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

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