Of Mantras and Music

To encourage and support those who care for a loved one with Parkinson’s Disease or any other chronic or degenerative disease – that is my goal.

Of Mantras (a statement or slogan repeated frequently)

People ask me how we have made it so long dealing with a disease like PD. My answer is 3 words – faith, family, and friends. We cannot imagine living with a degenerative disease like this without having a strong faith in God. He is our rock and our hope. When this journey is easy, faith is also easy. But when this journey is difficult, that is when our faith is tested.

And in those difficult times, I find myself quoting a mantra that comforts me. Sometimes it is a verse from the Bible, sometimes part of a creed, sometimes a memorized prayer. And in those moments, those truths comfort me.

This week I have heard of several saints who have passed from this life into Heaven, and I have thought of several truths that have become mantras to me.

• “To be absent from the body is to be present with the Lord.”
• “God is in control.”
• “In life and in death we belong to God.”
• “God bless you.”
• “God is with you.”

Each of these is comforting when we examine their meaning, because it takes the situation out of our hands, and it places our lives into God’s hands. This is the God who is all-knowing, all-powerful, and always present everywhere. What a comfort to know that our life and our death are in God’s hands.

Some have suggested that mantras or repeated prayers or phrases are useless and said without thought or meaning. I would argue that when life is hard, we need a phrase, a verse, a song, or a creed, that has become automatic, and that will calm us and remind us of our faith.

I encourage you to memorize verses from the Bible or words to songs that encourage you and build up your faith. Most of us have memorized the Lord’s Prayer, the Serenity Prayer, and passages from the Bible. When faced with a crisis, we will recall those automatically, and our faith will increase.

Of Music

Music has played a major role in our early lives and in our marriage. Often when I am struggling emotionally, a song will come to mind. Most often it will be a hymn or gospel song I learned as a child. Just singing it, humming it, or listening to a recording of it will give me the boost of faith that I need at that moment.

Yesterday I played the piano for my husband, hoping it would soothe his troubled mind, and it seemed to do just that. I even took requests for a few minutes, ending with a little game of “Name that tune”, which we like to do. Then we moved to the computer room where I played some favorites on YouTube for him. It calmed both of us, and we are so thankful for the place music has in our home.

On this caregiving journey, having faith in God has buoyed me over the years, but especially as we near the passing of my husband. It has given me the courage to keep going. It has kept my head above the waters of depression and despair. And that strong faith comes from knowing verses in the Bible, from praying and having phrases memorized to come back to in an emergency, and from hymns and spiritual songs I have memorized during my life.

When our faith is weak, it helps to talk with friend or Pastor.  When our faith is strong, let’s take the opportunity to thank those in our lives who have strengthened that faith over the years.

Five Minute Friday – PERMISSION

Have you ever had a friend in whose presence you always felt you had to be careful to not offend them? Did you feel you were “walking on eggshells” around them? I have felt that way also.

On the other side of the spectrum, I love to be around friends who like me for who I am and who give me “permission” to be real. To be myself. (With respect, of course.)

That is the kind of friend I want to be. That is the kind of wife, mother, grandmother, and mother-in-law, that I want to be. I want to accept you for who you are, not who I wish you were.

God is like that. In the book of Psalms David cried out to God and questioned God and even became quite angry with God because of situations in his life. Yet, God loved him. God forgave him, and God accepted him.

We can have that kind of relationship with God as well, no matter what we have done, what we have said, or how we have treated God.

He gives us permission to pour out our hearts to Him. To tell Him how we feel. Let’s do it respectfully, but let’s be real and honest with God, even when things are difficult. He can take it, and He will not stop loving us.

He is our example of how we should treat each other – with love and forgiveness.

We have permission to be real and honest, and we should grant that same permission to others.

Thanks be to God.

(This post was written for the website www.fiveminutefriday.com and it was literally written in 5 minutes. Some minor editing was done, as well as extra time to find the illustrations. Feel free to check out the website for other writers’ interpretations of “PERMISSION”.)

The Story of Two Advocates

My goal for this blog has always been to encourage and support those who care for a loved one with a chronic or degenerative disease such as Parkinson’s Disease.

And today I would like to do just that by encouraging you to be an advocate for your loved one, especially when they cannot or will not speak for themselves.

That word “advocate” can be a noun or a verb. Here are the 2 definitions from google.com:

noun – a person who publicly supports or recommends a particular cause or policy.

verb – to publicly recommend or support.

Just yesterday it took 5 phone calls by me and 2 trips to the pharmacy by my daughter to accomplish one little thing – a prescription that my husband desperately needed.

For the past 2 nights he has slept only 3 hours before insisting on getting up. This was the result of a lack of one prescription that had been ordered 4 days prior. Yet it had not arrived. So, I refused to believe I had to spend another night with just 3 hours of sleep. I put on my “advocate” hat and just did not give up!

Everyone at the office of the Hospice Company now knows my name, and some of them probably have a not-so-nice nickname for me, but if that is what it takes to accomplish my goal of a good night’s sleep, so be it.

As caregivers, we choose our battles. We must decide what cause is important enough to call 5 times in one day to get it, and to drive to the pharmacy and wait 30 minutes, only to get the wrong drug and need to do it all over again.

Being an advocate is sometimes hard work, and we never know when we might be called on to fight for our loved one’s well-being. Sometimes we feel like unsung heroes, but we do make a difference in someone’s life.

If this topic seems familiar, it could be because I wrote about it in February of 2020. The topic was the same, but the occasion was different. Feel free to check it out in the archive of blogs.

Have you had to advocate for your loved one? I would love to hear your story.

The Bible says that Jesus Christ is our advocate to God the Father in that Jesus paid our sin debt. (I John 2:1-2) Jesus is our Redeemer, our Savior, our Hero. None of us is perfect, and in order to have a relationship with a perfect God, we must have our sins forgiven. That was accomplished by the death of Jesus on the cross, and it was finished when Jesus arose on Easter Sunday, which we just celebrated.

Have you placed your trust in Jesus as your advocate? If you want to know more about how to do this, please send me an email and I would be happy to explain more.

Five Minute Friday – PRESSURE

Get it right. Keep it clean. Be sure you have done everything possible. Don’t give up. Take time to care for yourself. Read more about Parkinson’s Disease. Be sure you know the name of every medication he takes. And I could go on and on.

These instructions I hear in my mind as I care for hubby each day. Each one adds another layer of pressure to my life. Each one adds another reason to be stressed. To be worried I won’t succeed.

I could become totally stressed. I could become depressed because I can’t keep up. I could even give up and walk away. Sometimes this job is just too much.

But then I remember that diamonds are formed under pressure. And diamonds are beautiful. I want to be like a diamond in that the end result of all this pressure is a beautiful soul who appreciates life even more than when it began.

God has given me this task – caring for my husband, and I know He will be with me each minute and give me exactly what I need to succeed to the best of my ability. Yes, the pressure is real. Yes, I get frustrated and sometimes feel I cannot do this any more.

But that’s when God winks at me by gently nudging a friend to call or send a card, by reminding a pastor that we might need a visit, and by giving my daughter and granddaughter the time off to take me away for a night.

Life brings pressure, no matter what our situation. But God. God is with us, He cares for us, and He gives us the strength and courage and knowledge we need to succeed in whatever task He puts before us. So let’s not let the pressure get to us, other than to press us into diamonds that reflect His glory to all who see us.

Beyond Understanding

I will never fully understand Parkinson’s Disease. Just when I think I do, hubby does something that doesn’t fit that mold I have built in my mind. Perhaps we can never predict a disease that affects the mind because we don’t fully understand how the brain works.

How can my intelligent husband who is usually logical and rational turn to me one day and say, “When did we move to this house?” We have lived here more than 20 years and I have changed nothing in the last 5 years. Yet, all of a sudden, he doesn’t recognize it. That happened several months ago, and he still cannot be reasoned with as to being in the same house. Not only that, but he is obsessed with the fact that this is a different house, and he peppers me with questions about how we got here, how we are paying for it, etc.

How can my usually stable husband act as if he has no disease while the nurse is here, yet when we are alone his eyes glass over and he will not answer simple questions or make simple decisions like whether he is hot or cold? Does the chemistry in the brain change so often that he can walk across the floor one minute, and yet an hour later he cannot even stand without help?

Why can he eat mashed potatoes one day with no issues, and the next day he cannot even swallow one bite without choking and coughing? And it is even more confusing when he can eat them again the following day!

How am I supposed to understand all of this?

There are many things I don’t understand, and Parkinson’s Disease is one of them. I could become depressed if I focus on that fact. But there are other things I don’t understand, and I choose to focus on one of those today.

Today and every day I want to shift my focus from this earth and “lift my eyes to the hills from whence comes my help. My help comes from God who made Heaven and Earth.”¹

I don’t understand it, but I know that God is the same, yesterday, today, and forever. And it is GOD who does not change, who loves me, who sent His SON to die for me many years ago. It is easy to remember that on this Saturday between Good Friday and Easter Sunday, but I want to remember it every day.

It is GOD who is here with me on the brightest days and on the darkest days. It is GOD who tells me, “I will never leave you nor forsake you.”²

It is easy to be consumed with caregiving when it is constantly calling on us to attend to our loved one. And we must do the work to care for them. However, it is God who is our help, our hope, and our sustainer. While we clean and help and take good care of our loved one, let’s lift our eyes to the Heavens and call upon God for help. Let’s call upon God for who is our hope. Let’s call upon God who sustains us and keeps us in HIS CARE!

God bless each of you as we give care here on earth and receive care from our Father in Heaven.

*1 Psalm 121:1

*2 Hebrews 13:5

Five Minute Friday – Gentle

When I read this topic this morning, my response was instant. Every morning I see a living example of gentleness. As my husband lays in bed, not able to move on his own much any more, I see the most profound example of “gentle” every morning. The Hospice CNA arrives around 8 to wash him and dress him in clothes for the day, even if he chooses to stay in bed. We have 2 different aides who equally show gentleness and thoroughness as they care for him each morning. They don’t rush, they don’t pull or prod, but they move carefully and tenderly as they complete each task. They are a perfect example of “gentle”.

Yesterday I saw another example. Our oldest granddaughter cared for hubby while I ran an errand, and the just the tone of her voice as she spoke to him demonstrated a gentleness and love that brought tears to my eyes. She has not known him apart from his Parkinson’s Disease. Yet she has adapted over the years as he has grown more frail by the day.

God’s sent Jesus to earth to be an example of gentleness. When Jesus washed the disciples feet on that Good Friday night long ago, He gave us an example of love even as He knew that one pair of feet belonged to the man who would betray Him.

Today, let’s think of gentleness even to those who would do us harm. That’s love. That’s God’s love. Gentleness and care.

All of the Answers

I hope you smiled as you read the title of today’s blog. Perhaps you were thinking, “FINALLY someone will give me the answers. FINALLY someone will help me solve all of my problems!”

If that is what you thought, I’m sorry to disappoint you, but that isn’t going to happen here. The bottom line is that I don’t have all the answers. Frankly, I don’t even have all the questions.

But my goal is to encourage and support those of you who care for a loved one with a chronic or degenerative disease. And even when I don’t feel very positive, and even when I don’t have any answers and even more unspoken questions, I hope I can accomplish that goal.

This pathway we are on, this caregiving journey that seems endless at times, places question after question in front of us. And the questions become more complicated with each step. But each day we are gaining more experience and hopefully more knowledge about caregiving, so that we will be prepared to solve each new problem and answer each new question.

So, since we don’t have all the answers, what is it that keeps us from giving up? From throwing in the towel? From walking away? Many have done just that. But we haven’t, and we have had the opportunity. Each day we make the choice to stick with it, or just declare, “I’ve had it,” and walk away.

This job, this calling, this responsibility, is not for the faint of heart. It is not for the weak or wimpish! You and I are not weak. We are not faint of heart, and we are not wimps. We have chosen to step in and step up and be the caregiver for our loved one. And we do it because we love them.

Yes, it is love that keeps us in place and that gives us the courage and wisdom to know what to do in a crisis or even in just the everyday chores of caring for them. Sometimes we have to call on that love to give us the energy and will to stay.

And it is God who keeps us here. God gives us the energy and the compassion and the strength to help us overcome our fears (whatever they may be), and our inadequacies (and we all have them), which might cause us to give up.

There are many times when I don’t know what to do. There are many times when I don’t even WANT to do what I know must be done. In those times I run to God, my Heavenly Father, and I ask Him for wisdom, for strength, for the courage I need to do the task in front of me.

Sometimes I soldier on begrudgingly, muttering under my breath about how much I hate doing this or that. Sometimes I quickly get passed that point and can do what needs to be done with a smile. Sometimes I have to take a break before I can move on. But God is there. He doesn’t judge me. He loves me still, even when I am weak. He wants us to ask for His help, and He will give it willingly.

So, my friend, as we care for our loved one today, we won’t always have all the answers. We won’t always enjoy every aspect of caring for them. But we will do it because of love, and because God is with us and gives us the strength, the courage, and the wisdom to accomplish this. God is with us. That is the answer.

Let’s Keep Moving

When meeting someone newly diagnosed with Parkinson’s Disease, my best advice is to exercise, exercise, exercise! Keep moving. Moving more now will slow the progress of the disease and the worsening symptoms. In order to stay active longer, KEEP MOVING!

During the first few years after my husband was diagnosed with PD, he walked one-half mile every day to get to his job. I believe this helped him stay mobile longer with this disease.

In that instance we did not call it “exercise”, so he did not dread walking. It was just part of getting to his job. So, if your spouse is already active, don’t encourage them to slow down or worry about them doing too much. Instead, encourage them to keep going.

If they are not really moving much, or if you feel more is needed, there are great options available. Some classes are offered at gyms, senior centers, or other meeting places, and some charge a fee. Besides these, there are several great programs that are free and even fun!  Some are designed to be done while standing, but chair exercise is another alternative, especially when balance is a problem.

One of the best programs to keep your loved one moving and energized, is the “Big and Loud” program. Many who have gone through this program have been helped by it, especially when they continue their exercises at home and after the program is completed.

Another, Move and Shout, (perhaps a take-off on the “Big and Loud”), was recommended by a speech therapist we met. She suggested that we do this together, and that turned out to be a great plan. It gave us something “active” to do as a couple. We made it part of a regular routine for a while.

Earlier this week I read about the British Gymnastics Foundation that has published videos of exercises for seniors. “The programme is chair-based and helps to improve memory, balance, flexibility and co-ordination.” It is also free and online, and it can be done in groups or pairs. This one is called “Love to Move”.

 If motivation is an obstacle with your loved one, you might consider spinning this idea of exercise as if YOU are the one needing it, not them. They would be doing YOU a huge favor if they would do it with you, since you need some prodding. A little bit of “Carrot and stick” might also work.

Truthfully, any kind of movement is valuable, especially as the disease progresses, so we cannot give up. We have to keep trying different things that might help keep our loved one moving, even a little.

And let’s not forget ourselves. Lately I have been so busy caring for hubby, that I have neglected my own exercise. So, I publicly state that I am committed to exercise a total of 30 min per day this week. Let’s see if I can do it. Can I get anyone else to join me?

Thanks for reading, thanks for commenting, and LET’S KEEP MOVING!

Five Minute Friday – REDEEM

Being a “baby boomer”, my first thought upon seeing the topic was GREEN STAMPS! I grew up in a lower middle class home where we saved S&H green stamps and yellow TV stamps religiously. It was my job every Sunday afternoon to lick the stamps in put them in the saver booklets. After that, it was my pleasure to look through the catalogues for each to see what kinds of things we could get in exchange for the stamps.

Being a retired mathematics teacher, my second thought was that doing that taught me so many mathematical principles, especially when they came out with “tens” and even “hundreds”! I didn’t have to lick so many! I discovered place value and number sense by licking trading stamps. Imagine that!

Now to today, my thought of “redeem” takes a different turn. In this season of my life my time and effort is spent caring for my husband who is in the final stages of Parkinson’s Disease. Case in point, I cared for him non-stop today from 6 AM until 3:15 PM without a break, when it suddenly dawned on me I had had no time for myself the entire day.

But one day my husband will be in Heaven and in God’s care. Today I am redeeming the time I have by caring for him, but one day I will have more choice in how to spend my minutes and hours. This is where I need to be today, using my time in taking good care of both of us.

Happy Double Anniversary

The first anniversary has been in the news this week, especially on Thursday, when our President spoke about it in his first primetime address to the country. In one respect this is not an anniversary we are pleased to celebrate – one year of the pandemic called COVID-19. We have been through a year of loss of jobs, reduction in income, depression, frustration, and death. Many of you have been affected in those ways and others. It has been a year of loss for so many people. I would never want to minimize that.

After our mourning, however, it is appropriate to also give thanks for the many good things that have happened during this last year. I have seen an outpouring of generosity from strangers, I have witnessed compassion from unlikely sources, and in these times of crises, people are beginning to think of helping their neighbor for the first time, at least the first time in a long time.

How have I changed during this past year, you might ask? I have become more thankful for the little blessings like the first iris of Spring,

The fat Daddy Bluebird watching his house from the fence,

The beautiful pink tree that adds such welcomed color to the landscape,

The smile of our grandson visiting today because we have had our 2 vaccines,

And another day with my dear husband.

What makes you smile today? How have you changed positively in the last year, and for what are you thankful today?

The second anniversary is totally a happy one. This is the end of 3 years of this blog!

I began writing on a whim, after asking the advice of my local Parkinson’s support group. Through this blog I have made friends in many states and countries, and I have learned so much about Parkinson’s, about myself, and about writing. This has given me a way to express how I feel about caring for my husband, and I have discovered that many of those feelings resonate with others like you.

As my goal has been to support and encourage you, the result has been that YOU have supported and encouraged me. We are not alone in this task of caring. We have each other, we have friends, families and churches who stand with us, and we have a Wonderful God who sees us, knows us, loves us, and cares for us.

Thanks for reading, for commenting, and for your support. God bless you.