Posted in Accommodations, bathroom, Caregivers, health, care, caregiver, chronic disease, Healthcare, Parkinson's Disease

All About the Bathroom

Some might say that cleaning the bathroom is the same as cleaning every other room in the house. It must be done periodically, so we just do it. Right? But for a caregiver, cleaning up the bathroom takes on a whole different meaning, especially as our loved one becomes more dependent.

This fact caused the title of this website to spark my interest this week:

“8 Useful Bathroom Aides for Seniors”.

Each morning I get an email from www.dailycaring.com with links to their latest articles. Some topics are especially relevant, especially this one about bathrooms.

When I saw product #1, I was shocked. Other people have trouble getting their loved one to lean over the sink? Either I am constantly cleaning up the floor in front of the sink or hubby’s hands never get wet. I had no idea this was a common problem. Maybe this will help.

My favorite is #4. Ours was a Christmas gift last year that I specifically asked for. We have it in the kitchen, and all who enter our home during this pandemic are directed there to use it. This Christmas I need 2 more, one for each bathroom. My favorite part is that they are touchless, so when your hands are really dirty, you don’t get that dirt on the faucet handles!

I wish I had known about #5 earlier. Great idea!

What about #7? Did we know we could buy an attachment that turned the common toilet into a bidet? Might this solve some of our problems? The Europeans love their bidets, so why haven’t they caught on in the USA? I am really tempted to try this. (Stay tuned. I promise to let you know if we do!)

Caregivers must perform easy tasks and difficult tasks. For the difficult ones, it is comforting to know that others have the same issues, and perhaps someone has a suggestion to make that task easier.

As we share with each other, we have opportunity to support and encourage one another, and that is so important at this time in our lives. Thanks for reading, and we welcome comments – both those that share helpful hints, and those that ASK for help with tasks. We are in this together, and it’s nice to be able to pool our resources, at least virtually!

Have a great week ahead.

Posted in emotions, health, care, caregiver, chronic disease, Healthcare, Parkinson's Disease, thankfulness

Emotions – Part 2

As I write today, I want to keep in mind that the purpose of this blog is to support and encourage those who care for someone with Parkinson’s Disease, or any other chronic or degenerative condition.

After last week’s blog, I put the list of 10 basic emotions into a meme which became my computer background for this week.

Each day I looked at this list, observing which emotions I felt, and thinking about each word. During the week I decided that I would never have included “anticipation, loneliness, disgust, surprise, or trust” as emotions. That caused me to create a new list which is more manageable.

But looking at the list, I see only one positive emotion. What about “joy”? (Yes, there is a difference between happiness and joy.) What about “contentment”? (Not quite joy, but peace in the storm, satisfaction, or maybe thankful resignation.) Now that we mention it, what about peace or satisfaction or thankfulness?

This prompted a final list for me. Feel free to edit it to fit you!

But you are likely waiting for me to tell you which emotions I experienced this week. The answer is that I experienced all of them. From the bottom –

Jealousy at those who have an easier life. But I quickly move on to thankfulness that God has given me the ability to take care of my husband, and God has surrounded me with everything I need.

Fear of the unknown. But I quickly move on to thankfulness because I do not have to worry about that. God has it all under control and He is with me always.  

Anger at being interrupted sometimes to care for hubby’s immediate need.  But I try to move past the anger to thankfulness that I have the strength and health to be able to care for him.

Sadness as I watch him slowly degenerate from the vibrant creative man he was, to the childlike condition he is in at the present. This is the worst part of Parkinson’s Disease in my mind. It is not only his body that has deteriorated, but his mind as well. He can no longer reason and think clearly, and the wealth of trivia he always had at his fingertips has now faded into confusion. The jealousy, fear, and anger that I feel slowly fade into sadness as I look at him across the room. He is a shell of the man I married 48 years ago.

But then I must hasten to the positive emotions (as I dry my tears). Taking them from the top-

I am so happy that we had many good years together. Our happy memories come back to comfort me.

The joy I feel comes from knowing that I am doing everything possible to keep my husband happy and comfortable here at the end of his life.

I find contentment in knowing that this is what I’m supposed to be doing right now. I am doing the right thing – the good thing – the best I possibly can for right now.

And lastly, I am so thankful for all that God has provided for us. We have everything we need. Besides the material things, we have family who love us, friends who love us and check on us, and we have peace. Who could ask for anything more?

As caregivers we experience a range of emotions daily – sometimes within one hour we feel all of those described. To me, the key is to feel and identify those negative emotions, but then leave them and move on to the positive ones. Doing that takes time and intentionality, but we can do it. We know that positive emotions are healthy and productive, but negative ones are not. So, let’s cast them aside to embrace the positive ones.

Thanks for reading and commenting. We are cheerleaders for each other!  

Posted in Uncategorized

Who me? Emotional?

Even when I present a calm, cool and collected face, underneath I am an emotional being, and I believe you are as well. I can picture myself at the edge of the Grand Canyon (but not too close), yelling happily into the canyon. Just yesterday I might have hidden the fact that I was crying over a sad movie. I get angry when the squirrels eat the bird seed I just put out, and I’ve been known to open the back door and let them know it!

Our range of emotions is wide, even when we don’t show those emotions to those we live with. As caregivers there are many times that we just can’t afford to take the time to give way to our emotions. There are too many other things that need to be done immediately, and by the time we have cleaned up the mess or prepared a new meal, those emotions have died down. We haven’t really forgotten them, but we just couldn’t spare a moment to give way to them at the time.

But what happens to those tamped-down emotions? Where do they go? Do they disappear? Probably not. They will likely come to the surface some time, maybe the next time we find ourselves in the same situation, and this next time they will be amplified. Maybe the next time we will give way to them. Maybe we won’t be able to control the magnitude of our display of that emotion.

The website Psych2Go mentions 10 basic emotions we feel, and discusses their positive and negative aspects. Here they are:

  1. Happiness
  2. Sadness
  3. Anger
  4. Anticipation
  5. Fear
  6. Loneliness
  7. Jealousy
  8. Disgust
  9. Surprise
  10. Trust

My first response to this article is to thank the author for including positive emotions as well as negative ones. That reminds me that there are many productive emotions, not just destructive ones.  

Secondly, as a caregiver, I realize that I experience most of these in one week, if not in one day! Most of the time I don’t give in to them or express them, but I do feel them.  I’m going to watch for those emotions in myself during this next week.

Emotions are tricky. We all feel them, and we express some more easily than others. Some have a stigma attached so that if you show too much of them, people think you are crazy or they criticize you. They may even peg you as being “emotional.” Imagine that! (Smiling)

However, it is dangerous to suppress our emotions. That would have the same affect as blowing up a balloon past its recommended size. Eventually it will POP! And we will as well. So, we need to find a safe and acceptable way to vent our emotions, both the negative and the positive emotions.

Since I’m preaching to myself today, here is my plan for this week:

  • First – notice these emotions in myself.
  • Second – find a safe and appropriate way to express them, either privately or publicly.

Why not join me in being emotional this week? I’ll report back to you next week on how it went. Thanks for reading, thanks for commenting, and I’m so thankful you understand that this is an emotional job!

Posted in Caregivers, COVID-19, decisions, health, care, caregiver, chronic disease, Healthcare, Hospice, isolation, on call, Parkinson's Disease, Support Group, thankfulness

“Hospice” is not a Bad Word

If you are new to my blog, I hope you will take 2 minutes to read “The Journey Begins” right now by clicking the link at the top of this page. That was my first blog, and my mission has not changed.

As I write this morning, I think of sitting here with you, looking out at our backyard – our private garden of sorts, each of us drinking our favorite morning beverage. It is likely you would ask, “So, how is it going with Hospice coming to care for your hubby?” And our conversation might continue like this:

Me“It is so comforting to know that someone else is walking this road with us/me. We are not alone. They are a great support to us.”

You“What about COVID-19? How has that affected them coming into your home? Have you been worried about that?”

Me“Well, hubby was first placed into Hospice care in March. Since that was the beginning of this isolation time, after they admitted him, they stopped coming into the house. Recently as his condition has changed, they have started coming back inside. But they have always kept in touch with us by phone, and they brought supplies periodically and left them for us outside the door.”

You – “Supplies?”

Me – “Yes, they provide things like adult pull-ups, wet wipes, alcohol wipes, and other things like that.”

You – “What about medications?”

Me – “They have been really good about providing us with medications. They call each week and ask what we need, and it is delivered to our door in 1-3 days. There are only a few medications that they have not been able to get, so I still get those at the pharmacy. But the ones they provide are covered under Medicare. That has saved us many trips to the pharmacy.”

You – “How has it been having someone else help him in the shower?”

Me – “That has been the BIGGEST help! At first, it was a little awkward, but the CNA’s have been proficient at setting a professional tone and putting us at ease.”

You – “What does the nurse do when she comes out?”

Me – “Her main goal is to take his vital signs and record those. She also asks questions about changes we have seen during the week and concerns that we have. The best thing about the nurse, so far, has been having a healthcare professional I can call any time – day or night. With Hospice, I have the comfort in knowing that they always have someone ready to answer my questions – night or day, weekday or weekend. That helps me know that I am not alone in this.”

We have only just gotten our feet wet in this Hospice journey, and ours is just one journey. But thus far, the healthcare professionals that we have encountered have been a great addition to our care-giving team. They bring knowledge as well as compassion and understanding.

We are so thankful for our family who constantly support us, our friends who stay in touch even when they social distance from us, and the Hospice team who have just begun this journey with us.

My message to you today is this – do not be afraid of the word “Hospice.” Accept all the help you can get when it is appropriate. They are one more gift from God to help us on this caregiving journey.

Thanks for reading and commenting. Have a great week ahead.

Posted in Caregivers, health, care, caregiver, chronic disease, Healthcare, on call, Parkinson's Disease

Being “On Call”

Sometimes when I write this blog, I may give the impression that life is easy as a caregiver, and that if you have a positive attitude, everything will turn out great at your house because it certainly is at mine! Nothing could be farther from the truth. There are some beautiful parts of caregiving, but there are also many difficult moments and even grossly messy moments.

My goal is always to encourage and support you who are caregivers, and that is still true today. But I must write about one of the worst parts of being a caregiver for me, and that is always being “on call.”

Google defines it as “being able to be contacted in order to provide a professional service if necessary, but not formally on duty. Such as ‘our technicians are on call around the clock.’ Similar: on duty, on standby, standing by, ready.”

That is how I feel as a caregiver. All the time. Every day. Every minute of every day. However, there are some moments when I feel less “on call.” That would be when hubby is in bed. I am still listening for him to call my name, or for him to ask Alexa to announce that he needs me (smiling at that one). But at least I have a few minutes to myself.

Am I the only one who feels this way? Please tell me I am not!

This is why it bothers me so much when he wants to get up early, just to sit in his chair in the family room. (And to ask for something to drink, something to eat, his socks on so his feet don’t get cold, and his blanket!) Need I say more?

Re-reading that definition above, I see the phrase “not formally on duty.” When is it that I am not formally on duty? When someone else is on duty! When someone sits with him, it is even MORE like we are not on call. The sitter is the one on call. This could be why caregivers say things like, “I need to get out, even if I only go to a park and read a book.” Getting away from the house is like being away from being on call. But we are still connected by phone and could be summoned home at any time. However, it is somewhat a reprieve from the burden of being on call.

Don’t get me wrong. I like being needed. I like being able to supply the needs of someone. I really am a 2 on the Enneagram. But I do need a little time to myself when I don’t have to be listening for someone to call my name to come and help them.

Yes, we are caregivers. Yes, we love caring for people. But yes, we need time to ourselves. Let’s each make it a point this week to find a time when we are not “on call.” Let me know how it goes! How did you get away to accomplish this?

It is not being selfish. It is taking care of OURSELVES so we can care for others. It is also providing balance for ourselves. Not just constantly giving, but also making time to refresh our souls, our self, our very being.

Now is the time to plan. This won’t just happen automatically. So, what’s your plan. Maybe if you share it, you will do it. You are not alone. We are all here to help and encourage you as you care for your loved one.

Thanks for reading and sharing. Your “alone time” awaits!

Posted in Caregivers, coronavirus, COVID-19, friends, health, care, caregiver, chronic disease, Healthcare, Hospice, isolation, Parkinson's Disease, Support Group, thankfulness

The Longest Year Ever

The year 2020 will go down in history, at least in MY version of history, as the longest year ever. Before I write my next blog post we will pass the half-year mark, but it feels as if we’ve lived at least 3 years in these last 6 months. Are you feeling the same way?

However, I have so much for which to be thankful. There have been so many positive results of being in isolation during this time. Yes, there have been negatives. But thinking about the positives, here are some things happening:

  • Some of us have started writing that book we’ve always wanted to write.
  • Many people have cleaned out closets and drawers and filled bags or boxes to give away and/or to throw away. It feels good to be organized and get rid of excess!
  • Most of us have had more time to appreciate nature. The birds seem to be singing louder, and the flowers were absolutely beautiful this past Spring.
  • More books have been read in the last 6 months than normal.
  • Many have rediscovered the fun in making jigsaw puzzles or doing crosswords.
  • Some people have created a new routine for beginning their day that involves meditation or prayer or quietness/mindfulness – something they didn’t feel they had time for in the busyness of “normal” life.
  • More people are trying new recipes in the kitchen than ever before.
  • Netflix is really busy with people watching more movies, and not just at night!

What would you add to this list? What else have you been doing during isolation?

At our house, we would add one more thing to the above list. Now that the restrictions are lifting slightly, we have time to invite friends to visit us on our back patio, staying 6 feet apart.

In Hospice care, one accepts the fact that he/she is nearing the end of life on earth. And with that knowledge, we are so blessed to have time to see friends and family while we can still have a meaningful conversation. Visits should be short and positive, but they are so important to everyone involved. Thank you to those who have come, and to others, please come as soon as you can.

On a personal note, to follow up last week’s blog, hubby has decided to NOT have a feeding tube at this time. Hallelujah! I will write more on that in the future.

The reason I write this blog is to pass on to you the encouragement and support I feel from my local Parkinson’s support group. We need each other. We need to know that someone else understands how we feel and what we are going through. You are not alone. We are in this together.

Thanks for reading and commenting. Here’s to the second half of 2020!

Posted in Caregivers, decisions, diagnosis, doctors, health, care, caregiver, chronic disease, Healthcare, Hospice, neurologist, Parkinson's Disease

Making Medical Decisions

I am not a nurse, nor do I have any medical training. Instead, I am just the spouse of a man who has advanced Parkinson’s Disease. If you do have medical training of any kind and you are a caregiver, you are ahead of the game.

Count yourself blessed!

Since I have little frame of medical reference, I have hated to make medical decisions. How am I supposed to know what to do in every situation? Actually, I’m not, and neither are you.

We have had to make many medical decisions since his diagnosis, and some have been more difficult than others.  As a consequence, I have learned how to do several new things that I never expected to have to (get to) learn, like giving him shots and finding funding to pay for expensive medications.

However, this week we were confronted with a new decision, a new choice to make. Hubby’s neurologist suggested inserting a feeding tube at this stage of Parkinson’s, and now we must decide if we think this is best. How in the world are we supposed to know the answer to that?

Well, here is the process we are using. Our first thought was to bring our daughters into the decision-making process. We value their opinions and want them to have a say in their father’s care. Then we reached out to the Hospice nurse and asked her opinion. She spent nearly an hour with us, talking over our options. We also know several other healthcare professionals, so we have asked their opinion.

We are researching the actual process online to become more familiar with it, and my cousin (who is a nurse) even suggested we study the anatomy of the stomach and surrounding areas to have a better picture of the placement and extent of the tube.

Once we have all the facts and feel we understand the process, we may even go seek the advice of a gastroenterologist before deciding. But in the end, we must do what is best for us. For both of us. This would be one more thing I must learn how to care for, so it does concern both of us.

No one can expect us to have prior knowledge concerning every medical procedure that we might encounter. But doing our homework is worth the effort. We need to know what is involved before deciding on a new product or procedure. Our doctor might prefer that we make the decision right then at his or her suggestion, but we owe it to ourselves to discover the facts before deciding.

So, be encouraged, my friends. Let’s listen to the doctors because they have been to medical school, listen to the nursing staff because they have caregiving perspective, listen to the family members who will be involved or whose opinion we value, listen to friends with experience. Then make the decision that is best for us. We must live with our decision, so it must suit us.We are not expected to know everything, but we do have the God-given ability to listen and learn to make sense of it all.

Have a great week ahead. Thanks for reading and commenting. I value your opinion.

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

Similar, yet different, but Really Similar!

In March of 2018, I began this blog with this goal in mind – “to support and encourage those who care for someone with Parkinson’s Disease.” And when you read the first post, “Similar, yet Different,” you will see that my focus was just that.

But as all things do, this blog has evolved. What most of us have in common is the caregiving piece of this blog. While the conditions of our loved ones may be very different, the similarities in the caregiving part are really what bring us together. They give us a shared mission; they bring us shared emotional experiences; they bind us together with shared joys.

No matter the disease, condition or ailments, our mission as caregivers is to take CARE of our loved one. They need physical care – sometimes only a little, and sometimes they are totally dependent on us for their needs. They need emotional care when they become discouraged due to their limitations or pain. They need us to care for them, no matter their symptoms.

And in this caring, there are many ups and downs emotionally. Some moments are just difficult as we watch our loved one’s disease progress. We watch them age and grow weaker. Some moments are joyful when they join us in appreciating the beautiful world around us. Some moments are filled with panic when we just don’t know how to help them or what to do. Caregiving can be an emotional roller coaster.

But we live for the moments of joy: seeing our loved one smile, hearing them recount experiences from the past, watching them respond to family and friends, hearing them tell a favorite joke. Those moments may be brief, so we hold them sacred in our hearts and bring them to mind when the times are difficult. Another is the joy of knowing we are doing our best, that we are doing the right thing, that we are doing God’s work here on earth by caring for our loved one. Let’s not forget that, especially when the moments are difficult or uncomfortable.

Your experience right now may be totally different from mine, but if you are caring for someone, we have so much in common. We understand each other. We can laugh through the difficult times because we know countless others are experiencing difficult times as well. And let’s celebrate the wonderful times and encourage each other with them.

As you comment, I would love to hear what your difficult areas are, and I’d also like to know what brings you joy in caregiving. Thanks for reading and have a great week ahead.

Posted in Uncategorized

“My Dog’s Better than Your Dog”

Way back in the 1960’s there was a television commercial for Ken-L-Ration dogfood with the tagline, “My dog’s better than your dog.” It had a catchy tune and was easy to remember. Perhaps it resonated with us because we have a natural tendency to compare what we have with what others have.

Sometimes we even do that with diseases and physical conditions. When we have a loved one with a degenerative disease or chronic condition, our ears naturally perk up when we hear of someone else who has the same thing. And for some reason we expect their symptoms to be exactly the same or their disease to progress at the same rate. But we know that is unreasonable because the variables that influence symptoms and rate of degeneration are endless.

Often, I hear of someone who has Parkinson’s Disease like my husband, and find out that they have so many more symptoms, or their condition has degenerated so much faster than ours. And I realize how blessed we are. I like our problems so much more than the problems of other people.

I believe that I was created uniquely with the perfect set of gifts and talents to be able to care for my husband, and I believe that same thing about you. I’m not saying we are perfect, but that we are perfectly equipped to handle our situation.

Do we need help from time to time? Oh, yes. Will we make mistakes? Oh, yes. Should we research and learn and ask questions? Oh, yes. But we have in our nature what it takes to care for our loved one.

The Hospice nurses were at our house yesterday, and we had a great conversation about my husband’s care. They were encouraging and supportive, giving me ideas to make our lives easier and more comfortable. They gave me the confidence I need to care for my husband. If you need encouragement or support on this journey, I hope you will reach out to a friend, a fellow caregiver, or a medical professional who can help you.

If you are caring for a loved one, you have the unique gifts to be able to handle whatever comes your way. And if we chatted over coffee, you would likely think, “Wow, I like our problems so much better than hers!” And I would likely think the same.

Perhaps that is how we realize that we are where God intended us to be. We have the gifts and skills to complete our tasks. When we are not sure what to do, God is with us to help, and He’s only a prayer away!

So, go in peace, dear friend, and use the gifts God has given you. God is with you and me in our different circumstances. Let’s celebrate that we are created for this time in our lives, and let’s have confidence in our ability to do this.

Thank you for reading and commenting. You encourage me!

Posted in advice, change, COVID-19, Degenerative disease, diagnosis, doctors, Future, health, care, caregiver, chronic disease, Hospice, isolation, Parkinson's Disease, Support Group

Giving and Taking Advice

Which are you better at? Giving advice or taking advice? This past week I found myself doing a little bit of both.

As I write to you today, my fellow caregivers, my prayer is that you will be encouraged and realize that many others have walked this care-giving road before, and we are all here to support each other through the easy and the difficult times.  

Four of my dear friends were diagnosed with serious conditions this week, and I found myself giving them 2 important pieces of advice. I offer them to you today, whether you are newly diagnosed or in year 21 of your journey, as we are. These are time-tested suggestions that have been helpful to us over the years.

First, it can be devastating to hear bad news when the patient is alone. That’s why it’s important to go with your loved one into the room when the doctor is giving instructions or results of tests. (In this COVID-19 scenario, we may have to opt for FaceTime or being on the phone when the doctor speaks.) When a doctor drops a bombshell such as “cancer” or “oncologist”, sometimes the patient stops listening, focused on that word. That means they do not hear anything else the doctor says. We need to be there to hear the rest of the story. Getting our loved one to agree to this can be difficult, but we know it is in their best interest, so we may have to use tact and gentle persuasion if they resist.

Second, keep a medical journal. Document every meeting with every doctor, including vital signs, instructions given by the doctor, side effects of medications to watch out for, when to return, and even the doctor’s name, address and phone number. This information has proven to be invaluable for us when we needed to know when certain medications began and what was communicated to us. When it doubt, write it down!

Those were the pieces of advice I gave this past week. Now to advice given to me.

While I have been honest and transparent in this blog, I try not to dwell excessively on my husband’s condition. But perhaps it is time to reveal a bit more.

He was placed under Hospice care about 6 weeks ago, just as we went into isolation for this pandemic. As expected, his condition has steadily declined to the extent that he has lost about 27 pounds in these last 6 weeks, and he has lost much of his mobility. This is not unusual for advanced Parkinson’s Disease, but watching it happen has been heart-breaking and shocking.

None of us knows exactly how our loved one’s disease will progress, and even when we read all the information about what to expect, somehow it is a bit different when it happens to OUR loved one. But it is reality. It is happening.

Please don’t worry about us, however. We have faith in our God who is with us every step of the way. He has given us a great family who is right beside us, as well as a church family and a multitude of friends, including you who encourage us along this path.

Now to the advice given to us yesterday by some dear friends. They suggested that we give input into what we want in our own obituaries, writing them now, before they are needed. This advice seems a bit dark and even morose at first. But I see the value in it. Today I will talk with hubby to see if he wants specific things in his obituary. Maybe I have waited too long to do this, because he doesn’t always have the ability to find the words he wants to say these days, but I’d like to give him the opportunity to contribute if he desires it.

Tune in next week to find out how it went.

The bottom line is that it is good to share our experiences with others on this caregiving journey. Also important is taking the advice of others who see our situation from a different perspective. Let’s practice both this week.

Be encouraged, dear friend. Others have walked this road before us, and they are cheering us on!