IT’S still the festive season and we want to go out and celebrate. We want to be with family and friends as we visit their open houses and family gatherings. These are things we’d do with our loved ones without a second thought if all were well. However, when someone in the family is suffering from illness that limits mobility, whether it’s a physical or mental disability, caregivers can feel a little blue for missing out.
Some people with dementia or Alzheimer’s disease see and do things in ways different from how we do them. In fact, in many instances, they even seem to be different people. They look the same, but they talk and act like a different person. Worse still, they may not even remember you no matter how close you were in the past.
This can be rather bewildering. If it’s your first encounter with a relative who used to be so dear to you, it can even hurt. Don’t take it personally. It’s not about you. That person has lost an essential part of her that you remember, and the caregiver is also having a challenging time dealing with it. It’s not as though she’s doing it on purpose. Have some consideration, and be understanding and kind with your words and gestures even though it can be really hard to do.
It’s also hard for the caregiver who’s often grappling with the situation and doing the best he can under the circumstances. Someone who’s no longer mobile due to illness may not show up at your do. Don’t be offended. You wouldn’t believe how much longer getting them ready to go out can take. There may be tantrums that entirely kill the mood, and visitation plans could be cancelled.
This can take the steam out of the caregiver especially when you’re so looking forward to it. Don’t give in to melancholia. Instead of re-living the way things were done in years past, create new traditions. Do things differently.
MAKING ADJUSTMENTS
Instead of going out, bring people to you if you’re up to it. You don’t have to prepare an elaborate party. You can organise a potluck or just something simple. After all, it’s not always about the food, right?
If you feel that you’d rather not host at home because it’s just too much effort but believe that food is the thing that brings people together, you can always meet at clubs or restaurants. Keep it small, short and simple. Otherwise, there are always video calls. This bridges the distance and can soothe the aching heart missing someone.
When you become a caregiver to someone who’s challenged in more ways than one, you’re the one who has to adjust your needs, wants and schedule. You’re the one to make the sacrifices.
Why? Because your ailing one becomes your priority, and you don’t want to traumatise them by taking them out of their comfort zone. Going to unfamiliar places and meeting people who have now become strangers in their minds can cause anxiety, stress and confusion. To avoid that, it’s best to stick to familiar places, sights and sounds.
You can try to get your loved one involved with the planning of the gathering. This is really more of a hit-and-miss exercise because they may not remember anything you’ve talked about when the time comes. Never mind. You can’t know how she’s going to react, so just live in the moment and watch her have fun planning with you and trying to go with the flow.
WHAT WORKS BEST
When you’re in such a situation, there are so many curve balls that will hit you all the same because you can’t always expect the unexpected. There’d be times when you fantasise about running away from it all. But then you look at her, you sigh, and stay.
This is a signal that you need a break from your loved one. You’re struggling to find that healthy balance of caring for your loved one and not entirely losing yourself doing it.
Much will depend on how well you’ve planned it all so that you don’t feel overwhelmed. The other bit to it is to slow down and not try to do too many things. Pick and choose what works best for you. Remember that you can’t please everyone so just work to what you can cope with.
Tell yourself you’re not in this alone. Communicate with others, especially those closest to you. Ask for help if you need it. If they can’t totally help you, maybe they can meet you halfway.
You know, the perfect holidays and family gatherings that you remember were probably not that perfect. So don’t aim to duplicate that memory. Do things that make you laugh, keep you happy and relieve stress.
Putri Juneita Johari volunteers for the Special Children Society of Ampang. She can be reached at juneitajohari@yahoo.com.