Welcome to CareNotes. In this
special section we will feature a reader's letter and provide an opportunity
for an interactive exchange that will help find some answers and possible
solutions to concerns. If you wish to respond to this letter, simple
follow the link provided at the end of the letter and add your comments
and thoughts to our CareNotes Board.
Name: Dianne Ullrich
Location: Cincinnati, OH
Time: 12:41 PM
You're not alone. I took care of my mother during the last 18 months of her life and a friend of mine was caring for his mom. We both experienced exactly the same reaction from other people - i.e. - there were plenty of flowers/cards and call initially, but eventually everyone just faded away. You couldn't go out anymore or socialize like you did before - you were no longer any fun!
Don't give up hope - we both found there were one or two friends (old and sometimes brand new ones) who seemed to understand and provided invaluable support. Continue to let people know what you need. A friend eventually told me that at first she just didn't know what to say to me or my mother. My mother had advanced breast cancer and the only hope was "maintenance" -- the chemo was not working - just delaying the inevitable.
Your list is great! Keep telling friends and family what you need and don't be afraid to reach out for new friends, support groups, and professional help.
There are people out there who understand and care - let them become your "little miracles" - the people places and things that help you through the rough spots.
God bless you.
Name: Dianne Doyle
Location: Scottsdale, Arizona
Time: 03:46 PM
I cared for my elderly and dying parents for 8 years before I had a stroke and could no longer care for them. But when I was caregiving, the things I wanted most were the oddest sorts of things: pick up the fallen fruit from our citrus trees, stop by and visit with the folks so I could run 3 errands together (instead of only one at a time) and get them off my ever-growing to-do list, be willing to just LISTEN to how hard it was for me at that moment in time, help me maintain the front yard so it looked nice to the street (something I NEVER had time for and ended up having to pay a yard man $80 to do every so often, though it was nothing more than pulling a few weeds and tidying up the garden bed by pulling out the dead flowers). It was the little things that mattered to me, not the big things. Sending me perfumed soaps and bubble bath was a waste of time, because my day started at 5am and went until 11pm, so about every 3 days I managed to run through the shower. What was SO special to me was when a friend or neighbor just showed up and washed a sink of dishes, or ran the vacuum, or brought by a surprise meal......or did nothing else but just BE THERE for me. And now that I can no longer care for my parents, these are the things I cherish most when people come by to see how I am. You quickly learn who your friends are when they come by and say "I have an hour and 20 minutes before I need to be home.......what can I do to help!" You bless those people for MONTHS afterwards, because they saw the need for another pair of hands, even if they didn't know what I needed most from them at the moment. And one of the best who came to help was a 71 year old woman, who would just show up and pitch in on whatever was the need at the moment.....dishes, yardwork, entertaining the folks.....so it's not limited to youth and vitality. It's an effort of the heart.
Location: Falls Church, VA
Time: 05:06 PM
I'm so sorry about your new caregiving situation. As a spousal caregiver for many years, I'd like to tell you about Well Spouse Association, if you don't already know about it. It is a national organization with local support groups, an online forum, and many, many resources to help spousal caregivers. It is instant friendships with others who really understand. See www.wellspouse.org. YOU ARE NOT ALONE!
Time: 06:06 PM
I needed to know just how much of our load he was carrying...I know that's a great list of what can be done to ease that person's additional work load...I would appreciate some help now Hubby in hospital to have hip replacement replaced with the RIGHT size appliance....We can make it but it is eye opening
Name: Elizabeth Benshoff
Location: Overland Park KS
Time: 07:08 PM
Go over to the house and chat with the care receiver for a short period of time, but be consistent. Something like "Tuesdays with Morrie". That way the care receiver will have something to look forward to. Dropping in once a month doesn't do it.
My husband has aphasia but he would still enjoy a call from a friend who could relay the latest basketball, baseball, golf, football stats. It would make him feel included.
Location: Pondicherry, India
Time: 11:34 PM
"and eat it with them" poignantly captures the entire dynamic in 5 words.
In my observation, many people are simply scared out of their wits by seeing people they know being incapacitated or even dying. We as caregivers are forced (if we are to succeed) to face the facts of the situation... hence the term "fearless".
My friends and relatives will likely not ever face the facts in the same way as I am forced to and to be honest, if I were them (and not forced to deal with the realities) I probably would not face them either.
Actually we need to learn to become more than just "fearless" in the situations we face. We need to become, "compassionate", "creative", "energetic" and dare I say it "happy" as well.
These are things we might learn from support groups and from books and magazines and websites like this one and most of all from what we learn from our own experience of growing into the role we thought was far beyond us.
Your 5 words made my day more insightful and I thank you for that. If I could I would arrive at your door with a pizza and a six pack of ginger ale this very day.