What’s your Perspective?

At this time of year, like no other, we are admonished to view our situation from multiple perspectives.

PAST

One person will say, “Look back over your life!” And indeed, we do. As we unpack holiday decorations, we cannot help but look back on those made by our children when they were small, even if they are adults now. We think back to holidays past when our parents and/or grandparents were alive. We recall happy times that make good memories, and we might even revisit those that are painful. That’s normal and natural and even healthy. They happened. They are in the past.

Thinking of our spouse with Parkinson’s Disease, we sometimes look back to the date of diagnosis and see how the disease has progressed. We see the mobility that is lost. We see the subtle changes that have brought us to this current condition. This perspective is normal.

But for me, it is not where I need to dwell. Yes, I think of the past sometimes, but I then determine to leave that perspective in preference to a different one.

FUTURE

Many articles I have read this month say, “Look ahead to the New Year” because it is almost here. Plan for the future.  Even in commercials on television we hear, “Don’t get caught entering retirement with no plan.” What are you plans for next summer? Yes, we should look ahead. That sounds like a good topic for next week’s post!

But again, thinking of our spouse with Parkinson’s Disease, we do think about their future with this disease. When we see a friend’s spouse with PD who is struggling with a much more advanced form of the disease, we might think, “Will that happen to my spouse? Will we go through the same progression?” And if we are being honest, we may even think, “How will my spouse die? What will the end of their life look like? Can I handle this? How will I know what to do?” These thoughts are also normal. We all wonder about the future of ourselves and our loved ones.

But again, for me, this is not where I need to dwell. None of us knows the future, so we would only be predicting. A better way for me to live is in the present.

PRESENT

The perspective I have chosen for today is the NOW. This is what is in front of me right now, and this is all I can handle. The past is over, the future is not yet here, and today is here.

Today I know what I must deal with. I must be patient, kind, and take care of the details that my spouse cannot. I need to be strong for today. Maybe I wasn’t always this way in the past, but that is over. I cannot predict what I will do in the future, because I don’t know what I will encounter.

But today, right now, I can be the caregiver my husband needs. You can be the caregiver your spouse or loved one need. We have the tools and the support that it takes, right here, right now. Let’s help each other. It takes a village.

Thanks for reading. I would love to hear your perspective!

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Surprise!

In the middle of this busy week, I’m so thankful my husband has Parkinson’s Disease instead of some other disease because:

My turn: I would hate him having a disease with lots of blood involved!

Your turn: __________________

Gift Ideas for Parkinson’s Patients

Holidays are exciting, wonderful, joyous, and yet sometimes they can be downright difficult. Among the difficult parts might be choosing the right gift for someone with Parkinson’s. These thoughts go through my mind when choosing a gift for my husband: will he even use it? Will he be offended that I got him something so useful, and not extravagant? If he uses it only once, it is worth the expense?

As caregivers to our Parkinson’s patient, we can assess our individual spouse’s abilities and see what options are available to us. Then we need to just JUMP IN and buy it!

Since the inception of this blog, my goal has been to provide honest and practical encouragement and support for those of us who are caring for patients with Parkinson’s Disease.

So today – some practical gift ideas!

1. Several years ago, my husband’s neurologist recommended that he get an iPad. The doctor thought he could use it better than a desktop or laptop computer, and he was correct. My husband has thoroughly enjoyed his iPad. It was a great investment.

2. Recently I read a great blog written by a Parkinson’s patient who recommended several movies about Parkinson’s and other neurological diseases. Perhaps you and your spouse will have time to view at least one together over the holidays. That is my goal for our house, and in January I will let you know how it went. I hope you will find a  movie that will inspire, entertain, and encourage you.

3. Here is another blog with MANY ideas for Christmas gifts for Parkinson’s patients. Hopefully, you can find something here!

4. Some people enjoy receiving a gift certificate for a service like a pedicure, a professional shave, or a massage.

5. Here are the websites of 2 companies that sell a wide variety of aids for handicapped persons. There might be something in their product line that your spouse can use that would be a great gift:  https://www.thewrightstuff.com/and https://www.caregiverproducts.com/

  
6. My husband received an early Christmas gift from our younger daughter – a wheelchair raincoat! It is a poncho that goes over him and the chair. What a handy gift! It’s difficult to hold an umbrella over everyone when you’re pushing a wheelchair! (It is a product from http://www.adirmed.com, but I could not find it on their website. I did find it on amazon.com, however.)

It is important to celebrate every day when you are a caregiver, whether in a big way or a small way. So, as we celebrate this holiday season, I hope I have given you some practical ideas for gifts for your loved one.

Thanks for reading, and thanks for your encouraging comments.

The Many Faces of Caregiving

Just as is true in most occupations, the job of caregiving has many faces. Think about throwing the dice. Each time you throw, a face appears with a number. So it is that with each new event in our daily life as caregivers, we may need a different face, depending on the event.

Spouse/Partner is the first face that appears because we have been doing this longest. We are still related to our husband or wife or sister or brother who has Parkinson’s. So that relationship will always be there. We still have the memories of our years together, and that will not change. This face will always be in the back of our minds, even when we need a different one to handle a crisis or problem.

Advocate is possibly the next easiest role to assume. We want the best for our patient so we may need to speak up for them and be their champion at the doctor’s office or physical therapist, or when they cannot speak up for themselves. As Parkinson’s progresses and communication becomes more challenging, this role increases. We are their hero. We are their voice, both with family and with health care professionals. Our face must show determination and resolve to act in the best interest of our loved one.

Nurse is our new face.  We dispense medications. We remind our patient about exercising. We help them up when they fall. We steady them as they walk. We cut up their food and prepare their meals. We may have to monitor their blood pressure at home. We may have to clean up after them if they have difficulty in the bathroom. These tasks require the face of a nurse. It’s all in a day’s work for them.

Therapist is a title that covers several areas.

 As a Physical Therapist, we encourage them to practice speaking loudly. We count as they walk to keep them from freezing, especially at thresholds. We practice exercises with them at home, as recommended by their paid therapist.

Then there is the Occupational Therapist side. We adapt our homes to their needs with handrails in the bathroom and the hallways. We change our menus to fit their swallowing difficulties. We acquire adaptive equipment such as hospital beds, bedside commodes, shower chairs, to help them around the house.

Sometimes we are called on to be a Psychologist/Therapist. Parkinson’s is not a sprint. It is a marathon. We are in this for the long haul, most likely. But we must maintain hope and a positive outlook. Sometimes that is difficult for our patient, and they may look to us to keep a positive attitude, even as their lives become more difficult.

Another problem with advanced Parkinson’s can be the loss of cognition. Our face needs to reflect a calm attitude and demeanor when our loved one becomes confused. When they ask the same question for the 4thtime in a day, or when they cannot understand simple financial matters, or when they cannot figure out how to open a jar, it is our job to remain calm in that situation. Even in the event of hallucinations, this is true. A calm and peaceful look will assure our loved one that everything will be all right.

The many faces of a Parkinson’s caregiver reflect the need of the moment. Sometimes we must be firm and resolved. Sometimes we must be encouraging and the coach. And other times we must be peaceful and calm. Just like dice, our face reflects the need of the situation.

What faces have you used this week? Thanks for reading and commenting.

Thankfulness Again

Sometimes it is wise to repeat things. Today is one of those days for me. The following is a repeat post from last Spring. It is relevant to me today, as it was then. I hope you find it to be the same.

Perhaps even though we experience challenges in our lives like Parkinson’s Disease, we can talk about thankfulness.

The top of my thankful list today is the Parkinson’s Support Group that I attend. (A huge “thank you” to the leader and her tireless efforts to give us this outlet.) This month’s meeting was especially helpful. There were about 8 of us, and we laughed and talked and encouraged each other. We were so loud that the group in the next room asked us to be quiet!

This is what I heard around the table at the meeting (loosely translated):

  • “I’m so thankful that my husband is still mobile.”
  • “I’m so thankful for help at home for one hour every morning.”
  • “I’m thankful that my husband still wants to travel. That’s something we have always enjoyed, and we can still do it.”
  • “I’m thankful that I understand more and more how this disease works.”
  • “I’m thankful that our grandson is with us for a few weeks. It’s great to have help.”
  • “I’m thankful for the people in the ER at our local hospital. We didn’t even have to wait for care this morning.”
  • “I’m thankful that even though my husband has hallucinations, I know they are not real and understand that they are not unusual for his condition.”
  • “I’m thankful I remember the kind things my husband has said in the past when his mind was not affected by this disease.”
  • “I’m thankful my husband mentioned he probably shouldn’t be driving. Hopefully he will give it up soon.”
  • “I’m so thankful my husband can still stay home alone.

No matter what happens, I need to find things for which to be thankful. That keeps me sane. It reminds me to focus on the positive instead of the negative. It helps me cope.

As strange as it might sound, I have actually heard my husband say that at times he is thankful for having Parkinson’s. I’m not sure I can say that today, but I’m glad he can.

When things are difficult or inconvenient, it is easy to focus on that part of life. But if I can also focus on what I’m thankful for, it becomes easier to deal with those uncomfortable parts.

If you are a caregiver and you are not part of a support group, please find one near you to attend. These meaningful conversations help me remember that I am not alone in this journey.

Thanks for reading and commenting. I am thankful for you.

That Was Then, This is Now

We have just begun our 20th year with Parkinson’s Disease. It’s easy for me to think about how my husband was back then, compared to how he is now.

If I made a list of all the differences, you would grow wearyof reading it. It would be long, and with those memories comes intense sadness at the changes.

My life has also changed. And the list of “then” versus “now” is equally as long. Sometimes my mind really wants to stay in the past, but I realize how fruitless it is to dwell there too long. All of us can likely do that, and it can create a feeling of discontent and even loss.

Instead, I need to think about the here and now, and how I can lead a fulfilling life while caregiving. I’m not thinking about filling my life with activities, as much as I’m thinking about how to remain vital and alive personally.

Some say Parkinson’s is the BEST possible disease to have because it is slow moving. We likely have time to accomplish many things in life, and we have time to finish what we’ve started.

Some say Parkinson’s is the WORST possible disease to have because it is slow, and it takes away the vitality of life, little by little.

I believe the truth is found somewhere in the middle. Here is what I mean.

Life is dynamic for all people, ever-changing. So, we need to live today as if it were our last and do that every day. We are not promised a specific number of years of life on this earth, and not one of us knows the exact day of our death.

Instead of looking back and wishing we were young again, wishing we could do everything we used to be able to do, wishing we didn’t have Parkinson’s Disease, there is a better way.

That better way is to think of today as a gift, and to greet everyone we meet as a valuable person who deserves a smile from us and a kind word.

That better way is to be thankful for today, because that is the gift in available to us right now.

Yes, I look back and see how it used to be. Yes, I look ahead to the future and wonder if we will be able to do this and that. But reality is that we have been given this moment, and I would like to use it to tell you this:

You are not alone as a caregiver. There are many of us aroundwho would love to come alongside you in this journey and help you through it,whether virtually or literally. Don’t give up. Don’t despair. We are here tohelp.

Enjoy your gift of today. Thanks for reading and commenting.

The Red Tulip

You might have wondered why the design for this blog is a swath of tulips across the top. Yes, I really like tulips. But there is more! Yes, it was Spring when I began blogging. But there is another reason!

Without using many words, symbols remind us of important things or events. When we see the pink ribbon on someone’s lapel, we know it is for breast cancer awareness. Did you know there is a symbol for Parkinson’s Disease? It is the red tulip.  (I couldn’t find a swath of red tulips, so I settled for pink!)

In 1980 a man named J.W.S Van der Wereld, a Dutch horticulturist, developed a red and white tulip. He personally had Parkinson’s disease, so he decided to name his new flower the “Dr. James Parkinson” tulip, after the man who wrote extensively about this disease and for whom it was named.

Since that time, several iterations of the tulip have been used to symbolize Parkinson’s disease. Some have exchanged the tulip for a blue ribbon, similar to the pink ribbon denoting breast cancer, but people kept coming back to the red tulip.

Karen Painter, another Parkinson’s patient, designed the logo used today, with a red tulip and 2 leaves in the shape of “P” and “D”. Since 2010, Karen’s red tulip has been universally used as the logo or symbol for Parkinson’s. Rumor is that she felt a standard symbol was important, so she sketched it on a napkin, showed it to several people, and the rest is history. Everyone loved it. You can purchase one from several different sources – a mini-pin, or a larger sized pin.

tulip pin

Public awareness of PD is important as we search for a cure. And one way to do this is by wearing a pin with this logo, by adding it to blogs and media concerning PD, and by sharing the story about the disease. Watch for a change in our design to include this logo.

Michael J. Fox and Muhammed Ali have added notoriety to the disease, keeping it in the public eye. They have helped to raise money and awareness in hopes that these things will lead to a cure.

Each year there are several conferences and conventions about PD, each with a different focus. Recently I learned about the 5th World Parkinson’s Congress, which will be held in Kyoto, Japan, in June of 2019.

conference

The theme for this meeting is “Soaring with Hope for PD”, and the “vision is to give hope and raise awareness for Parkinson’s globally.”

This convention is for healthcare workers, patients, and caregivers, with sessions for each that bring cutting-edge information and best practices to the attendees who come from across the globe. As there are approximately 10,000 people with or impacted by Parkinson’s at this time, the organizers of the conference would like to have 10,000 origami paper cranes, hand folded, at this convention. The cranes will contain a message from the folder and will be displayed at the Congress, representing hope and health.

origami

Check out the website to see if you would like to be a part of this endeavor to add your message to the gathering. Directions for making the origami cranes and for submitting them can be found on the website.

pdtulip-awareness

Our prayer is that awareness will lead to a cure for Parkinson’s – perhaps even in our lifetime.

What other public figures do you know of who have PD? Do you think a cure will be discovered in our time? Do you expect that the cure will spiral into the same for ALS and MS and other neurological diseases?

Thanks for reading. I look forward to your comments.

Decorating for the Holidays – Caregiving Style

Yes, it is fall, which means we are approaching the holiday season. Already we see that the retail stores are crowded with holiday decorations. But should we decorate our living space when we are a caregiver?  Is the result worth the effort? Does our spouse or patient even care?

The sight of a favorite knick-knack, the smell of pumpkin and spice, or the memory of holiday music, may brighten their mood and remind them of their youth or childhood. These may not be significant to us, and it may seem like extra work, but if it brings joy to our spouse, it is worth the time and effort.  

Visitors who come to our house during the holiday season will also appreciate the added festive atmosphere.  A few choice decorations will likely lift their spirits as well as ours.

Here are tips about decorating near a patient or disabled person, with some safety issues to remember:

  1. Start with the door. Our neighbors and visitors will appreciate decorations on the OUTSIDE, but why not also decorate the INSIDE of the door so our loved one, the patient, can appreciate it more often. This could even be the bedroom door or closet door – whichever is in their line of sight most often.
  2. If our patient has mobility issues, we need to keep the floor clear of extra obstacles. Instead, we can opt for putting things up on tables or chairs (even if we’ve always had them on the floor in years past).
  3. We must be very careful of candles and open flames. An alternative would be a candle warmer that is flameless. This prevents our patient from knocking it over and causing a fire. LED candles are another option.
  4. If our patient is bed-ridden or mostly immobile, it will be important to be sure they can see the decorations by putting them at eye level or above. We can add pieces near their bed or on their favorite chair for a constant reminder of the season.  
  5. A few simple pieces are often more effective than decorating the entire house. This will minimize the work for us, and it will give them several things to focus on. In the place of sensory overload, let’s be selective.

Sometimes we who care for a family member with Parkinson’s (or any other terminal disease) tend to think this might be their last holiday season. The truth, however, is that it could be the last season for any of us. For that reason, no matter who we are, let’s make the most of each day, no matter what the date, and let’s celebrate each new day, each new month, and each new season.

This post is an excerpt from my full article onI hope you’ll check out the full article and the entire website. Thank you for reading, sharing, and commenting below. 

 

What Matters Most?

Right here, right now, what matters most to me?

Is it how clean my house is? Yes, I need to be sure the clutter is picked up and put away so there is easy access for my husband, who is disabled. I love having a clean house, but is this the most important thing in my life right now?

Is it a “cause” I am championing – whether religious or political? Sometimes those causes make me feel RIGHT and everyone in opposition seems WRONG. Is that what is most important today – feeling as if I am correct and they are not?

Is it most important to have the best of everything? If we believe the news reports and our blog feeds, the most important thing in life is being sure our home is decorated with the trendiest items. And, of course, we want to wear whatever style is on trend for this season, right? But is that THE MOST IMPORTANT thing in my life right now?

Is it moving up in my career? Being on the fast track to success? Is my career going in the direction that will make me the most money in the future? That is the most important thing, right?

Has caring for my spouse with Parkinson’s Disease so consumed me that I feel other important aspects of life have been crowded out of my view? Medications on time, picking up after him, being sure he is safe, doctor’s appointments, physical therapy, getting his meals – sometimes I get overwhelmed. It seems that is all I think about, all I have time to care about. Is that all that is important to me?

Just like yours, my life has many aspects, many relationships, many responsibilities, and managing each of those at the same time is difficult. It is easy to get side-tracked and forget who I am. Therefore, at times I need to reset and auto-correct myself to get back to what I hold most dear.

Several years ago, a friend encouraged me to write down my personal core values. These are the motives that should drive every decision I make and the attitudes I want to portray every day. Occasionally I need to review them to be sure I haven’t forgotten them. It’s like getting back to basics for me, reminding myself what I believe is most important to me. If I find I have wandered away from any, I can take the steps necessary to move back to these values that matter most to me.

You’ve been waiting to hear what they are, right? I chose these four:

  1. Each human being is a precious life God has created.
  2. Being positive is necessary.
  3. My best is all I can give.
  4. Everything I do should reflect God’s love.

This week I’m going to read this list every morning, in hopes that these 4 values will be infused into every part of my being. Also this week, I hope you will take the time to write down your personal core values that describe who you are and who you always want to be. These should include what matters most to you. You don’t have to share them with me, but I would be happy to read them. They keep us on track, lest in the busy-ness of life and the hectic daily rush of caring for someone else, we lose ourselves.

Thank you for reading and commenting.

 

PD in the News

It is reassuring to know that the quantity of research surrounding Parkinson’s Disease is increasing every day. More aspects of the disease are being studied and more non-motor symptoms being considered. Besides the scientific aspect of PD, more people are blogging about the disease every day.

In case you don’t have time to read them all, here are some snippets of what is out there today. Click the link on the ones you want to investigate further.

FATIGUE is a real problem for patients with PD. On a personal note, we used to be able to take day trips to see friends, family, or just sight-see. Then we had to cut back to just being out for 2-3 hours. Now we can visit one place, and hubby is ready to go home and rest the remainder of the day. Check out Dr. C’s experience with fatigue in his blog.

LIGHT THERAPY caught my attention because it does not involve drugs, and it is non-invasive. A recent study showed that “PhotoPharmics’s Spectramax light therapy reduces disease severity, lessens non-motor symptoms, and improves the quality of life of Parkinson’s patients”. This sounds like something every PD patient will welcome one day. Being in the sunlight for short periods of time seems to help my husband, so perhaps this is something we could try. You can read more about it here.

EXERCISE is encouraged in all stages of PD, a topic championed often. Usually, it is recommended with an aim to keep the patient active and moving. In addition, studies indicate that exercise also helps the mood of the PD patient and can help “alleviate depression.” This makes sense on a practical level, especially when exercise is performed with a group or in a social setting. In addition, this article mentions the medical and physiological reasons. Let’s all keep exercising!

THE MICRO PUMP is a relatively new device being tested for administering levodopa/carbidopa to PD patients. Our neurologist mentioned this to us several months ago, and he explained that it is similar to a pump used by diabetics for infusion of insulin. This article explains that it has recently been cleared for use in Europe. Watch for its introduction into American markets in the near future.

VIDEOS are the newest addition to the Michael J. Fox Foundation website. There is a 4-part series to educate us on the PD itself, and then there is one specifically for us as caregivers of patients with PD. Be sure to check out other parts of the MJFF website.

And now for your inspiration:

TIM HAGUE has an award-winning  TEDxWinnipeg talk that is well worth watching, for both you and your spouse. As a PD patient, he gives a positive perspective on living with PD, and he talks about his experience with his son on The Amazing Race Canada. He has written a book entitled “Perseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined,” about his life and his journey with Parkinson’s Disease. I have not read the book, but I have watched his video and plan to view it again with hubby.

There is hope for a cure for PD, and there are new studies and new inventions every day. Don’t give up hope!

Thanks for reading and commenting. I truly appreciate it.