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)
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 www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org