Monday, July 27, 2009

Happy Birthday Amiee!

Today is Amiee's 23rd birthday. It's hard not to look back at the past two birthdays when reflecting on where she is today. She had the trach in the year before last for almost a year and a half. She hates walking around with it and who can blame her. She's so young and beautiful...this is the time in her life she should be hanging out at Bayside in Miami or South Beach with all her older brothers and sisters and cousins, not lying in the hospital for the start of the third month straight this time around. Last year she had the trach out for her birthday. That's really what she wanted most. Last year about this time we finally made that family trip to Orlando we had been planning and it gives us so many precious memories now. Priceless!! It was difficult for her to ride the rides because of the opening in her esophagus where the trach was, and on the water rides she loves so much, we had to bundle her up to keep her neck protected. We had a blast!!!

She had a big smile on her face all day today. It seems like it has been forever since we've seen a real smile. She wanted everyone there with her to play games. The nurses, who are her second family now, came in and sang happy birthday too, and brought her a cake. She really was a princess today! We hung out and played connect four and mancala and she won most of them. We didn't let her win either. We're way too competitive for that, under any circumstances, LOL!

Some days providing care and making life altering decisions can be overwhelming. We met with another couple last Friday who will be doing informational videos for Amiee's Place, and who also will donate a video memorial for young adults with life threatening illness. For more information, please email Video@AmieesPlace.com. He lost his son Set to osteosarcoma and complications when he was only 24. Because of this, we were able to talk about how the experience of caring for a dying child affects you. Only someone with this experience could ever understand. Overwhelming does not begin to describe the day to day emotions that caregivers can experience. Very often, they experience isolation from friends and family, strain on their relationships and the care they take of themselves.

It's very important to take whatever time you can out for yourselves. In my personal experience, a high school friend of my mom, also a Columbia Psychology Professor and recent PhD had a severe stroke last year after caring for one of her twin sons who has been battling cancer. She has to learn to read and write again still today. Others suffer from alcohol and drug abuse, over or under eating, fatigue, weight loss or gain, or depression. Be aware of these signs and know where to turn for help, if you need it.

SYMPTOMS OF CAREGIVER FATIGUE THAT MAY INDICATE THE NEED FOR OUTSIDE SUPPORT

  • Feeling isolated or isolating yourself from friends and family
  • Strained relationships
  • Lack of a close support system.
  • Financial hardship
  • Insomnia
  • Depression
  • Drug / alcohol abuse
  • Over / under eating
  • Notable weight loss / gain
  • Extreme feelings of hopelessness

Experiencing a broad range of emotions from time to time can be expected. In far more extreme ways, there are good days and bad days. As someone recently shared with us, things will get better and be different than you can imagine as you go through an experience such as these. Taking care of yourself in body, mind and spirit should be made a priority.

  • Eat meals as regularly as possible
  • Focus on a healthy, balanced diet to sustain energy and support your immune system
  • Rest when you need to
  • Take naps
  • Use relaxation and meditation breathing techniques (sit or lie down, close your eyes, breathe in and visualize all good things entering your body from your scalp down through your lungs and limbs and toes; then breathe out and say to yourself 'all bad things out' and let them go with your breath. Allow yourself to let go and be cleansed. Keep breathing and repeating.)
  • Take walks outside
  • Join an online support community
  • Read for fun
  • Put exercise on your calendar a few times a week
  • Accept help from friends and family
  • Seek help through local support networks (If you need assistance with a referral to a local support service email Support@AmieesPlace.com.

To read more about how Cancer hurts Caregivers Too, visit the USA Today article of the same name:http://www.usatoday.com/news/health/2006-11-19-cancer-caregivers_x.htm

Wishing you all well!

PLEASE SHARE YOUR CAREGIVING EXPERIENCES WITH US. NETWORK WITH OTHER CAREGIVERS HERE.

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