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

“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.

Nov 08

Feeling Distressed Today? by Maria De Leon

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Lately, like so many of you, I too have been feeling distressed- not being able to show up on time to events, or able to attend prior commitments. I used to be the life of the party and a person who could make plans months and years in advance and always able to keep all my commitments. I know that some of you out there living with chronic illnesses and Parkinson’s for a long time know exactly what I am talking about. I have heard many of you complain about the disappointment and distress felt when you or your loved one are no longer included in invitations to parties, gatherings, dinner etc. because you are also unable to always show -up. It’s rather an unnerving feeling knowing that people don’t count on you any longer or even expect you to show up.

While trying to get my head around these feelings experienced by all of us at one point or another when living with an illness like Parkinson’s, I began thinking about my favorite place- the beach.

I you are like me one that enjoys walking down the shore barefooted getting your feet wet as the waves dance around, you probably have taken inventory of common things found on the beach as you have taken many a leisurely promenade.

You most likely saw pier posts covered in barnacles, distressed boats and oxidized iron as you strolled on by. In another time, like us, they were pristine and remarkable to behold. I want all of us to remember and emphasize the fact that although these objects like us (or rather the way we feel sometimes) are worn, tired, chipped, dented and not so pretty to the naked eye are still Beautiful!

This is because, like us, these objects wear the scars of time, hardship, and experience with pride and genuineness. Perhaps, after the waves of PD or caregiving have pelted your body over and over through the years, you too are feeling like these distressed items. Maybe you once had a great career before PD; but even though it might have been a choice to leave it or make necessary alterations- they no longer exist in their previous form.

Like me you are also completely at peace with your life choices given the cards we have been dealt, yet there may still be days when you might feel alone and distressed. Slighted by someone’s lack of understanding, compassion, or feeling excluded may cause the ‘what-ifs’ to creep in.

But, we must not give in to guilt, sadness, much less anger. However, consider this- the only way an object gets distressed is because it has been the best in its field; therefore continuously used and of service. You have been useful and of benefit to more people than you will ever realize and you have the marks to prove it. Just like the distressed furniture found on an elegant and gorgeous beach home invite us to rest and enjoy the view thus contributing to our life’s story.

The same is true for us who are feeling worn out- you have and persistently contributing much to make someone’s past, present, and future better. Your empty seat at a business meeting, lecture hall, medical team, football game is only an indication that you have been instrumental in forging the next generation of caregivers, advocates, volunteers, citizens, and professional people. Remember, just because at the moment you are not at the table of the ‘movers and shakers’ that does not mean that you are done or finished with the work that God has put in your heart or is your destiny to complete until we are all called Home!

Let us instead dwell on the prospect that our ‘what-ifs’ might at some point blend into the ‘what-now’s.‘

Walk rather, on the beach or wherever you choose, always with head up high displaying your marks of distinction- which are a confluence of both your hardships and victories knowing that the past chapters were purposeful and of great impact. So, don’t try to fit in or please a crowd to avoid feeling distressed instead be your genuine self proudly displaying your years of wear battling PD along with your very own colorful bright pink eggs – like the ‘leafy sea dragons’ who although they are able to camouflage their eggs choose not to.

Go ahead, embrace your Parkinson’s disease or whatever other illness you might have and be yourself. Those that love you and matter will always be around to comfort you and support you in times of need and will always have a seat reserve just for you!

Oct 26

Lighthouses: by Maria De Leon

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…”though I sit in darkness, the Lord will be my light.” ~ Micah 7:8 NIV

I love lighthouses. Whenever I get a chance to travel to an area known for their lighthouses, I never pass on the opportunity. These grand structures are majestic and mysterious in nature for the power they hold; yet despite their veritable importance they always stand aloof, detached and solitary. However, these magnificently stoic architectural works of art, since no two are alike, serve a very distinct function for those in need.

Sometimes, as in living with a chronic illness like Parkinson’s disease we can become so overwhelmed that we are no longer capable of identifying treacherous terrain in front of our own eyes. If we do not heed the warning of others who have a lighthouse view, the passage can turn unsafe and even dark.

Although, caregivers who are mostly women are increasingly stressed in direct proportion to the number of years spent in the “business” of giving/providing care when help is offered, the extra assistance is not readily accepted as was the case in the care of my father. One of the main issues is guilt. Many caregivers feel ashamed or guilty in admitting they require outside help; thus might even turn it away when offered or not actively seek it. The second problem I encountered in my patients as well as in my family was a sense of duty and responsibility to ease the fears, anxiety, and shame the patient may feel as he or she is losing independence and unwillingness to appear weak in front of a stranger. this was my dad’s problem who refused outside help because ‘no one would take better care of him than my mom and I.”

Here are a few tips to help spouses, care-partners, and caregivers recognize and accept outside assistance by helping them work out their fears and ambivalence.

First, we must convey to them that the perspective is much different and broader with a myriad of options when standing at the top of the lighthouse with a clear view of everything than when in the seashore in the dark and feeling alone.

The temptation to strike out on our own is always present and stronger especially in those of us who are used to taking care of everything and everyone. Initially, more so if the person is very adept, like a ship that disregards the lighthouse warnings, will continue to progress and maybe even be successful in the day to day care of their loved one for a time. Ultimately, causing not just one’s one destruction or demise but that of our loved one whom we are trying to protect; because if you are not well then neither will your loved one who then might have a quicker descent.

Therefore, learn to swim parallel to the riptides heeding the following warnings from the lighthouses in your life to a happier more successful outcome for both you and your partner.

Recognize the warning signs:

Irritability– if you find yourself often frustrated at the person whom you are supposed to care for, including neglect or abuse ( verbal, emotional, physical) -NEED HELP ASAP!

Depressed– you are experiencing symptoms of depression yourself lasting more than 2 weeks- especially if wanting to die, harm yourself or worse harm the person whom you care for, this includes wishing they were dead or would die soon.

Others are worried or concerned about your coping– friends, family are noticing changes in your mood or behavior.

If you find yourself in this group:

Allow yourself to feel guilt followed by relief- forgive yourself- don’t be so hard on yourself. You CAN NOT DO IT ALL. NO BODY CAN BE ALL THINGS TO ANYBODY!!! ONLY GOD!!

Talk to your physician, a counselor, a spiritual leader.

Go to a support group

Go to a psychologist/psychiatrist

Start making plans for yourself again as you redefine your role as caregiver with assistance/new found help.