” Throw in a dash of panic, a pinch of fear, add a tablespoon of manipulation, 3 cups of scheming, and a handful of pills”- Charles Swindoll
and what do you have? Nothing but Chaos —
Now, a few years later since my grandma passed away, ironically, I have now become the patient. I have been diagnosed with young onset Parkinson’s disease forcing me to retire at an early age and give up the career I so loved! However, my role as a caregiver continues …in fact it appears to be expanding at an exponential rate.
Only difference is that NOW I am a patient as well and frankly I am not sure if my marriage will survive this second round of challenges!! I still have the support of my spouse but I find myself increasingly feeling like I am less of an equal and more of someone who needs tending to despite my very best efforts to the contrary! Which is funny given the fact that I still run everything around the house and in our family; you would know this immediately if you were part of my family because within a day or 2 of me being down the entire house falls apart!
Other than my job status and the whole bunch of pills I must take daily to function I do not see a difference in my abilities, personality or talents (perhaps- I am in complete denial- ignorance IS TRULY BLISS)….okay, yes! I am a little slower at times and more fatigued most of the time but I am still the one everyone else turns to for help!
The past couple of week’s life stressors and demands have landed me at the footstep of the cardiologist office with severe chest pain fearing an ischemic attack- heart attack! These events which were the culmination of being housewife, mother, daughter, sister, caregiver, friend, mentor and patient among a myriad of multiple other roles CAN BE UTTERLY EXHAUSTING even in writing!
Ordinarily, if I have too much on my plate I can lean on my husband for support. Thank goodness for this because it was HIS insistence that I see a cardiologist! Turns out I have a cardiac condition- YIKES….DID NOT see this one coming…. But, over the last couple of weeks my husband had severe flu running 102 fever and developed pneumonia, and my daughter was discovered to have a possible tumor. This was after the beginning of my cardiac pain ….as you could imagine I did not have much reserve or stamina to care for anyone other than myself and seeing everyone so ill and needing my attention and care only made me feel sicker!
They wanted home cook meals but I had no groceries because I was too sick to go to the store-so thank God for take out!
Now, imagine you are in my shoes …what will you do?
Everyone you love is ill and is counting on YOU to bail them out but YOU are not only torn in multiple directions but are ILL yourself?
Well, as all things tend to entropy- (Greek word -meaning measure of the disorder)…..implode they will!
We must learn to cope with the stressors -so it is NOT US that BREAK DOWN & end up such as myself in the doctor’s office or worse in the Hospital! After all, if we are not well…then who will take care of our loved ones?!
My near cardiac event was not only a wake- up call to focus on what is truly important. But, also served as a reminder that any stress can be detrimental even lethal in the presence of any underlying chronic illness such as Parkinson’s disease, much more so than if it occurred in an otherwise healthy person. This realization led me to focus my attention on the challenges that we the “sandwich” generation are facing daily. The term sandwich generation refers to a generation that is simultaneously caring for parents and children coined by Dorothy miller in 1981.
Many of us who have Young Onset Parkinson’s Disease, Parkinson’s and Parkinson’s Plus Syndrome are in this situation caring for an aging frail parent who perhaps has Alzheimer’s and rearing young children. We are having to attend school events, piano recitals, swim meets, girl scout activities and so on while make end of life decisions for our loved ones who may not even remember who we are! This can take a toll on any normal healthy person. throw in the wash your illness, your own doctor appointments NEVERMIND YOUR LOVED ONES DOCTOR APPOINTENTS and perhaps you are still holding a job either full time or part time? But, even if you don’t work outside the home these activities are enough to drain the last ounce of energy of any one. Yet, outside of caring for our loved ones on both sides of the spectrum, there is still house work and cooking to do!
It should, then, come to us as no surprise why we are so fatigued, depressed and worn out! Because face it, no offense to the guys who also are going through this illness and same issues….women are still in the majority of cases the home makers and the ones to tend to the kids and look after the parents. This is not because men don’t want to help. Sometimes they just don’t KNOW how to because they have never been thought or given the opportunity to do so!
It is hard to come home from a hard day’s work and have
to essentially continue working because you have to be the one to pick up the
slack for your loved one due to their illness. Sometimes all, you want to do is come home
and rest undisturbed!
This means NO cooking, cleaning, or tending to someone else’s needs the minute you walk
in the door.
It can be especially disheartening if the person you care for is able to change and groom themselves and yet they are
still disheveled upon your arrival or worst in their morning clothes! That’s why even if I had a
horrible day, I will take care of myself and spend time grooming and if at all possible rest(as I mentioned in other blogs- a “5 minutes rest-sit still and do nothing” to recharge at least a couple a times a day is highly recommended! This goes a long way to avert fatigue and only way I know how to keep going). Do whatever needs to be done so by
time husband or spouse or care giver arrives, you are looking your BEST but also NOT appear as a patient! (although sometimes this can’t be helped).
Even though, in my case my husband serve as my caregiver, he is also the provider and bread winner so I try to maintain my role as an equal in the household …not only looking the part of a well groomed wife but also that of a homemaker. The latter is not always easy since we all know that having Parkinson’s or any other chronic illness results in “good days and bad days.” So, for the not so good days either put something in a crock pot (“Any body can cook in a crockpot….” by Debbie Thornton) or stock up on fast easy semi-nutritious frozen foods or for better quality foods do like I do on days when you feel well cook a surplus and freeze for later use. [In some cities and towns, they offer cooking classes where you can actually cook a whole weeks worth of food and take home to freeze! I would definitely take advantage of this if I were to live in one of these towns ]
I use all the suggestions above 90% so there is a meal when he comes home. For I have learned that nothing makes a man happier than
seeing food on the stove…I do declare…. when my husband sees all 4 burners going
he gets positively gitty!
Fortunately, there is take out the rest of the TIME!! don’t stress yourself! spending time with your loved ones is what’s MOST important!!!!
After all what matter is your heart and enthusiasm in caring for your loved ones-(Greek origin is entheos, “God in”). As my best friend always said, “is the quality Not the quantity” of time you spend with those you care for……
So, next time we feel frazzled and sandwiched in our duties and responsibilities instead of hiding or running to the doctor for more pills let us turn our entropy into entheos in order to see God in every situation to make it fresh and exciting even if we are just the meat in the sandwich being crushed and squeezed from both sides…. remember, no perfume could ever be released from its source (the flower) without crushing it first!
Dr. M. De Leon is a retired movement disorder specialist, PPAC member and research advocate for PDF; Texas state assistant director for PAN (Parkinson’s Action Network). You can learn more about her work at www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org
Always Keep it EVEN
Empathize- remember in a few years all of us could be in the same situation !!!!!
Validate concerns-when ignored or suppressed emotions gain momentum if validated they dissipate
Encourage wellness-music, art, exercise
Neutralize anger/panic/fear- person is STILL living HIS/HER LIFE- you are only there to facilitate