HARI RAYA is just around the corner. This usually means a migration of people to balik kampung. For some, it may also mean bringing an elderly loved one to live with you, whether for the holiday season or for long-term home care.
There will be many issues you’d like to consider and plan for. Many years ago, my late parents had to make certain decisions when their illness got the better of them. The first thing they both decided was to move into the room on the ground floor. They both found going up and down the stairs a few times a day too taxing.
So their move downstairs happened in two stages. The first time was to just physically move from upstairs to downstairs without any changes made to the room. They just moved from their room to the guest room. Mum and dad weren’t too excited about this as it felt like it wasn’t their room. It made them feel like guests in their own home.
That was when my siblings and I got together to discuss what really needed to be done for their comfort, safety and convenience. We needed their room to also be “handicap-friendly”, especially the bathroom, where there’d be metal bars in the shower section and next to the toilet. The floor should be non-slip, there should be enough light during the day and constant lighting at night.
The bedroom needed to be bright and airy, and the bed at just the right height. We had to have ample space for ease of wheelchair movement in the room and bathroom. That meant renovations.
So while the renovations took place, my parents moved in with me. To make sure that they didn’t miss home too much, my family and I decided to give them a holiday feel to it, yet homey enough for them to be comfortable.
One of the ways that helped in the planning for their living space was to learn about their illness and limitations. I was my parents’ coordinating caregiver in that I went to all their doctors’ appointments and treatments. So I was aware of their conditions, prognosis and how their illnesses would typically progress. These weren’t just conclusions I made up on my own. I always asked questions, and their doctors and I always had candid discussions.
I know many of us think that sometimes we don’t want to “read into it” and plan too far ahead because we can’t bear the thought of it. We feel that we could jinx our loved ones and ourselves into bad luck by just thinking about it. Sometimes we feel that if we thought about it that it might just come true.
We must stop that line of thinking. Diseases are realities, not wishes. Certain diseases are known to progress in a predictable way. That predictability could be used to help you plan for what lies ahead. This foresight will help prevent you from being overwhelmed and flustered. Making contingency plans help you manage stress too.
Feeling like you’ve lost control or lack control usually comes from being ill prepared and not knowing what to expect. So ask your loved one’s doctors to be frank about it, read about it online and ask others who’ve been there.
Thinking of the end of a loved one’s life can be too much to bear. We aren’t just scared of it but we also fear the loss of our loved one and the vacuum that would be left in their absence. That’s why it’s best to make the most of the moments you have together. Make new and happy memories to last. Takes lots of photos and videos. Quickly jot down those quirky moments and phrases.
As with any change in the dynamics of the home, you need to think some things through. To maintain harmony in the house, you should also consider privacy — theirs and yours.
This would be especially challenging in small living spaces or if your elderly loved ones suffer from dementia like Alzheimer’s. Disinhibition (loss of social appropriateness), which can be a part of Alzheimer’s disease, can cause him or her to barge into bedrooms and bathrooms without meaning to. With dementia, there would be many other considerations to be made and you’d truly need to go through them with your doctors.
Mental privacy is another thing to keep in mind. While it’s important that you welcome your elderly loved ones into your home, you’d also want to balance your family life. It would be a delicate balance because you wouldn’t want to risk alienating any of your loved ones, who might miss old routines or feel ignored and neglected.
All said, I would always be grateful for the time my parents moved in with me, even if it were just for a few weeks. It was one of the most cherished times of our lives.
Hari Raya is one such time to forge stronger ties between family members.
I wish you joy, love and blessings. Selamat Hari Raya!
Putri Juneita Johari volunteers for the Special Children Society of Ampang. You can reach her at juneitajohari@yahoo.com