caregivers and chronic illness, chronic illness, parkinson's awareness month, parkinson's disease

Instructions not Included When it Comes to Caregiving: By Dr. De Leon

Instructions not Included When it Comes to Caregiving: By Dr. De Leon.

caregivers and chronic illness, chronic illness, parkinson's awareness month, parkinson's disease, parkinsons dementia

Instructions not Included When it Comes to Caregiving: By Dr. De Leon

Don’t dwell on the disease. Value the moments, the pearls of wisdom, their smile, their humor.” St. Elizabeth

seekcodes_659_26138     Caregiving is not for the faint of heart. I have had to be the caregiver for two of the people I love, my grandmother and father. Although the experience was extremely rewarding, I was left completely emotionally and physically spent when it was all said and done. Being a caregiver requires inner fortitude, perseverance and above all a great deal of love. Love for that person you are providing care for is the only thing at times that drives you and keeps you from losing your wits.  In dealing with my loved ones as a caregiver, I had my moments of frustration as many of you have in taking care of your own loved ones who suffer from chronic illnesses like PD. The problems usually arise from thinking we know what is best for them which may be in opposition of what they think is best for them.   Just because they are physically handicapped this does not mean they are mentally handicapped hence conflict ensues. This is entirely different when taking care of someone whose faculties have diminished as in those with dementia, we must then be the voice of reason. But when someone is still able to make decisions although in our opinion are not the wisest we have to find compromise to respect their wishes, keep their dignity, and maintain their safety.

So how do you decide when to step in and when to watch from the side lines (cautiously holding your breath)?

This question is extremely complicated of when to override their needs and desires for safety sake?

For example, my dad was very frail and getting extremely weak in addition he had fallen twice; yet, he insisted in continuing to use a walker instead of wheel chair. This entire scenario only made me cringe expecting to hear the sound of broken bones at a moment’s notice. Despite my better judgment as a doctor, I had to respect his wishes.

It is important not to fall into a trap as a caregiver of assuming what the person with PD needs. It is best to ask your loved ones their wishes. An honest and frequent dialogue can go a long way in maintaining the personal dignity of the care recipient or patient as well as that of the care partner who will not come across as a tyrant but rather as a truly caring individual.

So here are some tips I learned in providing care:

Learn to compromise– avoid disputes and old issues from getting in the way! During chronic illness especially as a loved one reaches end of life; this is the time to stick together! So as to make him or her feel like he/she still has some independence … instead of forcing the wheelchair in the case of my dad, I explained my concern for him of falling again and breaking a hip and ending in the hospital. Then let them decide based on the information.

Learn to reiterate your concerns in a compassionate manner – I explained to him that we had been lucky until now not to have broken any bones. But, as his bones were extremely frail and he was very weak any small insignificant injury even a simple bump from sliding off the bed could result in a hip or wrist fracture. However, if he did not wish to use the wheelchair, then we had to device another plan to maintain his safety. He agreed with this, he was then instructed to call someone first prior to getting up either from bed or sitting to alert them of his intentions of wanting to be mobile. He then was to sit at side of bed if reclining for few minutes rather than jumping up from laying (although  this was emphasized more for theoretically purposes just so that he  would remember to take it easy because in all honesty he could not jump anywhere when movements  were extremely slow, deliberate and  laborious). These recommendations can be used for anyone with mobility issues especially if getting orthostatic, dizzy and at risk of falling.  I instructed him on appropriate safe use of walker and asked for him to carry safety belt around so if he did slip it would be easier for me or my mom to catch or lift him up.

Learn to coordinate: some of us are better at this than others. If you are good at delegating and seeing the big picture- this is your calling. Nothing is more important than having a game plan! For instance, I am good at this … While my mom tends to the daily needs of my dad, I can step back and see what needs to be done so I can guide my mother and assist her in getting things done. For instance dealing with matters of insurance, are documents in place?  Are Wills done?  Over see funeral arrangements if dealing with end stage disease? Are other legal documents in order? Because, as we know when we are dealing with the task of caring for someone 24/7, we can become so overwhelmed we sometimes can’t see the trees for the forest. This is especially the case when death is imminent, or contemplating placing loved one in a nursing home. Sometimes our judgment can become clouded and we may become paralyzed with grief! Be the one that initiates conversation and steers it in a positive direction to get things done.

Learn to facilitate: emotions tend to run ramped when dealing with a chronically ill loved one.  At times, it is hard to step outside your situation and see things objectively. This is when a friend, pastor, social worker, healthcare professional or in my case a relative that does not live there all the time comes in handy. They can help provide valuable insight into the situation, give impartial advice to diffuse a stressful situation by offering prayer and even referring to other counseling services, support groups and other resources on line and to other community organizations that may be able to assist with specific needs. (I.e. help find a sitter/respite care). When I was caring for my grandmother who had end stage Parkinson’s she would at times get very belligerent and accuse me of holding her hostage since she was bed bound. Being a neurologist, I knew this was part of her illness I knew how to treat and did not bother me. However, when I was at the office and at the hospital having to deal with PD patients all day who were hallucinating and belligerent then come home to same scenario sometimes was a bit overwhelming. It was nice to have friends to talk to and even place her in respite care for a week so that I could decompress. Learn to listen: this is the most difficult task of all! Some of us hear but don’t really LISTEN. Listening takes special skills, understanding, and putting oneself in the shoes of the person living with PD. When we are in a stressful situation we all desperately need to be heard so everyone talks but No one LISTENS! Often times no words need to be uttered to have truly listened and made the person you are caring for feel special, unburdened, understood and loved. A simple kiss, hug, brush of the hair or hand, and even smile can go a long way!

The same rules apply for the caregiver; find someone who is willing to listen to your story. This simple act can allow you as a caregiver an outlet to relieve your own stress and open the door of communication and a way for you to ask for assistance in the area of specific need.

Lastly, learn to socialize: again if you are a leader or a take charge kind of person or event planner, this would be right up your ally. After all, we are all social beings most of us even the shyest of us thrive when we are bonding with others either individually or as a group. Therefore, it is important to plan social outlets to get yourself the caregiver out of a routine. Planning social gatherings with and without the person you are proving care for will help to diminish the risk of  depression, loneliness, feelings of helplessness, spiritual exhaustion which might lead to suicidal ideation in both patients and caregivers alike. The outings or get together will also help to remind those involved of their unique talents and gifts and bring closer together as a couple or family. One activity my grandmother always enjoyed was painting. So we would paint as a family. This was always fun and made us forget for a bit about the struggles we each faced on a daily basis. This is fairly cheap to buy paints, brushes and canvas at a place like Hobby Lobby. Now they even have coloring books for adults but even children’s coloring books are fun to do as a group. Help organize activities for family, individual etc. Put your imagination to work. Even if it means taking them out for an unexpected “ice cream” run, my dad loved this or whatever their favorite activity may be; in my dad’s case fishing (even if it’s just in bucket or fish tank because he got too sick to go outdoors fishing as he would have liked).

caregivers and chronic illness, chronic illness, parkinson's disease, parkinsons dementia

Keeping Track of Doctors Bills : By Dr. De Leon

” I am not telling you is going to be easy, I am telling you is going to be worth it!”

As many of you may already know, November is caregivers’ month; thus, I will talk about an issue that affects caregivers and patients alike.

The care giver has many responsibilities and roles in making sure that their loved ones needs are met. Among one of the biggest responsibilities a care partner or giver may have is being responsible for the financial stability of the Patient fully or in part. But, even when the patient is able to care for him or herself financially he or she may still need an advocate to help decipher the ever complex and confusing world of doctor and hospital bills.

This becomes more pressing as the disease advances and dementia begins to set in. Those of you who have a chronic illness or care for someone with a progressive debilitating  illness like Parkinson’s know that as the disease advances the need for services ( PT, OT, Pain doctors etc.) increases exponentially. Subsequently, the amount of bills you receive also increases at an alarming rate. The rate can suddenly shift to ‘a warp speed’ if your loved one ends up having procedures or being hospitalized; especially if the hospitals stay is lengthy.

In which case, you can find yourself being inundated in bills and paper work. This can drive a person mad trying to make heads and tails especially when the person you are caring for needs 24 hour care or pretty constant supervision in all other aspects of care from grooming to ensuring they take their medications properly.

Here are a few tips that I have learned to help simplify life. These can be used whether you are a patient or a caregiver.

First, set a side a special box or place where you will place all the mail relating to this subject/away from all other mail so it can be easily accessed.

Second, make sure that you know what your insurance covers in and out of the hospital before you have tests, procedures; become hospitalized; so there are no surprises. If you have Medicare go to Medicare.gov. Otherwise get a copy of benefits/coverage from your insurers.

Third, designate an area and a time when you will dedicate exclusively to this. once a month is good if not so many bills but if having ongoing procedures, hospitalizations, and doctors evaluations, you will most likely start receiving bills weekly if not daily therefore be best to tackle once a week to avoid getting yourself overwhelmed.

Next…

1) Make a proper binder to place all the (EOB’s- extended office bills) and label yearly. Also if hospitalization extends several months put color dividers to delineate various months. The same can be done if patient had doctor’s appointment or procedures extending various months.

2) Do not pay a single bill until you receive an explanation of benefits from your insurance/ compare it with doctor’s bill and pay only after they have paid their part. If you have secondary insurance have to wait till both insurances have paid. Which usually means you should not have to pay anything unless at beginning of insurance cycle when you have to meet your deductibles. (the beginning for your calendar  year may vary slightly but usually around the last quarter of the year or first quarter of the new year). For Medicare the deductibles are due at the beginning of every year.

3) If you detect a problem- call your insurance company customer- service first and make sure you get names and dates of whom you speak to and if checks issued get amounts, to whom, dates issued and check numbers.

4) Once a certain bill is paid – make sure you check off ( and remove from your pile /box and file into binder in section labeled paid) so you don’t pay again or have to deal with it again because sometimes may get duplicate! Look at it carefully for services and dates!!! Use a red pen or marker to check off

5) If the problem is at doctor’s office or hospital, make sure you speak with billing person directly.

6) Always take good notes.

 7) Usually insurances give discounts so pay close attention and if doctors office or hospital tries to bill you for difference when you have received a discount, send them copy of EOB. If no discount listed in your invoice call your insurance to make sure whether one should be applied.

8) Always make sure that bills are sent to correct insurance with right policy number and that everyone has correct spelling of patients name to avoid claim errors.

 9) At times claims are kicked back due to coding errors, so always inquire if there were any problems with codes causing it to be denied which you could address with your doctors or hospital billing office.

If you remember these simple tips: you can avoid going mad when bills come in daily. Happy trailing’s!!

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Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); 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 www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at defeatparkinsons101@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com

 

 

caregivers and chronic illness, chronic illness, depression and suicide, fall prevention in parkinsons, falls in parkinsons, parkinson's disease, parkinsons health and beauty tips

Tips for Making Life Easier for Both Caregivers & Chronically Ill Alike : By Dr. De Leon

Last month I have been dealing with my dad’s terminal illness. I have had my moments of frustration as many of you have in taking care of loved ones with chronic illnesses like PD because sometimes what we think is best for them is not what they think is best for them. So how do you decide when to step in and when to watch from the side lines (cautiously holding your breath). This question is extremely complicated of when to override their needs and desires for safety sake?

For example my dad is very frail getting extremely weak and has fallen twice but still insists in using a walker instead of wheel chair which makes me cringe. It is important not to fall into a trap as a caregiver of assuming what the person with chronic illness or PD needs or wants. It would be best to ask that person what their wishes are. An honest and frequent dialogue can go a long way in maintaining the personal dignity of the care recipient or patient as well as that of the care partner who will not come across as a tyrant but rather truly caring individual.

Learn to compromise– avoid disputes and old issues from getting in the way! During chronic illness especially as a loved one reaches end of life; this is the time to stick together! So as to make him or her feel like he/she still has some independence …so instead of forcing wheelchair in the case of my dad, I explain my concern for him of falling again.

You must Reiterate your concerns in a compassionate manner – I explained to him that we had been lucky until now not to have broken any bones thus far. But, as his bones are frail and weak any small apparently insignificant injury even a simple bump from sliding off the bed can lead to a hip fracture or wrist fracture. However, if we are to not use wheelchair, then we must have a safe plan in place. So, he was instructed to call someone first prior to getting up either from bed or sitting to alert them of his intentions of wanting to be mobile. He then was to Sit at side of bed if reclining for few minutes rather than  jumping up from laying ( although  this is more theoretically purposes just so that he remembers to take it easy because in all honesty he is not jumping anywhere when movements are extremely slow, deliberate and  laborious); these recommendations are meant to safeguard him from getting orthostatic, dizzy and avoid subsequent falls. Furthermore, I again instructed him on appropriate safe use of walker and asked for him to carry safety belt around so if he does slip it would be easier for me or my mom to catch or lift him up.

Learn to coordinate: some of us are better at this than others. If you are good at delegating and seeing the big picture- this is your calling. Nothing is more important than having a game plan! For instance, I am good at this … While my mom tends to daily needs of my dad I can step back and see what needs to be done so I can guide my mother and assist her in getting things done. For instance dealing with matters of insurance, are documents in place?  Are Wills done?  Over see funeral arrangements if dealing with end stage disease and terminal as is my dad’s condition? Are other legal documents in order?

Because, as we know when we are dealing with the task of caring for someone 24/7, we can become so overwhelmed we sometimes can’t see the trees for the forest. This is especially the case when death is imminent, our judgment can become clouded and we may become paralyzed with grief! Be the one that initiates conversation and steers it in a positive direction to get things that need done taken care of.

Learn to facilitate: emotions tend to run ramped when dealing with a chronically ill loved one.  It is hard to step outside your situation and see things objectively. This is when a friend, pastor, social worker, healthcare professional or in my case a relative that does not live there all the time comes in handy. They will ( I-you can ) provide valuable insight into the situation, give impartial advice to diffuse a stressful situation by offering prayer and even referring to other counseling services, support groups and other resources on line and to other community organizations that may be able to assist with specific needs. (i.e. Help find a sitter)

Learn to listen: this is the most difficult task of all! Some of us hear but don’t really LISTEN. Listening takes special skills understanding and putting one in the other person’s shoes. When we are in a stressful situation we all desperately need to be heard so everyone talks but No one LISTENS! Often times no words need to be uttered to have truly listened and made the person you are caring for feel special, unburdened, understood and loved. The same rules apply for the caregiver … ask them to tell you their story. This simple act can allow them an outlet to relieve their stress and open the door of communication and a way for you to offer assistance in the area of their specific need. (E.g. My dad still wants to maintain some semblance of dignity and independence/ mom wants not to have  him break a bone and hurt herself in the process if he falls). So, we came up with specific compromises on how to do things like grooming in a manner that is safe and convenient for everyone.

Lastly but not least learn to socialize: again if you are a leader or a take charge kind of person or event planner, this would be right up your ally… After all we are social beings …most of us even the shyest of us (we) thrive when we are in bonding with others either individually or as a group. Therefore, it is important to plan social outlets to get the caregivers out of their stressful situation from time to time to avoid depression, loneliness, feelings of helplessness, spiritual exhaustion which might lead to suicidal ideation but also to remind them they are individuals that have unique talents and gifts. It is important to Do the same for the patient – (to avoid same type of feelings) the social activities can be done together or separately-best if done separately from time to time.  Help organize activities for family, individual etc. Put your imagination to work. Even if it means taking them out for an unexpected ” ice cream ” run or whatever their favorite activity may be like in my dad’s case fishing (even if it’s just in a pond, bucket, or fish tank because he is now too sick to go outdoors far away from home fishing as he would like) and my mom -shopping! (Of course don’t forget to get someone to watch patient while care giver goes out).

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Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); 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 www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at defeatparkinsons101@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com

caregivers and chronic illness, chronic illness, parkinson's disease, parkinsons dementia, parkinsons health and beauty tips

Things I Learned About Being a Caregiver While Taking Care of Those I love

One person caring about another represents life’s greatest value.” Jim Rohn

It seems as if the whole last decade has been an unending parade of sick people with chronic illness revolving though my doors.  So, I have become somewhat of a caregiver guru… I think that these events along with my own illness have been entrusted upon me to develop one single trait ….PATIENCE.

I was never a very patient person by nature as are most type A- personalities who like me thrive on being in charge, in control and being able to multi-task.

Being a caregiver has challenged all these notions and made me learn to prioritize things in life. Taking care of someone is difficult no matter the level of care you provide. But, as you already know the task becomes increasingly more difficult and challenging the older, more disabled,  and more chronically ill the person you are providing for is; even simple things like brushing their teeth can be a shore if they have dyskenesias,or dystonias involving the head and neck. Been there done that! Electric tooth brushes work best at any rate for most Parkinson patients. And by the way, if they have dystonia helps to find their ‘geste antagoniste’ (a sensory trick applied by touch to another part of body to temporarily distract or interrupt the dystonia).

Dressing, feeding or helping someone ambulate is not so bad if you only have to perform once or twice a week. But, it is a different story when they are completely dependent on the caregiver to have their basic necessities met. Dressing someone who is completely immobile, rigid and unable to assist can make a weight of 100lbs feel like 300. This is when you realize you simply can’t have control of the situation all the time, especially when dealing with chronic illnesses that may be exacerbated by outside factors. You must learn to roll with the punches and take the good with the bad …patients WILL have good & bad days. Thus, you will have stressful days and not so stressful days! For instance, I have discovered that Parkinson patients tend to have increase in pain, & stiffness during cold weather. Take necessary measurements to avoid extreme temperatures, use sensory tricks, or discuss Botox injections or baclofen pumps if dressing is difficult because of rigidity despite adequate dopa levels or DBS with your health providers to help easy your stress and help care for your love one in a less disruptive way to all. Implementing some of these techniques will also keep you from pulling your back. Also, talk to your physician about a referral to the Physical Therapist and Occupational Therapist, they can help evaluate for the patients needs at home and lend/or rent you equipment to use at home to make your life easier.

You also, must learn like I have that in order to preserve your sanity and the peace of those around you must relinquish control to someone else from time to time…simply can’t be the savior all the time! Taking care of someone especially 24/7 – Is a team approach! Surround yourself with a group of good friends that are trustworthy and can lend a hand in the care of your loved one.

I would not have been able to survive until this point without my best friends support …when I had to take my dad to doctor when he was undergoing chemo and radiation or my grandmother who suffered from PD…..my friends would step up and pick up my daughter from school…care for her…drive her to where I was if needed. During, daytime when I still had to work; I engaged services of a close friend to sit with grandma until I got home.

Besides patience, the number one ingredient to persevering as a caregiver is LOVE! When the going gets tough the only way you will make yourself go even when you are spent, heartbroken, at your wits end is love for your spouse, partner, family member, or child for whom you provide care.

Love gives you courage, strength to go that extra mile, smile when you feel like weeping and ability to rise above your situation. In the end is the commitment that matters even if there is nothing to be done… Love is what gives us all staying power…think about it… As Dr. Arthur Kleinman quipped “I am with you in this [journey] ….right until the very end.”

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Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); 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 www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com

All materials here forth are property of Defeatparkinsons without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr.De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at defeatparkinsons101@yahoo.com

alzheimers, parkinsons dementia, parkinsons health and beauty tips

Health & Beauty Tip # 14: Art of Caregiving -II By Dr. De Leon

Health & Beauty Tip # 14: Art of Caregiving -II  By Dr. De Leon

” 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!

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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  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

alzheimers, parkinsons health and beauty tips

Health & Beauty Tip # 13 : The art of caregiving by Dr. De Leon

Health & Beauty Tip #     : The art of caregiving by Dr. De Leon

Do  what you can to show you care about other people, and you will make our world a  better place.“-
Rosalynn  Carter

Today, I am writing about a topic that has gotten me so enraged, I could no longer keep quiet.  Few blogs ago, I started to mention the difficulties navigating a marriage when a spouse becomes chronically ill and the overwhelming evidence that the great majority of these couples end up tragically in divorce at an alarming rate higher than our already scandalous national divorce rate.

Well,  today I say…the selfishness MUST end!!!

Marriage was supposed to be the union of two souls “for better or for worse in sickness or in health.” No where was it written that marriage could be terminated if one partner was no longer attractive, healthy, working,  or “abled.”  When did it become all about OURSELVES! Have we forgotten the biblical principal that is better to give than to receive?! ( Acts 20:35)

Seems like our whole society is about instant gratification – if is not pleasant  or slightly uncomfortable we want nothing to do with it! I  am truly sick and head it up to my eye brows with SELF!

The theory is that we must do something for ourselves, to ourselves, or with ourselves problem is that this way of thinking leaves no room for anyone else in our lives much less time to be a caretaker.

As I have said before in previous blogs, my advice comes from a broad experience not only as a professional – neurologist but also as a Parkinson’s patient, and caregiver!

Whether you are a man or woman,  we  all need love and validation to thrive. Remember, that Even the strongest person needs encouragement, support and loving embraces or they too will crumble eventually!

During the time I cared for my grandmother who had Parkinson’s, I had a 4 year old,  a full solo practice and was in the middle of building my office. Even though, I had hospice care for her 7 days a week, a sitter which cared for her while I worked  along with the full support and cooperation of my husband, I barely survived as did our marriage!

Therefore, If caregiving was easy than it would not be an ART because you can’t have art without HEART.
Being end stage, she was completely bed bound. On top of this, she had severe tremors which made feeding herself extremely difficult which required someone to feed her. The responsibility usually fell upon me which I gladly did….but was time consuming. This meant that instead of finishing hospital rounds at 9, I would be working until midnight. She also had severe hallucinations……which would result in some very interesting conversations with my child that sometimes ended in fighting over dolls and other toys. I had to step in an referee and explain to my toddler that grandma was sick ( and in her mind the doll was the baby she had lost as a young woman!)
There was NEVER a DAY OFF!  or  quiet time to myself!  Much less time as a couple or family! People were always at my house!  I was in a PERPETUAL ROLE of a CAREGIVER given my profession! Always taking care of someone even on my supposed day off!

I would be tending to grandma’s hallucinations as I would walk out the door, only to walk into office to evaluate someone with same problem to continue hospital rounds on same confused psychotic Parkinson patients only to return home to same scenario!..

It was a Non ending cycle. Plus her room in my house looked like a hospital room and towards the end was beginning to acquire that same smell that you first notice when you walk into nursing home! No matter how many febreze and air fresheners and perfume bottles I used that’s because all the hospice workers were spilling things on the carpet each time….carpet had to be removed! I could not seem to get away from it all! It was disheartening because even though I loved her and no one else could manage her medical problems like me or calm her when she got confused. I needed a few hours to my self without any demands or pressures from anyone to recharge and refocus …
I did not know at the time, but she gave me the best gift ever ……how to become a better human being and doctor!

Since, she was always a GREAT cook and loved to eat interestingly enough most of her hallucinations involved cooking! I would come home and she would say could you please serve me the upside down cake I just made or take out of the oven and give me a piece. So, as to not agitate her and to please her I would scurry to the kitchen to bake or make. Mind you I have never been a great cook!  So, I learned from her …I would ask well, what ingredients does that require and so on… as time went on I got better. I would be a proud day, when she would comment ,” I out did myself today!”  If she was not pleased with my cooking, I would simply say, ” well grandma, tomorrow you can try again!” She would be satisfied …..

my daughter learned to play nice with her grandma and color with her and play dolls and dress up….memories still remain and we both still laugh and are happy to have had chance to be with her.

Soon, I learned to pay closer attention to the caregivers in my practice and started noticing all the same signs of fatigue, bags around their eyes, withering of spirit because we forgot that  if the person in charge, captain making all the decisions, the caregiver in this case, if he/she goes down so does the ship!

Running around putting out flames and solving everyone’s problem can be exhausting kind of  like having to walk on crutches by leaning on them constantly—-leaves you bruised and sore!

So, I tell all caregivers have alone time daily (even if its just one hour of the day ) if not possible at least once a week….the spirit needs recharging more so then our bodies. Look for ways to support, encourage, build up, and stimulate your loved one-all from the heart! Make it fun!  Use what is around you….the simplest things can bring so much joy what matters is your time TOGETHER!!!!! The MEMORIES being forged!

remember- the key to being a great caregiver with heart is giving  hope and of yourself….one life does makes a difference …holding on matters and being kind to others pays off…treat others as you would be treated…. instead of focusing on yourselves look at others around and regard them ( your loved ones) as more important than yourself!

“”Sometimes when faced with an intractable problem, the brain is not the one to solve it but rather the  heart “- ( perception)

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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  www.pdf.org  or at www.wemove.org