What is Quality of Life?

Last week I advocated for quality of life versus quantity of years of life, but I never really defined that term – Quality of Life (QoL). And it could mean different things to different people, right?

It is important to note that there is no “correct” definition, which also implies that there is no “incorrect” definition. As we made end-of-life decisions for Carlton at our house, we kept several things in mind, which I have mentioned often. Our goals were to keep him comfortable, clean, and as content and calm as possible. (He would smile at the alliteration!)

But it also meant keeping ME from having to do more work and from having to learn new medical procedures and devices whenever possible. For instance, we decided on a Foley catheter during the final 18 months of his life to keep him from falling as he got up to hurry to the bathroom. That was something new for me to learn how to care for, and at first it was difficult to figure out. (YouTube videos were a big help!) But it kept him from falling so often and perhaps injuring himself.

We decided against a feeding tube for several reasons. He loved to eat food, even pureed food, and our mealtime together and with family was pleasurable for him. And I just hated the thought of having to learn to care for a new medical issue.  That was a difficult decision, but I am convinced that we made the correct choice for us. There are those who truly NEED the feeding tube, and they are thankful it is an option.

Perhaps a key to the definition of QoL is also retaining as many of the pleasurable activities of life for as long as possible. These can be as simple as listening to music, watching birds, enjoying a good meal, watching movies, feeling the softness of a favorite blanket or pillow, petting a dog or cat (live or stuffed), and being in the presence of loved ones.

So, as our loved one’s condition deteriorates, let’s do everything in our power to preserve their quality of life by surrounding them with enjoyable experiences. We may find that these things lift our spirits as well.

Quality of Life

In the 3.5 years of writing this blog, I have never specifically written on “quality of life” or QoL, until now. According to Google.com, quality of life means “the standard of health, comfort, and happiness experienced by an individual or group.” For Carlton and I, during his time with Parkinson’s Disease, our goal was to keep him as safe, comfortable, and content as possible. While reading a medical journal this week, I found this sentence that jumped off the page at me.

Parkinson’s disease (PD) is a progressive neurodegenerative disorder causing motor and nonmotor symptoms (NMS) that result in disability, loss of patient autonomy, and caregiver burden.

https://www.hindawi.com/journals/pd/2021/8871549/

No truer words were ever written about Parkinson’s Disease, in my opinion. The article attempts to prove that while the stage of PD is important to assess QoL, one must also add in the non-motor symptoms as factors. It can be assumed that QoL will decrease as one progresses in the stages of PD, but QoL will degenerate even more as additional non-motor symptoms become evident.

Non-motor symptoms cause most of the burden on the caregiver, and this article states that very truth. “Not only motor symptoms but also NMS increase in their severity and burden over time, increasing patients’ disability, with additional worsening of their QoL, as well as caregivers’ burden.”

Without getting lost in the weeds of the medical jargon, let’s talk about non-motor symptoms more specifically. Here is a list from my book:

• Sleeping too much or too little
• Difficulty Swallowing while Eating
• Changes in Smells (similar to COVID-19)
• Soft Speech
• Double Vision, Dry Eyes
• Dental Health, Dry mouth
• Constipation/Diarrhea
• Choking
• Anxiety – panic – depression
• Dysgraphia – tiny handwriting
• Both high and low blood pressure
• Apathy
• Stiffness
• Skin problems (extremely dry skin or extremely oily skin)
• General overall pain
• Sweating
• Drooling
• Sexual problems

Notice that none of these are connected to shaking, or mobility problems, which are the motor symptoms. But as we have experienced, each of these can cause extreme discomfort, inconvenience, and hence loss of Quality of Life.

Factors of Quality of Life

It was strangely comforting to read that physicians are realizing this fact, researching it, and writing about it. Throughout the article, they mention that as non-motor symptoms increase, so does the burden on the caregiver, and therefore on society. It is comforting to note that as caregivers, our burden, our task, and our role in caring for our loved ones, become greater as their non-motor symptoms increase and/or worsen.

There are 18 NMS in the list above. How many of these has your loved one experienced, either in the past or present? Not all patients experience all of them, and each experiences them at a different severity, depending on many factors. But if you have time, please leave a comment with the number your loved one has experienced, just for our unscientific poll.

So, take heart, caregiver friend. The medical community is beginning to realize our good work, and they are working on cures for all parts of PD every day. Have a great weekend, and I am praying for you all.

The Dreams on the Back Burner

As a caregiver, your time right now is not your own. I remember that time. I would sit down to do something I really enjoyed, get into it barely, and then hubby would call my name. He needed to go to the bathroom. My time for ME was over.

I would take a quiet moment to work on a puzzle, spend 5 or 6 minutes reacquainting myself with the picture, put in a few pieces, and then he would call my name again. This time he needed his drink refreshed. I had to stop doing what I loved in order to help him.

My time was not my own. Many of the desires and passions and pleasures we enjoy have been put on hold, no matter who we are caring for and no matter what their infirmity might be. We have put them on the BACK BURNER of our lives, for now.

But

This is not forever. This period of our lives will pass.

So, what do we do now? There are ways to keep those passions alive. There are ways to remember those things we love to do, but cannot do right now. We can make a plan. We can make a list. We can even create a “wish board” with pictures and symbols of all the things we want to do when we have time one day.

In my current situation, I have been privileged to move several things off the back burner of my life and onto the front burner! That includes my book about caregiving.

News Flash – – – I sent it to the publisher yesterday! The first draft is finished, and now the difficult part begins with the edits. More on that as I have news.

But here is my word to you today. Don’t give up on your dreams. Don’t stop doing the things that bring you joy, even if you can only do them a few minutes at a time. Don’t give up on wishing and hoping for the day you can spend hours at a time doing those things that feed your soul. Your day is coming. Don’t lose hope.

Thanks for reading, for commenting, and for all the difficult work you are doing now.

I am praying for you.

What? Another New Symptom?

What do we do when a new symptom or difficulty appears? There were so many that I stopped counting: dry eyes, drooling, double vision, lack of facial expression, softer speech, smaller handwriting, and the list goes on and on. Today I’d like to choose one and tell you how we handled it from the day it first appeared, and that is FAINTING.

It happened like this. Suddenly in year #16 of Parkinson’s, Carlton complained of being dizzy as he stood up from a seated position. It didn’t happen all the time, but it was occurring with increasing frequency. Soon after he mentioned it to me, he actually fainted after standing. Thankfully he was only out for a second or two, and he didn’t faint every time he stood, but he fainted enough times to cause concern for both of us.

We assumed it had something to do with blood pressure, but this was totally unexpected because he was being treated for HIGH blood pressure, not LOW blood pressure. After logging the dizziness and fainting for a few days, we decided to call his primary care doctor. That was step #1. She wanted to see us right away.

The first change she made was to take him off the medication that was lowering his BP, since that did not seem to be a problem any longer. Then she looked at all other medications that she had prescribed for him, and none of those seemed to be the cause, but she changed one medication just to be sure.

Her next suggestion was to monitor and log his BP at home over the next few weeks and give him as much salt as he would eat. We were already signed up for in-home healthcare, and when we shared this information with both the occupational and physical therapists, they had 2 other suggestions.

• They told him to stand still for several seconds after he stood, and before walking.
• They also suggested that as he stood, he might move his toes and bend his knees slightly to get the blood flowing.

Those suggestions seemed to help somewhat. However, he was usually standing to hurry to the bathroom, so waiting before walking was not practical. One of the most disturbing parts of this was that from a practical standpoint, this tendency to faint meant that someone had to be there with him as he stood each time. That was not always possible, but we tried to accommodate him.

Our last step was to visit his neurologist. He told us that due to better drugs for Parkinson’s, patients are living longer, and he was seeing this tendency to become dizzy in his long-standing patients. He said this was likely “orthostatic hypotension” which could be caused by Parkinson’s itself or a side-effect of taking C/L for a long time. From that time on, his neurologist always took his blood pressure while he was lying down, then while sitting up, then after standing. He also added the drug Midodrine. It took a few changes to get the dosage correct, but it did keep the orthostatic hypotension in check until the very end of his life.

This is just one example of new symptoms cropping up, logging the symptoms, sharing the information with our doctors, and then finding the best medication to control the problem.

I hope whatever new symptom you see next, you will be encouraged to follow this investigative procedure to control the situation. This story and more are found in my new book, so I hope you will read it and share it. It is almost finished, and I hope to send it off to the publisher for edits this next week!

Thanks for reading and commenting. I’m praying for you and your loved one this week.

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 49^th 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 3^rd 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

LAST DAY for HANDOUTS!

Email me at cherylcaregiver71@gmail.com for the 3 handouts I have been offering this month. The first 2 are handy, printable pages to help keep track of medications and doctor visits. The 3rd is filled with web links to help with mobility, eating, cognition, and more! There are only 24 hours left!

Thanks for reading and emailing!

End of Birthday Month: LET IT GO!

At the end of 3 wonderful years of blogging, I am so thankful for the art of writing. It helped me get through the most difficult of times. Some of you have asked what else I wrote. I kept a journal in which I wrote every time Carlton developed a new symptom. The main goal was to have a record of when the problem began so I could tell the doctor. And I did refer to it often to remind myself how long a certain condition had been going on. There was nothing formal about this, just a running dialogue with myself on the computer. I put it in the same folder as the record of his medications.

Sometimes I wrote when I was angry at having to repeat myself 3 or 4 times in a day. Or when I had to clean up the bathroom floor for the 2^nd time in a day. I also wrote on days and nights when I asked God, “How long?” Parkinson’s can feel like forever, can’t it? But, I mostly wrote to remember. Maybe you have considered writing. If so, I recommend it.

Each time I wrote in frustration, there was a sense of letting it go. Letting go of the anger, the bitterness, the guilt for feeling that way. And letting go is healthy. It’s even in the Bible. Paul said, “Forgetting those things which are behind and reaching forward to those things which are ahead, ¹⁴ I press toward the goal for the prize of the upward call of God in Christ Jesus.” Phil. 3:13 – 14.

Let go and reach forward because it is healthy for each of us to think about the future. One of the best things I did while Carlton was sick was make a list of what I wanted to do someday. First, I made a list of what I would change about our house. I tried to prioritize the list, putting the most pressing thing first, etc. Then I made a casual bucket list of things I wanted to do someday. We all need something to look forward to, something to give us hope for a better future.

To those who wrote asking for last week’s handout, please forgive me. It will be to you this weekend. And to everyone, all handouts are available until March 31^st. So, please email me if you’d like any or all. They are described in the other blog posts from this month.

Thanks for reading and commenting. I’m praying this prayer for you:

Oh No! Another Symptom?

Sometimes it seems that every day with Parkinson’s Disease brings a new symptom – falling, choking, skin problems, bathroom problems, cognitive decline. And the list goes on! Feeling overwhelmed by all of this? I did. Whether we have been on this Parkinson’s journey 25 days or 25 years, it can become all-consuming. When each new symptom appears, we may find ourselves asking the same 3 questions:

First question – Is this new difficulty caused by Parkinson’s? (I asked this every time some new symptom appeared.) The answer is “maybe yes, but maybe no”. But does it really matter in the long run? It is still a problem, and we need to solve it. So, we research, we ask friends for their solutions, and we try to fix it ourselves.

Second question – If we cannot solve or eradicate this symptom, is this our new normal? I expected this to be true every time, and sometimes it might be, but some issues solve themselves or go away with a simple fix. However, if our efforts to get rid of this problem are fruitless, we decide what steps we need to take to live with it. (If you can’t beat it, join it?)

And that leads us to the third question – Does this mean we are in a different stage or level of Parkinson’s? And should we be worried? (I cannot tell you how many times I asked this question.) The answer is 2-pronged. First, our doctor needs to know about each new development, especially after we have tried all known remedies and they haven’t worked. He will know if this new issue is dangerous if allowed to continue and if there are other possible solutions. To the question of stages and levels of the disease, I have found that doctors are hesitant to talk about this. Perhaps it is because PD is obviously a degenerative and progressive disease, so we expect our loved one’s health to decline more rapidly than normal. And no matter the stage, our goal is still to keep them calm and clean and comfortable. That never changes.

This can be quite overwhelming for caregivers with no medical training like most of us. The pressure of handling everything can be daunting, and as our loved one becomes increasingly dependent, the weight of the household falls squarely on our shoulders with greater intensity.

However, there is hope, my friend. This is the best time for us to lean on those around us in our inner circle of family, friends, our support group, and our faith community. If there has ever been a time when we needed them, it is now. They are our best source of encouragement and support.

Besides these people, the internet is a vast source of information and solutions to some of these problems. My gift to you this week is a list of online resources to help with several of the problems that our typical of Parkinson’s. I hope you find them useful. Just email me at cherylcaregiver71@gmail.com for your copy.

As always, thanks for reading and emailing. I’m praying for you.

Medication Time!

Two important things before we begin today’s post:

My goal is to support and encourage those who care for someone with Parkinson’s Disease or some other chronic or degenerative disease.

And

Disclaimer – I am not a medical professional, nor do I play one on television. I have absolutely no medical training and do not desire to give any medical advice.

But I do know something about administering medications after having done this for my husband for 20+ years.  

First, it is of utmost importance that Parkinson’s meds be taken on time. Their effectiveness is timed, and when that runs out, it is almost as if someone turned the switch to “off”. The window of the viability of the popular PD drug, Carbidopa/Levodopa (C/L), is narrow, and it changes as the disease progresses. Every time we notice that our loved one’s meds wear off before time to take the next dose, we need to inform the doctor so they can change the dosage or timing. This may happen often immediately after diagnosis as the doctor gauges your loved one’s response to the C/L. Then it will likely settle for a while when it feels as if you are on a plateau. Suddenly things will change which will indicate a need for a change in dosage. Don’t be alarmed at this.

One more thing about timing. This is foreign to many staff members in the hospital. So, if your loved one must go to the hospital, you will need to advocate for this.

Second, it is possible that swallowing will become more difficult as PD progresses. There are several things that can help your loved one take medications easier. Applesauce and yogurt work quite well. We needed to use applesauce for the last 6-8 years of hubby’s life because he had difficulty swallowing. We also purchased a small mortar and pestle so I could grind up any tablets that hubby needed to take. Many tasted bitter when ground into a powder, so pouring the powder into applesauce or yogurt helped the taste and allowed him to swallow them easier. Capsules can be pulled apart and the contents poured into the applesauce as well.

One other reason caregivers switch to applesauce or yogurt is that it moves the task of taking pills from the patient to the caregiver. This might be necessary if your loved one forgets to take their pills or gives any other indication that they might not always be taking their pills on time. It adds another task to our day, but it could be a good solution when your loved one needs that assistance.  If they are resistant, we can always say that this is a new way to take pills, and it takes 2 people to accomplish it.

A small plastic container filled with organic cinnamon applesauce and a spoon inserted into the food on a white tablecloth.

I hope these 2 things helped explain or clarify taking C/L or any other critical medication.

Thank you for reading and commenting. I truly appreciate each of you. Next week is the 3-year anniversary of this blog! There are some exciting things happening here in March, which I’ll share with you soon. Stay tuned!

The Boy, the Mole, the Fox, and the Horse

A few weeks ago, I mentioned a book I discovered, “The Boy, the mole, the fox, and the Horse”, by Charlie Mackesy. I showed you an image from the book, and I told you I had ordered it. It finally arrived, and I wanted to tell you more about it. Several of you mentioned to me that you looked over the free pages on Amazon.com, and some of you ordered it. I hope it brings you as much joy as it has me, already.

Here it is, to refresh your memory, along with a photograph of the author:

The premise of the book is that a small boy begins a journey and picks up the 3 animals on the way. Each character is unique, which is an important point. Each has a different skill set – a wonderful life lesson to learn. And each has wisdom to impart to the others – also true in real life. The lessons are understated in such a way that you cannot help but discover them, which is a sneaky way to give a sermon without actually preaching.

I don’t have a favorite part of the book because each time I read it I notice a new nugget of truth, and I find myself ruminating over that newly discovered jewel. The simplicity of the drawings and story totally enhance the lessons found within.

Here is one of my favorite drawings with a lesson that applies to everyone at various times in their life:

When I was caring for my husband, my struggles were just like yours. They were difficult, and occasionally I wanted to give up. Often I needed to remind myself that everyone struggles with something, not just caregivers. We have a tendency at times to say, “poor me”, whether in our thoughts or aloud. And just about the time I say those words, it seems that God places someone in my path whose situation is much worse than mine. I immediately change my inner thoughts to say, “Thank you, God, for MY struggles. I know how to handle my problems, and I wouldn’t want to have THEIRS!”

Don’t give up, my caregiver friends. This stage of your life is not forever. We have heard the saying, “This too shall pass.” And we know it is true. And each time we struggle with something, we can all remember that our struggles are temporary. So, we do not give in to despair.

Instead, we have hope. We have help. We have friends, family, and God who is with us in whatever struggle we’re facing.

Have a great week ahead, and I am praying for each of you, even if I do not know your name.

Let’s Write a Book

Good morning, friends,

Since we are writing a book about Parkinson’s, we will begin with the diagnosis. Would you like to give some input? I would love to hear about your experiences and your responses to these questions:

1. When you received the diagnosis, what was your first thought?
2. What was your first question either to the doctor, or to your spouse?
3. And what do you wish you knew THEN that you actually do know now?
4. What is one piece of advice you would give to a couple when one has just been diagnosed with Parkinson’s Disease?

Since my blog is going through a design renovation, you may find it difficult to locate the “comment” button. If so, please email the answers to these questions to hughesgctm@yahoo.com.Thanks so much for your help in this.

Here is a little taste of chapter one:

I wish I had gone with him to that doctor’s appointment. I should have gone with him, but we had no idea that the diagnosis would be Parkinson’s Disease. That was not even on our radar. His symptoms were not what we associated with Parkinson’s (PD). He didn’t really shake, and that’s all we really knew about PD.

His symptoms seemed random to us, and we never connected the dots and came up with a picture of PD. This is how it happened.

The first two things he noticed were that when he walked his left arm did not swing per usual and his steps were becoming shorter. He noticed these things because he took public transportation part way to work each day, and from the train station he walked about a fourth of a mile on a sidewalk. He noticed the length of his steps first because the sidewalk was composed of sections of concrete, all the same size. And at first, he walked about 4 steps in each section, but over the course of a few months, he noticed he was now taking almost 7 steps in each section of the sidewalk. We talked about it one night over dinner. A few weeks later he mentioned that his left arm didn’t swing. He could make it swing consciously for a few minutes, but as soon as his focus was on something else, his arm ceased to swing.

The final symptom that sent him to the doctor was an observation I made one day as I was walking behind him. From the back, he looked like someone who had just had a stroke. He was hugging his left arm to his body, and his left leg was dragging slightly. When I walked up beside him, I said, “You’re right. Something is wrong with your left side. You need to go to a doctor!”

But neither one of us connected these symptoms with Parkinson’s Disease. And we were not prepared for the way the doctor delivered the news. He was a general practitioner who had never seen Carlton before. After listening to Carlton describe his symptoms he said, “Sir, I don’t know you, but by your description and looking at your face, I can tell that you have Parkinson’s Disease.”

When we first heard the diagnosis, we were stunned, shocked, and almost horrified. However, we didn’t realize all that it meant. In some respects, we wished we had not gotten a diagnosis, because it did change the way we were thinking. But not knowing would not have helped the situation. Having a name for the condition allowed us to focus on helping my husband. That was a good thing.

Does that remind you of when you and your loved one received the diagnosis of Parkinson’s Disease, or of some other degenerative condition? If you know someone who has been newly diagnosed, please share this with them. We’ve come a long way since then, haven’t we? And we won’t give up now. The same family, friends, and faith in God that have brought us this far, are the ones who will be with us in the days to come.

I have so much more to share with you, my caregiver friends, but I will save some things for next week! Until then know these 2 things – I am praying for you, and God is with you every moment of every day. Have a great week ahead, and thanks for reading and commenting.

-Cheryl