Posted in Apathy, Attitude, calm, Caregivers, COVID-19, Degenerative disease, depression, Encourage, faith, friends, Future, God, health, care, caregiver, chronic disease, Healthcare, help, Parkinson's Disease, thankfulness

The Fifth Season

In Kindergarten we learn about the 4 seasons: Summer, Autumn, Winter, and Spring. And those 4 become the norm for life for us. As children, we come to anticipate Summer and the change from school days to fun days. We even learn to associate the weather patterns of the seasons, depending on where we live.

Today I would like to suggest that there might be a 5th season that is not defined by months or years, but it is defined by circumstances. A commentator I heard this week calls it the season of LANGUISHING.

  • According to Google.com, languish can mean any of these things:
  • To lose or lack vitality; grow weak or feeble.
  • To suffer from being forced to remain in an unpleasant place or situation.
  • Merriam-Webster defines it as:
  • : to be or become feeble, weak, or enervated
  • : to be or live in a state of depression or decreasing vitality
  • : to become dispirited (Having lost enthusiasm and hope: disheartened)

The commentator was not speaking to caregivers, but to a general audience. He described our current world situation as being so weighty, that the population in general seems to be languishing. Then he went on to define that term and support his position.

My thoughts immediately went to caregivers, and how the second part of Google’s definition describes our situation – “to suffer from being forced to remain in an unpleasant place or situation.” That is a bit tongue-in-cheek, however, because we are not forced to be caregivers. It is what we choose out of love. However, there are times we may feel trapped in that place.

Those feelings can cause depression or apathy or even anger and bitterness. When we ad in the winter doldrums, life could look very bleak. At this point, there are at least two choices.

Number one – we could wallow in self-pity and just give up. But let’s not do that.

Number two – we could implement some strategies to help us live through this season of life – this languishing – until we emerge on the other side. We can even THRIVE! This is a much better choice!

So, how do we do it? Full disclosure here – I have nothing new to suggest, but I do have experience in feeling this way, and I can tell you that I refuse to give in to this languishing. Here are some ways I avoid it that might resonate with you.

First, I remind myself that God is with me. I am not alone, and He knows exactly what I’m going through. He has not left me here to deal with this by myself. Instead, He has given me His Holy Spirit within me to guide me and comfort me. And He has given me the Bible to remind me of His love for me while I cared for my husband and now into this season of my life.

Second, I try to read and watch only positive media. Negativity is addictive and invasive, and I don’t need it in my life.

Third, I surround myself with things that bring me joy – nature, art, music, and I focus on their beauty. Are you thinking of something that brings you joy?

Fourth, I seek the company and care of my friends and family. I am blessed with so many who are encouraging, and spending time with them lifts my spirit. So, I lean into them.

And lastly, I remind myself that I am blessed by God in so many ways. I had the strength and ability to care for my husband, and I am so thankful for that. And now, when I feel as if I’m languishing, I will count my blessings and give thanks to God who supplies all my needs.

It may be Winter here, and some may say this is a season of “languishing”, but we don’t have to give in to those depressive thoughts. We don’t have to languish. Instead, God is our hope and our salvation. Let’s not fear this time of our lives. Let’s give thanks to the One who is with us and gives us strength and hope.

Thanks for reading. I would love to hear about how YOU rise above these languishing days. God bless each of you this week. I’m praying for you.

Posted in Accommodations, decisions, Degenerative disease, health, care, caregiver, chronic disease, Healthcare, Parkinson's Disease, problems, solutions

Is there a Solution for Every Problem?

When I retired from teaching high school mathematics 5 years ago, I would have answered that question with a resounding YES!

Today, I’m not so sure. From the perspective of the caregiver of a loved one with a degenerative disease, many problems that we encounter can only TOTALLY be solved with the curing of the disease. We do long for a cure that will release our loved ones from the clutches of the disease. However, until that happens, we face daily challenges from symptoms of that disease and side effects of the drugs prescribed for it.

So, do we give up? NO! We never give up trying to find solutions, knowing that a total solution may not be possible right now. However, there are things that can make life easier while not solving the problem entirely.

One case in point for Parkinson’s patients is the uncomfortable swing from constipation to diarrhea with not much in between. This is typical with PD patients, so we expect it. And while we may not be able to completely stop that pendulum swing, we can try to mitigate both extremes by adjusting our diet and including some home remedy concoctions. Both have been shown to be helpful.

Another issue is freezing while walking, especially in doorways. This is also typical with PD patients, and while there are some prescription drugs that help, they also produce side effects that can be worse than freezing. So, we try other ways to prod our loved ones to continue walking. Physical therapy and occupational therapy helped my husband with this, and several of the therapists had great suggestions for him and for me. We tried all of these at different times: counting, singing, pretending to march, me touching his leg or foot to “tell it” to move, looking up instead of down at the floor, putting masking or painter’s tape on the floor a step apart and asking him to step on the tape, etc. Hubby responded to each of these at different times, but sometimes not at all. We know Parkinson’s to be unpredictably predictable. Right?

(He loved walking on wall-to-wall carpet at places like hotel hallways when the carpet had a repeated pattern. I believe the pattern gave him a goal at which to aim each foot.)

These are just 2 examples of problems that may not have a permanent solution, but they do have partial solutions which help us cope with them in a better way. So, the message is this. Keep trying to find a better way, but don’t despair when all you can do to fix the problem is put on a Band-Aid. Sometimes a Band-Aid is the best solution possible.

My prayer for each of you today is that God will give you strength for each task you need this week and wisdom in each decision you must make.

Thanks for reading and commenting. I truly appreciate each of you.

Posted in Caregivers, Degenerative disease, Future, God, health, care, caregiver, chronic disease, Healthcare, Parkinson's Disease, thankfulness

A Checklist for the New Year

Happy New Year to everyone on this January 1, 2022!

As always, my goal is to encourage and support those who care for a loved one with Parkinson’s Disease or any other chronic or degenerative disease. I feel your burden after caring for my husband until he passed into Heaven just last year.

On this New Year’s Day as we think about the year ahead, here are 3 things that should be a top priority for all of us.

  1. Be sure all paperwork is in order. This includes advanced medical directives, wills, insurance documents with beneficiary updated, etc. An attorney who specializes in elder law will know exactly what is needed in your state. Let’s get this done in January so we don’t have to think about later.
  2. Don’t wait to take care of yourself. Take steps each day toward selfcare, not neglecting regular wellness doctor visits.
  3. Let’s remember to be thankful. Making thankfulness a priority will increase our joy and peace. It seems simple, and it is.

Thankfully, we accomplished #1 before my hubby passed.

Sadly, I waited until his passing to accomplish #2, but I am seeing to it now.

And #3 is always at the forefront of my mind, partly because of the Bible verse that says, “And be ye thankful!” (Colossians 3:17) To accomplish this in 2022, I purchased a calendar with room to write in each day’s section. This is what it looked like when I awoke this morning.

And for today, this is what I wrote for my thankfulness:

As a former teacher, I have always loved the beginning of a new school year. The grade book page was empty, students had new notebooks and new bookbags, and excitement and anticipation were in the air. That’s how I feel today – excited about 2022, even though I do not know exactly what the future holds.

Even though we understand that the 3 suggestions I’ve made are important and necessary for a healthy New Year, there are obstacles that might get in our way and impede our progress.

Sometimes the pressures of real life get in the way, and these things fall through the cracks. Let’s be sure that doesn’t happen with these 3 important items.

Sometimes we put things off until later, and later never comes. January will be the best time to complete #1 from my list, but #2 and #3 must be on-going!

Sometimes other things become a priority, such as safety and health of our loved one for whom we care. Those things must be addressed first. They are necessary and important. But perhaps we can remember #2 and #3 in our list and get back to them when the cleanup and everyday duties of life are completed. Care of ourselves is just as important as care of our loved ones. And being thankful will bring the balance that helps us be better caregivers.

As I write I am praying for each of you, that God will give you the strength needed to care for your loved one as well as yourself.

Thank you for reading, and may God bless you in 2022.

Posted in Christmas, Degenerative disease, emotions, Encourage, God, health, care, caregiver, chronic disease, Healthcare, Holidays, hope, Parkinson's Disease, positive, possibility, possible

On the First Day after Christmas

Many years ago, my husband was choral director at a local high school, and one of the songs he chose for the Christmas concert that year was titled “The Twelve Days AFTER Christmas.” It was a cute song that the kids loved to sing. The first line went like this: “On the first day after Christmas my true love and I had a fight.” And on it went to describe how the author threw away all the gifts that had been given on the twelve days prior to Christmas. That performance got a lot of laughs and applause from the audience.

Following that theme, it is possible to have a wide range of emotions on the day(s) after Christmas when the hustle and bustle and busyness of the season wind down and we go back to our regular routine. We might experience a sense of relief, or feelings of sadness, or even anger that nothing has really changed and we are still caregivers working hard to care for our loved one.

And each of those emotions is justified, and perhaps even expected. However, after we give them their fleeting moment, this is a good day to focus on excitement for the future as we look toward 2022.

A fellow blogger posted a short poem yesterday about the future, and 2 lines caught my attention. If you have time, please go read it here and then read my thoughts on it.

First, I love the idea of “emerging possibilities.” We don’t know what will happen in 2022, but ideas and opportunities WILL emerge that will draw our attention and give us new outlets for our creativity and growth. Let’s make a pact to take those opportunities when they are presented to us. Who knows what good trouble we might get into in this next year!

And second, did you notice that the author repeats the phrase “light shines through”? Sometimes this world is a dark place. There is so much death, sickness, crime, suffering, and the list goes on. So much darkness. But this poet talks about how we can be the light that shines through that darkness to give hope to the world. Jesus is the light of the world, and HE came to earth to bring hope and light. Now that He is back in Heaven, I believe he has left US here on earth to be the light that shines through this darkness, pointing people to Himself. We can be the light that someone needs to see, to point them to God.

On this first day after Christmas, I am excited to watch for emerging possibilities today, this week, and into 2022. And I want to be the light that points someone to Jesus who is the Light of the World.

What about you, my friend? I’m praying for you today, even if I don’t know you by name.

Posted in calm, Caregivers, decisions, Degenerative disease, delusions, depression, Encourage, Frustration, God, hallucinations, health, care, caregiver, chronic disease, Healthcare, Parkinson's Disease, psychologist

The Impossible becomes Possible

As I read the Advent devotional each morning during this time of year, I am struck with the reminder that “With God all things are possible.” (Luke 1:37)

That was God’s promise to Elizabeth and Zachariah when the angel told them they would have a son whom we call John the Baptist.

That was God’s promise to Mary when the angel told her she would have a son whom we call Jesus.

And surely if God can cause an elderly lady (Elizabeth) to become pregnant, and God can cause a virgin girl (Mary), to become pregnant, God can still work miracles today. Right?

What miracle would we ask for today if an angel came to visit us? Would we ask that our loved one be healed of their disease(s)? That might come to mind as our first request because that does seem to be impossible right now.

Or perhaps we would ask for peace and calm this Christmas season? The world could use some peace right now. Of that we might all agree.

I believe these prayers will be answered one day, but only God knows when. For today, however, there are things that we KNOW God will give us when we ask. God has promised to give us personal inner peace and calm when He said, “Peace I leave with you. My peace I give to you, but it is not like the world gives. Don’t be troubled or afraid.” (John 14:27) God will give us His peace as we ask and focus on Him.


Two hands preserve a green tree against a thunder-storm. Concept of preservation of the nature

As caregivers, sometimes the days are long, and the nights become even longer as we get up for the 3rd or 4th time to help our loved one. It can be aggravating and agitating and even maddening. That totally disrupts our peace, doesn’t it? When that happens, let’s pray for God’s peace to take over our hearts. Even if we cannot change our physical situation, God can speak peace to calm our hearts and show us something good in the midst of our troubles.

Another promise God made to us is to give us wisdom. “If any of you lack wisdom, just ask God and He will give it to you liberally.” (James 1:5) Most of us don’t know everything about nursing, and yet we are caregivers who nurse our loved one through their disease. We must make medical decisions all the time. Most of us are not psychologists, yet we are tasked with helping our loved one through depression and anxiety, and sometimes even delusions and hallucinations. We need God’s wisdom to deal with each new symptom and each difficulty that arises.

God has promised these 2 things that seem impossible sometimes. He has promised peace (as we care for our loved one with a degenerative disease) and wisdom (even though we sometimes have no idea what to do next).

So, today, let’s lean into God and ask God to do the impossible, just as He did long ago when He fulfilled His promises to Elizabeth and Mary. Let’s ask God for personal peace and wisdom. He has promised to give those to us in abundance.

Thanks for reading and have a great week ahead.

Posted in Caregivers, Celebration, Christmas, emotions, faith, friends, God, health, care, caregiver, chronic disease, Healthcare, Parkinson's Disease, Perspective

It’s All in the Perspective

My prayer today is that my words will encourage and support those of you who care for a loved one with Parkinson’s Disease or some other chronic or degenerative disease.

I was humbled this past week as a friend confided that her husband has been recently diagnosed with Parkinson’s Disease. My first thought was to remember how I felt on the day I heard the same news about my husband. That was nearly 24 years ago, and I knew very little about Parkinson’s, so I rushed to research it. After reading just a few sources, my emotions went from ambivalence to panic to resignation to fear. Imagine feeling all of those things in a short space of time while still being clueless as to what was ahead of me/us.

That was my perspective. My husband’s perspective was different. He also rushed to research PD, but to him, the research was comforting. He felt that he now had time to do much of what he wanted to do in life – write. And that’s what he did for the first 19 years, experiencing only minor inconveniences.

However, as his mobility became limited and he became more dependent on help from others, life became more difficult. His perspective changed, as did mine. Somewhere along the line we both moved into survival mode. We did what was necessary to make life as comfortable and enjoyable as possible. During that time there were many difficult days when I needed to be reminded to look at the situation through my husband’s eyes, not from my perspective. I’m thankful for friends who reminded me of that.

His mental conversation at that time might have gone something like this, “This is getting more difficult by the day! I am losing this battle. I can feel it, I can see it, and there’s nothing I can do to stop it. STOP! I want this to STOP!”

My mental conversation at that time might have gone something like this, “Oh my goodness! It is so hard to watch him get slower and slower, to become thinner by the day. I have to DO MORE to help him every day! How long, God? How much longer will this last? Can I keep going until the end?”

Now I am on the other side. Carlton is in Heaven. He is no longer sick, and I am no longer a caregiver. I made it until the end of his life! From this perspective and looking back, I am so thankful for the time we had together, even though it was the most difficult thing I have ever done.  

Here’s another look at perspective. Before Jesus was born (which we celebrate as Christmas), the world was looking for a Savior as they had been doing for many years, especially during the 400 years between the Old and New Testaments of the Bible. If we had lived during that time, our perspective might have led us to think, “God, how much longer? Are you EVER going to send help? Will you ever answer our prayers and send us a Savior?” It must have taken a huge amount of faith to keep on believing during that quiet time when it seemed nothing was happening.

Now our perspective is different as we look back at Jesus’ birth with adoration and worship. It takes just a small amount of faith to believe in recorded history. Looking forward to something that hasn’t taken place may be difficult. It may require much faith. Looking back, however, is when we see how God worked, how God was with us all the time, how God preserved us and helped us when we didn’t even see it.

Today, wherever we are in our caregiving journey, or even just our life journey, let’s look back with thankfulness as we recall God’s mercy and His care in the past. Then let’s look forward and thank God ahead of time for where He is taking us.

As I am preaching to myself, I can look back and say thank you to God for His care for me and for you all who have encouraged me. And I can look toward the totally unknown future ahead of me and say, “God, I know you will be with me in the future as you have in the past. I know your plans are best for me, whatever they are.”

Thanks be to God for His love and care for us.

Posted in Caregivers, expectations, forgiveness, friends, God, Grace, Healthcare, kindness, Parkinson's Disease

Great Expectations

As you think back to this past Thursday, Thanksgiving Day, did everything happen just as you expected?

Is your current situation how you expected life would be at this time?

December, January and even February will bring more holidays. Do you have grand expectations for those events?

How will you feel if those holidays don’t measure up to your expectations? Expectations have always been a problem for me. In my mind I build up these grand and glorious events to be something amazing, and then when the day or event occurs, it doesn’t come close to how I expected it to be. Sometimes the actual event is much worse. Sometimes much better.

When I decided to write about this topic today, I realized that I was leaving myself open to being quite vulnerable, but if I cannot be honest and genuine about my feelings, my writing is in vain. One of my internal struggles is with expectations, both concerning my actions and those of my family and friends. I expect and hope that certain things will happen, and then when they don’t happen, I am terribly disappointed. I tend to also compare my experiences to those of other people, expecting mine to be either the same or better. And when that doesn’t happen, disappointment sets in.

Thinking back over my life about these disappointments, I have come to some conclusions with the help of God and several friends. Here they are:

First, I cannot control what other people do or say. I can only control how I respond or react to people and events. My goal is to refrain from placing expectations on people which frees me to accept them as they are. In turn, I want to respond with kindness, compassion and love, and I want to spread peace – the peace of Christ. Sometimes that is difficult, but I believe it is a Godly goal.

Second, real life is sometimes messy. We actually live in the unexpected. Thing happen, pipes break, pieces just don’t fit, and events don’t always unfold in the way we plan. As we care for our loved one whose physical condition is constantly changing, we never know what new issues tomorrow will bring. It might even be said that things SELDOM turn out as planned. So, there is even some merit in expecting the unexpected, and then being pleasantly surprised when nothing interrupts our plans!

So, this week and every week, my first task is to temper my expectations and allow others to react and respond in their own way. I can hope or wish certain things will happen, but I can only control a fraction of real life. And that is mostly myself and my reactions.

My second task is to respond with grace and acceptance. Allowing people to be their own genuine self is extending peace and grace to them. By doing that, it frees me to be myself as well. Since I cannot even live up to my expectations for myself, who am I to expect others to live up to my expectations of them, especially unspoken expectations.

That thought leads me to the topic of unconditional love which God the Father shows to us every day. We do not (and cannot) do anything to earn or deserve God’s love, grace, and acceptance. He extends it freely.

Let’s extend grace this week because grace has been given to us. “Freely you have received. Freely give.” Thanks be to God for this incredible gift.

Posted in Caregivers, Degenerative disease, Encourage, friends, God, health, care, caregiver, chronic disease, Healthcare, help, Parkinson's Disease

It Takes a Crowd

Good morning, Caregivers. Today I am thankful for you and your dedication in caring for your loved one with a chronic disease such as Parkinson’s. I am also thankful for what I believe is my job today and going forward. It hasn’t changed from when I began this blog, but I’m thinking of it in a new way today. My mission is to be like 2 little-known men in the Bible, Aaron and Hur. Their story goes something like this.

In Exodus 17:1-16, the children of Israel were quarreling, which was nothing new. But they were also being attacked by the Amalekites. Moses petitioned God to help the children of Israel, while Joshua was commanded the troops in the battle. So, Moses went to the top of the mountain, taking Aaron and Hur with him, as God had commanded him. When Moses held up his staff toward Heaven, Joshua and the children of Israel were winning the battle. But when Moses got tired and lowered his hands, the direction of the battle changed, and the Amalekites were winning. Aaron and Hur realized this and took it on themselves to help Moses by keeping his hands and staff raised toward heaven. They propped up his hands. They aided in the battle, not by fighting directly, but by encouraging and supporting Moses and his hands, literally and figuratively.

In this story, the struggle with any disease can be likened to the Amalekites and the battle.  Moses is YOU, the caregiver. Aaron and Hur are your family, your friends, your faith, your church family, your pastors, and all who text you, send you cards, call you, and help you make it through each day. All who build you up and keep you going mentally, emotionally, spiritually, and even physically are part of the crowd that it takes to keep your arms up!

Wherever we are in the battle against Parkinson’s or any other degenerative disease, through this story we can see that we need people around us to help us. We need people to prop up our arms, to encourage and support us. I am honored to be part of that team for you. While I cannot be with each of you physically, I can pray for you and remind you to not give up. God is with you, and He is sending resources your way to hold up your arms in the battle.

In addition, each one of us can be Aaron and Hur to others. We can help each other because we truly understand what we each are going through. It is interesting that the Bible never says that these 2 men said anything specific to Moses. But they were there for him when he needed them.

This is a great week to thank those who are there for us, and it’s a great week to reach out to someone else whose arms might be tiring. Let’s prop them up.

Thank you to each of you who have encouraged me and supported me and walked alongside me while Carlton was battling Parkinson’s. You blessed us by propping up my arms!

Happy Thanksgiving, Caregivers!

Posted in calm, Caregivers, Degenerative disease, Encourage, freezing, Frustration, health, care, caregiver, chronic disease, Healthcare, Panic, Parkinson's Disease, patience

Frustration and Panic

My goal is to support and encourage those who care for a loved one with a chronic or degenerative disease like Parkinson’s Disease. And in doing that, today I want to relate two stories from my time as caregiver for my husband.

Fear, distress, anxiety, feeling overwhelmed, frustrated, and then PANIC! These emotions are felt by most of us sometime in our lives, and we usually overcome them easily and quickly. But for those with limited mobility or cognitive impairment, slight experiences become magnified.

Extreme frustration happened several times during hubby’s 23 years with Parkinson’s. The most memorable time was when we were in a government office, and the employee began to argue with him about the cost of a license. The situation escalated quickly, and I realized the intensity when hubby began to have dyskinesia. He legs and arms began flailing about in exaggerated motion. After a few minutes of uncontrollable movement, I realized he was also stuttering. He just couldn’t find the words to say to the clerk. This was frustration infused with anger and helplessness.

Extreme panic occurred several years ago when my husband froze while in his lift chair. He had had times of freezing while walking, but never freezing while seated. He was alone in the house, so I am not sure how long he was immobile. I am sure, however, that he was in full panic mode when I arrived home. When I first saw him, his hands were tightly would around the arms of the chair, and his heart rate was elevated. Dyskinesia had set in. He could barely speak, and the details of what happened seemed confusing to him. It took me the best part of an hour to calm him, and I realized that this was a turning point in his care. We were going to have to make some changes.

So, what do we do when our loved one experiences extreme emotion such as frustration or panic? Our first thought is to panic, but that will not help. Our next thought might be to ask 100 questions about what happened. For our loved one, that also will not help, and accusing them of not being careful, or making any kind of judgement will also not help.

Calm is needed as we assess their condition. Calm is usually achieved with a soothing voice, a gentle touch on the arm, and a change in focus. Some of these suggestions might run contrary to our natural bent or our first instincts, but with our loved one’s condition, CALM is the best route to take. When we remain calm, it can be contagious.

Thanks for reading and commenting, and I pray that you have a calm week ahead.

Posted in Uncategorized

Holidays With No Regrets

Last year at this time I remember these thoughts running through my head:

  • What if this is hubby’s last Thanksgiving?
  • His last Christmas?
  • Should I decorate the house? It’s so much work, and I have very little energy left now for things like decorating.

After debating in my mind for several days, I decided to decorate minimally, and with things that would make him smile. I put decorations near his bed in his line of sight so he could see them as he woke up from naps. I put decorations near his lift chair for the very same reason. I even got out the few decorations that were difficult to put together but were things he really liked. I made sure he watched as I set up the nativity scene that his aunt gave us when we were first married – little things like that. He commented briefly, but I didn’t make a big deal about them.

When we asked him what he wanted as a gift last Christmas, he said he wanted a yellow Tonka truck. He had wanted one as a child, but he had never received one. Looking back, I am so glad that was one of his gifts last Christmas. He was thrilled. He also mourned the loss of his black Labrador retriever. And while I couldn’t give the green light on getting an exact replacement, our grandson did get him a soft stuffed dog. That dog stayed on his bed or in his lap until he passed away. We are so happy that we gave him those gifts, no matter how trivial they seemed.

This time last year we were getting ready for his last Thanksgiving and last Christmas on earth, and I’m glad we went the extra mile to make them happy for him. I did not really have a premonition. Honestly, I had wondered if it was his last holiday season for the past several years, so I’m glad I followed my heart and made each day special.

We do not know how long we have with our loved ones here on earth. So, let’s make these holidays memorable. Let’s have no regrets because we didn’t make the effort or take the time to make them pleasant for our loved one. One day when we look back, we want to be able to say that we did our best to keep them clean, safe, and even happy. 

Have a great week, and happy decorating!