Saturday, June 7, 2014

In Sickness and in Health

In Sickness and in Health
  (and the importance of support groups)

I have become a caregiver, so they say.  When that day happened, I cannot tell you, as it has been insidious… somehow slowly worming its way into my life.

Four years ago, I became a member of an extraordinary group of caregivers from the Well Spouse® Association, WSA.  I joined the WSA as I felt I had nowhere to turn and I needed to be around those that were experiencing similar issues… the issues I just didn’t feel comfortable sharing with family or friends. Why four years ago? My husband had received the news of his second medical diagnosis of Stage IV lymphoma. His first diagnosis of Parkinson’s disease was just a mere three years earlier. Why would I want to be so immersed with this group of people? They are an amazing group of caring, loving individuals. They offer no judgments and if people want to rant, it is accepted. They also “get it,” whereas many friends and family may not… or just don’t want to. These caregivers have been through the trenches… they understand. Caregiver groups are very supportive of each other; they are our cheerleaders, our therapists, our friends, or friends when we need them.

When looking at my life, overall, as many of the other caregivers do, I sometimes have wondered if I really am a caregiver. I am learning (I jokingly call it the ‘caregiver light’ phase) as my spouse is still working and fairly self-sufficient. Even if some of us feel our lives at home are a challenge, we don’t seem to feel that we are having it as bad as other caregivers. There is this common thread: we downplay, feel guilty, and get embarrassed to even complain. We hear the stories of what many caregivers are dealing with and then say to ourselves, or to our fellow caregivers, “I can’t complain, look what they are going through! It is much worse than what I am dealing with!”  We also hear, “How can I complain about my life, when my spouse is so ill?”  Sound familiar?

Here are a few comments that I recently read from my fellow caregivers’ online support page:

  • ·          While these things that have happened were not part of our plan, I'm learning to dream new dreams.” Anonymous

  • ·         "Whenever you feel down, alone or unable to face a situation that you are in right now, let me tell you, that it’s totally fine. It is okay not to be okay all the time. It is okay to be on the ground, to cry and to hate everything. But it is only okay as long as you get back up again. Take your time to get all of your emotions out, but always keep in mind that the moment you’re in won’t last forever. Just don’t give up. Life isn’t about being strong all the time, but about the ability to become strong again after a defeat or bad experience. It’s about not losing hope in life and first and foremost – in yourself.” D.C.

  • ·         “I am finally enjoying our new normal because I take care of me and have accepted that things will be different. Exercise, lunch trips with friends, as well as meditation made the difference. Also learning that there will be days that we just don't know how to get through another day is part of being a caregiver and it will pass but reoccur.” Susan B.

  • ·         “Caregivers have the most difficult jobs. You can only hold up for so long and then something has to give! I know it's easier said than done but try to take make time for yourself, even if only for a short time, so you can be fresh to start again. Even during an airplane emergency you are instructed to put YOUR mask on first so you can help others to put on theirs.” Beth D.

Ironically, I have used that line, “Put your mask on first so you can help others put on theirs,” frequently in my speeches. In other words, we are not being selfish if we take time for ourselves, as it will help refresh us to handle those difficult times that we know will arrive.

What am I taking away from this caregiver experience? I am gaining the strength I know I will need or require in the future. It could be tomorrow, or five years from now but it will happen, and I know I will have the support when I move onto that next phase of my life.

If you want to learn more about Well Spouse® Association, please go to:

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