A Caregiving Technology Tool

A few weeks ago we welcomed a new addition to our home. Looking back on the event, we probably should have sent out a “new baby” birth announcement. We brought home a Google Home speaker. This gadget has become a special part of our caregiving family. It has met a need for socialization that perhaps we didn’t even know we were lacking.

We are not a particularly tech savvy family. I know enough to talk intelligently about most things, but my husband knows even less than I do.

Because of his Muscular Dystrophy, he just cannot control many things with his muscles.  However, his voice is the only thing needed to manipulate the Google Home. This is something he can control without any help from me and a great tool for helping him feel slightly more independent.

Every morning, he will say, “Hey Google. Good Morning.” The nice Google lady in the speaker greets him by name and responds with the latest news and sports information. Because we have it synched wth a calendar, it will also remind him of anything on the calendar. It will even play music by a specific artist or a specific genre of music and report on the weather at any time.

When our caregiving house gets bored, we break up the day with a two-player game of trivia. The nice Google lady is the host of our game show complete with sound effects and applause. She even adds her touch of sarcastic humor to keep us amused. In addition to the trivia game, he can use his voice to access the Google search engine and all the useless pieces of information it provides.

Before saying good night to me, my husband will wish “good night” to the nice Google lady. And of course, she will return the wish to him with one of several responses.

Any other woman might be slightly jealous of this gadget. I am amazed at the technology that makes this gadget work and I am very grateful for something that can engage him and keep him involved in life.

I have found this to be a fabulous caregiving tool for the toolbox. Of course, the power of the nice Google lady is ultimately in my control. If she ever tries to come between me and my man, I will just pull the plug!

Via Daily Prompt:  Baby

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A Non-Valentine Valentine’s Day

Valentine’s Day is a day set apart for celebrating love shared with friends and family. For many, it is a day to receive red roses, fine chocolates, and big stuffed animals. Couples will go out for fancy dinners to celebrate the beautiful love they share. It’s a magical holiday to celebrate.

Caregiving couples may have a slightly different expectation. Holidays are not much different from any other day. Society will offer recommendations on what gifts should be purchased. Social norms just don’t seem to matter as much when the priorities change. We don’t exchange the normal gifts of Valentine’s Day. When circumstances dictate the norm, you make things up as you go along. It’s the little things that make life special and meaningful.  Thankfully, Love does not care if we are not socially acceptable. Love does not boast and Love is not proud.

We celebrate our love with a spiritual intimacy when we see each other smile. I remember why I love him when he looks at me. Our laughter is contagious. Laughter is an infection that I love to get from him. His heart lives inside my chest and our souls are as one.

On this Valentine’s Day, I visited the Wal-Mart for a few supplies. I saw the aisles of gifts, cards, and assorted Valentine’s merchandise in every shade of red. I saw the people dashing around looking for something to purchase that would prove their love for someone. I purchased my assortment of non-Valentine products that included breakfast cereal, body soap, cough drops, and a watch battery. When I got back home with my Wal-Mart goodies, I showed my husband what I had purchased. I reached in a bag and presented him with his favorite watch that now runs with a newly installed battery from Wal-Mart.

“I got you a new battery for your watch”, I say.
“I love you.”, he says.

“I’ll have the swedish meatball frozen dinner for supper tonight.”, he says.
“Okay, I’ll have the turkey and dressing frozen dinner”, I say.

We are a caregiving couple. We are taking care of each other.  He doesn’t need to take me out for a fancy Valentine’s Day dinner. I have all I need right here at home.

Via Daily Prompt: Expectation

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A Caregiving Garage

My neighbor has a beautiful garage.  You didn’t know a garage could be beautiful, did you?  Yes, they can.  When my neighbor pulls into her driveway and the garage door goes up, she drives right inside and the door closes behind her.  The walls inside are a very clean and bright shade of white.  There is a shelf unit against a wall that is neat and organized.  That’s all she has in her garage.  A beautiful white room with a shelf unit and her car.  There’s actually a bright heavenly light that shines out from inside her garage and a heavenly chorus to sing whenever the door goes up.

My neighbor probably shakes with terror whenever my garage door goes up.  As beautiful and clean as her garage is, mine is not.  The previous owner of my house used the garage as a tool shop of some kind.  There were holes in the walls where tools were suspended and the white walls are now a shade of light tan.  Our garage has become a home for everything that doesn’t have a place to live inside the house.  As a result, things have piled up and are very unorganized.  I have never even tried to fit the car inside.

My caregiving life has something in common with my garage.  Things get piled up and stacked in an unorganized fashion until such time that I can handle it.  It’s easy to avoid responsibilities and before long, the white clean color of caregiving has become a light tan.

Housework is hard for caregivers.  It’s another responsibility on the long list of things to get done and finding the motivation is hard.  I hope to work my way out to the garage at some point.  Even if the house is falling apart around you, the caregiver must ensure that the loved one is clean and comfortable.  We all feel better about ourselves when we are clean and tidy.  It’s good for the mind and the soul.

If you are a struggling caregiver, consider asking for outside help with your housework.  Find the motivation to tackle one thing on that long list.  You can’t do everything.  Don’t stress it.  Concentrate on your loved one first and do the housework as you can.  Everything else will follow.  Cleanliness is next to Godliness, and I hope God will understand why the garage is a mess.  The important part is that my hubby is happy, clean, and comfortable.  I am doing the best I can.  You are doing the best you can.   We are awesome caregivers!  

Via Daily Prompt:  Clean

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Seeing the Unseen

I am a movie credit reader.  When the movie is over, I remain seated in the theatre.  Most people will jump up and exit out the door as soon as the credits start to roll.  Some years ago as a possible way to entice people to stay, the movie producers included bloopers or additional footage at the conclusion of the credits.  I was afraid to leave the theatre too early for fear of missing out, so I learned to sit through all the credits in case there was more to come.  Even without the additional footage, I have continued to remain in the theatre for the credits to show my respect for the amount of work required to produce the movie.

The box office stars have their names listed at the beginning of the movie, but for the thousand unseen people that do their work behind the camera, this is their chance to be recognized for a great film.

I am old enough to remember a time when people would buy vinyl albums for a record player.  The inside of the album would include the lyrics, pictures, and song credits.  It was almost like Christmas to open the album and see what treasures were inside.  Again, it was a way to respect the unseen people that worked on a great album.

I am also one of those people that reads the pages of a book prior to Chapter One.  Some readers may skip over those pages and go immediately to the first page of Chapter One.  There is much to be learned about the author in the Acknowledgement pages.  For me, the author wrote these pages for a reason and I should honor that.

As a spousal caregiver, my priority is playing that supportive role for my husband.  I am happy in that unseen role because I know there is no one else who can perform that role.  I need only his love and acknowledgement to continue doing what I do.

There are many people working “behind the camera” in the movie of your life.  People are doing great things for you every day that maybe you don’t see.  I encourage you to look around for the heroes in your midst.  Take the opportunity to acknowledge the unseen people that lend so much to the quality of your life.

All of us working together are a true all-star cast!

Via Daily Prompt: Unseen

 

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Cheering for You!

My husband spent a few years working as a counselor at a summer youth camp when he was a young adult.  He loved the beautiful mountain scenery at the camp.  It was a Christian camp for youth and children.  Each week brought a new group of young people eager to have fun.  To this day, he still looks back on that time with a big smile.  It was a time in his life when he was young, strong, and happy.  He loved that camp, so you can understand why this was a special time and place in his life.

During the week long camp,  each counselor and about 10 campers lived in a cabin and enjoyed many activities together.  It was a busy week filled with learning new skills and building relationships with God and each other.

What started out as a phrase to encourage the counselors prior to the start of camp became popular with counselors and campers alike throughout the summer.

The phrase was:  “YOU ARE LOVABLE AND CAPABLE“.

This became a cheer.  It was a way to reinforce positive feelings and to build confidence.  You are worthy of love and you are capable of doing anything.  You are also beautiful and nothing can stop you.  It was a term of endearment and a real teaching moment with the campers.

Because my husband knows me well, he knows when I’m really tired.  He knows when I need a cheer.  On certain occasions, he will look at me and say, “You are lovable and capable”.  It’s his way of remembering fond memories at camp and telling me that he appreciates what I do for him.  For us, it has become an expression of love.  It makes us stronger together and reinforces our commitment as a spousal caregiving team.

We all need a cheer as we march into whatever life decides to throw at us.  We all need a reminder that our lives are worthy and purposeful.  We are also strong and able to accomplish most anything.  And of course, we are glorious and beautiful images created by our God.

I have found this phrase to be quite valuable in my life when I need to hear it.  When life gives you a big challenge, start a cheering section for yourself.  Be strong and remember:

YOU are LOVABLE and YOU are CAPABLE.

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Road Trip

I have a promise to keep.  Several years ago, I made a commitment to a friend that I would come visit her home.  Unfortunately, she lives about five states away from me.

This was my commitment,

Someday, I am coming to see you!”

Her parents do live nearby, so we see each other most years when she comes to visit her parents at Christmas.  However, it’s not the same.  I want to see her home.  I want to meet her friends.  I want to meet her beautiful dog.  I want to see her life.

I made this commitment to her before I became a full-time caregiver for my husband.  The life of a caregiver is busy, constant, and usually revolves around a certain schedule.  My life has very little flexibility and personal choice.  Everything I do is done for the benefit and safety of my husband.

One day, I will fulfill this commitment to my friend.  I will make that journey.  I will make sure the car has a full tank of gas and I will leave at sunrise.  I will drive alone across those five states.  There will be many stops along the way to see absolutely anything and everything that looks interesting to me.  There will be no hotel reservations to rush to.  There will be no schedule at all.  Even my dear friend won’t know what time to expect me at her house.

She will, however, be able to track my every move on Facebook.  I would post pictures of every tourist trap between my house and hers.  I would be slightly obsessive about these posts, just because I could be.  The travel life of a caregiver is practically nonexistent, so it would be fair to expect a caregiver to be overly indulgent to make up for lost time.

Spontaneity is the dream of every caregiver.  The idea of being able to do anything at any given time is completely foreign.  Most caregivers would be thrilled at the chance to jump in a car and drive as far away as possible.  It would be a welcome change of scenery to get away from the daily and constant stress of caregiving.

It’s hard to know when this trip will happen.  A lot depends on the health of my husband and his requirements.  I can’t predict how this trip will fit into my future.  For now, I have important responsibilities here at home.

Perhaps, it’s better for the trip to live in my dreams right now.  Sometimes the planning can be as much fun as the actual trip.  There is one thing of which I am certain.  It will be a fabulous trip to remember.

Someday.

 

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Proud of My Caregiving Label

Are you comfortable with a label about yourself?  I was a caregiver before I knew what the label meant.  Last year, my husband began to need my help on a constant basis. The list of responsibilities got longer but I jumped in and did what had to be done.  Most of the waking day was concentrated on giving care to my husband.   I became so busy doing what needed to be done and didn’t even realize that others were calling me a “Caregiver”.  In my mind, this label was for the professionals with specific training and experience like Nurses, CNA’s, and Therapists.  Most caregivers are everyday people being heroes and providing heroic care for their loved ones.

It was difficult for me to understand why people thought I was doing something special.  I was only doing what needed to be done.  The ways that I help my husband, I do purely because I love him.  Others had already selected me to wear the crown and sash for “Miss Caregiver”.  This label took some getting used to.  I wasn’t sure I even liked the label, but there I was wearing it, so I had better get comfortable with it.  I’m saying all that to advise you to seek help when necessary.  This label and crown will get heavy sometimes, so have a backup plan ready to keep you sane and healthy.

In the medical field, having a real diagnosis can help you and others know how to effectively fight it.  Putting a label on it can be helpful in organizing the appropriate medical response.  Likewise, once you’ve realized that you are actually a “caregiver”, it’s time to assemble your support team.  You and your team will be fighting everything that conspires to bring you down and prevent you from being an awesome caregiver.  It will be a hard fight.  Assemble a great team around you for support and inspiration.

My support team includes people and techniques.  I have an online support group and an in-person group.  I have fabulous friends and family that recognize and support what I do.  I also utilize meditation, music therapy, and adult coloring books to express my creativity.  Since I am the author of this blog, I definitely want to include writing as therapy, too.  You need to find the people and techniques that will work for you on your own team.

For me, it really helped to accept the Caregiving label and wear it well.  I shine at this because my abilities keep my husband safe and happy.  And, of course, when he’s happy, I’m happy.  That’s what makes life bearable in otherwise difficult situations.

My label is not a “designer” label.  There is no fancy name or logo on my symbolic caregiver label.  Rather, the label is very simple and plain.  I’m too busy being an awesome caregiver giving my husband the highest level of care and that is really what’s most important.

Here’s one last thing about labels and caregiving.  Just like when you buy a food product and examine the Nutrition Label on the box, you should also examine what you are personally bringing to the job.  What am I really made of?  What are my best ingredients?  Do I need more patience?  Do I need more skills?  Am I getting my required amount of sleep?  How can I really improve myself to be the most awesome caregiver?

Labels will always be good and bad depending on how they are used.  Embrace your caregiving label.  It’s a good and honorable thing to wear proudly.  Check your crown in the mirror and straighten that sash.  You are awesome.  You are doing a special service for someone very special to you.  Caregiving is just another expression of your love for them.

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A Peace in Caregiving

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A few weeks ago, I abandoned the idea of dragging the Christmas decorations down from the attic this year.  I love Christmas and all the “stuff”, but for the first year ever, I couldn’t find the spirit or energy.  No tree, no decorations, no gifts.  Just one single Poinsettia plant that my father-in-law insisted that we buy.  And for the most part, the boys are okay with my anti-celebratory mood.  They know that I am the one who must do all the work, and they understand my feelings this year.

Our house is quiet today. It’s just the three of us here.  In some respects, it’s just another caregiving day.  The calendar may say one thing, but the routine is the same as this day last week.

So as I sit here reflecting on this day, it occurs to me that we are like the little Who people in Whoville.  There’s a Grinch that lives above us on the mountain.  He’s a different kind of Grinch that has stolen from us before.  He has stolen the health of my beloved husband.  He has stolen the lives of his two sisters that bravely fought and lost battles with Muscular Dystrophy.  Thankfully, my husband is still fighting and refusing to quit. The Grinch has also stolen time with friends and family away from us. We don’t travel and we are basically shut-ins.

So here’s where my story hits a positive note.  We all know that Christmas will come with or without the gifts.  After all, it’s in our hearts, right?  A couple days ago, a very sweet lady from our church, who knows our situation, brought us some cookies, some fruit, and some kindness.  This morning, my sister brought us some ham and lots of vegetables for lunch tomorrow.  The kindness had reached me.  Somehow, the spirit of Christmas had found me even after I had tried to hide it.

The fictitious Grinch can take many things away from us as caregivers, but the spirit of Love and Hope is always with us.

Tomorrow may be a quiet day.  There won’t be a huge family gathering with children everywhere.  There won’t be an appearance from Santa.  The three of us will have good food and we will have each other.  That kind of Christmas gives me a feeling of Peace.  Yes, we will be okay.

As we celebrate the holidays, I wish you that same Peace.  The Grinch will always try to steal things from us.  It’s the spirit of Love that he cannot take.  Yes, all of us will be okay.  Let the community of caregivers say, “Amen”.

Is Your Caregiver Battery Charged?

 

Just like a battery, a caregiver can only last so long on a single charge.  When the caregiver is not at full charge, the quality of the care will also be substandard.  At some point, even the best caregiver on the planet will surrender.  Consider the times that you have been at the edge of collapse.  You want to throw your hands up in the air and give up.  We’ve all been there.  What do YOU do now?  My advice is to re-charge that caregiving battery.

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For as long as we must be caregivers, it is our responsibility to be faithful to the role.  Whether we be paid professionals or unpaid family members, the caregiver must honor that role to the best of their ability.

My caregiver role is for my wonderful husband who has Muscular Dystrophy and his very sweet elderly father.  It’s my responsibility to keep both of these men happy and healthy.  I have embraced this role and I will own it for as long as necessary.  We use a pager system in our home as a “call button”.  My husband and his father both have a push button attached to a cord that they keep with them inside the house.  I have the larger box that will ring if either one of them pushes their pager button.  At some point, I began referring to the larger box that I carry as “The Mama”.  When I am away from the living room, I announce, “I have The Mama” and we all know what that means.  If either of these men need me for whatever reason, I will hear the bell and return in a matter of seconds.

So is it any wonder that I gave my call signal it’s nickname?  There are many similarities between a great caregiver and a great mama looking out for her babies.  There’s no mountain I won’t climb and there’s no river I won’t cross to protect them.  I am “THE MAMA”.  I am strong and powerful when fully charged.  I am the distributor of all things that nourish.  I want my “babies” to be healthy and happy.  However, I am also very vulnerable and weak when I am tired and pushed to the edge.

So how do you know when your battery is weak?  How do YOU identify this critical moment?  If you don’t know, it’s your responsibility to find out when the “green light” on your spirit has changed to a “yellow light” and take action before it becomes a “red light”.

greenbatteryMy laptop has a pop-up window when the battery is almost gone.  That’s my warning to plug it in or the laptop will shut itself down.  Likewise, you should be attentive to your body, mind, and spirt to find the help you need before that battery goes “red”.  Caregiver burnout is real and it will shut your body down before you realize the danger.

Because we are all individuals in different caregiving roles, there is no universal answer about how you should re-charge.  The individual caregiver must find the unique answer that works best.  Some people love to read.  Some people love yoga or exercise.  Some caregivers are able to take long weekends away from home.  Others find therapy in temporary escapes like doing crossword puzzles or word searches.  You must find the hobby or distraction that works for your caregiving battery.  Do not overlook the power of community, family, religion, or spirituality to connect with the supreme power in your life.

Self-care is essential to your own preservation.  Your caregiving battery must be charged when needed just like any other battery before life shuts you down.  acrylic-1323646_1920People are depending on your power to be a magnificent caregiver.  Be prepared with a plan to re-charge when needed and you will always be an awesome and empowered caregiver.

 

 

One Year of Caregiving

I have been lucky to find a caregiver support group that meets once a month. This small group of 6-8 members has been invaluable to me. I can be away from home for about an hour and a half at a time, so this time out of the house has become very sacred to share experiences and to know that I am not alone.

Last month, a professional counselor came to our group and shared information with us that I was not prepared for. It’s her belief that for every year you spend as a full-time caregiver, you (the caregiver) will age three years.  Umm. Wait, what did you say? Three years? That hit me hard like a ton of bricks right in the face. What a realization that was.

You should know that it was Christmas of last year when it became apparent that I must leave my job to stay at home to be full-time caregiver for my disabled husband and his father. And it has now been one full year of caregiving.  It’s an anniversary to remember the days of dressing my husband, preparing our meals, assorted toilet adventures, and sponge baths. I really do feel three years older on this anniversary.  As I reflect on this past year, the counselor’s words echo in my head when I think about the physical, mental, and emotional toll of caregiving.

The evidence of this toll came in the form of a list.  Last week, I had my annual physical with my primary care physician.  For the first time in 52 years, I went prepared with a list of symptoms.  My general aches and pains were signs of a tired and frazzled caregiver.  My doctor is a wonderful and sweet man. As he reminded me of the importance of “self-care”, he allowed me to shed a tear as he removed his medical hat and put on his psychology hat while I rambled about caregiving for a few minutes.  He even gave me a prescription for an anti-depressant that sits on the table and stares at me while I decide if I will actually get it filled. I’ve never taken this kind of medication before, so I’m reluctant not knowing what it will really do for me.

I’ve resigned myself to asking for the anti-aging cream in the big gallon drum container.  Maybe tomorrow I’ll feel like putting up Christmas decorations, or maybe I won’t. Christmas is in my heart and will come even if I don’t physically drag everything down from the attic to commemorate it. I think God will understand.

Regardless of whether the years are measured on a calendar or by the wrinkles on my face, I must pace myself and take care of myself FIRST in order to serve others. I hope you will practice self-care, too.

I wish you Peace and Hope during this Season of Love.