Posted in God, health, care, caregiver, chronic disease, Healthcare, Parkinson's Disease, patience, perseverance

Peace in the Storm

Real life is full of storms. It’s a fact that we cannot escape no matter how much money we have, how much education we have, who our ancestors are, or how big our house might be. Storms will come.

Disease brings storms, difficulties, messy situations, frustration, and even chaos. And the longer the disease lasts, 23 years for us, the more frustrating it can become. As caregivers we are dead center in the middle of this storm, and sometimes it feels as if it will never end.

The truth is that we don’t know when it will end, so we can’t predict how much longer the storm of disease will last. Sometimes we feel like giving up. It’s just too much. We might even think we cannot go on another minute, another hour, another day. We are weary of the chaos, weary of the work it takes to accomplish our goals which are to keep our loved one clean, calm, and maybe even content!

We know there are little things that help us cope in these situations. We can take a quick break by leaving the house, we can listen to music that calms our souls, we can take a few moments to read our favorite book, we can call a friend and vent, or we can take a minute to work on a hobby that we enjoy.

But sometimes none of those things help, and sometimes we cannot get away to do any of those activities that feed our souls. We must stay there in the middle of the messy situation and clean it up. How do we find peace in the middle of the storm while it is raging all around us?

There is no magic formula. There is no “one size fits all” cure or bandaid that will work every time. But there is a place to go to ask for help, and we don’t have to move our feet to get there.

No matter our history with God, no matter our spiritual inclinations, God is with us wherever we are right this minute. And God has made many promises about what God will do in and through and for us, no matter who we are. This really goes back to the character of God as we know it.

It is true that God is omnipresent – everywhere all the time. So God is with us while we care for our loved one, in the bedroom, in the bathroom, in the garden when they fall, in public places when they freeze while trying to get through a door, etc. We can trust that to be true.

God is omnipotent – all powerful. So, God has the power to give us peace when we most need it. God can calm our spirit and give us the right words to say to help our loved one through difficult times. God can comfort us when our loved one passes. God can do whatever we need.

And God is omniscient – all knowing. God knows what we need even before we ask, and He wants us to ask as a child would ask a parent. God gave us promises in the Bible to remind us that He will be faithful to keep His word. We can count on God to keep His promises.

My parents used to have a book of 1,000 promises of God found in the Bible. Even though I don’t have the book any more, I can Google the promises of God and find a printable copy of 50 right at my fingertips!

Here are the first few to whet your appetite.

Exodus 14:14 The LORD will fight for you; you need only to be still.

Isaiah 40:29 He gives strength to the weary and increases the power of the weak.

Isaiah 40:31 but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

God is with us, my friend, no matter where we are. He loves us and will help us, no matter our circumstances. We can count on HIM!

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

Posted in Healthcare, Parkinson's Disease, health, care, caregiver, chronic disease, depression, Degenerative disease, faith, God, Encourage

Peace through Sadness

Sometimes, but thankfully not always, it seems that everywhere we look there is sadness. This was one of those weeks. As a self-proclaimed problem solver, I wish I could fix things so that people won’t have to be sad anymore. I wish there was no more death. No more pain. No more depression. But that is not possible in this life. (More on that in a minute.)

Many of you will remember that I asked prayer for a dear friend with pancreatic cancer about a month ago. She passed into Heaven the very next day. All of us who knew her are still sad that she no longer brightens our day, which she did, even while battling cancer. But she is in a better place – no longer sick, no longer in pain, and there is no more chemo or radiation in her future!

This past week brought more news of sadness to my heart. A dear friend in her 50’s and a former student in his 20’s both ended their lives tragically due to depression and despair. Sorrow upon sorrow for those who knew them.

And many of us struggle as caregivers while watching our loved one’s condition deteriorate. That is the way it goes with a degenerative disease. Each day there is a decline, whether noticeable or not, whether great or small. As we notice the decline physically, we begin the grieving process. In some cases, there is cognitive and mental decline as well, and that brings sadness upon sadness.

I don’t understand why my dear friend left us for Heaven so early. I don’t understand why my 2 friends ended their lives this past week. Why couldn’t we help them? Why can’t we find a cure for cancer and for Parkinson’s Disease so people don’t have to suffer. Why can’t we find the cure for your loved one’s condition? I have no answers to those questions.

But I have learned from my Pastors that when we don’t have answers, it helps to go back to what we DO KNOW. So, here is what I do know:

  • God is always with us.
  • God loves us unconditionally.
  • God asks us to trust His wisdom in everything – the good and the bad.
  • God is faithful and true and worthy of our trust.

Yes, I could go on and on naming God’s attributes. But suffice it to say that when I focus on God’s character, peace comes to my heart. It is the peace that passes all understanding. And God reminds me again that He will never leave me nor forsake me. I hope you feel God’s peace today.

Thanks for reading and have a great week ahead.

Posted in Caregivers, Encourage, friends

Come Along Side

My goal as a blogger is to encourage those who care for someone with Parkinson’s Disease or any other chronic or degenerative disease. I was the main caregiver for my husband who actually thrived while having Parkinson’s, and just 4 months ago he passed from this earth into Heaven. It was a long 23-year journey that was filled with ups and downs, pros and cons, blessings and other times that didn’t feel very blessed to me.

This week a friend encouraged me to think differently about my former roll as caregiver and my current roll as part of the family that grieves the empty seat at our table. Her advice was to walk beside or come along side whomever is with me.

As a caregiver sometimes we feel like we are in control, like we make all the decisions, like we are leading our loved one through this journey. And sometimes we move faster than they do, causing friction.

As one who is grieving, there is no time limit on this process either. There is no speed limit. Each of us grieves at a different pace.

So, perhaps each of us needs to sit beside our loved ones, feel their pain and their journey, just as we feel our own. We can even do this caregiver to caregiver.

There are times that we feel this difficult time will never end. Maybe we can remember each other during those times. We have sisters and brothers who are going through similar trials and difficulties.

We can reach out to them for help when we feel overwhelmed.

We can also reach out to others when THEY feel overwhelmed.

We don’t have to know what to say. We don’t really need to DO anything, but be present with them. We don’t have to solve any problems, we just have to be available.

So, this week, if you need me, I will sit with you in the dark.

Are you willing to sit with me?

Posted in Attitude, Caregivers, change, kindness, Parkinson's Disease, patience, positive

Who do I want to be when I grow up?

When I think back to my childhood and the elderly people who were in my life, I would give them mixed reviews. Some were mean like one neighbor who used to yell at us to get off his lawn.  Some were curmudgeons who never said much, just had a scowl on their face and seemed to grunt, “Hmph” at everything that happened. Some were hyper-critical, and NOTHING seemed to please them. I tried to stay away from those people.

But then there were others who were so welcoming, so kind, so accepting and even encouraging. Of course, I gravitated toward those people, and I wished that everyone could be like them. They were Godly examples to me.

I remember thinking that I wanted to grow up to be like the latter group, the group of kinder, older people. I wasn’t sure how to get to that point, but I made a conscious decision to find out how to join that group. No one wants to be around grumpy people, right?

Over the years I have learned that life is a process. We don’t grow up in a day. We don’t develop our personalities in one day. Little by little, day by day, we have grown into the person we are today. And we are still changing, still growing.

I believe that caregiving changed me over time. Caring for my husband through this long, slow disease called Parkinson’s helped me develop patience. Please don’t misunderstand. There were plenty of times I was NOT patient with him. But caring for him day after day, mess after mess, interrupted sleep after interrupted sleep, showed me that life is a process, and death is a process. Sometimes that is a SLOW process, but it is not ours to control. It is God’s. God was teaching me to wait for Him and to trust Him.

During those difficult times I prayed to be more loving, more patient, more kind. I also prayed to be better, not bitter. That’s who I want to be when I grow up some day. I still pray for that every day because I have not yet arrived.

We can think of ourselves as a block of granite and God as the sculptor. Just as the sculptor chisels off tiny pieces of the rock to unveil his masterpiece, so God teaches us to be more like Himself one little piece at a time. It is a process. Becoming more positive, more accepting, more generous, more loving, more like Christ in our actions and attitude – it takes time and patience. And God has both!

So, let’s not grow weary in the process, my friend. We are all here to help each other as we look to God, the author and finisher of our faith. He is working in us to mold us into those who are like Him, having His characteristics – love, joy, peace, gentleness, goodness, faith, self-control.

Posted in Journal, Parkinson's Disease

Let’s Change up our Journals

Many of you already journal about your journey as a caregiver to someone with a chronic or degenerative disease like Parkinson’s Disease. If you don’t, I suggest that you begin today, even if it is just bullet points or brief lists.

You don’t have to write every day. Just write when the mood strikes you or when something significant has occurred. But wait. That is how I journaled, but it is NOT what I am suggesting today.

Today I want to encourage you to write down the positive things besides the symptoms or negative aspects of your loved one’s condition. Write down things that surprise you, things they say that make you smile, or even private jokes or stories the 2 of you share.

To illustrate my point, I waxed poetic today. I hope you enjoy it.

A Caregiver’s Journal

I wrote about the big things that bothered me each day.

I wrote about the changes all along the way.

The small things were annoyances that made it to the page

But always with a disclaimer that “these things come with age.”

Yet, as I documented every symptom, every mile,

It seems I plumb forgot to note the things that made me smile.

Whenever he said, “thank you”, or when “you’re doing well,”

I quickly overlooked those when my pen to paper fell.

And then there were those private jokes before he went to bed,

But I couldn’t really find those as my journals I re-read.

There were those sweet and light times that I will always treasure.

They were brief but surely times that brought us so much pleasure.

So, if I journaled one more time, I’d surely change things up,

I’d document the funny things, the story of the pup

That made us laugh or made us smile or lightened up the mood.

I’d let some difficulties go and talk about the good.

Some things are necessary to be told, we need to write them down

But memories of our precious times have now erased my frown.

Have a great week ahead, and I would love to hear some precious memories you make this week. God bless each of you and your families.

Posted in Degenerative disease, hope, Hospice, Parkinson's Disease, Photographs, positive

HOPE

Today’s post is in 3 parts:

An Update

Please pray for my friend with pancreatic cancer whom I mentioned last week that the Hospice staff will be able to manage her pain. Also pray for her husband, her caregiver. It was a privilege to be able to visit them this week.

A Caregiver Tip

Here is something that I have been thinking of this week. Take photos of your loved one both awake and asleep at various intervals throughout this journey. You may be very glad to have those one day. My most precious ones are of hubby in the last week of his life. They are comforting to me even now. While the last photos are too emotional to share today, here is one from Christmas, just 6 months before he passed. The stuffed dog was a gift from our youngest grandson, and it stayed with him every minute of those 6 months.

HOPE

Some of you have mentioned that my writing has taken a different tone since my husband passed into Heaven this past May. That was not my intent, but I suppose it is a natural progression as things have changed for me. Your comments have led me to add something to my goal which I wrote when I first began this blog in 2018, and I have repeated almost every week.

My goal is to support and encourage you who care for someone with a chronic or degenerative disease, and to give you HOPE that the future will be brighter than the present.

The addition is at the end – HOPE. Here are a few things to remember:

When life is messy, please know that it won’t always be that way.

When you feel as if caregiving will never end, remember that it will.

When you are just plain tired, you can rest in the fact that you are doing your best.

One day all of this will be a memory, not a current reality.

Today I leave you with HOPE that there is life after caregiving. I pray that encourages you and gives you the motivation to press on with a positive spring in your step. Have a great week and know that I am praying for you.

Posted in Caregivers, friends, health, care, caregiver, chronic disease, Healthcare, Hospice, Parkinson's Disease

Friends

When you read the title of today’s blog, what was the first thing that came to your mind? Was it the television show “Friends”? Was it a song like “Friends are Friends Forever”?

If I had titled it “People”, you might have thought of “People Who Need People”, a song by Barbara Streisand. Each of those things take me to my topic for today.

No matter where we are in life, at least in my experience, friends are important. People are important. In life and in death, having people to walk beside you and comfort you can be a blessing from God. People can and should be God’s messengers, God’s angels with bodies, to help us navigate difficult times here on earth.

My goal is to encourage and support those of you who care for someone with a chronic or degenerative disease, like Parkinson’s Disease. And I can give testament to the fact that many of you, my friends and family, provided support and encouragement for us during those 23 years that my husband had PD, and you have not stopped since his passing into Heaven. I am so thankful for you.

As patient and caregiver, when friends reach out to us, here are a few things to remember. First, be thankful when they text or call, but if the timing is bad, just tell them you’ll get back to them when you can talk, and don’t feel guilty about that. Caregivers have more tasks to do than non-caregivers realize, and some chores must be done NOW.

Second, if they offer to help, you don’t have to accept every time, but please accept their help sometimes. They need to help you as much as you need help. It also keeps the lines of communication open. If you refuse their help every time, they may stop asking and/or stop calling. Let them know how much you appreciate their offers.

There is not space here to talk about negative friends or friends with nefarious motives, but we all know they exist. Those are not the friends we should encourage or continue to communicate with.

My final words today are to the friends of those who are ill and their caregivers, because I am one of those as well. In fact, this is fresh on my mind as one of my dear friends is ill with pancreatic cancer right now, and her doctor has suggested Hospice care, just this week.

She may be reading today, so here is my promise to her as her friend.

My sweet friend, I wish I could “fix” your cancer. I wish I could take your pain that you have suffered for so long. But I can’t. I cannot even say I know how you feel because I really don’t.

But here are 2 things I can do for you. First, I can pray, and I have been praying. Right now, I am praying that God will ease your pain, and that God will give you peace to relax in the knowledge that God loves you and is working out His plan for your life. “In life and in death, we belong to God.”

Second, I want to help in any way I can. You are a very private person, and you may not want me to see you cry or to see you in pain, but if you want me there with you, I would be honored to walk this road with you and your husband. I am holding back, not wanting to push myself into your personal space. But if and when the day comes that you want me with you in your home, I am ready and willing.

I love you

-Cheryl

Posted in Uncategorized

How Things Have Changed – Part 2

Last week I talked about the positive changes in my life since my husband’s passing into Heaven in May of this year. It was a long road, 23+ years, with so many long days filled with caregiving. You probably know exactly what that means!

This week I want to tell you about some of the negative things I have noticed since his death.

First, the house is so quiet. No one is calling me to do anything for them – get him a drink, bring him the remote, prepare dinner, bring him his medications, cover him up, etc. Does that sound like a negative? At first it seems that way, but it is actually a positive! I get to decide what sounds are made – the television, music playing, talking to friends on speakerphone, or just quiet.

Second, there is no one but me to prepare meals for, so I have barely been cooking. In the past I cooked a meal 5-6 nights a week for hubby and me, but now there is no one to cook for. Does that sound like a negative? At first it seems that way, but it is actually a positive! I get to decide what to eat and when to eat and whether or not to cook! How cool is that?

Third, there is no one here to run decisions by, no one to ask advise from. But wait! Over the last 5 years I had been doing that less and less with hubby anyway due to his declining cognition. During this time I have developed other avenues from which to get advice – trusted friends, family members, etc. So, nothing has really changed in this regard.

I don’t really miss caregiving. I did not become a caregiver out of love for the tasks, but out of love for my husband and the knowledge that I was the best one to care for him, and home was the best place to care for him. So, I do not miss the tasks.

What I really miss is our relationship before his decline. I miss who we once were together. Back in the day we sang together in churches, and we played piano and organ duets together. I miss those days. We were very good together. But I am not delusional. Those days had their difficulties too.

A dear friend sent me a book about grief recovery, and it talks about remembering the good times and the bad times. The negatives and the positives. It is important to remind ourselves that every stage of life has its negatives and its positives. Caregiving has its positives – it is our time to show love and compassion for our loved one, spending valuable time with them. It also has its negatives – it is tedious, it is messy, it is long, and many times there are tears involved.

This new stage of my life has both – its negatives and its positives. But for me, the negatives in this stage are easily transformed into positives. I am loving this stage of life.

My prayer for each of you today is that you will feel God’s presence with you through the negative parts of life, no matter what chapter you are in at present, so that the positive aspects of that stage will be more obvious.

Posted in Caregivers, Changes, decisions, Degenerative disease, God, health, care, caregiver, chronic disease, Healthcare

How Things Have Changed

For the past 3½ years I have shared weekly my journey as a caregiver for my husband with Parkinson’s Disease. My mission has been to encourage and support all of you who care for a loved one. In many respects it has also been a journal for me to document the progress of this disease. I often wrote as we were faced with decisions at each turning point as the disease gradually worsened. Writing kept me sane. Writing gave me a purpose and an outlet for my frustrations and inner struggles.

I hope I did not weigh you down with all of that. I hope I helped you realize that we all go through similar, yet different challenges and hurdles in caregiving, and that knowledge somehow unites us as brothers and sisters with a cause. We are not alone.

On May 17th, my husband’s struggle ceased. He left this earth for a much better place, and I like to think of him as whole now, walking without hesitation or difficulty, talking loudly, singing, playing the piano and organ (if they have those in Heaven), and sharing stories with those who have gone on before us.

I like thinking of him like that. That brings me joy and helps me move on.

In the next few weeks, I’d like to answer some questions you might want to ask me, and if you have others, please email me or leave them as comments.

Today’s question – “What have been the biggest changes in your life?”

Here is a short list:

  1. The caregiving stopped suddenly when he passed. One minute I was his caregiver, and the next minute, after his last breath, I was NOT! I will never prepare a meal for him again. I will never change his Depend, feed him (which I had done for 3 years), dress him (which I had done every day for 15 years), or brush his teeth for him. It was exactly like a door that shut suddenly in my face! This was both a positive and a negative to me.
  2. I was washing 2 loads of laundry every other day when he passed. Now I wash 1 or 2 loads a WEEK! Isn’t that amazing?
  3. The house is so quiet. If I want sound, I must initiate it. And I get to decide what sound I want! That has taken some adjustment.
  4. When I leave the house, I can stay out as long as I want, and I don’t have to pay extra to stay out longer! I can even change plans after I leave, and I don’t have to worry about being home for medication time or because he will worry.
  5. My grocery bill is TINY in comparison! I get to decide what I want to eat and when, and if I don’t feel like eating, no one questions me!

These changes are mostly positive. Yes, there are a few negatives, and I’ll share some next week. What else would you like to know? Please email me if you don’t want to leave a public comment.

Today I pray that God will make His presence real to you this week so you will know that He is with you. Have a great week ahead!

Posted in advice, Caregivers, decisions, Degenerative disease, Future, God, guilt, health, care, caregiver, chronic disease, Healthcare, help, hope, Parkinson's Disease, Past, regret

No Regrets

My goal is to encourage and support those who care for someone with a chronic or degenerative disease. That sounds easy, but when you’re there in the trenches, cleaning up messes or explaining things for the third time, or changing a catheter bag, or trying to figure out how to insert an epi-pin, life can be lonely, confusing, frustrating, and overwhelming. I know because I have been there.

Besides the physical things I mentioned already, there is the mental frustration and pain of seeing our loved one decline mentally, of watching their body lose the ability to function independently, and of seeing them wasting away. Each of those takes its toll on us personally depending on our relationship to them. Gradually we must make all the decisions about finances, about logistics, and about their health and wellbeing. That is a heavy load for a caregiver, but it happens. It is reality.

How do we deal with the physical aspects of caregiving? We do our best, and then we call for help from family, friends, and professionals.

And the mental components of caregiving? Well, we do our research online and from others who have walked this road. We become as informed as possible concerning decisions that must be made, and then we choose.

After making decisions, we do not look back. We do not question ourselves by asking “what if”, nor do we say, “if only I had _______”. That is futile because we have already decided.

The key to no regrets is this: DO NOT LOOK BACK. As we do our best to care for our loved one, we leave it there. It is or it was our best. That is all we have.

And one day, when your loved one has passed as has my husband, you will look back with no regrets. It is a freeing feeling. It brings peace. It gives me permission to move on with my life, not looking back with questions, looking back only with love for my husband and for the time we had together when we laughed and shared good memories.

Period.

Nothing more.

Nothing less.

Caregiving is difficult. Caregiving is stressful. Caregiving is overwhelming at times. At the same time caregiving is a way to show love and compassion. It is a way to honor the life of our loved one and show them that they matter to us. Each of us is called to give it our best effort. And I can assure you that when they have passed from this life, you will look back with no regrets. You will have done your best, and you will have the freedom to move on.

God bless each of you this week with comfort knowing that God cares for you and sees your efforts. Don’t give up, my friend. You will not regret it!