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searching for materials to develop caregiver program

oncmsw
Posts: 1
Joined: Feb 2004

I am an oncology social worker working to develop programs for our cancer center's caregivers (both local and long-distance). Many of the materials I am finding describe the prblems caregivers face or are too impractical (take a 2 day vacation-well duh, if you had that free time, you probably wouldn't be tired). I'm looking for very concrete taking care of yourself info. & tips to ease the physical/emotional demands of caregiving. Please give me books, websites, etc. that were helpful for you.

Thanks,
oncmsw

SashaButtons
Posts: 4
Joined: Mar 2004

Nothing I read prepared me for the problems I faced. Perhaps because there wasn't enough time in the day, and when my day was over, I was too exhausted to read.
What I can tell you worked most for me, was support from friends and family. Having them ask me how I was doing, and if they could help in any way. I also cried alot (mostly from exhaustion and thinking I wasn't strong enough). I typed a journal late at night, to let my feeling out, and meditated whenever possible. I learned ways to problem solve (like getting dinner daily during the chemo months, to insure it was something he wanted to eat, and getting two of everything because he would eat, throw up, and later eat again and be able to hold it down)
Instead of asking for sites and books, you may be better off asking people for their real life experiences in being a caregiver. You will probably get better and more material.

SashaButtons
Posts: 4
Joined: Mar 2004

Nothing I read prepared me for the problems I faced. Perhaps because there wasn't enough time in the day, and when my day was over, I was too exhausted to read.
What I can tell you worked most for me, was support from friends and family. Having them ask me how I was doing, and if they could help in any way. I also cried alot (mostly from exhaustion and thinking I wasn't strong enough). I typed a journal late at night, to let my feeling out, and meditated whenever possible. I learned ways to problem solve (like getting dinner daily during the chemo months, to insure it was something he wanted to eat, and getting two of everything because he would eat, throw up, and later eat again and be able to hold it down)
Instead of asking for sites and books, you may be better off asking people for their real life experiences in being a caregiver. You will probably get better and more material.

Turtle1
Posts: 1
Joined: Mar 2004

First I would like to, "thank you", for the work you are doing. Last month, (Feb. 1st) my Mom lost her battle with esophogeal/stomach cancer and if it wasn't for the hospice staff, (nurses, doctors, Social workers,...) I don't know how we would have handled it. I came to this site to try and find some help for me, but I think I may be of some help to others as well.
The hospice that we had were very supportive to the caregivers. There were some books that were recommended and my favorite was called, "Final Gifts". This book was written by two long time hospice nurses and helped us to deal with the things we were seeing that a terminal patient experiences. Two other smaller books were directed more to the children in our families and helping them to cope with their Grandmothers' passing. I'm sure many hospice programs offer these. And it is true that even if you have these books there is little time to read, so my sisters and I would share some of what we read to help the other.There were even times that I couldn't pick the books up because of the content, (sometimes it is very difficult to deal with the reality of the books' purpose), but it helped when I really needed to have a question answered.
It seems the best thing is to evaluate each situation and see what issues are the most pressing at that moment. Our situation seemed to change daily. Luckily we are a very close family and as the time drew near we all pulled together and depended on each other. Out of the four of my Mothers children, I am the one that lived out of state. My two sisters are nurses, but each dealt with this in a different way. My oldest sister, an RN, felt like she should be invincible and should be able to handle this with no problem. She was having a hard time trying to be the knowledgable nurse and the heartbroke daughter at the same time. That is when our hospice nurse was so invaluable. I talked to her and she was able to help my sister understand that it is so different, nursing as a job, and nursing for your own. There were so many issues that she was dealing with that I just didn't know how to help her and in my state of mind at the time, along with a lack of rest, financial problems, distanced from my own family,...You get the picture, it helped so much to have someone else there to say, "What can I do?", and be able to do it.
Another thing that was a BIG help was when we had the hospice volunteer come in and help with Mom's bath. Even though me and my sister were both there it was so wonderful to have someone come and give us a break. My Mom even enjoyed having this young lady to talk to. She was like a breath of fresh air. I hope this helps. "T"

CHM
Posts: 3
Joined: Mar 2004

I HAVE COME HERE FOR THE FIRST TIME TO HOPEFULLY
MEET OTHER CAREGIVERS, AND TO TRY TO HELP THEM IF
POSSIBLE. I COULD USE SOME SUPPORT MYSELF!! I WORK FULLTIME AND AM A FULL TIME CAREGIVER TO JACK,WHO HAS LUNG CANCER. SINCE DECEMBER I HAVE
STARTED READING GOOD BOOKS AGAIN. IT HAS TRULY BEEN A LIFESAVER FOR ME - RELAXING AND ESCAPING THE MANY HOURS I HAVE ALREADY WORKED DURING THE DAY AND EVENING. I SLEEP MUCH BETTER NOW EVEN THOUGH I AM STILL FRUSTRATED AT TIMES WITH THE UPS
AND DOWNS THAT JACK IS HAVING WITH HIS CHEMO AND THE LOSS OF STRENGTH IN HIS RIGHT HAND. I DO EVERYTHING FOR HIM FROM COOKING TO SHAVING HIM. IT
IS NOT EASY AS HE HAS SO LITTLE PATIENCE WITH HIS
DISCOMFORT. HE IS PHASE 4, HAS HAD RADIATION TWICE FOR TUMORS, AND WE PRAY THE CHEMO WILL WORK
TO GIVE HIM SOME ADDED YEARS OF LIFE. I TRY TO STAY POSITIVE EVEN WHEN SOME DAYS ARE VERY ROUGH!!
I GET TO WATCH A BIT OF TV LATER IN THE EVENING AFTER I GET HOME FROM WORK, FEED JACK, GIVE HIM HIS MEDS, AND DO THE CHORES I MUST DO! READING HAS GIVEN ME BACK A PART OF LIFE THAT I HAD GIVEN UP LONG AGO. TO EASE SOME OF THE STRESS OF CARE-
GIVING AND EMOTIONAL STRAIN, I HOPE MORE PEOPLE LIKE ME WILL TRY A BIT OF READING EACH DAY. LIFE IS TOUGH, BUT I LIKE TO THINK I AM TOUGHER. ANOTHER STRESS RELIEVER FOR ME IS TO DO
SOME DEEP BREATHING EXERCISES BEFORE I LOSE MY
TEMPER OVER SOMETHING UNIMPORTANT. EVERY CAREGIVER MUST TAKE CARE OF HER OR HIMSELF FIRST IF AT ALL POSSIBLE, OR THEY BECOME MORE ILL THAN THE ACTUAL PATIENT FROM PURE EXHAUSTION. EAT OFTEN, EVEN IF IT IS A SNACK TO SUSTAIN ENERGY.
I HOPE A SMALL BIT OF MY INFO WILL HELP YOU.
SINCERELY, CHM

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