Interview with 2 long-term primary caregivers
I want to start off this ‘Everyday Inspirations’ series with 2 people who are very close to my heart- my aunties, Anna and Li Choo. They took care of my grandparents for a total of 12 years, when they themselves were in their 60s. Their decision to be the main caregivers to their parents meant the rest of their siblings did not have to uproot their lives and scramble to make care arrangements. Many of us know of caregivers or are caregivers ourselves- I hope that that this story will provide insights into the challenges and joys faced by them and give you some ideas on how to better support your loved one/ yourself!
Note: for ease of reading, red= Li Choo, blue= Anna
Q1) How many years did you take care of your mother and father?
Our mother was 10 years. Our father was one and a half years.
Q2) Tell me about their medical conditions
Our father had a stroke, end-stage kidney failure (on peritoneal dialysis) and diabetes. For our mother- high blood pressure, diabetes since she was 40 years old, vascular dementia, ischaemic heart disease, a fall that left her with a tracheostomy followed by a heart attack, then 2 more falls- fracturing her ribs and pelvis.
Q3) Describe a typical day caring for them
We used to have to get Papa up very early in the morning- 5 something- for dialysis before we went to work. And if he was very tired he would say ‘5 more minutes please’ and we would let him sleep for 10. After that he would get up, no complaints. We would go and work. Our brother would take the morning shift and do the second dialysis. At 3pm, we would come back and do the third dialysis. Then we would cook 2 meals (dinner, and lunch for the next day) before doing the last dialysis at around 10pm. In the later stages, we had to do dialysis 5 times a day because his urea was very high. In between we would settle medication counting and send him for red cell injections 1-2 times per week.
He was [traditional] so he didn’t want females to have to bathe him. Most of the time, it was our brother bathing. But then when my brother wasn’t there, Anna would bathe him.
For our mother, every 2-3 months we had to bring her to the hospital. It was very stressful. We would leave by 7am (so that she could have her blood test first thing in the morning) and come back at 12 noon. She would be very hungry from fasting (to draw blood) and we had to settle her food along the way. 4 people went- while some of us were settling the medications, the rest would keep her entertained.
The worst was when we had to bring her to the hospital in Malacca. I had to drive down to Malacca every day for two weeks! We would take shifts. Some would stay there, while we took the laundry back to wash and hang up. By the time we drove back it would be night. The next morning, we would go to work. Then, after work, drive down again.
Bathing her was ok because by that time, we were retired, so we had more time. But her legs were weak and we were afraid she would have another fall.
Q4) What were some of the daily challenges? How did you cope with them?
At first, our daddy had difficulty accepting his condition. He would see the many stacked boxes [of his medications] and ask ‘why do I have to use so much of these things?’ But my younger sister told him it was the same thing as needing many boxes of milk powder to keep his grandchildren alive. After that, he accepted it.
By the time we were caring for our mother, we were already over 60 years old, so it was tiring to keep having interrupted sleep.
Our mother was always in pain. I would tell her I was going to have a shower and she would say ‘pain, please don’t leave me alone’ (in Teochew). I explained to her that Anna was cooking and that I needed to bathe, so could she please sit and do her prayers for awhile? She told me she had forgotten her prayers! And I said, ‘just do what you can remember and when I come out, we can do the rest properly’. But of course, every time, before she got very far, she would doze off! (They both laugh)
"Now that we are older, we understand that she just wanted some attention. Because otherwise, all she had were the four walls in her room."
There were times when we were stressed and I would lose my temper. My voice would rise and Li Choo would say Anna Sim. Sometimes, you just need someone to remind you (to remain patient).
We also had a maid in the last year of my mother’s life. At first, we didn’t want a maid, because you had to train them and worry about someone new in your house. But our siblings convinced us. They told us ‘you can’t continue like this- you will collapse’. So we got one. But mummy didn’t trust her! It took a month before she got used to her and allowed her to assist in anything.
Q5) What was the lowest point in caring for them? How did you get past it?
Oh! Putting her tracheostomy in- I cried! I could see my mother struggling so much and I thought to myself- how can I do this? If I am a little bit late, she might die. Luckily, she got better and no longer needed it. What a relief- that was really the most stressful time, when I had to learn how to do that.
Q6) What were some of the most rewarding parts about caring for them?
They were always appreciative of what we did for them. Every time we did dialysis for him, our daddy would say ‘thank you’. It really made all the hard work worth it.
And there were moments! One week before my father passed away, he was watching Pride and Prejudice, one of his favourite shows. And he was laughing at the old couple on the show, bickering. I could see his eyes twinkling! He was very lucid, till the very end.
Q7) Did you ever feel resentment about being the primary caregivers?
There was only one time. Our brother took a holiday with his family and when they came back they didn’t immediately come and see mummy. We were very stressed out about other things at the time, so we couldn’t understand how they could wait to see her. That was the only time we felt resentment. But we accepted it. After all, he has his own family to take care of, that’s just the way it is.
Q8) Did you ever discuss with your parents where they wanted to die?
Our father was very good, he had foresight. He told us from the beginning he wanted to die at home and be cremated and housed at the temple so it would be easier for us to visit. And when we asked our mother, she said ‘just follow your daddy lah!’
It’s very important. You have to discuss to find out what they want. It’s very difficult for the children if the old people say ‘don’t talk about death!’ They have to be realistic. Death is death. Nobody can run from it. You should write out your wishes.
Q9) After your mother and father passed away, what was the transition like?
It was quite easy because our siblings made us feel welcome. They told us to come over to see them and took us on trips.
Also, our father had settled a lot of things before he passed away- money, shares, land. It would have been very difficult for us to settle that on our own. And all the siblings had an understanding that everything would be shared equally.
"Sometimes, we miss them but we think to ourselves- they were in so much pain and suffering, would we rather they had stayed?"
No one wants their loved ones to suffer. It is harder if they go suddenly, but if they were sick and you took care of them for years, then you would know they were suffering and it is easier to accept. Religion helps too- whatever you believe in, whether they are reborn or go to heaven or what.
Q10) Do you have any regrets?
When our mother was bedridden, it was the last few days of her life- maybe we could have spent more time with her. By that time, we were very tired, but we should have let the maid take on more house duties and focused on talking to her and keeping her company.
Some people are working and feel like they cannot give enough attention to their parents, but it cannot be helped. You know if you are sincere. If you have tried your best, then that’s it. No one is to blame- you have to accept it.
Q11) What advice would you give to caregivers who are struggling?
The first thing is your attitude. Don’t take it as ‘why me, why me?’ See the positive side. It is an opportunity to learn to be more compassionate and generous, to practice patience, and to give back to your parents. If you think about it, our parents gave so many years bringing us up. To take care of them- it is only right.
Next, get support. Respite- it is very important. Not just for a few hours, but you need to really get away for a time, to recharge. For us, our younger sister would take us away on breaks while someone else took over. Nowadays, we hear that you can place your parents in a nursing home for a few days for respite care. Whatever it is, you need to find some way to get help.
Finally, finance. We were really fortunate- our siblings and their spouses were never calculative. Whoever saw the hospital bill first, tried to pay it. But if you don’t have this, then you must find some other means of help. A lot of worry comes from this, so if you can take that off your mind, then you will feel less stressed.
Thank you very much for sharing your story with us!