One of the biggest challenges for those facing an illness either on the patient side or the caregiver side are the feelings of isolation. It’s difficult when most of your contacts, friends and family, have had no or very little experience with illness. You look for a sympathetic ear and although they mean well you probably know the blank stares that come your way.
During the day it’s easy to create diversions because there is so much to do. It’s once the sun goes down and the world gets smaller that the sense of isolation increases. For the patient and caregiver, trying to support one another isn’t helpful because you’re both fighting the same demon. You try and remember what it was like prior to the illness and although your activities may not have been any different, like sitting in front the of the television, the implications of your new circumstance ring loud like bells in church steeples.
It’s important that you each set up some type of communication plan. Care groups form to help ease the experience by cooking meals, driving the patient to an appointment or by picking up the phone and making human contact. I know that sleep patterns are often not usual so what do you do when it’s the middle of the night, you look out your window and every light on your block is out. Remember that with technology there is always a part of the world that is awake. Illness and caregiving is a universal experience. There are both those who can’t sleep who you can communicate with online and those halfway around the world who are dealing with the day-to-day challenges of facing illness.
Don’t let isolation get the best of you. Come up with solutions to create a strong community and make sure that you utilize the resources that are provided to you (both of you). What do you do to tackle those sleepless nights? Let’s share so that we make the world less of a lonely place.
Too many organizations, books and nonprofit organizations focus on the person with the illness, but one person is seldom the only one impacted by the diagnosis. We assume that people in our lives are obliged to care for us during our times of need, but is it done willfully and without resentment? In most cases the answer is Yes. However, just like the person who is facing the illness has a road to recovery so does the caregiver.
Caregivers are a unique bunch because the research and my own experiences shows that overwhelming caregiving is done by women. The order in which caregiving occurs is the following: wife, mother or daughter, sister, sister-in-law. What happened to all the men? Of course this isn’t an absolute, there are plenty of men who care for the women in their lives, but overall women do it the majority of the time.
My hope is that caregivers find outlets to recharge their batteries. It’s like when you listen to the flight attendant giving the safety instructions…”put the oxygen mask on yourself first, then assist those around you who may need your help”. There is a reason for this sequence, it’s not about being selfish, but you’ll be better equipped to help others if you make sure you have the tools you need so you can keep on providing the necessary care to the person facing the life-altering diagnosis.
Think of it this way…If I give you a penny and ask you to give it away you’re left with nothing. If I give you two pennies and ask you to give one away you still have a penny-everyone wins. Caregiving has to included win-win situations. If not you’ll become depleted and you can’t squeeze blood out of a stone.
Many organizations provide support groups for the support person(s) of those facing an illness. Those organizations are forward thinking because it gives you, the caregiver, the opportunity to discover coping mechanisms that will keep your battery running. It will also give you an opportunity to experience a community of your own. Caregiving is often very lonely and breaking the silence gives you support.
How are you handling your caregiving situation? Share tips with us so that we can all benefit.
It came to my attention that I need to make caregiving articles a regular part of this dialogue. Look for the weekly caregiver entry on Fridays…a chance to start your weekend with a bang.