3 Rules to Avoid Confrontation with your Partner when Chronically ill: By Maria De Leon

“The good and the bad mix themselves so thoroughly in our thoughts, even in our aspirations, that we must look for excellence…“ Anthony Trollope, He knew He was Right

Most of us marry someone who is our opposite which is what makes us work as a team by bringing different assets and points of views into the relationship. However, if 3 important rules are not established or discussed, as we get diagnosed with a chronic illness or as Parkinson’s progresses (in my case), there maybe a build up of resentment, quiet seething, and increasingly snide remarks along with looks that could kill if given half a chance. So, instead of working as a team our contrasting ideas, and managerial styles can lead to friction which can pull us apart by making us feel alienated; as if we were working alone towards different goals.

I have seen this over and over in many patients and friends who both feel as if the other did not care when it fact both are committed to achieving the same goal- well being of the patient and stable, happy marriage. For instance, a wife after suffering a devastating illness in which she has practically been hospitalized for nearly 6 months has left her completely devoid of any will power physically, emotionally, and spiritually she is at the border of giving up from pure exhaustion. What she needs is complete rest and time to process everything she has gone though without anyone fussing over her. Yet, her fears are making her clingy and desperate putting her husband on edge. Husband recognizes depression and her need to talk to someone so he asks doctor for a counselor to help but she refuses the much needed intervention. His managerial style is to find a solution to her beloved wife’s problem depression which is causing her to not eat and wither away more. After being by her side day in and day out through out the entire ordeal, he too is in desperate need of respite.

Sometimes because of different ways of approaching the situation it may appear instead to the other person that the partner has either given up or does not care. When these sentiments begin to build up inside of a relationship, especially one that has endured much already, is a sign that you are reaching a dangerous zone. A frustration like a patient refusal to adhere to doctor’s orders, or to loved ones wishes for their own well being as the case above, can spark a fire and unleash a fury causing at times a twenty year marriage to implode on itself. Then we are left alone to pick up the pieces and deal with our illness at the same time through lenses of disillusion.

The epiphany– sometimes a feeling of neglect and betrayal we feel from our spouse is more about us than them. We have to start peeling the layers back one by one before we are confronted with our own insecurities and fears. This will lead to self discovery and understand what we are really upset about. Since, as Maya Angelou wrote “tragedy (chronic illness), no matter how sad, becomes boring to those not caught in its addictive caress.” Thus, at some point in our lives we have to confront adversity all by ourselves. when you do, remember that Healing is a life long process which starts by being kind to yourself. You must love yourself before you can love others fully. I pray that you discover this before you lose something more valuable. In our struggle to survive living with a disease or trauma which has greatly impacted our lives is to focus on the “cure” (be healed). Sometimes, sadly as it may occur with cancer patients or trauma victims, physical healing can take place only to expose our deepest darkest fears leaving us emotionally and spiritually devoid.

I have discovered that ironically the best way to heal completely and be free to live life to the fullest is to let go of the idea of finding a quick fix. The answers is not on the outside rather within us and it takes time. Many people go through therapies and treatments like yoga, bicycling, mindfulness, pharmaceuticals, acupuncture, etc. as if by partaking in these we will eventually reach a point where we can say I am finally – completely healthy and cured (from whatever ails us)!

Not so. This is not the end of the world or us for that matter. Not only is it okay to not be perfectly healed since it reflects life as it truly is- imperfect. We are a work in progress.

Instead on focusing on the bad- focus on the good and learn to compromise. Learn to let go of resentments and things that don’t nourish the soul, give you joy, or strength.

Remember, when dealing with an illness like in any relationship 3 rules apply:

#1 Neither one is going to be entirely comfortable all the time– we are all unique individuals, thank goodness if everyone was like me it would be very chaotic. The pendulum is always swinging back and forth in any good relationship- is a give and take – if one person is always in control then there are bigger issues with poor boundaries that need to be addressed.

#2 Decide upon a philosophy to tackle the illness – this does not mean you are not free to make decision as the situation arises on the spare of the moment -simply means you have an agreed upon common goal-

#3 There can only be one driver at a time– I am sure you are all familiar with the saying “too many cooks spoils the broth.” But, in order to enjoy the drive whatever the scenic route may be, there must be trust that the person in charge of steering will get you to the right destination safe.

Now, you can start living life with the fullest not dwelling on the past, focusing on the future but living the here and now. embrace life do things because they nourish you, they make you a better person not because you are trying desperately to be healed. always be grateful for what you have and the people around you who are willing to stay by your side and support you and share your journey victories and defeats.

Have a blessed week everyone! Image result for Dancing Quotes About Life

Sources:

Spiegel Amy, “Letting go of Perfect: women expectations and authenticity.” Foreword Smith, Angie. B&H Publishing Group, Nashville,TN 2012

Harvey, Cig (Aug. 2017): “Let it Go.” The Oprah Magazine, Vol 18 (8): 92-103

Nov 11

Caregiving is not for the faint of heart: 7 tips to make it work: By Maria De Leon

Comments 5

“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.

Jul 31

Hospital Adventures of a Parkinson’s Diva: By Maria De Leon

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Last week after having a very successful trip to Baton Rouge for their 5th PD conference, I was suddenly struck with neurological symptoms resembling a TIA (transient ischemic attack) like all good doctors for that matter ‘bad’ patients, I self-diagnosed and continued with my flight itinerary. Upon returning home, I took some aspirin and proceeded to call my neurologist of my bizarre events and went to sleep. But, before I could make an appointment to follow up on my symptoms with my doctor, I had another unexplained episode. This time resembling a ‘heart attack’. This was scary as heck! I then took myself to emergency room feeling lousy with chest pain, shortness of breath and mild tachycardia (fast heart rate) because I did not want to upset my husband who already had enough on his plate. don’t know how in really intended to keep from him since he is the only radiologist at hospital I went. of course as soon as my name came up, he was in the ER looking for me.

The initial thought of both consulting physicians was that my symptoms were related to PD. Although, esophageal spasms can occur in Parkinson’s disease causing severe chest pain which can radiate to arm, this is extremely rare and merits further studies to rule out more serious causes. Yes, women can die of heart disease and die more often than men because of unusual presentation.Also my medication Rytary can cause chest pains but no other symptoms; plus I had been on it for almost 8 months without problems. Thus, unlikely to be the cause of my new onset of symptoms.I was admitted for evaluation looking suspicious for a pulmonary embolism and proceeded to have a million dollar work up which again reminded me of the need for better understanding on the part of physicians and medical staff towards patients – particularly those with chronic illnesses like Parkinson’s. Also for the need of us patients to develop greater self-advocacy while maintaining an open mind regarding physician’s point of view and expertise.

Both sides, I discovered still have room for improvement…this coming from someone who is both patient and physician.

First, it is hard to be objective even if you are an expert when it is your health on the line. However, having said this, you and no one else is the authority on your body. Only You know when things are NOT right!

Second, you must advocate for yourself. If you know something is NOT quite right. Find someone that is willing to listen and understand your feelings.

Third, although it is our nature to get upset when someone dismisses us or does not have a quick answer for our problem -remember that we have a chronic disease which can complicate presentation of many other illnesses. They also complicate the treatment plan for such illnesses. Nothing is black and white …even if you only have PD and nothing else. Now imagine what is like being my doctor looking at my list of meds and diseases? A veritable headache. Not everyone welcomes the challenge as easily as I do. in the spirit of making the best decision plan for my complicated disease state, a day was spent deliberating best treatment option that would have the least complications and side effects (which I truly appreciate).

As my pharmacist came to Inquire regarding my medication list because as she put it “this is a very long list. You can’t possibly be taking all of these?!” To which I replied, “yes I am!” I did not want to shock her even further by explaining that she was missing 6 other pills! Use these opportunities to raise awareness.

Fourth, like in every realm of life there are always kind and not so kind people. Don’t take it personally. Be grateful for those who treat you kindly. Fortunately, there are always more whom are kind and willing to learn and care. Although, the haters can certainly make the days more challenging. It is best to laugh and move on. As I been doing regarding this one person who forgot her manners at home before coming to work and deal with sick patients.

There I was sound asleep for less than two hours, when in walks this person turning on all the lights stunning me and asking for my name. I was trying to get sleep out of my eyes while trying to orient myself to time and the scenario. Unable to read the clock correctly due to blurred vision, I asked her for the time, to which she replied in a loud voice several octaves from previous question, I might add, “Como se llama?” As if I had not replied to her answer of what my name was because I was both deaf and non – English speaking. I barely answered when she plunged a huge needle in my hand almost at a 90 degree angle to draw my blood. Needless to say my vein blew leaving a large hematoma for which she proceeded to blamed me.By then my sweet nurse came into room to sooth me and reiterated my request to be gentler and use a smaller needle.

Fifth, always have advocate with you when hospitalized that knows your condition if you are not able to voice it yourself. Plus, always carry your PD (other medical illness)medicines with you. This has saved many patients including myself because hospitals don’t always carry the medications you are taking or are able to administer them in a timely manner as you may need.

The hospital was never able to get Rytary or Neupro and they were not able to get my medicines squared away till 24 hours after admission. Fortunately, I had my own to take on a timely basis.

Never dismiss new symptoms as automatically being part of PD and be ready for sometimes extensive evaluations to get to the root of things. Remember to voice your concerns in a polite manner as you give the experts an opportunity to care for you keeping in mind that having a chronic illness that is systemic in nature can pose rather significant challenges and hurdles to overcome to achieve the best possible outcome which may take time to achieve as well.

May 13

Unraveling Complexity of Being a Chronically ill patient: by Maria De Leon

Comment 1

A decade ago, I would have sworn I was the healthiest person; sure I had minor inconveniences like thyroid cancer at young age and migraines since childhood. But my life on the whole was great! Not that is not great now just different…I took one medication for my thyroid and every so often I needed a migraine abortive medication. I rarely set foot on the premises of a pharmacy. I would take my thyroid mediation like clock work without much fuzz. I NEVER heard from insurance, pharmacist, or other doctors regarding myself. of course, I spent countless hours dealing with all of these regarding my patients. each year, the number of hours I spent on phone and written letters on behalf of my patients steadily increased by now most doctors with a busy practice like mine spend a great deal more time trying to get around the bureaucracy and paper work involved just to get patients what they need to get better. the most frustrating thing besides arguing with insurances about approval of much needed medications was arguing with them about approving benefits to cover their care especially in terminal cases. Too often the help came too late.

Now, I am a walking, breathing, veritable pharmacy – my purse has grown over the years just to accommodate the ever growing number of medications I require to function; which invariably keeps expanding. Each time I think I have stabilized, there pops something new to throw a wrench in the system. Just the other day, I spent the morning at yet another unforeseen doctor’s visit due to acute labyrinthitis from an ear infection and guess what? More meds were thrown in the mix. Now, I have been assigned both a nurse and a pharmacy specialist to my case.

First, where were these people when I needed them to help out with my patients care? Secondly, in theory having a past medical illness or chronic disease is not supposed to matter in the coverage of an individual by any insurance. Yet, in reality all of us who live with a chronic disease is being analyzed by some committee somewhere as to how much “resources” we are using. These resources which include medical, laboratory, ancillary, and pharmaceutical services are precious commodities which yearly are contracted to the lowest bidder. While, the premiums and out of pocket expenses continue to go higher as the coverage for those commodities continue to go lower for those of us who happen to have the misfortune of having a serious medical problem. Everyone who lives with PD and other chronic illness can testify to this fact.

After laughing out loud in disbelief for having NOT one BUT two specialized people dedicated to help with my care, I began to shake my head regarding the absurdity of our medical system. After speaking with these well meaning individuals who did not realized, I was a doctor, neither one had any answers to my REAL problems or concerns. No! I DON’T NEED SPECIAL EQUIPMENT, TRANSPORTATION, OR HOME SERVICES- ALL I NEED IS APPROVAL OF MY EXTREMELY EXPENSIVE MEDICATIONS AND TESTS so I don’t require ANY of the above and won’t end-up in the hospital as many of my patients have in the past due to poor coverage of medications and frequent changes dictated NOT by real medicine rather by pure economics!

So, after an hour each, they both politely stated they could NOT help with my problems. They could not convince the people they work for that these medicines are keeping me functioning and that perhaps might even help me return to gainful employment and at minimum are keeping me out of the hospital and getting worse medical problems if they were only able to approve the PET scan my physician ordered to make sure my cancer has not returned. But, to no avail. The answer was ALWAYS NO! But, will call you again next month at the same time. No wonder I like that new song of Meghan Trainor ” No.” “My number is no!, my name is no!, my {everything} is NO!” when I talk to the insurance companies…so do we need to let it go?

I hope we DON’T let it go otherwise we as a society will continue to hurt and suffer the consequences and end-up in a state not very dissimilar to the one in Mexico and other countries where socialized medicine has taken root.

I still cringe at the terrible experience my family underwent while my grandfather was hospitalized for a GI bleed in my hometown in Mexico. First, after having to transfer him to a “private” hospital because there were no medicines or even much staff at the government owned facility-the specialist he needed, not unlike what is already happening here in many smaller communities, was 5 hours away in another state and could not come for several days. So, he continued to bleed for which he required 14 pints of blood which by the way the family had to procure on their own because the government has no money to maintain a blood bank. He ended with 2 mayor strokes subsequently- which of course I witnessed personally and was helpless to do anything about since there was no treatment available for what he needed.

I am afraid that as the population continues to age and incidence of dementia, Parkinson’s, strokes and other chronic debilitating diseases begin to rise the quality of life for each individual will steadily decline in this country despite all the major medical and technological advances this country has unless we step up and demand change. please contact PAN/MJfox @ http://www.parkinsonsaction.org and after June 1st @ http://www.michaeljfox.org/policy

-let them know its not ok to have a monthly struggle just to get the medicines your doctor prescribed or have to choose between basic necessities and affording expensive medications which now include many popular generic brands which in some cases cost the same or more than the brand! and remember to just say No!