Rantings of a Parkinson's Caregiver

Name: 
RosaL
Location: 
New York
Caregiver Relationship: 
Spouse
Living Arrangements: 
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Primary Illness: 
Parkinson's Disease

RANTINGS OF A PARKINSON’S CAREGIVER

 

Looking back life had so much to offer: love, adventure, excitement, surprise, romance and companionship.  Looking ahead life is dull, unimaginative, just plain sad.   I married young - but well.   He was my friend my lover my soul mate.  He was full of life: adventurous, a spur of the moment kind of guy, loved his car, loved his paddleball, sometimes I was jealous of the time spent on cars and ball.  But, that was one of the many things that I loved about him, his passion for things he loved - like me. We would dance and go to the beach, ride our motorcycle, drive with the top down till the first snow, play paddleball, go to drive in movies in a sewn together sweatshirt. Drink and party. Every day was special.   Even after settling down and having children buying a house and a dog even after the chores that had to be done for the lights to get turned off at night; even then, life was exciting. Night time talking, cuddling, loving each other like only 2 people who really know each other can.  Looking back I loved my life - so then the hard times hit.  Not only hard times in business but in life.  Parkinson's   Oh boy, no one prepared me.  I didn't know how I would handle the unknowns but my parents taught me well, and I chose my man well.  I was asked so many years ago why don't you leave you are young why would you stay and all I couldn't think of answering is I love him I would never think of leaving. He is so good; he is the man, when my eyes are closed, I still see as young and vibrant and sexy. So then came hours at doctor’s offices, miles and miles driven, cross country for pet scans and studies, surgeries, tied down on a hospital bed for months, visiting twice a day every day, working, driving our kids around, 5 brain surgeries – turmoil!.   That’s all in the past, our kids are grown up and chasing cures has come to an end.  When I get told that I am strong I think I am not the strong one, he is. I don't want to be strong I would like to be taken care of; I want someone to say they will make decisions. I want someone to tell me the future.

He never gives up, his mood is never down. He is an optimist he always has a smile and a joke and my God he is wonderful and I love him so. Talking about God- you got it wrong- he doesn't deserve this disease. If you are a benevolent God then give the bad guys all the bad stuff. You make it hard to believe and I am not sure I do anymore. I digress. 

So now to the future.   The dreams of youth and prosperity are behind us. The thoughts of travel, relaxation or retirement that we spoke about so long ago are gone and didn’t materialize. Everyday is the same, sort of. No dreams, no hopes, just wanting to help and not always wanted. Trying to make every day count but usually disappointed. Seeing my strong husband lose everything he ever loved; driving, working, playing ball, walking, swimming, reading, lovemaking, everything taken away. Slowly taken away.  We jump through every hurdle together, that is the close time we have, trying to stay at the point we are at and not to get worse.  But it will get worse, it's inevitable.  I am the strong one who handles every rotten thing that is tossed our way. No one knows how much I crave company, friends to talk to, friends to do things with but few ask. Good friends are few, my fault I guess I don't know how to open up and let anyone in. Very few call and ask us to go do something that might be fun like the movies, or a museum. I get it we are to much work.  Have to park close, have to find a bathroom, can’t push a wheelchair to far ( we are all getting older), watching him fall, are there stairs? etc. I don’t want to be a burden on anyone else’s plans.

We are lucky, we have grandchildren, 7 of them. They are great, they are fun, they need us when they are young, but, as they should, they get older and need to live and grow and need less and less of the older folk.  That is not a complaint just an observation. It is very special when they want to spend time with us and come to visit all on their own.

I jump at the chance to go anywhere whenever anyone asks me. To the store, to the park, to sit in the car so that you don’t have to find a parking spot or to walk the dog.  I try to go where I am not reminded of the boredom of my everyday life, anywhere with someone to have company and conversation, yes I talk to the dog.  I jump at the chance to shop or travel to visit or help out.  Most of the time we go together when, on the occasion that I go without him, I feel guilty and never at ease. My Mom or Dad would never leave their spouse and go out with friends.  They would stay home be complacent with their lot in life, most of the time happy staying home with each other.  They were European parents, that is what I saw, that is how I was raised. But now, 2015, I want to talk to people do things have fun and friends so I try. I go, rarely, but I am miserable he isn't out and about, he isn't enjoying, he is home and I can't enjoy.  He was the one that loved huffing out of the house to do things, fun things with people, he was and is a people person – that too has been taken away very few people come to visit with him. Everything used to be fun - it is getting harder to remember.  Now I watch him, tell him how to walk, tell him how to talk, tell him what to do what not to do.   I don't like myself around him and yet I love him with every ounce of my being.  What scares me the most is losing him while he is still breathing. Not being able to talk, not being able to laugh, not be able to lie next to him without being hit in the head by a dyskenetic arm or squeezed so hard that a bone breaks.  Right now I can't seem to even enjoy the times we are together or out doing something. I often have tears and say I have allergies. I love my shower that is place I am alone to cry I never cry in front of anyone; I am the strong one (ha). Nobody would notice anyway.  I once read a really sad letter that my grandmother wrote, she was soooo lonely after her husband died.  She never spoke of it, she was strong for the rest of us but she was alone, I am not alone I have my husband, my friend, my lover why do I feel so lonely.

He was diagnosed 31 years ago, he is an amazing person with much still to give, he prepares dinner so that it is ready when I come home from work, I always get a smile and a kiss.  We “walk” around the block and get a little sunshine on our faces, we play cards and backgammon he is my friend, I need him, he still makes me feel loved you know the warm fuzzy kind of love. Now we go boxing for Parkinson’s twice a week.  He is the least mobile, has the least balance of the group so I can’t let him go by himself.  I stand behind him and catch him when he stumbles.  He loves it so. He works out, he is with people he feels energized – I hate traveling to the class. Sometimes, in the rain, it takes 2 hours to get there and an hour to get home – that’s after a day of work.  One friend said she wouldn’t do it, she wouldn’t take her husband so far to exercise and in my mind I knew she was right, she wouldn’t, and that is probably why she wasn’t given my life.  That is why she gets to have a retirement to enjoy travel and doing things with friends and waking up without the stresses of a spouse with Parkinson’s. Great, I am strong and I can handle the awful things thrown at me, aren’t I lucky.  I wouldn’t think of not finding a way to do anything that would make him happy, and if he is happy so am I. I am not saying that I am happy driving to and from everything, I have bad days; I lose my cool and say things out loud that I am sorry for an instant later. But he knows, he knows how much I love him, and better yet, how much I like the person he is.  Yes, he is, not was – he is my husband and best friend.  Everyone wakes up and doesn’t know what the day will bring but most can wake up and look forward to the day’s unknowns. We have had 31 years out of 48 wedded years, of waking up thinking of what unknown will happen today not in a positive way in a fearful way.  I should rephrase that I wake up with a gloomy outlook, he does not, he is always up and looks forward to the day.   I am happy to hear him call me at work in the morning to say “hi, I didn’t sleep well and I love you” and “I will see you later”.

Enough.  I am not one for sitting in a group and listening to someone else’s problems and I really do not want to tell strangers how I feel. So this, this anonymity, this has helped me and hopefully if anyone is interested will help them to know that they are not alone.

P.S.   It is now 2 years later – we have celebrated our 50th Wedding Anniversary.  Can’t believe how fast the time goes by.  We had a great, happy Anniversary with all our kids and grandkids, spending the day and night roaming around the Statue of Liberty, Ellis Island and out to dinner.    We are still going boxing, 2 times a week. We spend more time at home, I can’t really push him around so it’s easier to just not make outside plans.  I am sad more often, even my kids say I look sad and ask what is wrong….. I don’t really have an answer; it is just the way I am.  With all my ranting I just want to say, I would love to be able to change the life I lead but if it meant that I wouldn’t be married to the same man I wouldn’t change a moment.  

Wish List: 
A cure- so I (and so many others) don't have to worry about our children and grandchildren getting Parkinsons