More like a sandwich press…

I was planning to be very purposeful with my writing in this blog. That’s not happening.

It takes time to do research, which is one of the main resources in short supply when you find yourself in the caregiver role. So bear with me as I meander.

Since my last post, my mother has had surgery for ovarian cancer. This followed three rounds of chemotherapy and will be followed by more chemotherapy. I guess you could say she’s experiencing her own sort of sandwich. One of the conundrums of the sandwich generation is the pressure of giving quality care to both your children and your parents. Usually I can balance the two – particularly since my parents have been very healthy until recently. Sometimes it is more difficult. This is one of those weeks.

Mom’s surgery went very well. We got very good news about the effectiveness of the chemotherapy as well as their ability to remove any visible cancer. She is, however, struggling with the recovery piece. The chemotherapy has weakened her, and now, I realize, I should have been more insistent that she continue to walk outside or on the treadmill. She is worn down.

My parents and spouse are very proud that I have taken a job teaching two nights a week at a local community college. I think it will be enjoyable. I have colleagues to talk with (if I seek them out) and students to interact with. And none of it has anything to do with disability. Some days, I need that break.

However, with my one reliable source of help (my Mother) for Andy unavailable now due to surgery and cancer therapy, I am caught between a new rock and hard spot. One I’ve not encountered in 15 years. I have no well-trained support person for my son who has multiple disabilities. If I am lucky, I will have someone to train ONE day before I start teaching on Tuesday. I did put in a request to fill this position as soon as I knew about the need in early September, but for one reason or another, it’s not working out well right now. As anyone who needs direct support in their home knows, it seems like there’s never enough time.

I spent months preparing for Mom’s surgery and have given quality support. But now my son, who is quite vulnerable, may suffer.

This is the epitome of the sandwich generation.

But I’m living in a panini press.

Two Sunday’s ago, Parade Magazine’s lead article was about caregiving and the sandwich generation. I had planned to expand on some specifics of that article.

Another day.

Today I will say, that the resources in the article, though very true, are not fool proof. No matter how well I plan, how specific I am about our needs, or how much time I put into these transitions with my son and my mother, it takes a very heavy emotional toll. To be honest, this is when well-meaning people say things like, “make sure you take time for yourself.” Now just how do you do that when time is the resource you are “borrowing”?

The lists of what to do just bring feelings of failure and guilt. I read them and presume if I had just done it a little bit better, Andy wouldn’t be about to face a tough situation.

I remember thinking some tangible guidance would be published in a book titled, More Than a Mom: Living a Full and Balanced Life When Your Child Has Special Needs. I was sorely disappointed when this thick book arrived. There were so many things to plan and organize that I was overwhelmed. Of course, if you break it into reasonable chunks, you will find that the information is well thought out and useful. It just wasn’t my first reaction.

I did find the book, A “Stranger” Among Us: Hiring In-Home Support for A child wiht Autism Spectrum Disorders or Other Neurological Differences by Lisa Ackerman Lieberman very helpful with the process of hiring people to work in our home. It is smaller and focuses on one aspect of being “more than a Mom” that can help balance life.

Most of the time, books, articles, and websites designed to help reduce my stress as the the pressure starts to rise just make it rise more. Something about the “should haves” and “could haves” that does that to me. Guilt at it’s best.

What’s the answer? I’m not sure.

How does one nourish their soul, take care of themselves, earn a living, and care for others 24/7 without being constantly exhausted?

Thoughts?

Perhaps next time I will be able to address the similarities between the financial games of living with an adult child who requires 24/7 and aging in government systems people presume are there to help.

Good night for now.

Advertisements

About Joan

I am first, and foremost, the mother of two amazing young men. One of them has Down syndrome, Autism, Celiac Disease, and uses few words. I focus my work on providing support, training, and creating tools that will create quality lives, quality health, and connected community for him and his peers. It's true. We can all have a quality life, with quality health, and connected communities in which we thrive. Let's go on this walk together! You can learn more about me and my work at www.DownSyndrmeNutrition.com
This entry was posted in General. Bookmark the permalink.

3 Responses to More like a sandwich press…

  1. Donna Duffey says:

    Hey Joan,
    I certainly don’t have answers. And as I said in my previous response to your last blog, we are in a sandwich situation ourselves with Duff’s Mom. However, there are EIGHT of them, seven with spouses. We all pitch in in various capacities. Believe it or not, even with all of us, it’s challenging. So I don’t know how you do it, being the only daughter (certainly, while not all of these type responsibilities fall to daughters, we women do tend to be the ones our parents lean on).
    As for finding some way to fit in time for yourself? You know me…I’m good at it. I decided long ago (and I mean, before we had a child with major disabilities) that it would be important to my entire family, to somehow fit that in my schedule. With five kids, it took some time before I honed the idea. But I believe I have. Granted, it’s not as often as I’d like, and I could definitely use more time. I just believe I’m a better person for it; my children are happier for it; and my husband is happier for it. So, in my mind, ALL benefit.
    Course, when you’re in crisis mode, all that falls to the wayside. And as we all know, as moms to kids with multiple disabilities, and parents in need, and other children and friends in need, crisis mode can be a daily thing!!!!
    Hugs,
    Donna

  2. You speak the truth. Even thought I’ve written a book for the Sandwiched Generation about nourishing relationships without starving yourself, there are no easy answers. Accept that you’re doing the best you can.

  3. j says:

    Thank you Phyllis (Dr. Goldberg?).

    I appreciate that acknowledgment there are no “easy” answers. My greatest frustration in being Andy’s Mom and now with Mom ill is that people do not want to just affirm that it really *is* hard.

    I think I’ll be heading on to that website and blog of yours later tonight!

    Joan

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s