“Sandwich” generation .. navigating caregiving for parents with dementia … while managing college aged kids

   The only sandwich I ever wanted to be was a nice pastrami one from Katz’s deli….. yet like many, many people I find myself instead defined as the “sandwich” generation.  

It is that point in our lives, in our 50s for many, when we are still working outside the home, with a career or job that requires our minds and time, with kids on way to college or post high school careers and having to navigate their journey with them, with the stress of once again only being part of a couple - that is not focused on discussing the kids they are raising and then you add in for many of us aging parents who now need us to take care of them.  This particular multi deck sandwich I have found is much more like to make an appearance on the menu of women’s lives.   

IT IS EXHAUSTING in every way.  You are constantly plagued by the “what did I forgets” and “who am I letting down”s.   

I recently navigated helping my older son find an apartment for his junior year .. in NYC .. which is like Survivor meets What the Hell other financial document do you need now.  I have a younger son who needed all his “stuff” to be ready for his move to college in a couple of weeks.  Work for me - is well - never ending and with higher responsibilities.  I really enjoy my job, my colleagues and I have no interest now, or have ever, in not being in a job that required me to dedicate a significant amount of time.  It is that same job that provided me with financial, mental and flexible days and opportunities that I and my family have benefited from.  A luxury that I know not many can say they had. 

My mom and her husband, who passed away several months ago, aged and not well.  They had a plethora of chronic illnesses and their sedentary lifestyles led to my as an only child needing to do more than I could have anticipated for them.  My mother’s husband has a daughter and she stepped in to help when he was around.  However, now it is on me, an only child, who lives almost 2 hours (each way) from my Mom,  to take on another full time job. I am now taking care of a mom who has dementia and Parkinson’s too, at a distance.  It is easy for others to wonder why not move her in with us, besides the space issue, she needs the kind of care that is better in her own place and dementia is not something a family member alone can manage with the patient.

If you are not there, or are but have a lot of support, I am very happy for you, I would not wish this on anyone.  It is a series of multiple phone calls, some where your mom may or may not remember your name, or call you to ask you about her only child which .. is .. you.  It is managing a whole other set of finances, navigating what is a labyrinth of finding care (hospice, full time caregivers, doctor’s appointments).  

It is being angry for the many steps not taken and advice selfishly ignored in years past by these older people, for all the wrong reasons, a stubborn obsession with wanting to hold on to the money they worked so hard to save .. it is all going to be gone for services.  Yet it could have been easier, for her, for me if they would have just .. not going to list it all but giving all a heads up, get your own finances and downsize when you can still.

Being older in the US is very difficult, a full time caregiver is very expensive but not optional, they should be paid well - yet shouldn’t there be Medicare coverage for at least a part of this to help with this expense?  Of course there should.  

Caregivers - they are now an employee to manage as well, you hope that most of all they are kind to the parent you have entrusted to them, it is like when you hire a nanny, sitter, daycare for your child .. they are so helpless .. you need kindness and patience from anyone who will be part of their world. 

You need patience .. so much .. and some days I am so tired, my brain space left without any open slots and you get a call asking for something that is so odd, or your mother telling you about her current situation is that she is in another country and you have to go with it because pointing out reality is not helpful to them, makes them angry.  

You need to remember in those moments, when the meanness directed at you, that this is the person who had patience for you, who in my case did the best she could and always did it with the best intent.  

All of this, while paying their bills as well as yours (just finding their accounts and getting power of attorney was a multi step process), managing their household orders for food and any issues that come up, all from a distance,  It is visiting even when you want to take the day off as a day off not as a visit.  Not because you do not want to see your mother but because the mother you will see is not the person you had all of your life, but a mere shell who at most can give you 30 min of themselves.  It is heartbreaking. 

So yeah .. sandwich generation .. and of course there is the gift that keeps on giving of menopause .. with it’s weird aches, weight gain from breathing and sleep deprivation.. cause you know why not.  

I have been told that I need to find a therapist or a group for caregivers.. and I know I do .. yet when exactly is that supposed to fit into my commute, work, kids, house, dog, aging parent, and yes time for friends here and there ?? 

If find yourself in this spot .. or see it coming .. take a breath.  Somehow, your friends will cushion you, somehow you will find ways to not cry at work when you get the call from a mother who may or may not remember your name, you will find a strength that you hoped you never needed but somehow know you have shown before.  

As women we do not need others to tell us what to do .. not with our bodies.. not with our votes.. not with our lives .. we need people who will support the choices we make, to hold the burdens with us for a minute and not add to them.  We need a system that helps with our aging parents.. because they have worked all their lives and deserve what is left of their lives to be with dignity and care.  We need partners not preaching. 

Dementia is a terrible disease for everyone who encounters it ..and it is a trial that many of us will have with our parents, and fear and hope not be diagnosed with.  My mom will not get better and I do not know what is to come .. but in the toughest moment I close my eyes and think of the song that I (and so many) have often associated with our moms 

“Did I ever tell you you’re my hero ,, you’re everything I would like to be …cause I can fly higher than an eagle ..cause you are the wind beneath my wings”. 

She definitely ensured that I knew how to fly, and I hope I am also showing my own two boys to do the same