In an age where love and marriage seem to be on the decline. While divorce rates are on the rise ….
according to a newscast I watched this am…people either are choosing to either forgo marriage all together or wait until they are in their late thirties or even early forties to wed! Long are the days of 60 plus year wedding anniversaries like my grand parents who were married for 68 years the year, they both passed away!
This reminded me of an article I read a while ago regarding patients that had spinal cord injuries and multiple sclerosis. According to this article, those that suffered from these illnesses had twice the divorce rate than the regular population in the USA which as I just mentioned is astronomical. This got me thinking about other neurological diseases and in particular those that have Parkinson’s disease. Although, I did not find a lot of research or literature on the subject, my experience as a PD specialist, advocate, and patient confirmed this very notion.
I can recall many instances when after giving someone a PD diagnosis, the partner sometimes of many years, would suddenly leave/ abandon the patient when faced with the prospect of caring for someone long term. Other times it would occur after a few years of being a caregiver to someone who had a chronic progressive NEURODEGANERATIVE disease.
I never fully understood the reasoning behind this at the time nor grasped the full ramifications of these type of actions until now when I find myself in a unique position to be able to see the disease from a vantage point of a patient, caregiver, and physician. So, perhaps, I can begin to make some sense of why this happens and maybe make some recommendations to you (PWP’s) and others ( caregivers) to look for warning signs and how to avoid these pit falls and when to seek help and when to walk away from a bad partnership for sake of your physical, mental, and spiritual well being!
No matter who calls it quits- whether you are the patient or caregiver-separation or divorce is never a pretty thing! It can be a very traumatic thing not only emotionally devastating but financially speaking as well particularly if you are the patient and are disabled and can no longer support yourself or care for yourself!
Regardless of age or years of marriage especially when faced with a chronic progressive illness to suddenly realize that the single most important person ( whom you love) who was supposed to stand by your side for better or for worst chose to leave just when you needed them the most can be emotionally and physically paralyzing and numbing!
I often think of living with a chronic disease person being similar to the life style of 2 medical professionals who not only share the same field but are married to one another and work in the same office!
They come home day after day bringing home the work problems ( same ones too boot!) and then having to deal with the same family issues! Eventually, they simply run out of things to talk about.. you have heard of the old saying: ” familiarity breeds contempt.” It’s sort of true….
In this case, if all you ever talk about is Parkinson’s-partner may feel like life is all about dealing with doctors & BILLs and may not have the right coping skills so for them- IT gets old quick!!!
Everyone needs alone time, down time and be able to pursue his or her own interests…in order to develop and grow as individuals. It is imperative that each person continues to not only grow and develop as an individual with goals and dreams but have common goals and dreams as a couple (team). These goals must be realistic and must be subject to change and modification depending on disease progression. Flexibility on behalf of each party involved is KEY to good marriage longevity when faced with adversity. Also important in maintaining love and marriage in stressful situation like dealing with Parkinson’s disease is not just communication but having a sense of humor!!
Humor is a great release factor- I am certain you have heard laughter is the best medicine…
Laughter builds up your immune system and keeps you from getting sick and run down.
The thing that has kept my husband and I together despite 4 bouts of Cancers and 8 years of Parkinson’s is laughter and humor….He often breaks into song from a tune of LAND BEFORE TIME when I am down and can’t move and feel like a 90 year old… ” even though you look like you…you know we like you too….we are family and you are one of us now!…” then my daughter joins in ” we are family and you are one of us now, we are family and you are one of us now!” if she is around! until we are all singing and laughing.
When someone is suddenly trusted into a life they did not expect not only having to deal with the ups and downs of a person that is sick but also the financial and emotional stresses can be too much to bear!
That’s why I think that second marriages of a chronically ill patients are more stable and successful because the people involved are fully aware of each others limitations, condition, disabilities, etc. and already anticipate a financial and emotional toll on their life and are ready for it not caught by surprise! like when a young couple just starting a life together then suddenly one gets a chronic illness…
Another way I often suggest to patients and friends with PD to safeguard their marriage is to give their spouses a break from 24/7 or “31” as my husband calls it “round the clock” caregiving or care -partnering duties. Your spouse, especially if he is a man and a good provider, is already worried about you, worried about your health, your emotional well being, your future, your finances, your capabilities to perform activities of daily living, worried about your health insurance…you do not need to worry him or her with every PD symptom you have!
Surround yourself with a good circle of friends to strengthen you and lift you up.
For instance, I rely on my close friends who also have PD or friends who have family members with PD for support and companionship to events, meetings, doctors should I need some one to drive me or be a chaperone if I can’t travel alone due to medical reasons. In this fashion, my husband’s job is not disrupted nor does he have to be with me “31” and we can continue being independent of one another with our own duties and responsibilities …. of course there are times when he MUST step IN because I am unable to fulfill certain roles at that time and no one else is available to help but we like to keep this to a minimum whenever possible so that this is the exception rather than the rule!
Although, my husband supports me and stands by my side 100% he does not very often participate in my Parkinson’s events …that’s our compromise – this is one of his coping mechanisms.
The important thing to remember from this is that in marriage like in life, you have to fight for what you want and love…nothing worthwhile ever lasts if you are not willing to put in the time. If you have a spouse that has accepted your illness and is willing to stay by your side be grateful that is half the battle. Like in any marriage communication is of the utmost importance, as I said before, especially when dealing with chronic illnesses.. You must allow time for each party to go through all the grieving stages on their own…can’t rush them and most likely will not coincide with each others …: denial, bargaining, acceptance, anger, and depression. I put them here out of order because sometimes people may cycle in and out of any and all before reaching acceptance and learning to embrace life once again! This is what I hope you gain from this –learn to embrace life DESPITE your PD and learn to make a difference in someone’s life-even if it’s just your own!!!! My husband and I still have times when we want to wring each other’s neck … Because I maybe experiencing denial and he has already moved into acceptance stage for instance, And with every new incident or decline in my disease there is always a readjustment or grieving process that has to take place but everyone forgets about!!! Therefore, allow yourself and your partner time to grieve and talk openly and frequently!
Remember: Even the strongest person needs encouragement, support and loving embraces or they too will crumble eventually!
1n 1994 20.7% of disabled adults divorced compared to 13.1 % of non disabled adults
(*disabled spouses are increasingly forced to go it alone by Peter t. Kilborn. May 31,1999
New York Times health
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 http://www.facebook.com/defeatparkinsons101
you can also learn more about Parkinson’s disease at http://www.pdf.org or at http://www.wemove.org
all rights reserved by Maria De Leon