“Don’t dwell on the disease, value the moments. the pearls of wisdom, their smile and humor.” ~unknown
Whoever says caregiving is easy has never really been a caregiver; it is absolutely hard work. But, if you do it with love it will be the most rewarding thing you ever do in your life. I absolutely guarantee it.
Many of us will at one point in our life be called to play this role and provide full or part-time care for someone we love (i.e. – spouse, parents, grandparents, children, grandchildren, even close friends). Some of us may even have to provide care to multiple generations simultaneously known as the ‘sandwich effect’.
The caregiver role typically falls under the responsibility of women. Because women are often viewed as natural nurtures, we are often put in this role even if not fully equipped. I recently had the privilege of speaking at a Parkinson’s caregivers support meeting in Dickinson, Texas and was very pleased to see many men attending the meeting. With the perceived increased in young women with PD, I believe that this current trend will be shifting as men are suddenly thrusted into this role. The effect on the caregiver independent of age and gender is nearly always the same. The caregiver struggles with issues of depression, anxiety, and isolation the longer the length of time performing this duty. These issues are further compounded by rising cost of health care, uncertainty of future, and inability to work as desired to better the financial situation due to the pressing need of that person to remain at home to care for loved one.
I have on an occasion or two been responsible for the care of several loved ones in my family. Although, in two instances the duration was relatively short, less than a year; at the time it felt interminable. The stressed soared through the roof as the demands physical, mental, and emotional increased along with my demands at home as a mother, wife and physician piled on. Also, my patience decreased with increased fatigue and physical exhaustion and in my grandmother’s case, I had help from a lady I hired to watch grandma while I worked and from my spouse during weekends and after hours. Yet, at times I felt as if I would be completely shattered under the heavy burden of life’s duties and responsibilities compounded by 24/7 care of a loved one at home. Having psychotic patients at the office, hospital as well as at home can be quite maddening at times. With my father the burden of long distance was also difficult since I was the primary decision maker regarding his health. Traveling weekly and staying away from home weeks at a time was also difficult.
Now, imagine the type of stress, frustration and anxiety a caregiver must succumb to in the presence of a chronic progressive illness such as Parkinson’s disease in a loved one who have no other outside help or assistance?
Compound this feeling and multiply it ten-fold in the case where both partners are chronically ill or are elderly – the result is a veritable hot mess ready to implode on itself at a moment’s notice. Sometimes it is absolutely impossible to tend to someone else’s needs when our own medical and personal problems are at stake. I know this all too well from my own personal experience. In dealing with my father’s cancer week after week my Parkinson’s symptoms suddenly jumped up a notch. This meant it was harder for me to stay in the hospital with him, drive to and fro my house to his, and tend to his needs and whims; not without causing me to feel at times like his illness was a major imposition in my own life. This meant forgoing medical treatment for my own medical issues, leaving my daughter and husband unattended frequently meanwhile the need for larger doses of dopamine rapidly escalated to keep up with the physical and emotional demands.
I have worked with thousand’s of patients and family members who have been caregivers (partners) for various lengths of time and the feeling is unanimous. Caregiving can be exhausting, soul sucking even if you allow it by not getting outside help and allow friends, and other family members to become part of the inner circle of trust. These valuable individuals can lend a helping hand, a shoulder to lean on, prepare a meal, run errands, do grocery shopping, sit with your loved one or simply hold your hand in times of overwhelming stress. Never forgetting that the key to successful long term care depends on a few factors.
Even when you have aid from outsiders, there is an amount of stress that comes about due to blurring of boundaries. It is difficult to maintain a private personal life or achieve quiet time if continuously bombarded with people at your home. We all need respite from time to time even if it’s just to sit alone undisturbed for an hour of peace to be alone with your own thoughts.
#1 open communication –know your loved ones desires and wishes and vice versa- dreams should not die because of illness rather be modified.
#2 get support – no man is an island, we are all connected and when one is ill the others suffer as well.
#3 take care of yourself first- can’t burn candle at both ends otherwise the flame will be extinguished much sooner and your loved one will suffer and wither faster.
#4 plan activities together and separate- have friends over, do book clubs, bingo, puzzles, etc.
#5 don’t sweat the small stuff -Laugh and share stories. So what if the house is not perfectly tidy as long as you and loved one happy.
#6 concentrate in the love- look at the situation as a glass half full not half empty.
#7 this too shall pass!!! When the loved one is gone like my dad and grandmother you would give anything to have them back. So savor the moments together. Life goes by in a blink of an eye!
Today is my dad’s death anniversary, he has been gone from us for 2 years but the laugher and the love remain. Miss you and love you dad!
Leave you with a Prayer- partially composed from Author unknown
Unknown and often unnoticed, you are a hero nonetheless.
Your love is GOD at is BEST.
You walk by faith in the darkness of the great unknown,
and your bravery, even in weakness, gives life to your beloved.
You hold their shaking hands and provide the ultimate care;
With your mere presence you provide immeasurable comfort
and courageously face the giant of PD and its despair.
It is your finest hour, although you might be unaware.
You are resilient and beauty excelled;
You are the caregiver and have been blessed for simply being there.
all rights reserved – Maria De Leon MD