I haven’t updated here because, well, the life of a caregiver is very busy. And although my main duties of being a Mom and Caregiver never really go away, I feel like I’m rebalancing my life to put more time into my art.
But that’s another post; right now most of my energy is bent towards Jack’s Great Big Mediterranean Adventure. It’s been two years since Jack’s last Great Big Adventure and in some ways it’s taken me two years to recover.
As a caregiver, sometimes I feel like Hercules. And it may sound like it, but that’s not a good thing. It’s because I feel stuck in one of those ancient myths- The Hydra. Hercules cut off it’s head and two grow back. Talk about frustrating.
I feel that way often with Jack’s medical condition. Jack suffers from a multitude of medical conditions including diabetes, so keeping him in health is a relative term. There’s usually at least two appointments a month when Jack’s health is stable. Continue reading
Passenger: Airline said Im too disabled to fly alone – CNN.
US Airways is one of the airlines I’ve flown with Jack. Our experience is that each crew varies considerably in how they deal with the disabled. Some are great, some seem to see it as a real inconvenience. I believe that by bringing this to the public’s attention, disabled travelers might get a little more respect.
There’s nothing more frustrating or potentially life threatening than to be in the emergency room with the person we are caring for and forgetting which medications they take. Or forgetting part of their medical history. It’s understandable when we are under stress at a time like that, but forgetting an allergy or a previous condition could be fatal. If we are caring for someone with a lot of medications, it might be impossible to remember them all at any given time. And remember them we must, for every physician wants to know that medication list and any changes at every single visit.
The solution that helped me was to create a word document that I keep on my computer. I have a copy available for download here and on the Resources Page. Look for Meds&History. It contains all of Jack’s vital information, date of birth, SS#, Insurance information, contact information for me and Jack’s primary care physician. Continue reading
After the Walt Disney World trip in February 2009, we realized that travel with Jack was possible as long as we kept a few things in mind.
With all this in mind, in late February 2009 we started planning Jack’s long awaited trip to Mount Rushmore.
Surprising stress for caregivers.
Follow the link to read a press release from Northwestern University. It’s certainly worth reading for anyone who knows a caregiver.
In my case, Jack really doesn’t really have any family, but we did experience this with one of Jack’s old friends when he was in the nursing home.
In recent years, hoarding is beginning to be recognized as a disorder. Hoarders are people who just can’t get rid of things and continue to accumulate more at the same time. It makes great reality TV.
There are plenty of tools available on how to tell if someone is a hoarder and by what degree. But there are no easy answers. More study is needed to find out why people resort to this behavior, but what do we do in the meantime if we are a caregiver to a hoarder?
I can tell you what worked for us with Jack, whose house was so cluttered there were only small walkways between huge piles of stuff. In many places, the furniture was obscured by piles of stuff.
As a teacher, most of Jack’s summers were spent traveling and taking classes around the country. He loved the serendipity of just hopping in his car and taking a long road trip. Of course the stroke changed all that.
It took until late 2008 for me to get the courage to try traveling with Jack. He requested to see Mount Rushmore first and was also hoping to get back to Las Vegas because it had changed a lot since he was last there.
I just couldn’t wrap my head around it. When he asked his health wasn’t good, but as always, he bounced back and I had to start planning. So we agreed to go somewhere else first, just to dip our toes in the water of traveling. Somewhere a little easier, where they handle the disabled all the time.
A Magical Place.
You guessed it! Walt Disney World in Florida.
I had lived in Florida and visited many times. Once I started researching a possible trip with Jack, I found an incredible resource online at the DIS boards. This is an online forum, but the place with the best answers on traveling Walt Disney World in a wheelchair is the DISabilities forum.
And the trip itself taught me so much that research and reading just could not:
Like learning to take a powered wheelchair on an airplane.Every caregiver is a unique person, but nearly all of us experience some kind of stress associated with caring for our loved ones. Because we’re individuals, we need different things to relieve our stress.
For some people it’s vacations, for others it’s a hobby or reading a book. But it’s hard when you are stuck in a stressful day to think of these things. What has happened with me is that the stress wraps around me and prevents me from looking in the mirror and seeing the cause of my dismay. All I can see is the caregiving and my responsibilities.
So I have a list of Caregiving Stress Relievers. It’s a list of the things I use to relieve stress. Some can be done individually, some require connecting with other people. In futures posts I will talk more about many of these ideas, but just looking at the list often helps me.
Individual:
Social:
Most importantly you have to find a way to fill your own emotional buckets and this usually means putting aside your caregiving for a little while. Even if you can’t leave the house there are still things you can do.
I could say that I started caregiving sometime in elementary school. My mother was my example and because she helped any of the older neighbors on our block on D Street in Philadelphia, I was often recruited, too.
Mrs. Hearns was really my first case. I would walk up to her house if she needed groceries. Sometimes in the summer I would walk with her to a Doctors appointment. I was probably in 5th grade. She ended in a nursing home after falling down the steps one Christmas. I remember clearly because I was knocking on her door that afternoon to walk her down to our house for Christmas dinner. I never saw her again after the ambulance came.
There were many others I helped as an amateur, but it wasn’t long after finishing high school that I was working at local nursing homes while going to school for art. The most difficult part of working with nursing home residents was not spending too much time. So much potential still, so much life experience and I had very little time to let them flower. I carried a lot of sadness for the residents in the nursing homes where I worked and moved on.
So my next step was activities. Directing the activities at a Retirement Community was my full time job for over five years and there were weeks I felt guilty taking my pay. I enjoyed the chance to interact with these members of a truly amazing generation. Whole people in mind and spirit who still yearned to interact and create.
Then one of my dear friends, Jack had a paralyzing stroke in 2003. I was living in Florida, working in the defense industry. No longer in caregiving, I had spent the previous decade working in administration and technology. I owned my own software business and was also working as a jeweler with my own studio.
I visited Jack in the nursing home and although it was a very good place for him due to his physical condition, his mental state was suffering. My life was looking for a change and a somewhat unconventional situation had me picking up my life and moving a thousand miles back to the city of Philadelphia. Jack was able to move back to his house with me as his caregiver in October 2005 and we’ve never looked back.
Caregiving has been a way of life for me. It’s in my DNA and I have found that if I apply the creative thinking that I’ve used all my life with caregiving, amazing things happen.
