Posted in Uncategorized

Did you say “Serenity”?

Some moments of my day are peaceful, and I feel serene. At those times I believe in the concept of serenity, and praying the “Serenity Prayer” is easy.

But then there are other moments in my day when something happens and things just get out of control and I think I’m losing it! Sometimes it’s my own doing – giving way to negative emotions of anger or frustration. Sometimes it is when I encounter some new medical emergency and don’t have a clue how to handle it, and other times life just gets messy and I wish I didn’t have to deal with it.

So how do we remain “serene” in the midst of chaos or sadness or stress or difficulties?

Google dictionary defines “serene” as calm, peaceful, and untroubled; tranquil. Does it say being serene will make our troubles go away? Absolutely not. But we do want to remain calm in the midst of trouble. That is our goal.

A dear friend reminded me recently of the “Serenity Prayer” and how helpful it can be in times of stress. The more I thought about it, the more I realize that it applies to all of humanity, no matter our age or circumstance. So each of us can apply it to our lives right now – to our situation.

For the caregiver, the first part of the prayer is the most important. “God grant me the serenity to accept the things I cannot change . . .” Whatever disease or condition our loved one has may leave us feeling helpless because we cannot control it. Yes, sometimes we can do things to slow the progress, but much of the future is out of our control.

What happens moment by moment in our homes is often out of our control. Accidents happen, spills happen, falls happen, messes happen, and while we always try to prevent them, some are bound to happen. Some are not preventable. They are out of our control. We cannot change the fact that they will happen, just as we cannot prevent a degenerative disease from degenerating. So we have to accept it.

But there are things I can change, like the second phrase of the prayer, “Courage to change the things I can. . .” There are a few things I have control over. Sometimes I have to make a list to help me see that there is hope and that I can take steps to improve my life. And even with all of that, I accept that some of those things will not happen, which takes us back to the first part of the prayer. But some will , and I can celebrate those changes in my life. The changes may be minor and seem insignificant to some, but if they bring me joy, they are positive changes!

And that takes us to end of the prayer, “And the wisdom to know the difference.” For me, the issue is not knowing the difference as much as it is remembering that there are 2 distinct categories – things I CANNOT change, and things I CAN change. My problem is focus. I tend to focus on things I CANNOT change, while forgetting that I can make a difference in other areas of my life. Sometimes I need to just let those first things go. If I cannot change it, why focus on it?

The purpose of this blog has always been to support and encourage those who care for someone with Parkinson’s Disease or some other chronic or degenerative disease. However, the Serenity Prayer is for everyone. It is a reminder that while there are many things out of our control, they should not consume us nor cause us to lose joy. Instead, we should change what we can to make life better for those around us.

Thanks for reading and commenting. Have a serene week!

Posted in forgiveness, health, care, caregiver, chronic disease, Parkinson's Disease, Past

When Bloggers Get Together

 

I never intended to be a blogger. It has not been my life’s ambition. When I first set out on this journey in March of 2018, I just wanted to do one thing – encourage and support those who are caregivers, especially those whose care recipient has Parkinson’s Disease, because that’s what I am experiencing right now.

Little did I know that I would still be writing 2 years later and that I would make so many new and wonderful friends like you. I had no idea that there are so many bloggers out there who have so much to say!

If you have something to say, I encourage you to begin your journey today. Write what is in your heart. Write about your thoughts and feelings even if you think no one else will read them. Writing is a great outlet for our emotions, and it helps us get those thoughts out of our heads and onto a surface.

When I first began to write, I took a free course for bloggers, and one of the suggestions was to read other blogs. That prompted me to follow several other bloggers, including jesusluvsall . The writer of this blog, Matt, has gathered several other bloggers together on Zoom in the last few months for sharing and learning from each other. Last Saturday we learned how to create images to use in our blogs, so I have been practicing.

This first one is what I needed for last week’s blog about how caregiving is a marathon, not a sprint. In today’s blogger session I hope to learn how to use CANVA better, and perhaps next week’s image will not have “canva” as a watermark!

marathoncanva

In last week’s session, Vanessa of braveblessedandbeautiful.com taught us how to use The Bible App to create images using a Bible verse as text. I am still a novice at this, but I will work on it over the next few months. This is a partial verse from Ephesians 4:32 that I needed as a reminder several times this week.kindness

Many days I feel just as much a novice as a caregiver, even after 21 years of caring for my husband. On many occasions I need to remind myself to be kind, to be tenderhearted, and to forgive, just as God has forgiven me. I must forgive my husband because he is not perfect just as I forgive myself because I am not perfect.

Thanks be to God for forgiveness and thank you for reading.

Have a great week ahead.

 

Posted in Degenerative disease, health, care, caregiver, chronic disease, Healthcare, marathon, Parkinson's Disease, perseverance, race, thankfulness, Uncategorized

Caregiving is a Marathon

What do these things have in common:

  • Learning to play the piano
  • Growing a beard
  • Repairing the damage of the fire at Notre Dame
  • Growing an oak tree from an acorn
  • Watching a baby grow into adulthood
  • Caring for a loved one from diagnosis to end of life

If your answer was “TIME”, then we are on the same page today. Each of these is a marathon. Each takes time. For most of us, none of these is easy (and some are downright impossible!)

-To play a musical instrument, there are many hours of practicing.

-To grow a nice-looking beard takes days.

-To repair Notre Dame will take years. And some who begin the repair, will not see it completed in their lifetime. Imagine that!

“’From Little Acorns Do Mighty Oaks Grow’. reminds us that some things take time to develop and grow. Be patient and keep working hard.”

-From the diaper stage to the terrible two’s which somehow lead into the teenage years, bringing up baby takes time, effort, money, patience, and more time.

– The last entry on the list is NOT impossible, but it will also take time, patience, perseverance, energy, more patience, and sometimes seemingly endless time.

The saying “Life’s a marathon, not a sprint,” is attributed to Phillip C. McGraw. And while many people believe this saying is over-used, it totally applies to caregiving.

Like a marathon cannot see the end of the race early on, we do not know how long we will be a caregiver.

There will likely be ups and downs, some of which are expected, and some are currently unknown to us.

marathon

We need to pace ourselves right now because endurance in this role is vitally important. People depend on us, and we cannot be there for them if we do not take care of ourselves. For those of you with a recent diagnosis, this is doubly important. It has been said that “If you take off faster and push harder and use your energy completely on the starting stage, you’ll eventually lose the game.” So, we must slow down and take care of ourselves along the way. Burn-out is a definite trap in caregiving.

That same author said, “the platform of life is not flat.” For us, that means that there will be good days and bad days. At the end of a good day, let’s be thankful and write this one down in our journal. At the end of a difficult day, let’s be thankful that this doesn’t happen every day and write this down in our journal as well.

Here is the bottom line. Life is a marathon, not a sprint. Pace yourself. Take care of yourself. Expect ups and downs, expect that you will not always feel like a winner. Pick yourself up, dust yourself off, and keep running. We do not know when or how this caregiving will end, but we have lots of help along the way.

marathon help

Thanks for reading and enjoy the scenery along the way on your marathon.

Posted in change, Degenerative disease, health, care, caregiver, chronic disease, Healthcare, Parkinson's Disease, project

My Best-Laid Plans

It is no secret that I am a planner. I like to have my ducks in a row. I like to make lists, and then I get great satisfaction in checking off each item as I accomplish it. I seem to thrive in that environment, and I am likely not alone in this.

Regarding those plans, I’m learning that plans for myself seem to work better than plans for my husband. (I see you smiling at that!) Last week I posted 2 things I hoped to accomplish with hubby this week – a recording, and a creative product of some kind. Well, neither one can be checked off anyone’s list!

It is time for me to admit that my husband has passed the stage where I can plan things for him. I need to be realistic and say that we are just thankful to make it through each day. And we did make it safely through this past week.

It was not a bad week. And looking back, it was really a great week. But it seemed as if every day happened like this: on Sunday night I looked at the calendar for Monday, and it was blank. On Monday night when I looked back at the day, I could not believe how many things happened during the day that had not even been in my purview a mere 24 hours earlier!

Here is a partial list of the things that filled our days this week:

  • A new hospital bed delivered (we have an older one to give away!)
  • Visits from several friends
  • Visits from our daughter and family
  • A clothes dryer repair visit from our son-in-law
  • A visit to the DR for a parking-lot examination
  • Delivery of several packages of things ordered – YAY!
  • Two grocery deliveries – one from our daughter, the other from the store
  • Four Zoom calls

And the list goes on! But I didn’t accomplish many of my goals for this week, and I certainly did not get hubby to do the things I was hoping for. That means I must adjust my expectations and examine my priorities. You might ask:

How am I feeling about all of this? I am totally fine with this. I have peace.

Will I still make plans for myself for this next week? Smiling, oh yes. That is who I am.

Will I make plans for HUBBY for this next week? Well, yes. I plan to get him out of bed each day, get him dressed, keep him fed and comfortable, and try to keep him engaged as much as possible.

The reason I blog is to encourage and support others who care for someone with Parkinson’s Disease or any other chronic or degenerative disease. And these diseases, being degenerative, imply a constant loss of abilities. So, my word of encouragement today is this – let’s constantly adjust our expectations to meet the needs of our loved one. And it is okay if the “best-laid plans of mice and men (and caregivers) often go awry.” Tomorrow we will adjust again.

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

Posted in Celebration, COVID-19, Degenerative disease, Holidays, Parkinson's Disease, project

A Call For Ideas

Good morning, readers,

I know it is unusual for you to hear from me mid-week, but a reader has asked for suggestions for what to do in a particular situation, and she can use our help.

She writes this:

I am at a loss about what to do with my hubby now that he’s in stage four-ish. Long drives in the country and puzzles are two things we still enjoy doing together on the days he’s up to it.
Does anyone have an idea for places to go on our 50th wedding anniversary? We’d have to go alone since our daughter is a single working woman and our also single son lives out of state. I’d welcome tips on travel with someone who is self-conscious about his Parkinson’s and who may or may not need a wheelchair instead of a walker.
Please comment with ideas both simple and complex, small and large, inexpensive and extravagant. We’re brainstorming here, my friends, and we hope this dear reader finds something in our suggestions that will spark her interest. 

Thanks for helping. This is what it means to be part of a community.

Have a great day!

Posted in coronavirus, COVID-19, Degenerative disease, health, care, caregiver, chronic disease, isolation, mental health, Parkinson's Disease, project, Support Group

Need New Things to Do

Just so you don’t misunderstand me, there is plenty to do at my house. There are closets to clean out, drawers to reorganize, a garage that we really need to totally empty, and a million more little things that we could and should do. And I am doing a some of those organizational tasks when I’m in the mood.

But sometimes I am just NOT in the mood to clean. Please tell me that I’m not alone in this? Some days those tasks are just not what I want to do, especially because I don’t HAVE TO do them today.

It is those times that I need something new to do. Something different. As a caregiver to my husband who has advanced Parkinson’s Disease, sometimes the routine becomes a burden. There are many tasks we caregivers MUST do, and we do them out of love. But in between those tasks, recently I have found myself needing something new to challenge us or even entertain us.

The goal of this blog is to encourage and support those of you who care for someone with a chronic and/or degenerative disease. It can be a lonely road, and only another caregiver can truly understand the challenges we face.

So, let’s talk about some ideas to make life more interesting with links where possible. Sometimes we need something new to do with our spouse or care recipient. Here are some ideas:

Games can be fun, but we must choose one that is mentally appropriate. If you do not have the physical game, perhaps you can create it with paper or other items you have around your house. Many of these are also online to be played on the computer, so check those out as well.

  • Checkers – you could make these easily
  • Bingo – we might even play this with friends on Zoom
  • Yahtzee
  • Card games – Uno, War, Go Fish (easiest!), 21, Gin Rummy
  • Dominos – Mexican Train set is great because it is color coded
  • Tic Tac Toe – easy to make out of almost ANYTHING

If you have a favorite animal or country or hobby, you can likely find a YouTube video about that animal. Here’s a giraffe livecam that is fun to watch.

Pinterest is another great place to find ideas of things to do, make, or just look at. Check out my board for “caregiver ideas” and feel free to friend me. It’s easy to create a board about anything that interests you.

While creating this Pinterest board for you, I found a project we are going to attempt this week.

fish picture

This is something I can help hubby do, and I think it will give us both a feeling of creating something positive during this time.

Also, this week I am going to commit to taking a video of hubby saying his favorite poem or joke. I need to document this time in his life. I challenge you to do that as well.

We are so blessed to have this time with our loved one. This week let’s use it to be productive in some way, and let’s share together next Saturday.

My topic for next Saturday is US! We will focus on caregivers and find some ways to make this time less stressful.

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

Posted in coronavirus, COVID-19, Degenerative disease, isolation, neurologist, Parkinson's Disease, project

Escaping COVID-19

This is the most common story in the news every time we tune into our favorite media outlet. It is the topic of conversation at every meeting, whether in person or on Zoom. Sometimes it seems to be the only thing on everyone’s mind.

As a caregiver to someone with a degenerative and/or chronic illness, we hope to keep that dragon at bay – to keep it away from our house. The amount of information available can become overwhelming. And if one listens to all the statistics and latest data about the spread of the coronavirus, it can become depressing.

But depression is not the goal of our blog today. The goal is to build each other up. To encourage and support each other as we care for our loved ones. So, wherever you find yourself today, just know we are in this together. There is help available for whatever we need.

At our house, our systems were a bit shocked this week at a statement made by hubby’s neurologist. We were on a tele-med call when he stated in a most serious tone, “If you get the coronavirus, you will not survive.”

He did not say “may not” or “probably won’t”. He was very emphatic in his statement. This doctor is not usually an alarmist, so we sat up and took notice.

For that reason, we are REALLY limiting hubby’s contact with others, even more than we were previously. This is something we can do, even though it is inconvenient and perhaps not enjoyable. But it is for just a short time. I have to remember that.

Besides that, I am trying to stay informed, I have subscribed to a daily email service from Daily Caring that gives suggestions for being a caregiver in a time like this. Check out one of their services here. I have found it to be very helpful.

But we also need to live our lives. So, unless there is a huge change, I promise to not write about the virus next week! We have more living to do that is not connected with this COVID-19.

Thinking about limiting hubby’s contact with the outside world, I looked at my schedule for the next week to see what I had to eliminate. Here’s a peek at my calendar for next week:

  • Sunday – watch church online
  • Monday – Zoom call with church friend group
  •                 Have groceries delivered
  •                 Tutor grandson
  •                 Call Dr. for appointment
  • Tuesday – Tutor grandson  
  • Wednesday – Check-in with nurse by phone
  • Thursday – Trash day
  • Friday
  • Saturday – write blog

That looks sparse, doesn’t it? I totally agree! Since I am a project-oriented person, I need to come up with some goals for the week, some specific things to accomplish so that I have a purpose for each day. That is how I will survive this coronavirus.

What do you need to survive? Do you have a rather empty list for next week like mine? What can we add in? Here are some things I hope to include in this week’s agenda:

  • Some kind of physical exercise each day
  • Some kind of creative project – making something
  • Some kind of cleaning task – cleaning out a closet or drawers
  • Some kind of new creative activity – trying something totally new
  • Something outdoors – maybe photography?

We all need to have goals to give us a sense of accomplishment when they are achieved. Let’s work on that this week. When we meet next weekend, what goals will we have accomplished?

Thanks for reading. Have a goal-oriented week! We’ve got this!

Posted in communication, coronavirus, COVID-19, Degenerative disease, friends, Future, health, care, caregiver, chronic disease, Healthcare, Parkinson's Disease, thankfulness, Uncategorized

In Between

This is the most difficult place to be, in between 2 things. Today I am thinking of this time between being diagnosed with a disease or condition, and the end of life. (I promise to not get morbid!)

in-between sheep

 

But the truth is that we are here. Our loved one has been diagnosed. Mine has Parkinson’s Disease, and yours has _______________. You fill in the blank. It is confirmed, or maybe not. (It is even worse when you don’t know exactly their diagnosis, yet you know there is something causing these symptoms.)

However, now that it is recognized by their medical professional, the journey has begun. There are so many unknowns. We have many questions:

How bad will they get?

How long will they live?

What other diseases will they get?

How susceptible are they to this novel coronavirus?

What if I can’t protect them from it?

How am I supposed to know how to handle these little difficulties with no medical training?

What if I also get sick? Who will take care of both of us?

How can we keep going on while being isolated?

When can we go out? Where can we safely go right now?

And I could keep going with these kinds of questions before I get into the “why” questions. By now you are noticing that I have many questions without any answers. It is good to ask these questions, even though the answers may elude us.

 

At least we are in this together. We are not alone. That is the purpose of this blog  – to encourage and support those who care for someone with a debilitating and/or degenerative condition, such as Parkinson’s Disease.

And speaking of “together”, while we are in isolation for COVID-19, we still have to take every opportunity to be together, mostly using technology. We cannot do this alone. We need each other now, more than ever.

For us, the day of hubby’s diagnosis with Parkinson’s was in the year 2000, and it was not devastating. Instead, it was comforting to know that there was a name to his list of symptoms. But we were naive. We did not know what would come next, and that was for the best.

As to the end of hubby’s life, we do not know when that will be, either. And that is also for the best.

Our task right now, in this between time, is to keep him comfortable, tend to his needs, and to be thankful for something every day, however small it might be. In that thanksgiving, we find joy. Not every moment is joyful for us, but we should always look for joy. We see the blessing of a sunrise, of birds making their nest in our “See Rock City” birdhouse, in the smiles of our children and grandchildren, in the gift of a video made by budding musician friends.

new rock city

 

These days are not easy. The “in-between” days are the most difficult. They are part of real life, where the rubber meets the road. But they are easier together. So, let’s reach out to each other today for strength and encouragement because we need it.

Thanks for reading and commenting.

You are not alone.

We’re in this together.

Posted in coronavirus, COVID-19, Degenerative disease, health, care, caregiver, chronic disease, Healthcare, isolation, Parkinson's Disease, thankfulness

Life is not on PAUSE

Today may feel as if someone has hit the “pause” button. We may feel as if we are in “reset” mode, almost as if life is standing still. But we all know that time does march on. We will never be this age again; we will never have the opportunity to do today over. Life really does not stand still.

What does that mean for us as humans? What does that mean for us as caregivers? What does that mean for our loved ones? It means different things to different people due to their circumstances, but there are some similarities, no matter what who we are. Here are a few commonalities:

One

Since we will never have this moment again, what we do right now is important. In our isolation, my heart goes out to those families who have a senior in high school or college. They may be missing out on events they have looked forward to for years – prom, final ball games, walking at graduation, etc. So, I applaud those who are seeking to create new and different memories for their seniors. We will never have this time again with our loved one.


carlton new

I tend to forget that in the positive sense we need to create memories with our loved ones each day. Here’s an example. Never before have we had to wear a face mask when leaving our house. But yesterday we had to take hubby to the doctor’s office where they came out to the car to draw blood. We took a picture of him in his face mask – a new experience. Yes, it was an added preparation, but we tried to make it into something fun. When we look at the picture, we can laugh and remember yesterday. Let’s create memories, even if they seem insignificant. We will never have these moments again.

Two

During this time of my life, I sometimes think of my life as being on hold. Perhaps it is my way of coping with the present and seeing my husband’s condition decline so rapidly. I find myself thinking wistfully about the distant future. Lately, I’ve been trying to catch myself when I think, “One day I’m going to _______________,” and I fill in the blank with something like “play the piano again” or “learn how to make crepes” or “plant some flowers that will bloom during this summer”.

iris

 

The truth is that caregiving takes so much time, takes so much energy, both emotionally and physically, that sometimes I have just enough to make it through the day. But doing even one of those things that seem futuristic, might be just what I need during this “shelter-at-home” time.

What have you been putting off until a later date? What would you really LIKE to learn to do or to pick back up after setting it aside for many years? We need something new right now to give us pleasure during this corona event. Let’s do something wild and crazy this week that we have put off for “one day when things get easier.”

Three

I have a good friend who says to me, “Enjoy the process.” True confession here – I don’t really like to hear it. Some moments are just not enjoyable. But caregiving is a process. Caring for someone post-surgery might be a process that sees the patient recover and get back to their former condition or even in better condition.

But for those of us who care for someone with a chronic and/or degenerative disease, the process is the rest of their life or ours. We are an integral part of that, becoming more important and necessary by the day. One way to enjoy the process is to find little things for which to be thankful. This week we have enjoyed the purple flowers in our yard – enjoying the process.

wisteria

Let’s not berate ourselves when we cannot find the positive side of a situation. Let’s call it a process and move toward something that is more positive for all of us. Let’s create special memories together with our loved one in the process.

Today’s post has been longer than most, and for that, I apologize. My prayer is that you have been encouraged and that you feel supported as a caregiver to your loved one. Thank you for reading, and may God bless you during this week to come.

Posted in coronavirus, COVID-19, diagnosis, Emergency, health, care, caregiver, chronic disease, Healthcare, isolation, Parkinson's Disease, thankfulness

What to do in a CRISIS

This is the 9th day since hubby was tested for COVID-19, and we still do not have the official results. My unofficial diagnosis is that he does NOT have the coronavirus, mostly because his symptoms are not consistent with that virus. Instead, we discovered that he likely has an infection that is treatable with antibiotics, for which we are so thankful.

But we are still isolated, and today is day #9 since we have left our house. Our daughter and family have consistently been 10 feet away from us when they have visited. I know that many of you are in the same situation, feeling disconnected from our regular support system.

During this week we had a minor emergency.  As a caregiver, you may have been faced with a situation in which you had no idea what to do. That was us this week. If this hasn’t happened to you yet, it is likely that it will in the future. Fair warning – your first instinct will be to panic! But I knew that would not help anyone, nor would it solve the problem.

So, I prayed. I admitted to God that I had no idea what to do next. (I might have even mentioned that I wanted to open the door and run!)  A few minutes later, a great peace came over me. I reached for the phone calmly, and I called hubby’s doctor. The nurse who finally took the call explained what to do, answered all my questions, and gave me the confidence to help hubby through this crisis.

You and I know that being a caregiver is not for the faint at heart. We are called upon to solve multiple problems in a day. Most of those problems are easy with simple solutions. Sometimes we find that we must do some research online or even reach out to our fellow caregivers for help to find answers. But then there are other events that are real crises, and we must act NOW and with great confidence.

Throughout the years that hubby has had Parkinson’s Disease, I have wondered if I would know what to do in a crisis since I have no medical training and tend to avoid blood and wounds like the plague. Would I be able to handle a medical emergency? How would I know what to do?

Well, I am living proof that God is with us in medical emergencies. He hears our cries, He understands that we need His guidance, and He does answer our prayers.

god-is-with-us

So, don’t worry, dear friend. Let’s continue to research when we can, ask for help from other caregivers when possible, and most of all, let’s not be afraid for the future. We do not know the road ahead – that has become more obvious lately, especially with the coronavirus. Let’s hold onto the knowledge that God is with us and will help us in our time of need.

Thanks for reading and commenting. We’re all in this together!