It’s Official! I am an AUTHOR!

Some of you are thinking right now, “Why would a retired mathematics teacher want to write a book?” And your question is valid!

Others of you are thinking, “She is finished with caregiving. Why doesn’t she just forget about Parkinson’s and move on?” And your question is valid!

The answer to both questions is the same, and it is simple. I remember how it felt to care for my husband, and YOU are there right now. So, I am writing to give you hope. To help you through this stressful and challenging time. I am writing this book for the same reason I write this blog – to support and encourage you who care for a loved one with Parkinson’s Disease.

I follow several groups on FaceBook connected to Parkinson’s Disease, and many stories I read there are heartbreaking. Here are a few:

“My husband was diagnosed with Parkinson’s Disease last week. I don’t know what to do next! HELP!”

Or

“I can’t do this anymore. I can’t watch my wife become less and less of a person with Parkinson’s Disease. I’m DONE!”

Or

“What do I do about my father with Parkinson’s? He has had 3 traffic accidents in the last month, but he won’t give up driving? I am so tired of fighting with him over this.”

Or

“My mother has Parkinson’s Disease, and I can’t care for her anymore. I sit here crying as I write this because we had to put her in a nursing home today.”

The stories are endless. The heartbreak is endless.  Caregivers need to know that they are not alone. They need to feel the support and encouragement from someone who has been there and come through on the other side. That’s why I am writing. For you and for them.

The working title for my book is “Hope for the Caregiver”, and it is nearly finished. My goal is to have it ready to send to the publisher in the next 2 weeks, so I am working hard to accomplish that.

Here is a quick peek at the content:

  •           Chapter one – what to do with a diagnosis of a degenerative disease
  •           Chapter two – now that you have it, how can you live with it?
  •           Chapter three – moving into the advanced stage and coping with it
  •           Chapter four – is Hospice right for us?
  •           Chapter five – the final stage of life and the immediate aftermath

This book is for every caregiver. It is filled with hope and the assurance that we each need a support group of family, friends, and faith to survive and even thrive during this stressful time.

Yes, I hear your next questions, “When can we see the book? And what can we do to help?”

Even though I cannot answer the “when” question right now, I can think of a few things you can do to help.

In the next few weeks, I will be launching my website about the book, and I will need people to follow me there and on Instagram to help with getting out the word about the book. Watch for a blog post about that soon.

And prayer is the best thing to do as I edit and edit and edit some more! I will update you every time there is new information.

Thanks for your support and encouragement along the way. Can you think of a friend who might need this book? I am praying even now that the book will find its way to those who will find HOPE from reading it.

Have a great week and thank you for reading and commenting.

How to Survive without Really Trying

This past week was an anniversary of sorts for me. It has been one year since my husband passed from this earth into Heaven. For one year I have had to mark “Widow” on all applications or surveys. That really stunned me the first time I had to do that.

When we are in the middle of caregiving, we don’t always think ahead to how it’s going to be when we are NOT caregiving anymore. And that is understandable. We have too much to do to care for our loved ones to be thinking about that!

Well, here is how last year went for me. The funeral was wonderful. It was exactly as Carlton would have wanted it. And for that, I am very thankful. It was nice to have family around for a short time.

When they left and things settled down to just me at home, there were things that were very much the same, and yet there were things that were very different.

The sameness came with all the things I had been doing already because Carlton had been unable to help with anything for the last year. I still had to take out the trash, pay the bills, make decisions, and feed the cat, just as I had done previously. My house was the same, so I didn’t have to get used to a new living situation.

One difference is that it is quiet. Oh, so quiet. There is no one calling to me to come to help them, no one made any noise except me and the cat! I had to get used to that and realize that I could play music (as loudly as I wanted), or leave the television on all day, or not! My choice! That is really nice.

Another difference is that I can come and go as I please. I don’t have to ask if he wants to go with me or say how long I will be gone. I can even change my mind while out if I decide to stay longer. That is a real blessing. It does have a downside, however. No one checks on me unless I call a friend or family member to tell them where I am going.

They say that the first year after a death of a family member is the most difficult. So, you might ask how I made it through all the holidays, including our 49th wedding anniversary. The answer is simple.

I survived just like you are surviving while caregiving. One day at a time. One moment at a time. One foot after another. One breath after another. You are living life right now by showing good care to your loved one. You are doing the hard work to show love. Keep on doing that, my friend. You will have no regrets. You are doing well.

You are surviving where you are right now. However, the day is coming when your caregiving period is over, and the new days will be brighter. My prayer for you this week is that your load will be lighter, and that God will give you peace in the middle of caregiving.

Thanks for reading and commenting. Next week – news on my book!

MOBILITY SOLUTIONS #2

Fixing Falling

This answer is simple – you can’t. I could just stop there, and you would be disappointed, but you would probably understand. Parkinson’s patients are going to fall. It is inevitable. But we can unpack this topic somewhat, and perhaps we can find some ways to prevent a few of the falls.

As I think back through our Parkinson’s journey, here are some reasons why my husband fell. Sometimes he leaned forward as he walked, getting off-balance, and his center of gravity moved out in front of his body. That caused him to fall forward. In last week’s post we named this “festination.” The only solution I found to that was to slow him down and stop him, allowing him to rock back onto his heels and bring that center of gravity back to horizontal. But he could never do that by himself. It took an outside force – ME!

Another cause of falling might surprise you. Sometimes he was standing still, and he just fell! Has that ever happened to your loved one? Isn’t that a strange thing? My theory is that when that happened to Carlton, it was because he did not shift his weight to one foot before stepping out with the other foot. (I believe this is part of executive functioning – something most of us do without even thinking.) The falling while standing still might be prevented if our loved one would hold onto something, but in our house, it happened most often in front of the refrigerator. Carlton seemed to want to carry something, but he couldn’t do that while walking.

But the biggest cause of falling in our house was when my husband was trying to get to the bathroom quickly. His feet just wouldn’t cooperate, and he fell forward – face first. We were so thankful that he never injured himself on any of those falls, other than the occasional scrape.

However, falling is not advisable! It can lead to broken bones, and a broken bone brings inconvenience and pain for everyone. So, we want to minimize the falling!

This means we might have to introduce devices to help with walking, which is not news to any of you. Some people begin with a tall walking stick. There are fun shapes available which make them seem less “medical”. Canes can even seem more fun when we paint or decorate them, and the ones with animal toppers can be conversation starters!

We can even make walkers interesting and entertaining by decorating them and making them colorful. The ones with seats and storage compartments are very handy when we need to wait in line somewhere.

Two reasons we sometimes opted for a wheelchair were that we could get places faster, and Carlton was not tired from walking when we arrived. When family members were around, they enjoyed helping to push him which was a huge help to me.

The last thing I want to mention is how to get our loved one up after a fall. It is important to have a gait belt if falls occur often in your home. Check out this link to see the kind we had. It worked well. You can also call for help from the fire department. They use the term “Lift and Assist” to help patients who have fallen. You can call 911 or any number you have for non-emergency help. It is usually free, but you may have to wait until they are available to come.

The bottom line is that falling can be dangerous, so we want to avoid falls as much as possible. However, they are inevitable with advanced Parkinson’s patients. We just work to make them as painless and less frequent as possible.

Thanks for reading and have a fall-free week ahead!

MOBILITY SOLUTIONS #1

Fixing Freezing and Festination

Last week we decided our biggest problem for people with Parkinson’s Disease was mobility, specifically freezing, falling, and festination. Today we need solutions!

PROBLEM #1 – Festination

          This is the tendency to walk on the balls of the feet which causes the steps to gradually become shorter. Eventually, our loved one is leaning forward to the extent that they get off-balance and fall.

SOLUTION –

          As this happens, help your loved one come to a complete stop. Regain balance. When ready, say, “Heel, toe, heel, toe,” and tell them to begin walking on “heel” by placing the heel down first. One alternative would be to count, putting the heel down on every odd number. The key is to come to a complete stop first, then begin with the heel.

PROBLEM #2 – Freezing

          This problem seems to be unique to Parkinson’s patients, and it is coming to a stop and not being able to resume walking right away. This sometimes happens suddenly with no apparent cause, but it happens more often when coming to a doorway or a turn in the path. It also occurs when our loved one is trying to hurry.

SOLUTION –

          For my husband, this happened while walking down the hallway in our home. He noticed that it was easier when he was somewhere in public where the carpet had a pattern. He just followed the pattern. Since our carpet was solid, we put duct tape on the floor in a pattern to help him have something to follow. That helped for a time.

          In public when there is no pattern, here are a few coping strategies:

  1. Count together. You can even decide which # to move on. “Let’s walk on 5. Now count, “1, 2, 3, 4, 5, walk”. Sometimes this worked for us.
  2. Sing a favorite marching type song. That gets their mind off the pressure of walking. But it doesn’t always help them move their feet. If you can get them to march in place, chances are great that you can get them to move forward.
  3. Pretend the threshold is a stick or a snake and exaggerate the movement of stepping over it by raising your leg high.
  4. Try touching the leg of your loved one and saying, “Pick up this leg first.” That touch sometimes helps make the connection in the brain.
  5. Gently pull your loved one to help them lean in one direction, shifting their weight to that leg so they can step with the other leg. That seems to get them off “dead center.”

There is no QUICK FIX that works every time for either of these issues. Instead, these are coping strategies that work sometimes. But even these need to be adapted and altered to fit each of our situations. Please share in the comments or direct email and tell us what works for you and your loved one. Thank you for reading and commenting, and have a great week ahead.

cherylcaregiver71@gmail.com

Is Falling a Problem?

Or maybe stumbling or shuffling? At our house, all 3 were problems at one time or another. But falling is probably the most dangerous. It is truly a miracle that my husband never broke a bone in all those many falls.

Falling, Falling, Falling

Looking back after Carlton was diagnosed, we remembered something that had been happening for several years. Many times when he stood up, he would stumble to catch his balance. He used to say, “Did you feel the house move just now?” But of course, it hadn’t.

And then there is a problem with freezing, especially when our loved one gets to a doorway. Is that a problem at your house as well?

Did you know that “leaning” is also associated with Parkinson’s? At first, it is funny, then it is just a nuisance, but it can be a hazard when our loved one literally falls over because of it!

Are you seeing a pattern here? What if we were to add a few lesser-known conditions like festination, dyskinesia, and dystonia? What do all these issues have in common?

Together they make up the category of MOBILITY! This is a huge problem for Parkinson’s patients, as you well know. And when something robs us of our mobility, it causes us to be dependent on something or someone else, creating huge problems in life.

But I am preaching to the choir here. You already know this, don’t you? And you have experienced several of these things, no matter how long your loved one has had Parkinson’s or some other condition.

So, what do we do about this? How can we help our loved ones? Is there any hope? (So many questions!)

Well, the best answer in the world is YES, there is hope.

Yes, there are strategies that can help us! Yes, others have paved the way before us and invented devices to help us, and research and development are still happening today to give us even more hope.

Let’s talk about strategies and accommodations to help with mobility next week. While I do my homework to gather resources for you, here is some homework for you:

  1. Check out those links on festination, dyskinesia, and dystonia. Does your loved one experience any of them?
  2. In the comment section, tell me what other mobility problem you are seeing at your house, and I’ll address that as well.

Thank you so much for reading and commenting. I look forward to sharing “Help and Hope” with you next week.

One-Liners

My husband, Carlton, was the king of one-liners. He would listen to a conversation between 2 people, and it would seem as if he wasn’t really listening. But then, suddenly, he would interject a pithy statement, a one-liner, that really caused everyone to pause and take notice. He was a deep thinker, and his singular statements prodded those around him to also think deeply.

I love reading that kind of statement because that shows that the speaker is tracking the conversation and can formulate the words to cause ME to think past the surface, deeper than the superficial.

Sometimes I take those weighty statements and make them my home screen on my computer for a while, and every time I read it I think of the speaker, or I smile with a memory.

Today I leave you with 3 such statements that have been important to me lately. In the comments, please let me know which one resonates with you (#1, #2, or #3), and if you have a new one for me, please share it!

Thanks for reading and commenting, and have a great week ahead.

Number One
Number Two
Number Three

HOPE after Darkness

Today is Saturday before Easter. If we place ourselves back in time, we realize that Jesus is dead, and the disciples are devastated. What should they do now? Jesus was their hope, their Savior. Yet, He was dead. Some call this day, “Silent Saturday” because God in Heaven was silent.

However, we know from history that Jesus rose from the dead on Easter morning! Hallelujah! When the disciples heard this, they passed the news by greeting each other with “HE IS RISEN!”, and the response came back, “HE IS RISEN INDEED!”

Before my husband passed into Heaven, there were days when I felt I was in a silent period of my life. Here is a partial reprint from 2/2/2019:

Being totally honest here, there are moments in my day when life is dark.  Within one 24-hour period my husband can go from walking across the room without any aid to not being able to lift his fork to eat. Totally independent to totally dependent, with the entire spectrum in between – all in a day.  Many of you have experienced the same phenomena.

Because of this, there are times when I feel that the weight of the household is really on me now. Do you feel that way? We used to be partners in life, and in the pure sense of the word, we still are. But in reality, it is all up to me now. I used to rely on him to physically help with things around the house and to give me moral support and comfort. But Parkinson’s has changed all of that. He just cannot do those things physically, mentally, or emotionally. I believe it takes everything he has to just make it through another day. There is nothing left to contribute to our household or to me.

There are times when the weight of this feels like it will suffocate me like I cannot possibly do it all. In those dark moments, I feel totally alone.

But those moments are few and brief. It seems that just as I feel that the situation is hopeless and I am bearing the weight of the world on my shoulders, God gives me a wink. As I type this, it is early morning, and I look out the window at the sky above the roof to see a beautiful cloud formation with gorgeous colors, and it makes me smile. Then a male cardinal lands on the roof of the patio, just at the edge of my vision. He is beautiful – bright red against a colorful sky. And I realize how blessed I am. God is with me.

My friend, God was with me even during that “Silent Saturday” period of my life, just as God is with us today. So, tomorrow, on Easter morning, let us all thank God for being with us and for His power over death.

Because Jesus lives, we will live also. Death cannot hold us when we place our trust in the God who gives life! Hallelujah, thanks be to God.

RAISE YOUR GAZE

Since tomorrow is Palm Sunday with the beauty of Spring everywhere we look, it is a perfect time to raise our gaze from the common to the sublime. From the bleakness of winter to the hope of Spring, let us gaze at God’s creation coming to life. We drink in this newness of life as hope that brings appreciation and thanks to God.

At this time of year my thoughts go to Psalm 121:1-8 which I learned as a child, here in the English Standard Version,

  • I lift up my eyes to the hills. From where does my help come?
  • My help comes from the LORD, who made heaven and earth.
  • He will not let your foot be moved; he who keeps you will not slumber.
  • Behold, he who keeps Israel will neither slumber nor sleep.
  • The LORD is your keeper; the LORD is your shade on your right hand.
  • The sun shall not strike you by day, nor the moon by night.
  • The LORD will keep you from all evil; he will keep your life.
  • The LORD will keep your going out and your coming in from this time forth and forevermore.

That Psalm brings me such comfort today, just as it did while caring for my husband. I am especially thankful that God does not sleep, and in the middle of the night when Carlton woke me for the 3rd time for help, it was comforting to know that God was also awake and that He heard my desperate prayers.  To make this Psalm even more personal, I offer you an altered version today:

  • I will lift up my eyes to the heavens from whence come beauty and wonder,
  • Because otherwise my mind and heart become bogged down with sickness and despair due to Parkinson’s Disease and the thoughts of an uncertain future.
  • As I gaze at God’s creation, my heart begins to soften and my thoughts morph from the weariness of the duties of a caregiver into the joy of a thankful heart
  • From thoughts of death to the beauty of life,
  • From being consumed with worry to feelings of calm.
  • My heart overflows with thanks to Him for friends and family, without whom I would not make it,
  • And I thank Him for Hope for tomorrow and Peace for today.

Thank you for reading and commenting. I am praying for each of you today.

I AM ENOUGH

Sometimes while caring for someone with a degenerative disease, we have occasion to doubt ourselves. To think we are the wrong person for the job. To think God must have made a mistake – surely someone else could do better. After all, we are so imperfect.

Our loved one is not getting better. (We knew they wouldn’t, but somehow, we expected them to improve since we are giving such good care!) And there are times when they do seem better. They will have good days interspersed between the bad days. It really doesn’t help that it seems we are on a roller coaster!

When a new symptom appears, we are tempted to cry, “Great! One more thing I get to do. Something new to worry about. Don’t I have enough symptoms on my plate to try to mitigate?” And there will be more symptoms soon, and after that – more symptoms. That’s the way of a degenerative disease.

And just when we think we have reached an even keel with one symptom, it flairs back up again. The most annoying problem for us during Parkinson’s was the constipation/diarrhea rollercoaster. As soon as we overcame constipation, it seemed like Carlton would have one good day, and then diarrhea hit. It was a constant pendulum swing. This was his Achilles Heel, so it seemed.

Others may find falling to be a problem. And once you have removed all obstacles, found good shoes for them to wear, placed the walker or cane close by, they might go a day or 2 with no falls, and then they fall and break a bone, causing more problems for everyone.

As caregivers we doubt ourselves and think, is this my fault? Did I leave him alone too long? Did I leave that box in the way that he tripped over? Did I forget to remind him to use the walker? I must be a bad caregiver.

Self-doubt creeps into our minds, and the questioning begins all over. Instead of listening to those negative voices, it helps to ask ourselves just one simple question: did I do everything in MY power to help him/her?

If the answer is yes, we must push every negative thought away and remember that we are enough. We have done all we could in each situation. We are not perfect, we are not medically trained, and we are not super-human. We did the best we could. We are enough.

Let’s hold our heads up high and be proud of the work we have done to help our loved ones. We have sacrificed our time and our future, and we are giving all we have.

We are enough! God has equipped us with the strength and determination to care for our loved ones, and let’s keep the self-doubt away. Let’s replace those negative thoughts with thankfulness to God for His help in every situation, every day, and every obstacle we face.

Thanks for reading and commenting. Feel free to email me if I can help you in any way.

cherylcaregiver71@gmail.com