives and wondering how to plan for their own old age; they wished India had enough good quality assisted living facilities.

In the two weeks of the e-discussion, caregivers also shared ideas and suggestions on what could help. Some specific resources were shared, and tips pooled related to areas like security and getting information. Caregivers shared the criteria they used to decide between various care options.

Many caregivers reiterated that forums like this two-week e-group were very helpful because they no longer felt alone, and knew that others were facing similar issues. Exchanging personal stories and suggestions provided them a sense of community.

For me, the e-group confirmed my belief that caregivers benefit from communities where they can talk freely of their problems and share tips. Also important is that while specific personal incidents differ, there are several common issues facing caregivers. Also, concern areas mentioned in the group were the same as what caregivers mention during in-flesh support groups and in interviews.

This is a very important point, because it means that persons looking at solutions can treat this set of observations as a base of problems to address.

Of course, help can come in many shapes.

For example, having forums can help caregivers. It reduces emotional isolation when we caregivers know there are others like us, and when we share simple tips that worked for us and may work for others.

Then, we need to go beyond and think of systems at various levels. Hopefully some organizations can set up plenty of agencies in multiple cities with pools of perfect trained care staff, and a care environment where respects caregivers and knows exactly how to support them. But the ideal situation need not daunt us; we should not assume that we can do nothing because the big picture of what needs to be done is too lofty, too unachievable. We can work on specific elements of the problem. Essentially, data distilled out of this forum points to problems which need answers; we can use our imagination and commitment to chip away at it using a multiple tools and aids.

Let us begin.

2 comments

  1. Been working on dementia care site « Swapna writes… says:

    […] concern, which I collated across meetings with caregivers, questions asked in support groups, even an e-group that I co-facilitated, in addition to a survey I conducted for getting more input (as mentioned in my last blog […]

    1. janaki says:

      well written article. As a caregiver, I am facing almost all the issues presented in here.

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