Coping with disrupted Raya plans

IT’S Hari Raya and you’re in the mood of celebrating. You want to make this Raya a memorable one for yourself and your ailing loved one in your care. However despite your best-laid plans, it somehow doesn’t turn out the way you’d like it to. There are so many things on your to-do list running up to the big day. You’ve prepared everything in advance. All you need is to have your loved one step into the special day you’ve painstakingly planned ― perhaps going to the mosque for prayers, to the cemetery before that and visiting relatives at their open houses later in the day.

Maybe you’ve also planned to host at home because your loved one isn’t well enough to venture out of the house. So you’ve invited relatives and closest friends over.

These plans may sound quite straightforward since you’ve done this for years. All of a sudden, this year turns out differently because your loved one has somehow changed.

An elderly loved one may be less cognitive and more forgetful now as compared to last year. Maybe your ailing significant other places his or her comfort ahead of others, so you may have to adjust to his/her level of comfort much to the discomfort of your visitors. When you are unwell and in pain, it’s really so much harder to think of others.

As a caregiver, try not to feel guilty over things you can’t control. Indeed you’re irritated and frustrated that things do not go according to your well-laid plans. You can’t help it. You can only do so much. But not everyone understands it.

I’ve found that through my years as a caregiver, only a fellow caregiver can understand your situation. Those who have not walked this path cannot fathom the depth of the situation you’re in. They tend to react based on logic of action and reaction. They simply cannot see why you’re struggling. They may even venture to dish out advice to you that sounds sensible but totally impractical.

They forget that when the heart and feelings are involved, the lines get inevitably blurred; there’s so much grey area that sometimes you dare not even give voice to your frustrations. It seems so disloyal to do so. Most times, you just have to shrug it off, not internalise such moments and move on.

WHEN YOUR LOVED ONE TURNS DIFFICULT

During the festive season when you have such gatherings, the focus would naturally fall on your ailing loved one. People who have not seen him or her in a while would be excited to catch up during the reunion. They may ask your loved one questions that you’d end up replying. You have become his or her voice. It comes naturally because these are straightforward questions that your loved one would struggle to reply.

I see this happening with my friend Joe (not his real name) and his mother who’s now going further into dementia. Fortunately, she’s not affected when this happens. She’d smile sweetly and nod her head in agreement, quite relieved that she doesn’t have to think too much about these things.

“That’s the least of my problems,” says Joe. “These days it’s harder to get her ready to go out. She would only be partially ready. For example, she would be dressed up and then suddenly, she needs to use the toilet.” He goes on to tell me that her clothes would get soiled, leading to her needing a fresh change of clothes. This, he says, is difficult for her because she simply can’t decide. “I can’t just choose one for her because whatever I suggest will not be good enough. In between all that, she’d need to use the bathroom again!” he recounts exasperatedly.

Adds Joe: “By the time she is finally dressed and ready to go out, a few hours would’ve passed by and visitation time would be over. Sometimes the whole day is caught in that loop of her trying to get ready but failing. She gets distracted and can’t be coaxed to complete what she’s supposed to do.”

Talk about deflated plans and expectations! These are some of the things that have become a new normal amongst some caregivers. You just have to be flexible and adaptable, and most importantly — have a sense of humour, albeit a warped one!

I think caregivers should simply learn to relax and enjoy the festivities too. This isn’t easy to do because most experience burnout and depression when they feel overwhelmed.

When your loved one refuses to cooperate, it throws a spanner in the works. But what can you do? You’ll just have to understand the fact that you’re not responsible for their moods. Sometimes they just won’t be able to recognise or understand what’s going on. If they decide to be in a negative mood, you can’t change their minds to behave otherwise.

Sometimes we try too hard. Maybe it’s time we learn to give ourselves permission to do less. We just need to be more realistic and stop feeling guilty over things we can’t control.

Have a blessed Aidil Fitri.