Thursday, June 5, 2008

A Different Sandwich Generation: Caring for Children with Disabilities AND Aging Parents





The "sandwich generation" with a special needs twist. Are you a member of the club [if I was REALLY clever I'd have a picture of a club sandwich here]?

My friend "J" is has two teen/young adult children on the autism spectrum at home, along with her elderly mother who has dementia. "J" told me that she has run into women she knows from autism support groups at support groups for children of parents with Alzheimer's and dementia. Clearly, "J" is not alone. How she and others do it, I don't know. To try and find out, I searched on the internet for information on and tips for caring for special needs children while also caring for aging parents.

I found plenty of information about the impact of caring for both children and aging parents while working, including research by Portland State University researchers Margaret B. Neal and Leslie B. Hammer.

There are many articles and blog posts on finding care for aging parents, in general, such as A Place for Mom in Midlife's A Trip.

And there are a number of scary and depressing articles on the plight of aging parents of children with disabilities, who are worried about how their children will fare once they are gone.

AND some articles on the impact of multiple roles on the well-being of midlife women . Overall, it seems that the more roles a woman has, the greater her overall stress caused by such role strain. On the plus side, strong social support can mitigate some of that stress.

But information specifically on the stresses a being a"sandwich" parent who is caring for children with disabilities - I didn't find, well, anything. That isn't to say it isn't out there. Help, anyone?

I would like to hear from those of you who are experiencing this phenomenon. How does it impact you and your family? Have you found any resources to help? Have you discovered any "plusses" to this situation? I'd also appreciate any web links on information on this topic. Hopefully we can start a resource list on this blog, maybe called A Different Sandwich Generation?

7 comments:

Anonymous said...

All I know is I told my folks about a year after I moved away from them (I moved a measley 3 1/2 hours, but it seems like Timbuktu in their minds) that I regretted to inform that they would be spending their old age in my neighborhood if they wanted me to take care of them (yes, of my older brothers, only one of them who has children with special needs that have only been recently diagnosed were an option, but unfortunately, they are busy with my sil's parents). My parents were also not keen on moving to the Midwest, so I will be taking care of my parents when they are older (my other two brothers would not be suitable candidates for taking care of my parents...too many issues).


I think as women we do get 'pulled' into many different directions. It's all about 'balance', I think. Easier said then done, even with only typical kids, I think. Add into the mix of aging parents and 'boom'.

Hopefully, by the time my parents need to be driven around to doctor's appointments, my middle boy will be driving them (this is ten years down the road)...I have also told them I am comfortable hiring a home health nurse to cover times that I can't (just like I do a babysitter). I remember Roslyn Carter writing a book a long time ago about caring for others...how we need to take care of ourselves, so we can take care of others...I have obviously learned some things by having a special needs child, like the need to take care of oneself...


(sorry to be off topic).

Katie

Carol said...

Not off topic at all!

I have noticed that it is more often the daughters who care for elderly parents than the sons. And they are more likely to do the nuts and bolts planning,like arranging for health care, hiring care providers, assessing changing needs - hey, that sounds like moms of kids with (and without) special needs!

In the sociology/gender academic world, this is called doing "emotional labor." We do seem to do a lot of it, and most of it is unpaid.

Carol

Pam said...

Hi Carol, I continue to enjoy your blog and the issues you bring up. It is now almost 10:30 pm. My husband is working this weekend and my son has had a difficult night He is like a human barometer; I notice on days of changing weather he has a hard time. From 7 to 8 pm. he was actually screaming, wide mouth, full out yells. ugghh......but he is calm now and went to bed on his own, giving me a soft kiss first. As for sandwich generation, I feel it, but maybe not for the typical reasons. My father passed away nine years ago and my mom has a younger, very healthy and active boyfriend. She is 84 and walks 2 miles and lifts weights daily. She divides her time between Florida and New Hamphire and visits once a year for 2 to 4 days. She tells me that I am not fun. I agree. I am nice but on many days I am not fun. It is just too hard to get through the day. My in-laws spend a lot of time on their aging parents. My husband and I both have siblings, but visits are rare from his brother who is in town often and my sister has not visited me in over 22 years. Both my mother and my mother-in law say that our siblings "have their own families to take care of" But it really seems such a shallow excuse.......as they juggle sporting events and we juggle therapy and agency appointments. I would type more but a mouse is crawling across the desk..............housework is suffering here, too.

Pam said...

Hello, Pam here again. One thing that helps me keep my sanity is to accept the help that I CAN get...For example, I have a dear friend who is a preschool teacher. She just loves to organize stuff, especially if I give her little boxes and tupperware to sort things into. She is coming over next week with her two teens to clean out my garage (Geoff found and gleefully scattered cement mix) and trim my front yard bushes. Hurray for the little blessings of life...

Sylvie said...

Given the likely biological/hereditary component of autism (ditto with OCD, Tourette's etc. etc.) is the burden unusually hard in these families? I don't seem to recall reading about this aspect of the "sandwich" experience.

Carol said...

Mmn---good question. I hadn't thought of that it would make sense.

Allison said...

Carol,

I can only imagine the challenges you all face. I have a friend with a high school age daughter with autism and I know she and her husband are moving into the pinch between the daughter and parents needing help.

I wanted to share a few resources that popped up on WomenBloom a few weeks ago. First there is an essay written by a woman with a 20 something autistic son that was published in a book called Voices of Autism. The essay link is: http://womenbloom.com/index.php?
option=com_content&task
=view&id=161&Itemid=55

The Healing Project is the organization responsible for getting the book published. It might be worth checking out because they have a rather extensive list of autism resources, not to mention a social networking function for those managing loved ones with autism: http://thehealingproject.org/links.html

Also, the book Voices of Autism might contain some essays speaking to this issue: http://www.lachancepublishing.com/
publications.html

Sorry for the lengthy, link-heavy post, but I was impressed with these and wanted to share...