Feeds:
Posts
Comments

Posts Tagged ‘parkinson’s’

Being a home caregiver can get a bit claustrophobic. I cared for my mom in our home (she had Parkinson’s, heart disease and Alzheimer’s) the last two-plus years of her life. We had some home health aides but most of it was on me–24/7. I didn’t have the luxury of picking up my keys and purse and walking out of the house any time I felt like it, or even when I needed to. I grew jealous of my husband who got to leave for work and my kids who took off for school, dates, or part-time jobs. Jealousy is a nasty habit.

I used to sarcastically gripe that I was doing time in Sing-Sing and planning a prison escape (the humor aspect gave me some relief but it also allowed me to hear myself out loud). Some days everything in me wanted to run–and yet I had chosen to care for my mom. Why was this so horrible? She needed me and I was the only one.

Her insurance had said that Alzheimer’s didn’t require “skilled nursing care,” therefore didn’t cover it. I cried that day. I felt I had no way out. I didn’t want to take my mom to just any home and leave her there–I had to know she was cared for, and it seemed like I was the only one. What got to me was my lack of choice–which started with me.

And then I saw this beautiful photograph of a cloister. I’m not Catholic, but I’ve long admired a monk’s or nun’s dedication to live in a serene, dedicated environment. Cloisters are peaceful, safe, a haven in the midst of a chaotic world. It’s not that a monk or nun can’t leave–but most stay–the ones who chose this life of their own accord.

That’s when I decided to stop thinking of my life as serving a prison term. I have a good home, a lush yard, and I’m doing something I believe in. I looked around–at the books, the unfinished art projects, the exercise ball and treadmill, the stocked pantry–this isn’t a shabby place to be!

Just that shift re-centered me. I pulled books off the shelf I’ve owned for years but hadn’t got to read. I pulled out a painting I hadn’t finished and started following a couple of Food Channel chefs and gaining some culinary skills. I got out the binoculars and mom and I started watching a pair of cardinals raise their babies in a nearby nest (I’d have to hold the binoculars for her, but she caught a few glimpses).

This one shift–from prison to cloister–gave me a small measure of peace and a grateful heart (but I still snuck a spoon from the kitchen utensil drawer–in case I need to dig a tunnel).

~Carol O’Dell

Author of Mothering Mother, available on Kindle

Advertisements

Read Full Post »

Being a full-time caregiver for several years and going the “last mile”has taught me a thing or two. I allowed (not just physically, but emotionally and spiritually) my mom to pass in our home and that has changed me. At the time, when I was in the thick of caregiving 24/7 and having to get up and play “prison guard” to my mom who had Parkinson’s (thank God because it slowed her down) and Alzheimer’s (which revved her up) and heart disease (just to throw another kink in the game plan), I spent most nights hitting my bed only occasionally as if it were a trampoline. In those grueling, full of worry, can’t make it better no matter what I do, nights and days I wondered at times if I would survive. I did, and I’m profoundly grateful for this life-changing, push me to the bitter edge experience. This gal learned a thing or two.

  • I learned not to be afraid of disease. Parkinson’s and Alzheimer’s I’ve seen what they can dish out, and it’s not pretty. They’re bad, don’t get me wrong, but I know the terrain and I find we’re most afraid of the unknown. I hope to figure out how to deal with whatever grenades life throws me.
  • I want to grab life with gusto. No guarantees in this world. So spend your money, take the trips, laugh with friends. Love big and hard and take risks–the good kind. Do it now. Arbor day, Chinese New Year’s–life’s for celebrating in big and little ways.
  • Stand up for myself–and for those I love. Caregiving comes with a zilliion big and little decisions. It’s easy to be bullied by the medical community, by other family members, by the “shoulds” in your head. I learned to stand up and stand behind my own decisions. It’s easier to blame others, and it takes a big girl (or a big guy) to have the guts to stick to my own convictions.
  • Love what is.Pain comes from the fight to make things a certain way, when we can’t let go of what was and walk across the bridge to what is. I thought my mom was back in my life in such a big way so we could “fix’ our relationship–work through our hurts and misplaced expectations. Wrong. I learned to love her, to love me, to love us–as is.
  • Laugh–or scream–but do something to release those runaway rollercoaster emotions. It’s time to stop holding it all in. Sorrow, guilt, frustration, resentment–it’s all there for a reason. They’re clues to help us know what’s going on in our heads and our hearts. But they’re toxic if they’re stuffed down and not allowed to breathe.
  • Do something I’m proud of. It’s time to leave the world a better place than I found it. I want to be known for something. For making a difference. I want some small sliver of the world changed for the better–because of me. I’ll let you know what sliver grabs my heartstrings next.
  • To stop caring what others think. Get a nose piercing, cut my hair down to the nubs, paint my front door purple and my mailbox lime green, dance under the stars, speak up and speak out when I see an injustice–that’s how I want to live now. That’s how I want to be remembered. Conformity sucks. In the words of Nelson Mandela (I believe he quoted it from Marianne Williamson), “Why are you trying to fit in–when you born to stand out?”
  • Nature heals. Nothing brought me more comfort than the sparkle of light on water, a bird’s wings whirring overhead, a breeze lifting my hair and reminding me to stop for a moment and take it all in. When sorrow slams into my chest I hope to remember to fall into the earth and ask it to take from me what I cannot bear alone.
  • To tell our stories. I wrote every day I cared for my mom. I wrote to stay alive. I wrote to figure out life. I wrote to remember our journey. Those journals became my book, Mothering Mother, but I wasn’t writing to get a book deal. I was writing to capture moments, to pick them up like a prism and look at each facet.
  • When death comes, I hope to dance my way to the next realm, not fight it. I hope I’ll have a bit of a heads up and let go of this world with a dash of grace. I hope I’ll take Chief  Sitting Bull’s words and shout to the universe, “It’s a good day to die!”

That’s what I’ve learned. Oh, I can still be shallow, petty, and mean-spirited at times. I still lose my way–but not for long. Caregiving has changed me. For the better.

~Carol O’Dell

Author of Mothering Mother, available on Kindle

Read Full Post »

After a decade of caring for my mother who had Parkinson’s, Alzheimer’s and heart disease, then brought her into our home the last 2+ years of her life, this is the distilled version of what caregiving taught me. I am profoundly grateful for these lessons.

  1. To stand up for myself, and caregiving will give me plenty of opportunities to do so.
  2. There is a time in life in which you sacrifice for someone you love–and a time to stop sacrificing.  
  3. It takes humor to tackle the big scary things in life, like caregiving, disease, and death.
  4. Caregiving will inevitably bring out the worst–and the best in me.
  5. Caregiving will change me, but it’s up to me to determine how.
  6. I can’t stop death.
  7. I can decide how I will live the next moment of my life. One moment at a time.
  8. My emotions are my body’s barometers. I need to listen to these cues, feel them, use them as a catalyst, but know that no one emotion will last forever.
  9. To pace myself. Burnout is very real and very dangerous.
  10. I can’t meet all the needs of another human being. I can’t take the place of my care partner’s spouse, career, friends, or health.
  11. Caregiving is about integrity. I have to choose what is right–for me–and for all the others in my life. No one person gets to be the “only one ” 
  12. When I start to give too much to caregiving, it means I’m avoiding some aspect of my own life’s journey.
  13. Caregiving  isn’t just about caregiving. It unearths every emotional weak spot I have–not to destroy me–but to give me a chance to look at, and even heal that area.
  14. I have to stop being nice and pleasing people. “They” will never be satisfied or think it’s enough. What’s best for me–truly, deeply best–is best for those around me.
  15. Learning to stand up to relatives, authority figures, to my parent or spouse, and even a disease teaches me to be brave, a quality we need.
  16. Give up perfect. Go for decent. Do more of what I’m good at–and ask for help on the rest.
  17. Don’t isolate myself. Being alone, depressed, and negative is easy. Fighting to stay in the game of life–that’s tough, but worth it.
  18. If or when my care partner needs more care than I can provide, or even dies, that doesn’t mean I’ve failed. It means I’ve done all I could and it’s time for change.
  19. You will go the distance. You will live at hospitals, stay up night after night, weep in the deepest part of your soul, question everything you’re doing…and barely come out alive. Caregiving asks, takes this from you. Through this process, you will transform. You will see who you are–the whole of you. You will survive.
  20. Choose to care-give–then do with heart and guts.

To love makes us brave. To be loved gives us courage.

                                                                                                                                       –Lao Tzo, Chinese Philosopher

Carol O’Dell

Author of Mothering Mother

Read Full Post »

“You can become a genius at anything–if you’re willing to make all the mistakes necessary to find the right answer.” Those are the words of Dr. Michio Kaku, MIT physicist. Boy, does that sound like caregiving or what! I made lots of blunders while caring for my mom (she had Parkinson’s, heart disease and Alzheimer’s). It was a pretty steep learning curve. I was a sandwich generation mom with more balls to juggle than a circus clown. Mistakes were my middle name.

Being a genius isn’t about being gifted. It’s about perseverance.

I was watching a special on the Science Channel and was amazed at how long it took for Einstein to prove his theory of general relativity. In his early twenties, he had an epiphany while riding on a train.

He noticed the telegram poles whizzing by and he questioned, if he were to throw a ball down, it would appear to him to go straight down–and straight back up to him. But if someone were observing this while standing on the platform, they would see that the ball was moving forward–and down–and forward and up. He then took this concept and applied it to space and time.

From this initial thought, Einstein became a genius at physics. Not because math came easy to him (he realized later that his initial math was flawed) , but moreso because he stuck with it–even when he felt defeated and confused. 

It took more than a decade for those initial thoughts to evolve and finally proven.

At times, he felt like a failure, but he kept on–he had to. He was after something bigger than himself.  

As much as you feel like you’re bungling your way through your caregiving journey, you’re learning what works and what doesn’t–and I bet you could tell me a few things you’ve begun to figure out. Most adults don’t like to screw up. They have the wrong kind of pride. You have to be willing to take risks, ask questions, and live with your failures if you’re ever going to have a break through. Caregiving will test you–physically, emotionally, and spiritually.

Genius is believing that what you’re doing is important and worth the dark nights of the soul necessary.

What have you learned doesn’t work? Maybe a cane doesn’t work for your mom, your dad, or your spouse–while it may work for someone else, it doesn’t fly in your neck of the woods and no physical therapist is going to convince you.

What does work? Maybe you’ve found a solution–one that only trial and error would have uncovered. Maybe you can get your dad who has Alzheimer’s to calm down by humming the tune he danced to at his wedding–and it works every time.  That’s genius. Only the two of you will ever know this little secret, but it saves you much anxiety.

You’ve earned your stripes. You’re a good caregiver. Perfect, no. Some things are still in the development stage, but it’s time to pat yourself on the back and realize that what you’re doing–you’re pretty darn good at–so puff out your chest a bit and take a bow.

Caregiving is tough, but it’s not impossible. The little steps forward are hard-earned and worth noting.

Read Full Post »

It’s one of those signs adult children start noticing–when their parents begin to shuffle. It usually starts when they’re tired and around their own home because they’re relaxed. As a caregiver, you worry they’ll fall, trip on a rug, or get tangled in their own feet. Is it something to be concerned about?

Yes. Shuffling can not only cause them to fall, but it may be a sign of something else–such as Parkinson’s or some other neurological disorder that’s not allowing the brain and the legs to work together. In fact, there are many diseases that can effect our ability to walk.

When people think of Parkinson’s, they immediately go to the “shaking” visual in their mind. They may “see” Michael J. Fox shaking, fidgeting, moving uncontrollably when he’s being interviewed and chooses to let the world see what “P.D” is like without medications.

But one of the most tell-tale signs of Parkinson’s is rigidity. The brain isn’t producing enough Dopamine, and without that chemical, the electrical connections of the brain and muscles misfires, or doesn’t fire enough. The body becomes rigid.

Does your loved one get up to start to walk somewhere and starts out unusually fast and then starts to lean forward a bit–and you’re afraid they’re going to topple over?

Does your loved one veer to one side when walking? Is one side of the leg and/or body cave in a bit more than the other?

Does your loved one take a few steps and then pause and can’t seem to get moving again? Have you ever noticed that this happens in doorways and when the flooring changes from say, carpet to tile?

These were some of the things I noticed about my mom–that and the shuffling. So we went to see a neurologist. There don’t really give them blood tests or even do a CT scan or MRI to determine Parkinson’s. Our neurologist (my mother’s, but I claim him too–he was a great guy who sadly died too soon) simply asked my mom to walk down the hall outside the waiting room.

The doctor, the nurse, and I watched my mother walk. She was nervous, made excuses, called for me to come help her–but the doctor gently insisted she try.

The doctor prescribed her Sinemet, and we visited him every six months. The medication helped tremendously in terms of allowing my mother to walk and not pause, to not shake as much, but it didn’t make the shuffling go away.

If your loved one doesn’t have Parkinson’s, is there a way to help them not shuffle?

Yes–but it probably won’t make it completely go away. It’s kind of like trying to keep your cat off the kitchen counter–the best that you can hope for and aim for is that the cat doesn’t do this in your presence!

You can remind them–gently and with patience.

You can ask for six weeks of physical therapy (oftentimes they come to your house and your insurance will pay for it if your doctor recommends).

You can attend physical therapy with them, take notes and continue on your own.

There are other diseases that include the symptom of shuffling–MS, ALS, fibromyalgia, arthritis, high or low blood pressure, Alzheimer’s…the list goes on. If the shuffling gets worse, insist that your doctors get to the root cause. Symptoms allow us to ask questions and seek solutions.

Don’t rule out that even though there’s no official diagnosis–there still might be one in the future. I truly believe that as a family member who cares, who pays attention–probably picks up on little clues that occur months or even years before the medical community diagnoses it.

Be sure not to “blame” your loved one or get fussy with them. They truly can’t help this. Face it, just being tired can make me shuffle–I can’t imagine how tired I’ll be 30 years from now!

The bottom line is, shuffling is a symptom, and it could mean something pretty serious–and if you find out what that is, you may be able to help your loved one get the medications and treatments that will help make their life easier. As a daughter, son, spouse, friend and caregiver, it’s our job to be their advocate–to speak up for them when they can’t.

If your loved one is shuffling–be extra aware of throw rugs, table legs, clutter, step-ups and downs. Help them with respect and kindness because hey, we’re all just a shuffle away.

Carol D. O’Dell

 

Author of Mothering Mother, available in hardback or on Kindle

www.caroldodell.com

Read Full Post »

Patience is something that’s really tested in your caregiving years.

My mother used to take 15 minutes just to cross the parking lot–and that was from the closest handicapped spot! At times, I was so impatient that I can remember feeling as if I would pull all my hair out by the roots. She had Parkinson’s, and changes in flooring (car to asphalt, brick to carpet) would completely stall out her brain. She’d stand shaking, sweating, and sometimes crying. She refused a wheelchair, and although at times it limited where she could go and what she could do, I understood. Perhaps she had too much pride, but at 90, who wants to start working on your pride issues?

Later, my mother developed Alzheimer’s. You talk about one GIANT test in patience, Being a sandwich geneartion mom did and didn’t help matters. I had to be a decent example in front of my girls. The old saying, “What goes ’round, comes ’round,” reminded me that how I treat my mom is how I will be treated. But in my defense, I had three, count ’em three teenage daughters–now that’s not funny! Ever been around a snarly 14 year old girl? I felt pushed to the edge of the cliff. How much frustration could I take without snapping?

I had to learn how to let go and forget about getting somewhere on time, forget about getting dinner on the table. I had to learn how to not let the ten-thousand question game get to me.

 “Just let go,” I used to repeat like a mantra.

I didn’t want my mother to “suffer” because she had a disease. She was suffering enough–in her body, and how she perceived herself. I didn’t need to shame her. I felt like I was right back with my two-year old and we were staring at an earthworm on the sidewalk. You can’t rush a toddler, and there’s something amazing about that. They teach you to slow down, appreciate things, look around.

I used to lean my head on the door jamb and just wait for my mom’s brain to click in gear. Yeah, sometimes I wanted to ram my head against the wood, but what good would that do? After a while, I learned to simply enjoy my thoughts as we waited.

In the movie Evan Almighty when God (played by Morgan Freeman) tells Evan (a modern day Noah) that people ask for virtues such as patience all the time. They think that poof! they’re going to get doused with patience as if were fairy dust. It doesn’t work that way. God tells him that if when a person prays for patience, He is obliged to give them a situation in which to learn patience.

Wow~ I get it. (and I’m going to be careful about my prayers and wishes!)

Here are a few tips I learned about being patient:

  • If I really need to get something done, do it first thing in the day.
  • Get mad and impatient at the disease, not the person.
  • Most things you fret about–being late, not getting something in on time–they don’t matter that much anyway. If they did, would you really have waited til the last minute?
  • Start to enjoy the slower pace. Yes, elders usually eat slow, walk slow, rest more. Is this such a bad thing?
  • Laugh–or cry–whatever will get you though. Our emotions are like a water hose. When they start to flow, knotting up the hose is only going to cause a serious blow out.

Patience is a muscle that gets stronger every time you exercise it, even for just a few minutes at a time. The main person to be patient with–is yourself.

Read Full Post »

Caregiving takes all of you–your heart, your arms, your back…and like all relationships, we’re bound to make a few mistakes along the way.

I made plenty of mistakes caring for my mother. She had Parkinson’s and Alzheimer’s and her care progressed over the course of 12 or so years. At first, my caregiving consisted of calls, driving her places, overseeing her medications and doctor appointments–to eventually moving my mother into my home so I could give her full-time care. My mother passed away in our home and those last few months were some of the hardest and one of the most important times of my life.

So I understand why caregivers do it–push themselves to the edge. We have to give it our all at times–during hospital stays, as Alzheimer’s takes a dark turn, or as cancer ravages those we love.

I was watching a special on NASA’s quest to land on Mars. It’s 100 million miles away. That’s quite a dream and they’ve made lots of mistakes along the way. Costly mistakes. Some blunders can be blamed back to one person or one department, but some accidents are random, unpredictable–human error, solar flares, that most dangerous time when they enter the atmosphere that could wipe out everyone’s work in an instant and set research back years. It’s a huge risk, but the alternative is not to try at all.

They call that time the six minutes of terror. That’s when they’re not in communication and whatever happens is just going to have to happen.

That’s what it’s like to love someone, to try, make mistakes, deal with other people’s mistakes–and it all comes down to six minutes of terror when you have no idea how it’ll work out–all you can do is hope.  

There are a few caregiving mistakes you can avoid:

  • Caregiving too soon. Those first few calls from the emergency room scare you do death and it’s so easy to buy into the drama, to freak out, worry, and jump in. But the problem is, you’ve got to pace yourself. Caregiving can be one long journey and it’s wise not to react emotionally to every blip, to ask for help, and to look at the big picture and make short and long-range plans.
  • Caregiving too late: I was so busy being a mother to my children that I believed my mother when she insisted she could live on her own. I had little checks, little moments of concern–but I denied and ignored them. I wanted–and needed–her to be okay. I knew she was happy living at home–but I wasn’t paying attention. She wasn’t eating right, she was falling all the time (lots of bruises, lots of excuses), and although I was driving her or arranging for her transportation needs, she was desperately holding onto a life that was slipping away.
  • Leaving Yourself Out of the Equation: Worry, lack of sleep, long periods of recuperating from a bad fall or an extended hospital stay…you start to forget. You throw on your clothes, forget to comb your hair, don’t bother with check-ups, don’t fill your prescriptions. You’re always on alert. You don’t mean to, it just happens and months or years down the road and you forget a piece of you. You forget how to have fun, how to let go, how to relax. 
  • Taking Every Piece of Advice or None at All: Either extreme is exhausting–and scary. When I first realized my mother had Alzheimer’s I read everything i could get my hands on–it freaked me out.  I could see our future–her completely mad, me attempting to reach her. In truth, it wasn’t like that–not for a long time. We still had each other. We laughed, We ate together. We held hands. Yes, it got bad at the end but I’m still glad I went down this path. Too much information can drive you crazy. No information is foolish–there’s good out there. Treatments, medications, resources that help–but it has to stay in balance. You have to decide what you listen to.
  • Giving into Guilt and Depression: Both are bricks on your soul. They’ll drown you. I can’t say it’s not going to happen, that you’re not going to have bouts of guilt. You will. I can’t even tell you that depression won’t sneak up on you. But be careful. Depression is tricky. It’s like an alligator–it’ll take you under and won’t let you back up.
  • Not Trusting the Journey: You’ll get off center. You’ll lose your way. You’ll go to the bitter edge–but don’t believe that can’t find your way back.  Humans are amazingly resilient–we can nearly freeze to death or drown, fall down a mountain, recover from life-threatening illnesses–and survive. Don’t think for a minute that you can’t recoup from caregiving. You can. You gave of yourself and the good that you gave will return to you.
  • Not Letting Go: There comes a time when you have to let go. Whether it’s creating a healthy emotional distance or grieving an impending death, we have to learn to let go. I remember one very difficult night when my mother was having a bad episode. She was frantic, not knowing where she was, and I had to pry her hand loose from the rail just to get her back in the bed. I couldn’t do it by force and I didn’t want to hurt her.  I had to undo each finger, gently, calmly, and I knew right then that I was meant to help her figure out how to let go of this world. Letting go isn’t about giving up. Letting go is really about trusting.

All we can do is self-correct. We get off. We yell. We beat ourselves up for saying or doing the wrong thing. We fall into a funk. We lose our way–and all we can do is recognize it and alter our course. Every day, every hour offers a new choice.

Life’s a lot like that bouncing Land Rover on Mars. Will we survive the impact? Will we survive our own mistakes? Will we experience our own six minutes of terror?

Sure we will, but we have to try. 

~Carol O’Dell

Author, Mothering Mother

Read Full Post »

Older Posts »