When we were children our parents looked after us and provided for us. However, with time as they grow older the roles reverse and it is our turn to look after them.  The daily tasks involved in caring for sick and elderly parents can be challenging but with proper organisation and support it is possible to ensure that their needs are met while maintaining their comfort and well-being. We spoke to a few families in this regard.  

Amali Wickremasinghe (Name Changed)

· In your opinion what are the most important factors to consider when caring for sick and elderly parents?

I think it is important to consider and respect the parents’ wishes as much as possible. Financial ability will also be an important aspect to consider. For us as a family, we were quite keen to keep our parents in their own home for as long as possible. This better allows us to control the care provided to them and also gives them familiar surroundings and stimulation through day-to-day tasks in a functional household.

· How do you cope with the stress physically and emotionally of handling sick and elderly parents?

I haven’t been personally affected physically by the problem of handling sick and elderly parents. The day-to-day cares are managed by carers. I can see it would be a physical strain and we try and use aids for transfer and moving wherever possible. Keeping oneself fit would be the best way to deal with the physical stress. Emotionally I try and disconnect myself and treat my mother as a patient (as I am from a medical career). It is heartbreaking to see a once vital and lively woman in the condition she is now. However, my only consolation is that she herself knows little about it.

· What are the challenges faced by families with such parents?

I think for many, the financial strain may be high. However, in our case, the difficulty is that all of us siblings live abroad. We don’t have close relatives here that we feel we can burden with our own parent’s care needs. Therefore, we rely on carers here to provide the day-to-day care. My sister kindly manages the carers remotely with the help of CCTV, WhatsApp, online banking, Keells online grocery shopping etc. I think this also works well as it is a single point of instruction. Without my sister’s heavy involvement, we would certainly struggle to maintain the level of care we provide my mum currently.

· Apart from actually being there physically for your parents isn’t there also ‘time’ and ‘energy’ demands such as making changes in your personal and professional life?

Again, my kind sister has made all these changes/ commitments on our behalf. She took a year out of her career to spend time with my parents during an important time in their lives. During that year, my father passed away from the COVID-19 virus and my mother broke a hip and also was debilitated with advanced dementia. I find it admirable that she puts her parents before her own family (although her children are both university-age) and made that commitment to coming over to be with them.

· What would you say about the financial strain of caring for them?

We are in a fortunate position of having access to foreign income so we are not particularly affected by this.

· Would you say that it disrupts the family dynamics?

Yes, it can do. As my sister is the most involved, she tends to have the final say. We take a more deferential approach. However, as she is the eldest daughter, this isn’t too much of a change to the normal family dynamics.

· What about things like negative attitudes, difficulty in communicating and loss of independence of the parents?

Luckily my dad never suffered with any of the above. However, my mum has certainly suffered from a loss of communication and independence. This means that decisions are now made on her behalf and hopefully in her best interests.

· What about at times handling the resistance of the parents to assistance?

I think you have to be careful how you word things and maybe try and gradually introduce changes, sometimes under a different guise.

· Finally what about ‘carer burnout’ and the toll it may have on you?

I think ‘carer burnout’ is a very definite problem, not just for family members but for employed carers as well. It is important to have regular contact with family outside the care environment and also to have breaks and time away from caring responsibilities. I find the main carer can get depressed.

Priyangi  Gunawardena    

In your opinion what are the most important factors to consider when caring for sick and elderly parents? 

The carer should be empathetic, tolerant, respectful, knowledgeable, mentally and physically fit, have a willingness to help, and be mature and kind.

How do you cope with the stress physically and emotionally of handling sick and elderly parents? 

You need to be able to have your own space to do your activities amidst the caring part. The carer should engage in more holistic activities such as walking, art, music, visiting friends, reading, concerts etc. 

Also to have a mindset to believe that it is such a meritorious act and also it is an opportunity to be able to do that. 

What are the challenges faced by families with such parents? 

The carer has to be fit, willing and mindful  The financial constraints as such services are too expensive.
Poor quality of Attendants in Sri Lanka 
No commitment, not trained and no passion for the job 
Also not regulated and no honest agents 
The facilities per se, a flexible bed, air mattress, wheelchair, etc are too expensive. 
In order to adhere to the dos and don’ts the carer should be knowledgeable about the illnesses of the sickly or the condition of the elderly. 
The sickly and elderly are treated as people who are about to die. Hence no proper help or subsidies from the government. 
Poor quality and attitude of medical doctors who visit homes. 
The elderly and the sick are not prepared or do not accept the predicament they are in. Hence they do not accept help and care. 
That becomes a huge challenge. 

Apart from actually being there physically for your parents isn’t there also ‘time’ and  ‘energy’ demands such as making changes in your personal and professional life? 

Yes, for sure. At times you may have to give up your job too. 
As nursing care is not dependable and up to standard, you cannot leave the elderly alone with them. Also the attached costs to this aspect. In Sri Lanka, there are not very many decent retirement villages available. Also, there is a stigma about shifting to a home. All these things add pressure on the family members. If the retirement homes are decent and cost-effective it will be much more easier. 
 

What would you say about the financial strain of caring for them? 

It is huge. 
The very basic stuff like nourishing food, medicines, lab tests, bed linen, pampers and under layers, gloves, air mattresses, doctor charges for home visits, Attendant fees, and hospitalisation, are a few items to be listed. However, the list can be very long depending on the patient. 
 

Would you say that it disrupts the family dynamics? 

Yes. If you have a young family with young kids then the carer has to juggle between many things. Even space can be an issue as it will be the patient and the attendant who needs to occupy one room. 
Also, family outings can be restricted. At times depending on the condition of the patient the mood and the vibe in the household can be low.
Basically, it has a spiral effect as the carer can be very tired emotionally and physically. Then it affects the mood of the family too. Also, there is no end date.
 

What about things like negative attitudes, difficulty in communicating and loss of independence of the parents?

This can be an issue, as then they will not cooperate. They will be very unhappy. More of a blame game than anything else. I feel if they have a hobby, a set of good friends, a pleasant neighbourhood, and a routine the acceptance will be much better as then they don’t have to depend on the carer for happiness. If they are happy they will not feel they are losing their independence. Even if it is difficult you must encourage the elderly to perform simple tasks in the household. 

What about at times handling the resistance of the parents to assistance? 

This is tough. You are in a dilemma. It is a common problem, especially in Sri Lanka the elderly are not prepared for their old age. No hobbies, no reading habits, not spiritual etc. Hence the attitude towards assistance will be not readily accepted. Also, the ego and self-respect play a role here. 

Finally what about ‘carer burnout’ and the toll it may have on you? 

Yes, no doubt. Exhausted, at times extremely low moods, the body needs a good massage, want to run away to a retreat or meet a few like-minded people. Space. Space and more space is a must. Otherwise, you tend to lose your temper, become frustrated and be annoyed with the people around you. No timeline and monotony can be extremely overwhelming thoughts.

Tina Edward Gunawardhana

In your opinion what are the most important factors to consider when caring for sick and elderly parents?

Their comfort and well-being in addition to getting proper advice and care. And also keep interfering with extended family at bay.

How do you cope with the stress physically and emotionally of handling sick and elderly parents?

I live abroad and am an only child therefore caring for a surviving parent is tough. I'm fraught with worry as I often wonder what would happen if my dad were to fall seriously ill. That said a few years ago I helped care for my dear mother-in-law from the time of her diagnosis to her death. It was an emotional roller coaster because at the same time my mother who was in the UK, was diagnosed with cancer. Circumstances were such that initially I could not be with my mum only my mother-in-law.  As the eldest-in-law, I felt the weight was on me because the two of us were very close, and I had this need to do everything for her. Her nieces and nephews were an incredible support too.

What are the challenges faced by families with such parents?
Not being able to take a hands-on approach and having to rely on others. I'm blessed to have a coterie of helpers and cousins who love my dad and will do anything for him.

Apart from actually being there physically for your parents isn’t there also ‘time’ and  ‘energy’ demands such as making changes in your personal and professional life?
Yes, there is but I was unable to do much for my mother when she was ridden with cancer and in the UK while I was in Sri Lanka so I feel that I need to put my dad first now.

What would you say about the financial strain of caring for them?
The cost of medications and medical care is frightening. My dad is not a demanding person. His resilient nature and genes have ensured he's quite ok but he has been admitted to a semi-government hospital in the past and he was happy with the care and relatively low cost.

Would you say that it disrupts the family dynamics?
It could do if you were to rely on your spouse to help finance your own parents' care but I'm blessed as my husband will always help out with my dad just as I helped out with his mum when she was ailing.

What about things like negative attitudes, difficulty in communicating and loss of independence of the parents? What about at times handling the resistance of the parents to assistance?
I face this with my dad who is fiercely independent and does not like being guided. However, I've learnt to be diplomatic with him and explain things clearly and he then understands and accepts.

Finally what about ‘carer burnout’ and the toll it may have on you?
I also looked after my maternal grandma for 6 months in 2022. I felt I had to step in and help as my mother had died and it was my duty. It was a completely new experience for me. I didn't experience burnout as such but at times emotionally it was tough. 

By Kshalini Nonis