The Rest of the Story

Couple number one arrived at the support group meeting, looking the same as always – a happy couple without a care in the world. But the truth is that he has Parkinson’s disease, and it took them an hour to get out of the door of their house because he didn’t take his pills, he fell coming out of the bathroom, he wanted to know exactly how long they would be gone in case he had “bathroom issues”, and they couldn’t find his cane. It was a typical morning.

Couple number two sat waiting for their doctor, and as he entered the little room he said, “Well, you’re looking better than ever! You’re making great progress. That medication change must be working.” Little did he know that she had refused to eat breakfast, struggled to get dressed that morning, had not brushed her teeth even after standing at the sink for nearly 10 minutes, and had hidden her morning pills somewhere. Her Alzheimer’s was getting worse, but it didn’t show as the doctor viewed her.

Our third case is a single woman with a condition that is not easily visible and not easily diagnosed, yet it causes multiple problems in her life – chronic fatigue syndrome. To her book club she seems perfectly normal. And as she walks into the room and takes her place at the conference table for their latest book discussion, she appears to be healthy to her friends. But the rest of the story is that she barely made it out of bed this morning. Not just this morning, but many mornings. She struggled to even put her feet on the floor. Her hairbrush seemed so heavy in her hand, and each step she took trying to get ready, was painful and slow.

While these are fictitious people, each scenario reminds us that what we see in people is not the whole story. Sometimes we forget that it takes a Herculean effort for many to get ready to attend an event or even to get out of bed.

In October of 2019 I wrote a post called “The Tip of the Iceberg” in which I talked about how there is more to every disease than first appears. And that is so true of each condition or disease. There are more symptoms connected with each condition than the casual observer ever knows.

This is also true about each person and their lives. There is more to everyone we meet than face value. We see them for a few minutes, for a few hours, but that is usually after the difficult part of their day. We see only the tip of their iceberg. For many, the little time WITH friends, is hardly worth the effort it takes to get there.

So, as we meet people in person (which is limited during COVID), let’s remember the effort it took them to get out of bed, to get ready, and to leave the house, being very thankful that they took the effort.

In a broader sense, this is true of everyone we encounter, whether friend or stranger. We don’t know “the rest of the story” of their day or even their life. So, let’s give grace when things aren’t exactly right, or when they are less than cordial to us. We don’t know what lies beneath the surface. We don’t know the rest of THEIR story.

One Very Bad Day

Sometimes life goes along at a steady pace and we think all is well until BOOM! Something catastrophic occurs: a hurricane, an earthquake, an accident, a bad medical diagnosis, or political upheaval. Any of these or countless other events, can cause one to have a very bad day.

But for us as caregivers, it doesn’t even take one of those disasters. Sometimes it is a perfect storm of 3 or more problems with our loved one, all occurring at the same time or in rapid succession. That is enough for us to declare, “I’ve had a really bad day.”

Most days are good, some are just passable, some are yucky, and thankfully very few are extremely high on the “bad day” scale. I will confess that I recently had a really bad day. Besides caring for my husband who is increasingly dependent on me, we were exposed to COVID, so we had to quarantine for 2 weeks. That meant that the Hospice personnel could not come to give him a shower or get him out of bed and dressed. Those were 14 very lonely days. During those days I watched him grow weaker and become less communicative, and simultaneously hallucinate more. These things, when combined, caused me to want to get in the car and drive, and keep on driving.

Those feelings were not pleasant, and I am so glad they are over. I don’t usually tend toward depression, so the intensity of those negative feelings was unexpected. Now, I’m not a psychologist or psychiatrist, so please don’t take my advice as professional. But here are some things I learned during these past weeks:

First, it is okay to feel bad. It is okay to want “out”. It is normal to have a bad day, even a VERY bad day. Perhaps we need to have bad days occasionally so we will appreciate the good days, just like rain and sunshine.

Second, those bad days will end. They will not last forever, so we should not give up. There will be an end to this sad or desperate stage.

Third, there are things we can do to speed up the process of getting out of these doldrums. Talking with friends can help. Finding things for which to be thankful can help. Music, art, and dance can help. Hiking or spending time with nature can help. Exercise of any kind, including sports, can help. Seeking advice from a mentor or professional can help. And these suggestions just scratch the surface.

Fourth, we are not alone in these feelings and reaching out to others in similar situations can be a huge boost. I must give a huge “Thank You” to my family (my daughters, sons-in-law, grandchildren, and siblings) to my friends, and to my Stephen Minister, for being right there when I have needed you. You are each a gift from God, and I still need you!

If you feel like I have written about this in the past, you may be right. And I may write about it again in the future. It is where many of us live – on the edge between contentment and frustration.

Lastly, my faith in God has helped me get to the other side of these dark feelings. I know God is with me, and I know that God will help me today just as He will tomorrow. I pray that you know God also and trust Him to help you in this time of your life. This prayer is on my lips every day:

“Must-Haves” for Caregivers

If we were all gathered in one room and could share our stories, we would find a range of caregiving experience, from newbie to seasoned veteran. If we listen to those veterans who have walked this road already, perhaps they could prepare us for what is to come.

Here are a few things that might be in their “must-have” list:

• A PHARMACIST we can trust – medications are so important. There will be countless questions along the way as doctors change dosages and meds.
• THE PREMIER WEBSITE for the diagnosed illness of our loved one. There have been hundreds of times we have asked each other, “Is this part of Parkinson’s Disease?” We need a go-to website to search for answers.
• A CURRENT MEDICATION LIST for our loved one. We keep an electronic one, update it every time there is a change in meds, date it and print 2 copies, throwing away the old ones. We keep one at home near the medication bottles and one in the car or my purse.
• A MEDICAL JOURNAL in which to keep notes from doctor appointments, business cards for doctors, therapists, pharmacists, and any other personnel we might want to connect with later, and blank pages for questions we want to ask at our next appointment. We take ours with us to every appointment.
• A SUPPORT GROUP for my loved one’s condition – Parkinson’s Disease, cancer, Alzheimer’s, etc. These days there are Zoom groups for almost every disease or condition if we don’t want to attend in person. The people we meet in these groups understand our situation, at least partially. Their expertise is invaluable.
• A FRIEND who is NOT connected to #5. It is easy to get caught up in our loved one’s condition and forget that there is more to life. So, when I just cannot bear to think or talk about Parkinson’s Disease for even one more minute, I call a friend and say, “Let’s talk about everything but illness and caregiving.” That refreshes my soul. It gets me out of this space where I live and into the broader world where I can breathe again.
• ADAPTIBILITY– everyone in the world needs it, but it seems like caregivers need it more often and to a greater degree. Just when we get used to a routine, it changes and throws us into needing to adapt again. When that happens to me, I remember it is also happening to every other caregiver. That helps me realize I am not alone.
• GRACE – my word for 2021. I extend grace to hubby because he did not ask for this disease. I extend grace to myself because I am doing the best I can.

This is my short list of MUST-HAVES for caregivers.

1. What else would you add?
2. Do you have each of these items? If not, perhaps you can add them to your life soon.
3. Which ones do you rely on the most?

Let’s take advantage of #5 and #6 as soon as possible.

Thanks for reading and have a great week!

My Word for 2021

As a retired teacher, I remember fondly the start of each new school year. It was always exciting to get new notebooks, new lesson plans, new ideas to implement, and decorate my classroom with new charts and pictures of what I hoped to accomplish that year.

That’s how I feel about a new year. I’m excited to begin 2021 with renewed vigor and focus, and determination to make it a better year than 2020. I know what you’re thinking – “Almost any year will top 2020!” Right? That’s likely true, yet there are also likely tragedies and heartaches ahead for some of us. There are certainly difficult times ahead for all of us who are caregivers. Days that seem endless with the work that needs to be done – the cleaning up, the constant care when we are weary already, and the suddenness of being awakened in the middle of the night to help our loved one.

My habit for the last 4 years has been to choose one word on which to focus for the coming year. A full explanation of how I got into this can be found in my last post from December of 2019. I have enjoyed the first 4 words and want to keep them as goals – Balance, Courage, Peace, and Thankfulness, but it is time to add a new one for 2021.

During the month of December I ponder, pray, and research to make this important decision. This year the process has been more difficult than usual. Even though I have always known reasons I would need these words, during the year several surprising events have occurred where I have REALLY needed my word. Events I could never have anticipated.

In my mind this means that these words are really God’s way of telling me what I will need in the coming year.

My word for 2021 is not quite as literal and not quite as easily explained as previous words. It is a word with deep spiritual meaning, yet it is also a word that is practical. At first glance one might think it is always God initiated, but there are many facets of this word that are initiated by us as humans, toward others.

I have chosen GRACE as my word for 2021.

During this next year I want to study God’s grace toward me, and I want to experience the many aspects of it by reading in the Bible all the instances GRACE is mentioned. I believe that will help me in extending grace to those I interact with during this next year.

I may need to ask for grace. I may need to show grace toward others. I may need to show grace to myself as I ask for more help during this next year – something that is difficult for me to do. Only God knows how much I will need God’s GRACE, your GRACE, and how much I will need to extend GRACE to everyone in my life during this next year.

This will be a year of prayer, accepting God’s blessings, extending God’s blessings to others, asking for help, forgiving myself, forgiving others, accepting myself for who I am, and accepting others as they are.

And it’s likely I have only scratched the surface. I’m excited to see what God will do in and through me in 2021. I want to remain BALANCED, continue to have COURAGE, be filled with PEACE, every day be THANKFUL, and now accept and grant GRACE to all I meet.

As always, the purpose of this blog is to support and encourage those to care for a loved one with a chronic or degenerative condition. What are your hopes and dreams for 2021? What is your focus in this new year?

God bless you and thank you for reading.

Finishing 2020

If I keep to my regular schedule, the next blog post I write will be on the day after Christmas. Here is the list of possible topics if I want to write about Christmas today:

• What if this is my last Christmas?
• What if this is hubby’s last Christmas?
• What does Christmas mean to me?
• What is my favorite Christmas memory?
• What is an appropriate Christmas message at the end of a pandemic year?
• How is Christmas different being a caregiver?

I could write a page about each topic, but since there are other things I want to say today, here is my one-sentence answer to each:

• What if this is my last Christmas? That would mean next Christmas I would be in Heaven! Yay!
• What if this is hubby’s last Christmas? He would be in Heaven – Yay for him, sadness for me.
• What does Christmas mean to me?   God loved me enough to send His son – Amazing Love!
• What is my favorite Christmas memory? I recited most of Luke 2 on television at Christmas with my 4th grade class – scary, but inspiring!
• What is an appropriate Christmas message at the end of a pandemic year? God is in control – don’t lose hope!
• How is Christmas different being a caregiver? I will enjoy Christmas and do everything to help my loved one enjoy it also, even if he doesn’t show how much he enjoys it, and it is a lot of work!

When I realized that this is my last post for 2020 since next Saturday will be January 1^st, 2021, I thought of so many things to say about 2020. Here are a few.

As to the past, let’s finish this year knowing we did our best. Were we perfect caregivers? No! But we did our best. That’s all we can ask of ourselves.

As to the future, let’s look forward with hope, not with fear. We don’t know what tomorrow looks like, but as God was with us in the past, so He will be in the future.

As to putting off things that need to be done, let’s stop doing that. This week I put in motion two things I have been putting off. One is a medical procedure, and the other is a large purchase. Both are necessary, but I was waiting to do each of them. No more. Let’s do what needs to be done.

If you’ve been reading my blogs for more than a year, you know that each year I choose a topic on which to focus during the next calendar year. It’s kind of like a New Year’s resolution, but it’s just one word of focus for the following year. Providentially the word for this year was “Thankfulness.” I needed to be reminded of that more than once during 2020! In next week’s blog I’ll tell you my word for 2021 and how I chose it. What word would you choose as your focus for this coming year?

thank you ribbon sticker. thank you sign. thank you banner

In conclusion, I’d like to thank each of you for reading. You encourage me to write, and I look forward to chatting with you every Saturday morning. Life as a caregiver is not easy, and we don’t get much thanks, win monetary prizes, or get trophies for what we do. We often do things no one else would want to do, and we do it out of love. Our rewards are not always here on earth. But God is with us and God sees  what we do for our loved ones.

Be encouraged, my friends, and don’t give up. We are in this together, and we understand what you are going through. Have a great week and

Keep Making Memories

Sometimes I get lost in my own thoughts while analyzing life. Sometimes I get bogged down under the weight of making all the decisions in our household. And sometimes the way ahead does not seem clear. At those times I also go back to what I know to be true. Regarding this blog, I keep this goal ever before me:

The purpose of this blog is to encourage and support those who care for a loved one with Parkinson’s Disease or any other degenerative or chronic disease.

Today you might wonder what my struggle is. What is the conundrum I am facing? Simply put, it is how to celebrate Christmas this year. Hubby’s condition has deteriorated, and he shows little engagement in everyday activities. Very few things bring him joy, and when they do, it is seldom that he shows it. So, do I make the effort to celebrate?

We will likely be alone at Christmas, or at least in another room from our family, which I understand is for our safety. And even though it really stinks, I know it is happening with many all around the globe. Many of you will be isolating as well. So, in deciding whether to decorate and to do anything special at home, the easiest thing would be to say “NO”, after which I would likely fall into sadness and then depression. But that would be the easiest thing to do. To give up. To give in to the realization that it might not make any difference if we just coast along during this Christmas season. (I expect I am not alone in these feelings.)

But if I have much for which to be thankful, as I wrote last Saturday, I cannot just give in. Celebrating Christmas means being thankful that God sent Jesus into the world. Celebrating Christmas also brings hope, and we all need that right now. Celebrating Christmas is an expression of my faith, which is very dear to me and to hubby. Celebrating Christmas also provides a way for us to give to others, to show charity, to be generous, which changes our focus from inward to outward, something we all need right now.

So, we are celebrating Christmas at our house. We are sharing traditions of the past without worrying about hubby’s limited response. We are also making memories for the future. Who knows what the future holds for any of us? That is not something we need to worry about. Instead, let’s make the most of every moment we have, even if we, the caregivers, are the only ones who show enjoyment in it.

None of us live on an island to ourselves. We all have family and friends who are watching us and who are taking encouragement and inspiration from how we treat our loved one and how we live life. We are setting an example for the time when THEY may be tasked with caring for a loved one. Let’s set a good example. They may one day take care of us!

So be encouraged, my friend, to make a new memory this year while sharing in a few familiar holiday traditions. I would love to hear about them.

Thanks for reading and commenting. You inspire me!

Is Thanksgiving Over?

As the fall decorations came down last night, I noticed that many of them said “Give Thanks”, or “Happy Thanksgiving”, even though they have been up since early October. I love this time of year when the leaves change, and we remember to give thanks to God who made us.

Looking back at previous blog posts, I notice that several highlight the topic of being thankful. Check out the one from May of 2018. That is one of my favorites.

Some of you may also remember that “Gratitude” has been MY ONE WORD for 2020. I chose it last December without an inkling of how this year would unfold. (I am working on my new word for 2021 and will give you an update on that very soon.)

When I chose Gratitude I did not know that:

Hubby would be placed under Hospice care in March.

We would experience a pandemic that lasted from March until who know when?

Hubby and I would eat Thanksgiving dinner alone.

We would have to make so many difficult decisions about feeding tubes and about taking him to the hospital or not (when he recently had a TIA).

We would be so blessed by God and surrounded by family and friends who love us and care for us.

And I could go on and on about how blessed we are, but I want to share just two quick stories because Thanksgiving is not over!

First, hubby’s college roommate came to visit him this week. That may sound trivial until I tell you that he flew here from another state just to spend 90 minutes with us. Can you imagine that? During his visit we laughed, we reminisced about old times, and we recounted college escapades. But the sweetest thing he did was sing for hubby. We were all music majors “back in the day”, and we spent many hours in practice rooms learning music in preparation for voice and piano lessons. What a blessing and pleasure to hear our friend sing! Thank you, dear friend, for bringing joy to both of us. You are a gift from God!

Second, during this month I am participating in a virtual study centered around the book “1000 Gifts” by Ann Voskamp. We have been given so many gifts by God, and sometimes we need to be reminded of them.

The goal is to list 1,000 things for which we are thankful. Does that seem daunting? It is an important goal for each of us because when we focus on the gifts, it changes our attitude. We don’t look at the messes we have to clean up, at the inconveniences of caregiving, at the uncertainty of the future, at the loneliness. Instead, we look at the little things that make our lives better and easier and more lovely.

My prayer is that Thanksgiving will never be over for me, and that I never lose the habit of thankfulness. I pray that for you as well.

What are you thankful for today? I am thankful for you!

Anticipatory Grief – Part 3

This is the last blog on this topic, inspired by an article of the same name. The first two posts are found below. While the topic is sometimes considered sad or even dark, my goal is to support and encourage those who care for a loved one with a chronic or degenerative disease such as Parkinson’s Disease. I hope this blog reminds you that you are not alone in your journey.

Now that we know the term “anticipatory grief” and realize we are experiencing it, what do we do with it? How can we keep it from overwhelming us or taking over our lives?

I went back to the original article that introduced me to the term, and there I found some gems of wisdom to answer my questions.

First, it is important that we express our feelings with a trusted friend. (Those of us who are reading this blog are great candidates!) It is not good to bottle up or deny these feelings.

Second, letting our loved one go does not mean we stop loving them. We will still grieve and keep loving them, and never forget them. At the same time, we have more life to live. We are still alive. Life goes on, bills must be paid, dogs must be walked, laundry must be washed, etc.

Third, some of us will need professional help to cope with our grief, either before or after the death of our loved one. We might need to talk with our pastor, a psychologist, or a psychiatrist. There is no shame in this and doing it before we sink into depression is better than waiting. Professionals are trained to deal with grief like ours, so let’s take advantage of their education and experience.

Fourth, we could already be experiencing the 4 stages of grief before the death of our loved one. And yet we can go through them again AFTER our loved one passes. In looking back over the 4 stages of grief, I realize that right now I vacillate between the first 3. In an instant my mood can change from being thankful I have this time with hubby, to anger at having to clean up a mess, to fear of the future without him, and then back to sadness at the loss of the closeness we once had. I think this is normal.

In her book, The Final Act of Living, Barbara Karnes, RN, writes, “Living with a life-threatening illness, although frightening and certainly challenging, is a gift of opportunity. It is the opportunity to make it ‘right’ with the relationship, to address any unfinished business, to live in the present and say goodbye. It is a blessing, not the curse seen by so many.” While I agree with the premise and understand what she is saying, I would add one thought. Due to a possible decrease in cognition on the part of our loved one, much of what she mentioned may be one-sided on the part of us, the caregiver. Making things right may ease our minds and release us of any guilt or regret, but we should not expect that it will be reciprocal. Our loved ones use all their energy just to stay alive at this stage.

In my heart of hearts, I am thankful for this time. My husband’s parents each died suddenly, and he and his brother grieved for many years afterward. They did not have time to say good-bye. My parents both died after extended illnesses, and I grieved mostly before their deaths. That is why I’m so thankful for this time to care for my husband and show him my love NOW. After he passes, I know I will still grieve, and I know it will be difficult. But my regrets will be few, and I will be at peace knowing I did my best in caring for him.

If you can identify with anything you have read in these 3 posts about anticipatory grief, I hope you are now encouraged by the knowledge that you are not alone and that you are normal. I am so thankful for the many people who support me and who listen to me when I need to talk. This is not an easy journey, but it is an important one, and we have each other to lean on.

Thank you for reading and commenting.

Anticipatory Grief – Part 2

In last week’s blog, “Anticipatory Grief”, we barely scratched the surface of the topic. And it is possible we came away with more questions than answers.

(That post can be found below this one and was inspired by reading this article.)

For me, this is a confusing time of my life. My husband of 48 years is under Hospice care here at home, so death is something we think about often, and we talk about it as a family, even with him. It is somewhat of an oxymoron in that we need to prepare for death while trying to enjoy life. How can I enjoy this moment knowing it may be his last? I vacillate from tears to laughter at unusual times. My emotions are so close to the surface that the slightest thing can bring tears at the strangest times – a photograph, clothing he can no longer wear, a college yearbook. I dare not give in to those tears because we are trying to enjoy life!

And what about hope? There is no cure for Parkinson’s. And as my loved one approaches the brink of death and I feel myself at peace with that, is that peace negating hope of his recovery? Is facing the reality of his death the same as giving up hope? We have one relative who says every time he sees hubby, “He looks great! I think he’s getting better!” And I want to scream back at him, “HE IS DYING! Don’t you get that? He will not recover. He cannot get BETTER!” Is accepting reality cutting off hope?  

The worst part for me is the guilt. Life must go on for me, yet I feel guilty that he cannot participate in even the simplest activities anymore. When I leave the house and leave him with the sitter, I regret that he cannot go and share in whatever I am doing. Should I stay home because he cannot enjoy it with me? I always thought that when he got to this stage, he would still want to know everything about my excursions, family news, etc. But that is not the case. It is almost like he has one foot in this life and the other in another world. It is as if he cannot grasp the significance of events in this world any longer. He needs every ounce of strength just to stay alive.

Akin to this guilt are my thoughts about his death. How will it happen? Will he be frightened? Will I? In those moments I try to imagine how I will feel, and how I will feel in subsequent days. Then I feel guilty that I am thinking about his death instead of enjoying his life. I know that I cannot possibly experience any of these things “before their time.” I cannot possibly know how he will die, how I will feel, and what I will do or say.

So, here is the bottom line. The purpose of my blog is to encourage and support you who care for a loved one with a degenerative or chronic disease, like Parkinson’s. That means we need to get to the encouraging part for today.

If you have been feeling anything like what I have described, please know you are not alone. You are not even odd or strange. And your feelings are not bad or wrong. These feelings are normal for us because we live with a person who is dying. This is anticipatory grief at its fullest. I hope this knowledge does for you what it has done for me. It has made me feel better about my feelings, giving validation to them.

I believe this is only the first step, however. Where do we go from here in this grief process? Let’s talk about that next week.

Thank you for reading and commenting. And I pray that God will bless you with peace during this special Thanksgiving week. I am thankful for each of you.

Anticipatory Grief

The purpose of my blog is not to make money, to gain fame, or to gather the most followers. I write for personal healing and to support and encourage those who care for a loved one with a chronic or degenerative condition such as Parkinson’s Disease.

My topic today and in subsequent weeks arises from listening to other caregivers and discovering that we share a common thread, that of grieving before our loved one actually passes on. This can be a heavy topic, and for some, it may be too much at this time.

Everyone’s grief is complex and unique, and its scope and intensity depend on many factors including our relationship to that person (spouse, parent, child, etc) and our role in caregiving. Therefore, just because one person experiences a particular stage in a particular way does not mean that everyone will.  My prayer is that we will take comfort and encouragement from these posts and pass them on to someone else who needs them.

Today I look over at my husband, sleeping in his lift chair, and I see the man I married 48 years ago. Yet, I really don’t see that man at all. I see a mere shell of the man I fell in love with during our college days. And I grieve. Sometimes I cry. Always I am thankful for the good years we had, for the shared memories, for the 2 beautiful daughters and 7 grandchildren we produced. He is still with us, but I am already grieving for the man he used to be, for our relationship as partners, for the vibrance he used to have. I thought I was alone in these feelings.

And then I heard the term “anticipatory grief”, and I realized that I have been experiencing it since hubby was diagnosed with Parkinson’s Disease 21 years ago. “Anticipatory grief, or grief that occurs before death, is common among people who are facing the eventual death of a loved one or their own death. Yet, while most people are familiar with the grief that occurs after a death (conventional grief), anticipatory grief is not often discussed.” This is how it was explained in an article I read recently.

It is not often discussed because it makes some people uncomfortable to speak of death. To others it seems disrespectful. And then there are those who just want to avoid all talk of end of life, almost as if talking about it will bring it to pass sooner. They would just rather not think of it or speak of it.

But death is real. Death is natural. And our feelings about it are real and natural.

Since we are open and honest about our feeling in this blog, let’s talk about who might feel anticipatory grief. It might be the patient themselves. They may feel dread or fear or panic. It might be the family of the one who is ill – their spouse, their children, their parents, their siblings, and even friends. Their anticipatory grief can be acute, depending on their relationship to the one who is ill.

And then there is the caregiver. This is the one who has poured his/her time and effort into keeping their loved one alive, only to realize that with a degenerative condition there will come a time when this is no longer possible. Death is natural. It will come. It is inevitable.

From his diagnosis, I have wondered how long hubby would live, and I have faced each new day wondering if this was the day that the other shoe would drop. This is only one of the several symptoms I have of “Anticipatory Grief.”

I am working through this every day and writing about it helps. There is so much more to say about this, but I’ll wait until next Saturday.  Thanks for allowing me to be transparent and vulnerable.

Have a great week and know that you are not alone.