ContributorsMy mom was diagnosed with kidney failure in 2013 at age 60. Her kidneys failed due to poor diabetes management and the side effects of the diabetic medication. She couldn’t come to terms with it and refused the recommended treatment which was dialysis. Because of her stubbornness and denial, my mom ended up in and out of the hospital for most of that year. The longest she stayed in the hospital was almost three months. It took a near death experience before she accepted her condition and agreed to undergo dialysis.
Challenging times
The doctors prescribed diuretic pills which would help alleviate the fluid retention symptom my mom was already experiencing. We were informed that these pills would be a temporary option; it was imperative that my mom went for dialysis as soon as possible because her GFR (Glomerular Filtration Rate – the measure of kidney function) was under 20 percent. So, my mom began to swell rapidly due to fluid retention. Her mobility was greatly hampered because of it; her legs were so swollen they looked like tree trunks and she also had blisters on her legs. She was nauseous most of the time, lost her appetite, and had difficulty breathing due to the fluid build-up in her lungs. It was only when she could not breathe when she laid down to sleep that she agreed to be admitted to the hospital, where they would purge the fluid from her body quickly. Doctors would advise and coax her to undergo dialysis but to no avail as she always managed to get better. But she’d end up at the hospital again about a month after her last discharge.
It was stressful and frustrating for everyone during that time. My mom was constantly angry at everything and soon she became depressed too. I was angry at her for refusing treatment, I could not understand why she was against it; we quarrelled a lot over this. Her condition worsened and it came to a point where she could not be left alone at home. Thankfully, my job as an insurance agent allowed me to work remotely and I was able to tend to my mom. My siblings worked shifts so I became the primary caregiver. My mom became overly dependent on me because I was always there. She somewhat alienated my siblings and would rather not ask them for assistance whenever I wasn’t around. This created rifts between my siblings and I, and between my mom and my siblings. I had to constantly remind my mom that my siblings are her children too, she had to make them help her if/when I am not around. I also had to always include my siblings by regularly updating them about my mom’s condition.
My lack of work resulted in a significant reduction of our household income. My siblings had their own financial responsibilities but they contributed whatever they could. They also paid for my mom’s hospital bills with their Medisave, after mom’s and mine were exhausted. Our cash savings were also depleting. We had no choice but to seek financial assistance. So, I went to see my MP. The advisers there told me I could rent out one of the rooms in my five-room HDB flat to earn extra income and that’ll solve my financial issues. They then gave me NTUC vouchers and food rations which I was thankful for but I felt like a beggar. Never before in my entire life have I felt such hopelessness and I resented my mom for rejecting medical treatment.
Then, on December 31, 2013, my mom collapsed while she was in the hospital ward. She was rushed to the ICU where doctors revived her and subsequently did emergency dialysis to save her life. Thankfully, she pulled through and regained consciousness a few days later, but remained in the ICU for 20 days before she was transferred back to the normal ward. Her near-death experience was a blessing in disguise which led her changing her mind about dialysis.
New challenges
Even though my mom accepted to undergo dialysis, she wasn’t as cooperative as we expected her to be. Her anger towards everything returned as soon as she regained some of her strength and we were almost back to square one again. I couldn’t understand my mom’s resistance; I was so frustrated with her that I lost it and we both broke down. It was only after this incident that I found out why – she was scared, all this while since she was diagnosed. From then on, we had to constantly assure and reassure her that we were in this together as a family and that my siblings and I would always be there for her.
We had a medical social worker from the hospital who assisted us. She managed to put us on a temporary financial assistance scheme that came from a charitable organisation. The financial assistance would cover my mom’s dialysis expenses for six months, we had to co-pay an amount of $60 per dialysis session, and $1,000 from mom’s MediShield plan. This arrangement would help tide us through while we applied for medical financial assistance and a placement from NKF.
We resumed some measure of normalcy during this period – I went to work after sending my mom to dialysis and I’d pick her up after she was done. My siblings would take over this duty whenever they could. My mom’s health was better managed with dialysis and she was happy, which made it a lot easier for me to care for her. However, six months later, we still hadn’t gotten a placement from NKF. My mom grew frustrated with the lengthy NKF application process so she simply decided to stop dialysis and “hope for the best”. She was worried about the cost of dialysis and knew that without the financial assistance, we could not afford it. My mom went without dialysis for a couple weeks and ended up in the hospital again.
With the doctors’ recommendation and the initiative of our medical social worker, we were finally offered a placement and partial funding under NKF, four months after my mom’s discharge. (A special arrangement was made for her to be dialysed at the hospital while waiting for the placement. We paid for the cost of dialysis using one of my sibling’s Medisave, Medifund scheme, co-pay $50 cash per session, and $1,000 per month claimed from my mom’s MediShield).
Today, we pay $800 a month (cash), $1,000 (claimed from my mom’s MediShield Life) and the rest is funded by NKF. My mom is treated at a private dialysis centre near our home.
Looking back, it has been a crazy five years. I don’t know how but we got through the worst of it. My mom finally came to terms with her condition and she’s doing her best to manage it. At the very least, she has a decent quality of life now compared to what she went through in 2013. She’s made friends with the other patients at the dialysis centre and she’s happy to go to dialysis three times a week. She’s also a lot more independent now even though her eyesight is failing. My siblings and I encourage her to take charge over the things she can do and she will ask us for assistance if she cannot. I feel at ease in leaving her at home for a few hours or longer if I have to go out for work appointments. Our financial health has also improved.
These years caregiving my mom has taught me a lot. For one, caregivers really need to have patience, patience and more patience. Good communication between patient and caregiver, and with the rest of the family is also key. I assure you that there will be good days and I promise you that there will be not so good days too. My mom still has days where she’d be moody, not easy to please at all and I have no idea why. She would also sometimes throw tantrums for no apparent reason and I have learnt to just let her be. Sure, I admit that there’s been one too many times I’ve lost my patience with my mom, I’d feel so lousy afterwards and I know for a fact that my mom felt lousy too.
I don’t wish for that to happen anymore so I choose to be mindful and to not react when my mom throws her tantrums. Instead, I respond to her when she’s calmed down, have a chat with her to understand what triggered her tantrums and to also let her know how it affects me as well. Our relationship has improved tremendously despite it all and I am glad I’ve been given this responsibility, no, opportunity to care for my mom. It’s just a role reversal – my mom is like the baby and I am the adult now. Besides, we only have one mother. Persevere, be aware and take note of what works, it will get better. Whatever doesn’t work, let it go quickly, learn from it and move on. Be happy.
Ida Ahmad, 42, is an insurance agent and she is the primary caregiver for her mother.
PS: If you’re wondering why my mom doesn’t have health insurance when I am an insurance agent, she was no longer insurable when I started this job.
