Caregivers discuss top-of-the-mind issues

Caregivers Link conducted an online e-group discussion with a small group of caregivers in the week of September 12-19, 2011.

This was the second online discussion we conducted. In the first, the participants shared their experiences on care attendants and shared a wish list for what they required of their home care staff.  (Read ‘Experiences across divergent caregiving situations‘)

For this discussion participants emailed the group and responded to emails from each other through the group email, as and when they could or wished to, through the week. This flexibility was a conscious format decision to allow participants the freedom they needed to engage or not as per their commitments and comfort levels. The quantum of engagement varied; some participants, but not all, continued the interaction through till the end of the discussion period. It was felt that such discussions are required more often and regularly, in the future.

We focused on the subjects the participants wanted to talk about, so prior to the discussion we asked them to choose topics of their interest. They chose:
•    Caregiver agencies
•    Dealing with relatives and friends
•    Products and pricing of things required by care receivers and caregivers, including a range of things such as oxygen, adult diapers and similar products and accessories. The availability of innovative gadgets that can help make life a little easier for the care receiver.
•    The issue of caring for the caregiver, the problem of tiredness that a caregiver faces.
•    Doctors and nurses/medical assistants who can do home visits.

The participants were all caregivers with recent or long term care giving experience across diverse circumstances. They included among others:-

Janaki: Caregiver to her 16-year old son, Hari, who has multiple disabilities.
Neera (name changed on request): Caregiver to her husband when he was taken ill suddenly over a year ago.
Kalpana: Caregiver to her mother who has dementia.

Shikha Aleya of the Caregivers Link team facilitated the discussion. Devashri Mukherjee of the Caregivers Link team and Nilanjana Mukherjee, volunteer to Caregivers Link, were observers.

Janaki described her care giving experience as `a hassle, a hardship’ but, also, equally one of `inner growing’; she also defined the scope of the discussion in the following words:
“Intense and unified thoughts produce powerful actions, maybe our discussion would emerge into actions plans that will make significant impact in the lives of both ours and our loved ones”

A report like this is unable to communicate the spirit of sharing and understanding that grew between the participants, or explain the verbalized as well as unspoken connects and feelings that emerged through the week between all. Group discussions such as these are, by the very nature of the subject and experiences being discussed, personal spaces of sharing. The participants with their honesty, the courage with which they spoke of things that are hard to address at many levels, made it possible to bring together the thoughts and issues that are written about in a summarized form ahead.

Care Attendant Experiences:

a)    Caste and conservatism were mentioned as deterrents for keeping live-in help particularly in cases of old parents and parents-in-law being assisted by them, especially for intimate care.

Reason, ploy, and firm decisiveness were used to deal with such situations.

b)    Kalpana said her previous care experience had made her realize that hiring the services of a caregiver was a non-negotiable for her own health so even though expensive and not initially acceptable to her care-receiving parent, she decided to invest in it.

c)    She had an attendant from a well known home care staff provider. They had also asked for an advance payment but she had refused to pay until the person arrived. The attendant sent was extremely unsuitable and she had to ultimately ask her to leave.

Kalpana warned against agencies that ask for an advance and do not ultimately send the attendant.

d)    Even among caregivers, it was a challenge finding care attendants for persons with mental illness. Participants had had good and bad experiences with attendants and nurses, but it was clear this was an area that required attention.

During the discussion, an agency in Chennai was mentioned that supplied care attendants, one had to register with them and pay a month’s pay as commission, they did not necessarily do background or criminal checks and the care attendants supplied left soon after. The agency did not take any responsibility for them. In the discussion it also came up that Red Cross Kottayam supply attendants to Tamil Nadu and Kerala. Bangalore Red Cross doesn’t have attendants for Dementia patients and charges approximately Rs. 12000 per month.

Suggestions:

a)    To hire regular domestic staff and train them since the care attendants were also semi-skilled anyway, but more expensive.
b)    Set up employment agencies at different nodal points, to train and supply   care attendants for special care giving. For those families who cannot afford them, find sponsors or ways of subsidizing costs. The initiative should also include a redress system so complaints from both sides can be addressed.

Family Attitudes, Participation and a Caregiver’s Role in the larger family:

A variety of experiences were shared and this appears to be an area of critical impact on caregivers, care-receivers and the entire experience of care giving:

a)    Close relatives who lived away so did not have primary care responsibilities but kept up a stream of advice.
b)    Relatives who lived away so did not have primary care responsibilities but also did not judge the quality or method of care – this was described as a positive.
c)    Conservative parents-in-law resistant to live-in help for the care of their grandchild till they realized the absolute need for it
d)    Family did not help, later admitted they did not how to help.
e)    Presence of a parent-in-law/parent often means further interference and adds to the burden of the caregiver.
f)    A caregiver said that when her parents-in –law offered to come and help she refused because she foresaw it being an added responsibility rather than a support.
g)    Unsolicited suggestions from family on a variety of subjects: diet, going to temples/pilgrimages for cure. Janaki made the point that often in the case of a caregiver looking after a child with disabilities some people tend to think that the mother is spending too much money and attention on the child when it would be enough to spend on basic minimal care. Also, there are attitudes and advice such as that the child should be left in the care of attendants and the mother should use her professional skills to find work and live her life.

Strategies Shared:
Janaki realized that in future her child may need the support of her family members so she adopted a strategy of advocacy within her family.

Initially, she refrained from sharing with or involving family members, but at one point of time, realized that family was one potential resource to seek help or support from. She used every possible opportunity to mingle with family members on different occasions. When the younger ones (son’s cousins) in the family began to relate with her son with greater acceptance, the older ones (their parents’) attitudes changed for the better.
Janaki also shared an anecdote of an inclusive class she taught in the US. A little girl reacted to her autistic classmate grinding his teeth. Janaki explained to her how people were different and he was too, and had a different way of communicating. She also asked the little girl if she would help her classmate, much like she, the teacher, helped her to learn big words. In the next few days she saw the little girl changed in her attitude and helpful to her classmate.

Suggestions:

Since extended family relationships and friends’ network are two strong sources of social support, the caregiver has to take on the responsibility to involve them in every possible way and patiently work on attitudes. If the caregiver has a ward who may need family support and care in the future, this responsibility becomes more acute. (An example of a friend in the US was cited, who spent every first Saturday baby-sitting her brother’s child Michael who had a neuro-muscular disorder, so that his mother could have a day out. Every first Saturday was Michael’s Day.) Similar support from relatives was on the wish list.

Products and Pricing of Products Used by Caregivers and Care receivers

A lot of the products used – adult diapers, for example – were very expensive and had to be used judiciously. It was pointed out that cotton is classified under cosmetic item and therefore diapers were expensive.

Suggestions:

•    Create an inventory – perhaps a resource webpage – of all kinds of products and accessories, assistive technology and healthcare accessories available, their functions, availability and prices.

•    Find out about companies products are imported from, and explore if low-cost Indian versions are available.

•    Create franchise of products imported or create the possibility of low-cost production in India. Explore the advantages of government schemes for establishing production or distribution units for such products

Caring for the Caregiver

The problems caregivers faced were reinforced in the discussion.

The key points raised:
a)    Loss of control of one’s life: unreasonable caring hours and responsibilities, unprecedented tasks, loss of social and professional life, additional emotional burden to bear. (For example, in the initial infancy and childhood years, Janaki stayed up nights because she had to carry her child and walk up and down to help him sleep.
b)    Lack of physical space in a home where there was a care receiver to look after, and perhaps care attendants; it seems that as a consequence  there was also the lack of emotional space for any emotional downtime.
c)    Examples were cited of caregivers who had developed physical illnesses, depression, even tendencies towards substance and alcohol abuse, especially among parents of special children
d)    Growing impatience as a caregiver. Kalpana mentioned her initial irritability with her mother who would repeat her questions back at her – till she realized that her being irritated disturbed her mother further so she worked on remaining calm and on developing self-time strategies and occupations.
e)    Examples were mentioned of parents of special children who wished to interact with their children but could not deal with the emotional upheaval and sought reprieve in work. They were also the most likely to suffer from immense guilt later.

Strategies adopted by Caregivers:

•    Not compromising on hiring help, delegating responsibilities whenever                                        possible with the minimum engagement required to ensure that tasks are carried out smoothly.

•    Pursuing one’s own goals, interests, hobbies and integrating it with the care giving role. Kalpana is an avid bird-watcher and makes time for her bird-watching trips and interactions with a circle of bird enthusiasts both online and offline.

•    Renting a bigger place so the caregiver could have the space to switch off from her care giving role and spend time on her own.

•    Keeping humour alive in the care giving relationship – finding humour as a caregiver and helping the care receiver laugh. Kalpana laughs at some of the incidents she recalls, though never to belittle her mother or the relationship they have. She says `it keeps her sane’.  She shared a story of how her mother, who has the habit of hiding things in her pillow, went out for her walk one day with a visible little lump of something hidden in her clothing – she had hidden a little toy frog at her chest and taken it along for the walk, but the frog fell out and Kalpana’s sense of humour had her in splits over this.

Kalpana also said how a little time spent with her mother singing made her mother happier than spending far more time on accomplishing a task such as giving her a bath. Spending time singing, playing board games with the care receiver or doing shared activities that brought joy to all involved because the quality of the engagement is the important factor.

•    Another insight Janaki brought to the table was that the Caregiver wasn’t the only role a person played and caregivers do need to hold on to this realisation – as much as possible it is important to play the other family and social roles, as this could be a good way of involving others and building social networks to draw strength from.

Medical Information and Doctors Who Could Do Home Visits

Three of the participants quoted doctors’ negligence as the cause for disability, physical illness/deterioration.

Taking patients with physical difficulties or profound mental handicaps to doctors was quoted as a serious problem, causing great stress to care receiver and carer.

There was also a discussion on how much the doctors know or share and how limited information often leads to unnecessary, expensive procedures; finding good doctors who will share information with patients and also help the caregiver understand how to bring about lifestyle changes to benefit the care receiver is a challenge.

Suggestions:

•    It was critical to have the right information at the correct time. Second opinions should be sought for diagnoses, especially those that lead to expensive surgeries. Doctors’ opinions should not be followed blindly – internet research was found to be a convenient way of seeking further medical information.
•    Neera explained that the Income Tax Act allows for deductions for medical expenses incurred for certain serious illnesses like AIDS and others. Since provisions of the Income Tax Act change with the budget every year, this list and the conditions for such allowances need to be looked into every year to ensure that one is properly availing the benefits given under the Act.
•    It was suggested that nurses, if not doctors, visit the patient home for periodic check-ups. Doctors’ visits can be restricted to times of greater need.
•    Caregivers were advised to undertake trainings in emergency and first aid care.

Critical Other Issues Raised:

Sexuality of young people with disabilities, a taboo subject requiring clear focused attention. A small group discussion could be carried out later on the subject with an expert facilitator.

Finances and financial burden are a huge challenge – and while this point was not tackled adequately in the discussion, it is an area of critical importance with multiple points of concern. This includes insecurity around being able to maintain and sustain a certain quality of care giving, impacting the quality of life of care-receiver, caregiver and all in the family.

Neera mentioned that the Income Tax Act has provisions that allow for deductions for treatment expenses for certain serious diseases – this information requires wider dissemination.

Information on medical systems, diagnoses, procedures and treatments need to be simplified and made accessible.

Perhaps because of the small size of the group all participants introspected with a great deal of honesty and good judgment. It was an intimate and enriching conversation, and participants looked forward to more.  We hope to continue the conversations and widen them both in the scope of content and participation. Please write in to caregiverslink@gmail.com with feedback, responses and suggestions.

(Devashri Mukherjee – Caregivers Link)