We are Advocates

When we care for someone, we have their best interest at heart. We want to see them function at their fullest, we want to see them comfortable, and we want them to be as content and happy as possible. It is what we do. We are caregivers.

Those are our main objectives, just as the main objective of this blog is to encourage us as we care for our child or spouse or friend who cannot care for themselves.

During this week I had to advocate for my husband in a situation that might surprise you – the doctor’s office. He had his quarterly visit with his neurologist, which we had looked forward to, but which was less than pleasant.

I won’t bore you with the details of the visit, but I want to share with you how I had to advocate for hubby. One of his doctors didn’t hear him when he tried to speak to her. This happened three times during the visit!

He does speak softly, and he has difficulty finding the words he wants to say many times, so it is not unusual to have to wait as he searches for the correct words. One does have to WANT to hear him and be patient until he can articulate his thoughts.

One of his doctors seemed to not hear him. So, when she paused to breathe, I said, “Carlton wants to say something.” At that point, all eyes were on him as he worked to communicate. After the first occasion, I hoped I wouldn’t have to do it again. But in her effort to educate us about Parkinson’s Disease, she ran over his efforts to communicate twice more, and each time I had to insert a comment to turn our attention to the patient, my husband, who was trying desperately to communicate. The doctor’s attitude toward us felt adversarial instead of supportive.

This visit was troubling, and perhaps we have chosen the wrong neurologist for us. We will go back in 4 weeks and attempt to come to an understanding and common goal – managing hubby’s Parkinson’s Disease as much as possible.

That night, as I put hubby into bed, when I said I was sorry the doctor’s appointment had become so contentious, he thanked me for advocating for him. This is high praise from him. I was surprised that he articulated his feeling about the visit, but I am glad he realizes that I am in his corner. I am his best advocate. I have his best interest at heart, and I will fight to be sure he is heard, preserving his dignity and his voice.

Listening takes time. And taking time with someone conveys to them that they are important. That they matter. Sometimes we forget that there are those who just want to be heard. They want to feel that they have value and that their opinions are important. We can listen and we can be sure healthcare professionals listen to those we care for. We can be their advocate.

Thanks for reading.

Let’s advocate for our care person this week.

Happy 100th Post!

I don’t really live by the numbers. I don’t count calories, count steps per day, notice the number of “likes” a certain post gets, or even go into a depression when no one comments on a particular blog post.

But when I saw the number ONE HUNDRED, I had to celebrate!

I didn’t really have a goal in mind when I began this blog, 100 weeks ago, other than this: I wanted to share my experiences with others in the same situation, and I wanted to encourage them/you, as I have been encouraged.

In those early weeks, I took a free online course about how to blog. During that course, I was faced with several decisions:  how often to blog*, whether or not to sell anything on my blog**, and whether or not to look for sponsors to pay me to blog about their products***.

The best takeaway from the online course was that I needed a goal or mission for my blog. You’ve seen in almost every post because of the advice from that course.

My mission is to support and encourage those who care for someone with a chronic disease such as Parkinson’s Disease.

Putting my mission into words was critical to me, especially in the early days of writing. Today it reins me in when I’m tempted to talk about other things. It keeps me focused.

I write for myself, really. This is an outlet for me, especially during these long, quiet days when hubby sleeps most of the day. However, the added blessings have been that many of you have said you understand my situation, you have offered suggestions, and you have even been helped by something I have written. I could not have asked for more.

To celebrate, I want to highlight some of my previous posts that showcased some practical products or solutions to our problems. Remember these?

Here are the blogs from whence they came:

1. 1. No-spill cup – 10/5/2018 – “Fun-Filled Friday”
   2. Sarah Sled – 1/25/2020 – “Always Learning Something New”
   3. Bump Dots – 4/20/2018 – “Solving Problems”
   4. Raised toilet – 8/31/2018 – “Sharper Image”
   5. Handy cup – 10/5/2018 – “Fun-Filled Friday”
   6. Remote control you won’t drop – 8/31/2018 -“Sharper Image”
   7. Puffy paint on slippers so you won’t fall – “Fun-Filled Friday”
   8. Two-handed cup – 10/5/2018 – “Fun-Filled Friday”
   9. Car Cane – 6/8/2019 – “The Art of Giving”
   10. Adult bib/apron – 6/8/2019 – “The Art of Giving”

The words “Thank You” don’t seem to be enough to tell you how much I appreciate you for reading and commenting. Without you, this blog would still be an outlet for me, but it would just be about me, and that has never been my goal.

Thank you for reading, for encouraging me, and for sharing in this journey with me. We are in this together, whether you care for someone or not. You have helped me and others by standing with us.

 

Footnotes:

* I follow a blogger who sometimes posts 20 times a day! I don’t think you want to read that many posts. So, I decided to write only once a week.

**This course talked about getting “rich” from blogging. But selling is NOT my forte, so I’ll leave that to others.

***They also taught how to get free vacations and products compensated by endorsing products. I decided this is not for me.

Living Minute by Minute

Here is a question I am asked often: “How are you all doing?” As a caregiver to my husband who has had Parkinson’s Disease for 20+ years, that question is difficult to answer. I want to reply with my own questions: “Do you mean right this minute? Do you mean overall?” My answer right now will likely change the next minute!

But I usually don’t ask my questions. I usually just answer, “We’re living minute by minute. Thanks for asking.”

Some of life today reminds me of having young children around. Things happen so quickly, and just when things are going well, something happens and they’re not!

• With one fall, we can go from things being status quo to being at the hospital with needing surgery to fix a broken leg or ankle.
• With one bite of food, we can go from enjoying dinner to giving the Heimlich Maneuver.
• With one quick move of the hand, we can go from having a nice clean floor to needing to mop up a spilled glass of sweet tea. (Sound familiar?)

But this is true for anyone, not just those who have a degenerative disease. So, life is really the same for all of us. We live in this minute, not knowing what will happen in the next minute.

Following that logic, we don’t know how many minutes we have left with our patient, our spouse, our child, our friend. That means we must treasure each moment.

As I type this blog this morning, I hear my hubby talking in his sleep. Sometimes he even sings in his sleep, and when I hear it, I smile through my tears. He no longer sings when he’s awake, so I treasure this moment hearing him sing. I’m not sure how many more minutes we have together on this earth.

 

I am reminding myself this morning to treasure each minute we have together, even the difficult moments.

NEWS FLASH!

Next week is blog #100 for me! I can hardly believe I have been blogging for almost 2 years, writing every week. I’m throwing a party, and you’re on the guest list. More details next weekend.

Have a great week ahead and live in the minute. Celebrate life – yours and theirs.

Advice for the Newly Diagnosed

The purpose of this blog is to encourage and support those who care for someone else, specifically those with Parkinson’s Disease. If this is your first visit, please read “The Journey Begins” to understand more about my situation.

After you have cared for someone for a long time, it is easy to become jaded. To become cynical. To forget how it felt to be newly diagnosed, whatever the disease.

That has been true of me lately. And that led me to wonder what I would say now, to those who are newly diagnosed, that would offer them the best advice and encouragement. If your care receiver does not have Parkinson’s, these points may still apply.

To you were are recently diagnosed,

First, keep living. Keep doing things that matter to you, matter to your family, and matter to the world. Keep going until you can’t. You have not been handed a death sentence; you have been handed a chance to live before you die.

Second, keep moving. With Parkinson’s, it has been proven that the more you move in the early stages, the more you will be able to move. Find some exercise outlet that you enjoy and do it often. There are plenty of options, so find the best one for you.

Third, stay as independent as possible for as long as possible. Here’s what I mean. If this disease progresses as expected, one day you will be DEPENDENT on others for almost everything. Don’t hurry that process. Keep doing everything you can to dress yourself, feed yourself, and be as independent as possible. Do this for yourself and do this for your caregiver. That person who will care for you when you are dependent, will likely run out of steam, become exhausted, and could even become injured while caring for you, if you rely on them too early.

And to the caregiver of the newly diagnosed, you can play a part in encouraging these behaviors. Parkinson’s and other degenerative diseases are a marathon, not a sprint. You may be in this for 20+ years. Think about this as a new way of life, a way of living, not a way of dying.

Always Learning Something New

We are nearly 2 weeks post-hospital, and we are making slow progress. My estimation is that we lost 6 months while being in the hospital for 5 days. We may not get back to hubby’s pre-hospital condition.

However, I am not discouraged. Life happens. Instead, I want to encourage you and support you in whatever type of caregiving you find yourself. That is the goal of my blog. In doing that, it encourages me to focus on the positive and to be thankful.

While in the hospital, I learned a few things about caregiving from the great staff who cared for hubby and me. Here are 2 specifics:

First, moving hubby up to the top of the bed has always been difficult for me. One staff member showed me that having a “draw sheet” across the bed makes moving a patient so much easier when you have 2 people to use it. Also, with a hospital bed, he showed me how to raise the foot of the bed, which aims the head downward, which also makes it easier to move the patient toward the head of the bed. That hint is one that I can use right away!

Second, they used a “Sara Stedy” device to transfer hubby from the bed to the chair. While I don’t have one at home, I can see how valuable they are. I didn’t even know there was such a thing. It worked well, and I think I could use it without another person’s help.

One of the constant questions I was asked by the staff at the hospital was this: “Is he like this at home?” They asked this about his inability to walk, to move quickly on command, his speaking volume, his constant sleeping, his confusion, etc. When I replied in the positive, they seemed hesitant to believe me.

While at the hospital I read a tip in a blog that encouraged caregivers to video their care receiver in different situations at home for situations such as this. I wish I had read this sooner! If I had done this and had my videos on my Smartphone, I could have just replayed the video for the nursing staff or the doctor, and they would have had visual proof of how hubby was pre-surgery or pre-hospital.

So, this week I’m going to attempt 3 videos – one of hubby eating, one of him walking, and one of him talking. Those 3 things should show his current level of ability. We could save them to the cloud by date and do this regularly to document the changes in him.

We can share these videos with our regular physicians also. And, with some careful crafting of the content, they might also be archival material for future generations of our family as keepsakes.

What do you all think? Do you have any suggestions about how to get our care-receivers to enjoy making these videos?

Thanks for reading, and thanks to those who comment. I love hearing from you.

Details on our Hospital Stay

While a trip to the hospital is difficult for everyone involved, it is exponentially difficult for someone with Parkinson’s Disease. It is even more difficult if that person has any stage of dementia. All of that describes my husband.

We are beginning our 21^st year with PD, and we have moved into the final stage of the disease including the beginnings of dementia. This mental state is not always evident. Sometimes hubby comes up with great one-line jokes. Occasionally he offers great insight into the current conversation topic. But he always has difficulty making connections between new and old, between relationships on television shows, understanding new situations, particularly hospitals.

On Thursday morning a week ago, he awoke at 7, felt fine, and drank some juice. Thirty minutes later he mentioned having pain in his chest. He asked me to look up the symptoms of a heart attack, so I read them to him from the computer. Thirty minutes later he said that pain was still there, and he wondered if we should do something about it. After another 30 minutes, when it had not subsided, we decided to go to the ER.

At that point, it was he who really made the decision, and he was lucid and totally aware. At the ER the preliminary EKG showed no heart problems. As we waited in the waiting room for the next step, he read his email on his iPad.

Today he remembers nothing more until post-surgery, even though that was almost 30 hours later.

I will skip many of the details to tell you that the problem was his gall bladder. He had it removed after many tests and evaluations. The doctor told us he got it just in time, as it was filled with a large stone and was gangrenous. We are very thankful.

The physical part of the healing post-surgery has been almost quick and painless. We are so thankful for that.

However, my assessment is that he lost about 6 months mobility-wise and cognitively. Let me explain.

As to his mobility, he was without PD medications for almost 3 days. Before the surgery, he could not have anything by mouth because they anticipated there would be some type of surgery. That included PD meds. If you are a caregiver for a PD patient, you know what that means. His muscles were totally stiff. (They are still not back to their pre-surgery flexibility.)

From the moment they wheeled us back into the ER, Thursday morning, he was not allowed to get up and walk until the day I brought him home – Sunday night. That would adversely affect the mobility of anyone, especially a PD patient.

Cognitively, we lost much ground. We don’t know if we will ever get it back. This is as disturbing as the physical effects of the hospital. I wrote about this at the end of a previous post in August after our last hospital stay. This time it was even more pronounced. My daughter and I noticed it on Thursday afternoon, and we were shocked that it happened so quickly. We were still in an ER holding area while they ran tests, and already he was extremely confused, paranoid, and irrational.

It did not get better until we got him home on Sunday night, into his familiar surroundings. And even that was jarring. He did not recognize our home, and he didn’t know where his bedroom was. At 10 PM (much too early for his normal bedtime), he said, “You’ll have to show me where my bedroom is.” He slept well, thankfully, and I felt he was at peace.

The next morning he said, “Does this place have a kitchen? Could you show me?” So, I wheeled him into the kitchen even though we had walked through it the night before, and I pointed out a few things that should have been familiar. I didn’t press him. I just showed him things.

We have been home almost a week now. He still doesn’t remember many things, including the hospital stay – except he does remember that it was a terrifying experience. I told him it’s not necessary that he remember the hospital stay. It’s in the past.

I’ll write a future post about things I learned from this hospital stay, and what we did better than last time. I’ll also tell you more about the staff and the physical aspects of the hospital.

The bottom line today is this: we are home, we are comfortable, he is making progress step by step, and we are so thankful for those who helped us along the way.

Will he regain his previous mental and physical state? Only God knows. And truthfully, we have moved on to where we are now. Each minute we are thankful for life.

I hope this post has not been too negative because my goal is to encourage those who care for someone, especially those with Parkinson’s Disease. Please know that you are not alone. The rest of us caregivers are here for you.

Thanks for reading and may we all give thanks

for each minute we have together.

Update on Life

I wanted to post last weekend, but life was very uncertain because hubby was in the hospital. We are now home and resting and very thankful.

• Thankful that we went to the hospital.
• Thankful for the staff.
• Thankful for family and friends who surround us with love.
• Thankful that hubby is not in any pain and is healing nicely.

You are likely saying, “Tell us more! What happened?”

I promise to do that on Friday when I post again.

Thank you for reading, for caring, and for your prayers and support. We always need them.

Until Friday, , ,

Words Matter

As adults, we understand that what we say is important, and our choice of words can make a difference. As the caregiver to my husband who has Parkinson’s Disease, sometimes I don’t know how to reply to comments people make about him, but I am learning!

When meeting someone for the first time, or the first time in a long time and they realize my husband has advanced Parkinson’s Disease, sometimes they say, “Oh, Parkinson’s! That’s the disease where they shake, right?”

My initial internal reaction is “Are you kidding? Do you even have a clue as to how many systems of the body are affected by this disease? How much time do you have? I could tell you stories that would curl your hair!”

Obviously, I can’t really say that. So, what should I say? Should I list all the non-motor symptoms of the disease for them? Should I mention the embarrassment my husband feels when dyskinesia plagues him in public and he cannot stop that involuntary movement? How about his embarrassment when he freezes in a doorway while a stranger is holding open the door?

And do they really want to hear about the falling, the dry eyes, the constipation and then diarrhea, the blood pressure problems, and the sleep issues? Probably not. Instead, I just nod, smile, and say something like, “That is the most common noticeable symptom, but the disease is so much more. Thanks for asking.”

Then there are other people who try to solve our problems with a simple solution. As an example, when I mention that advanced PD usually brings extreme constipation which becomes extreme diarrhea, some people offer their solution. “Oh, just have him eat a banana a day. He likely needs more fiber in his diet.” That sounds so simple and so logical. But at this point in our lives, nothing is simple. When he/she says that, my internal reaction is, “DON’T YOU THINK I HAVE THOUGHT OF THAT?” (Yes, all caps. I do want to react with incredulity.)

But instead I say, “Thanks, we’ll do that.” No one wants to go into all the remedies we have tried in the middle of the grocery store!

 

So, here is a word to my friends who are not living with someone with a chronic disease or disability – it is likely we do not want you to solve our problems. If we do, we promise to ask. Just listen to us and say something comforting. Tell us you hope things get better soon or ask what we need. That is what we want to hear.

To those who are living with someone with a chronic disease or disability – let’s not let our initial reaction show on our face or influence what we say. This is something I’m working on personally. Let’s just be cordial and thank our friends for their concern. Words matter. We cannot control the words of others, but we can work at controlling our own. Let’s build each other up with our words.

I hope I have accomplished the goal of this blog today, which is to support and encourage you who are caring for someone with Parkinson’s Disease or any other chronic illness.

Thank you for reading, and I welcome your comments.

My One Word for 2020

Several years ago, I read a coffee table book entitled, “My One Word.” It was a short read, but one that has had a powerful impact on my life. The premise is that while it might be difficult to adhere to a long list of New Year’s resolutions, it is not difficult to focus on one word throughout the year.

Since reading that book, I have chosen a new word each year (while keeping the old words) on which to focus for the New Year. I usually spend a month or two praying and contemplating, deciding what word is most necessary for the next year.

My word for 2019 is “PEACE” and it has been important in my life countless times during the year. This year my husband was hospitalized, and I needed to remember to be peaceful during that time. On another occasion, I had to call 911, yet I also had peace during that time. I had to make several other decisions that were serious, and God’s peace assured me that I was doing the right thing.

Since this is my last post of 2019, it is fitting that I should share my new word with you with a short explanation. This word is something I need when caring for my husband with Parkinson’s Disease because often is not pretty. When real life gets in the way of something I would rather do. When I feel as if my life is on hold because I am home-bound. When I have no solution to this latest problem. When suddenly he cannot lift his fork or wipe the crumbs from his mouth or move his leg.

How can I be THANKFUL in those situations? Another book I read in the last few years that had a profound impact on me was by Ann Voskamp entitled, “One Thousand Gifts.” In the book, she finds 1,000 things for which to be thankful to God. One thousand different things.

For 2020 I have decided that THANKFULNESS is my word. I am not going to count as she did, but in every situation, especially the unpleasant ones, I’m going to remind myself to find something for which to be thankful. In my defense, I usually am a thankful person! But when I am awakened from a deep sleep at 2 AM, or when I have to clean up another mess, or when I cannot figure out how to solve the current problem, my mind does not think of thankfulness. I become frustrated and resentful at times.

So, I will keep my previous words of Balance, Courage, and Peace, and add to them Thankfulness. My prayer is to be thankful for something in every situation. I’ll keep you updated to let you know how it goes.

What is your focus for 2020? I pray that God will bless you and those you love with God’s peace and that you will also be thankful.

It’s Getting Quiet at our House

The purpose of this blog is to encourage and support those who care for someone with a chronic disease. For us, that disease is Parkinson’s. Sometimes I hesitate to “tell it like it really is” at our house because I don’t want to complain because it means I am being vulnerable, and because I don’t want to scare those of you who are early on your journey with this disease.

Lately, I have noticed the deterioration of communication in our home. This is something hubby and I have talked about all through this journey. He has worried that he would not be able to communicate late in this disease, so he has prepared me to watch his eyes for a response or watch for a “thumbs up”.

One of the most surprising non-motor symptoms of Parkinson’s is the effect it has on the voice. Often it causes their voice to get softer and thinner right away. When you add to that the fact that they barely move their mouth to form words correctly, you get unintelligible conversation. We have talked about this countless times in our support group, and it is also the reason for the “LOUD” in the Big and Loud exercise regimen.

Difficulty with communication has been gradual, especially in the last 10 years. This isn’t new.

But what is new is that now we have added in early signs of dementia, which means he asks questions when the answer is obvious or something he should know. And sometimes his questions just don’t make sense. When I ask him to repeat, which I need to do often, he gets defensive and offended at times.

While this is not Alzheimer’s Disease, there are some similarities due to the beginnings of dementia. This poster helps me remember how to respond:

Another thing added in recently is his increased weakness. It is evident when he tries to stand up from sitting, his inability to stand for a short time even when holding on, his inability to stay awake for a conversation and his short attention span in general.

Communication is so vital to our relationships, that when it is thwarted, it’s hard to know what to do. Here are some things I am trying.

I am watching for hand signals, trying to be patient when it takes him a long time to answer, and trying to ask questions that are answerable with “yes” or “no”, so he doesn’t have to explain. I am giving 2 choices for lunch. And sometimes I am just following my first instinct and not even asking. He can always refuse if he really doesn’t want what I have chosen.

My impression is that conversation tires him, so he would rather not even speak. When he does speak, the room gets very quiet and we all listen intently. Do you remember this commercial  for E.F. Hutton?

Because of this difficulty with communication, my goal for this season is just to surround him with things I know he likes and make this a joyful, comfortable holiday with friends and family.

I pray God’s blessings on each of you this Christmas.

Thank you for reading and commenting.