photo credit: williamhartz
People who have to take care of their elderly parents and their children are sometimes called the “Sandwich Generation.” My experiences the last couple days, reminds me not only of a sandwich, but an old baseball game called Pickle.
In the game of Pickle, two fielders throw the ball back and forth trying to squeeze the runner until one of them can tag him/her out. The runner is said to be “in a pickle” because there are few choices.
In the post, “Attack by friendly fire: People with autism and their families” (click here) I shared how my son, who is 35 and has the label of autism, is caught in a residential crisis. The county board is the fielder on Base 1.
This same week, I’ve been running my mother who is 88 years old back and forth to the doctors for her acute pain. Today the doctors decided to give her full hip replacement surgery. My mother is the fielder on Base 2.
Me–I’m the runner caught in the middle, “In the Pickle.” I keep hoping to get a break and make it safely to the base. Back and forth, forth and back… go from one crisis to the next. Try not to be tagged “out.” It’s tricky, but maybe I can slide into a base, or pull a turn and twist maneuver, or run real fast. The odds aren’t good. But, sometimes we get lucky and can get to base safely.
Aaron’s problem is actually the more difficult to solve because the “system” is set up to deal with people like my mom. There are thousands of seniors having replacement surgery every day. The system, for the most part, works well. If it doesn’t work, there are thousands of family members across the nation who can advocate and fix things. Still not easy, but there are lots of voices and advocates.
With Aaron there are few voices to advocate. Few people have the luxury of even being in our situation.
Many parents of adults with disabilities have their child living at home. They might be on the waiting list for the few Medicaid Waivers. If their child does get residential services they do not know what best practice looks like, they are not likely to rock the boat or ask questions. Many parents are afraid the services will be taken away. Many think the agencies are doing the best they can and just give up.
Thanks to so many of you who have offered your prayers and concern. Thanks also to those who have given me some ideas and encouragement as we move forward.
Right now, I’m still “in the pickle” running between the bases.
Comments:
Are you also a member of the sandwich generation? Also caught in a pickle? Tell us your story. How are you dealing with it?
Keep Climbing: Onward and Upward.
All the best, Mary
Day 19 of our Chris Brogan’s Every-Day-For-30-Days Blogging Challenge Follow us on Twitter #CB30BC
Alison Golden of The Secret Life of a Warrior Woman is my partner in this challenge: (click here to check out her new post.)
excellent article a straight forward no nonsence read
Thanks Philomena, glad you liked it. Hope you will share more about yourself.
My generalized rule of thumb is that public systems work 85% of the time for 85% of the people. Public systems don’t work 15% of the time for anyone and 15% of people for whom it works none of the time. These are numbers I’ve just made up to demonstrate my point. I always feel we fall in the latter category. And maybe my numbers need to change to demonstrate their are more than 15%.
Interesting numbers Alison. I’ll have to think about it, but sounds pretty good. And there is probably a category where some of the programs/agencies work 0% of the time–but that won’t show up in their annual statements.
Ladies,
I can concur with the struggle for health care services. In my case, I was denied AHCCCS, the state medical program for the uninsured. I have 3 prescriptions that I can not afford to pick up. One is penicillin. In America,
there are an estimated 54 million citizens uninsured. It is a workforce of part time hell, if you can get it.
For over a year, my work as a caregiver, for mostly wealthy clients was another object lesson. Most had great insurance, still, many families juggled home based care & hospice issues of a different kind. I plum wore out in running between all those cases. Alzheimer’s clients & family members, can be quite demanding & abusive due to their own pain. My friend Barb is a caseworker and I do admire those who can field the systems services, and make choices with families who adopt, and raise intellectually & severely disabled children. There are all kinds of stories out there. My dog and I would really be sour pickles if it weren’t for the kindness of my friends -the B’s.
Those of us running the bases, know all too well the fiscal conundrum facing the US & the global family.
That old feminist battle cry-“The personal is political” fits. There is a oneness to this debate.
The current AZ Gov. Jan Brewer, cleverly has focused attention on immigration issues and securing the border, all the while slashing millions in social service budgets. Her intellectually disabled son is in a state mental hospital, due to an assault charge. He could have landed in jail. Pays to have another kind of access. He deserves humane care, we all do!
This state ranks #1 in lost jobs and as for the housing crisis, we are in the top 5 in the US. Talk about running the game of pickle-I feel as if the ball has knocked me upside the head! Somethings gotta change!
There are so many people suffering. I’m sorry you’ve had such a hard time Marti. I know you were very caring to the people you worked with.
Ah, Mary! It’s not just even the run between bases – it’s also the tug and pull of one’s work and the need to attend to the marriage as well. Been there, am there. Good blog.
I do take just a bit of issue with the notion that there are lots of advocates and voices actively speaking on behalf of folks who are elderly and in need of care. Having cared for my parents for the past 6 or so years, first supporting their move to an independent retirement apartment (very nice place), then the wrenching realization that Dad’s memory “problem with names” was full blown dementia that was getting worse, their anger and misery when they moved to assisted living, more decline of their health and cognition, guardianship and the move to Virginia so I could oversee their medical care, Mom’s last year in a skilled nursing center, and Dad’s loss of independence and the sad move to secure assisted living last summer. Whew! Thinking back, it has seemed to me that all that advocacy and those voices have been about the services and the service providers and the insurance plans and the government supports ~ not really about the individuals who need support, security, transportation and services. Who spoke for my parents? Well, me! Not different at all from advocacy for our son Stefan. Lots of voices, but so few of them attached to real people, with real desires and real needs. . .
Jamie, how awful. You really were torn in two directions. Six years is a LOOONG time and a lot of stress.
You are right that noone is going to give the personal care and attention that a loving family member or friend will. Your parents are so lucky you have so many skills and experience in meeting individual needs. I’m sure you are making a huge difference in their quality of life.
I also hope you are taking care of you. That is a lot of responsibility for one person. Anyone helping you?