Friday, November 16, 2012

I am a Sandwiched Caregiver

Me, my boys and my parents, 2006

I used to think my blog title was self-evident... The Squashed Bologna: a slice of life in the sandwich generation. Maybe even a little too on the nose.

But apparently not. I still get asked questions. "Why are you squashed? What's that 'Sandwich Generation' thing mean?" And I feel shocked, and if I take a moment to think about it, a little saddened. I've been living the "Sandwich Generation" life for so long now, I forgot that it might be possible to not know.

It has been so many years that I've been simultaneously caregiving for two generations (and doing pretty much nothing but that) that I can barely remember the time when I had just myself to worry about and care for, cannot fathom what it would be like to be innocent of my intimate knowledge of sandwiching, to not constantly feel like the meat squashed in the middle of the family bread.

The "Sandwich Generation" is the catchphrase much used by the popular media to describe people like me, who held off on their childbearing until later in life. So when our parents become elderly and needed us to step in, instead of having older, adult children who can themselves help out, we have young children still at home, depending on us as well.

Thus we are "sandwiched" between caring for the two generations at once: our parents AND our children.

In my case, this is ever more so, as my parents were - quite unusually for THEIR generation - older parents themselves. My mother was nearly 38 when she had me, and I, nearly 42 when I had my boys. (I'll spare you the math, that makes me a 52 year-old with 10 year-old boys and a 90 year-old mother in my care.)

In February of 2005 my parents moved back to New York City from Sarasota Florida, where they had enjoyed an active, happy and lively retirement for nearly fifteen years. I'd had my boys in 2002, grandchildren they wanted to spend more time with. But the stresses of travel were affecting them so that every time they came up to see us, Dad ended up in the hospital. It was time.

The other, unspoken, but clear imperative was that my parents really needed to be cared for, both on a daily basis around things like meals and medicine, and on the larger scale, like bill paying, doctors appointments, and decision making in general. All of which they had been thoroughly failing to manage on their own.

So, although they had moved into a senior residence with meals and "recreation activities" provided on site, they were effectively in my care to oversee all aspects of their lives. And chauffeur and accompany them wherever they needed to go.

And yet, at that time, I also had toddlers, my two and a half year-old twin boys, one of whom was beyond a handful all on his own, having just been diagnosed on the autism spectrum.

I would say a quintessential "sandwich" moment took place on Mothers Day in 2006. There were plans for us all to have a big luncheon together, along with my husband's family, which included his elderly mother, too. When I called my parents in the late morning to confirm that I would be picking them up in about an hour, my mother replied that they would have to beg off, as she didn't feel up to going out.

Further inquiry revealed that she was still in bed. Because she had fallen in the bathroom that morning at about 6 am. And, as she was in too much pain to walk afterward, she had crawled back to bed, where she intended to remain until she felt better. And could I maybe come see her tomorrow.

Um, no, Mom, I don't think so.

And thus I spent Mothers Day that year - yet only the fourth one of my life as a mother to that point - NOT with my darling boys, but with my parents in an emergency room. My poor mother had cracked her pelvis, a fact which it took them 10 hours to X-ray her and figure out, and then FINALLY knock her out with potent pain meds, so she could get some rest. My father and I were not so lucky, spending the night shuffling between the hard plastic chair at her bedside and the uncomfortable ER waiting room sofas.

One night, of many, many more - not my first, and hardly my last - in the ER with my parents; my husband putting our kids to bed on his own, waking them up in the morning and having to tell my sad, missing-me boys: "Mommy's still not here, she's taking care of Grandma / Grandpa at the hospital."  

Anyone who has followed my blog for any length of time knows that this past year, my mother been on a steeply downward trajectory, clearly entering the endgame of her life, hastened by her fall in May, wherein she broke her hip badly.

That very nearly killed her, and it effectively ended any last remaining shreds of her independence. Confined now to a wheel chair, she has had to move into a nursing home for the level of care she needs.

My heart is broken on a near daily basis as her mental and physical deterioration both proceed apace. I am watching her fade before my eyes.

It is both different from and similar to what I went through with my father, when he passed away in March of 2010. There was a both rapid and excruciatingly slow three months of torturesome leavetaking involved in that. But he was home up until the very, very, very bitter end, when we brought him to hospice to better manage his pain.

And he had my mother by his side.

My mother, for years, has been fond of repeating the saying "Growing very old is not for sissies" at the end of her long list of complaints, ailments and discomforts, usually followed up by a resounding "This sucks!"

When I reply, in turn "But it beats the alternative..." she has always nodded her head in agreement and acknowledged "I suppose so."

But these days she is sometimes answering "I'm not so sure, I'm just so tired, so lonely, I don't really want to go on."

I comfort her as best I can. I hold her hand, remind her of the grandchildren she so loves, who want her to stick around.

"I'll try to make it to their Bar Mitzvahs." she declares; a date three years hence. It's her goal now, less ambitious than their college graduations she had once promised to attend. But maybe, possibly, just on the outside chance, attainable.

And with much luck she will still remember who they are, when she gets there.

(I would like to add that caregiving for your elderly parents is not for sissies either. But it too beats the alternative. By a landslide.)


If you are a caregiver or know a caregiver who needs support, please visit aarp.com/caregiving for much caregiving help and information. This is a very useful site, a resource that I wish I'd had as I took on my caregiving role with my parents.

I am a member of AARP’s Kitchen Cabinet on Caregiving and Caresupport. November is NATIONAL FAMILY CAREGIVERS MONTH and I am helping to get the word out about elder care issues. All opinions/views expressed here are my own.




10 comments:

  1. I once referred in a blog post to the dread of the sandwich situation looming in my not too distant future (my mother is atm still a healthy 77 and able to look after my more frail father who is 82). I was also shocked by the number of people who didn't know what I meant by this.

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  2. No-one writes about this better than you Varda xx

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  3. Thank you for sharing so honestly.

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  4. I think being in the sandwich generation applies to all of us with special needs kids, to some degree, because our kids need more care for longer (sometimes for good). Well written post!

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  5. I can't think of a more perfect place for your words: AARP is lucky to have you, and you will be doing so much for so many: b ecause it's hard to find someone that understands the work it takes, and the planning, but yes--consider the alternative.

    xo

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  6. I found your blog a couple of months ago and keep reading because my mom, at 52, is now in a nursing home because we could no longer safely care for her at home. Although I have a young child and certainly get the "sandwich" thing, we have very different lives, you and I. But I want to thank you for writing your experience because reading what you are going through, "the long goodbye" I once heard it called, makes me feel not alone in it. You put difficult things into words very eloquently. Thank you for sharing and everything.

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  7. I wanted to let you know that I really appreciate your blog. I just recently found it. I am also a squashed bologna. I am 42 with a 9 year old daughter. My mom is 71 with multiethnic sclerosis and my father-in-law is 91 with stage 4 heart failure. My husband and I care for both of our parents. Just last night I curled up in a ball in bed and cried myself to sleep. I feel so sad watching my mom's body and mind dwindling away. It is so hard. I never feel like I'm doing enough for anybody, my daughter, my husband, myself. There hardly feels like enough of me to go around. I feel jealous sometimes when my friends take of on vacations without the worry of who will care for our parents. We can't leave for more than a day without finding someone to fill in for us. I also feel guilty for being selfish, wanting to just worry about only me, like you said. I'm on a big learning curve right now, learning how to balance it all. I'm not sure I ever will learn how to do this. But I appreciate your blog, just to know there are others who are in similar places in life. Thanks!

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  8. I should have spell checked. It should read multiple sclerosis not multiethnic sclerosis.

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  9. Hi, Researchers at the University of Missouri-St. Louis are looking for women who have children and also help care for an older relative with dementia (women in the "sandwich generation"). Interested individuals will be invited to participate in an online survey about caregiving and related health issues. Participants who complete the survey will be eligible to be entered into a raffle for a chance to win a $100 gift card. For more information, please email: caregiverpsychology@umsl.edu or go to our website at http://www.umsl.edu/~steffena/index.html

    Thank you.

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  10. Hi there! I just discovered what the Sandwich Generation meant the other day so I felt quite "in the know" when I saw your post at Love that Max! I was a sandwich caregiver back in 2002 when I was caring for my mother who was recuperating from a stroke, my daughter who was still recuperating from brain cancer and its subsequent disabilities and a newborn son! I applaud you in your commitment to your parents. I don't think I could have managed such a situation long term like that.
    I know it can't be easy. Best wishes and blessings to you and your family.

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I am so sorry to have to turn word verification back on, but the spam-bots have found me - yikes!