Category Archives: Life

Being a Caregiver Can Teach You Valuable Life Lessons

Caregiving:  An Act of Love

Caregiving: An Act of Love

Whether we are caring for an aging parent, child or ailing spouse many of the challenges of caregiving are the same.  I would like to share one caregivers story.  Cameron Von St. James was thrust fully into the role of caregiver when shortly after the birth of his first child his wife was diagnosed with cancer.  What he felt and learned during his caregiving experiences are described here in his own words.

By:  Cameron Von St. James

My wife Heather and I welcomed our first and only child, Lily, into the world in August of 2005. It was supposed to be a happy time for us, but just three months later our lives would take a turn for the worse. The holidays were approaching, and we were preparing to celebrate Lily’s first Christmas. Instead, our lives were thrown into chaos when my wife, Heather, was diagnosed with malignant pleural mesothelioma cancer. It was also the day I would begin my new role as a caregiver.

Before we left the doctor’s office that day, I was thrust, unprepared, into my new position as a caregiver. The doctor talked about mesothelioma and treatment options. We were told we could either go to the local hospital, a regional hospital that was highly respected but had no mesothelioma program, or to Dr. David Sugarbaker, a doctor in Boston who specializes in this type of cancer. My wife sat in silence and disbelief. I was hoping she would choose an option. “Oh, God, please help me!” was the look of desperation I saw on her face. I knew I had to be strong for her. I made my first decision as a caregiver when I looked at the doctor and said, “Get us to Boston!” I didn’t realize it then, but it was only the first of many decisions I would make after Heather’s diagnosis.

Chaos replaced our normal life. Before her cancer diagnosis, we both worked full time. Now, she wasn’t able to work, and I was working part time and adjusting to being a caregiver. My days were filled with taking Heather to doctor’s appointments, making travel arrangements for the trips to Boston, and taking care of Lily.

I felt overwhelmed by the growing list of things that needed done. Emotionally I was a wreck. I worried about losing my wife. I wondered if we would lose everything fighting the cancer. I feared I would become a homeless widower with a young daughter to care for. Fear consumed me. I would find myself on the kitchen floor bawling in despair. I wanted this to go away. I was thankful these feelings didn’t last long. I had to be strong. I knew I needed to be the one Heather could lean on. I was careful not to let her see me during my times of distress.

Offers of financial assistance and words of comfort were numerous from friends, family, and even strangers. We could never thank all who helped us in our time of need. When people offer assistance, no matter how big or small, take it. You are not alone. Embrace these people into your life. They will help lighten the load.

It isn’t easy being a caregiver. It’s not a job you can walk away from or quit when the going gets rough. It will probably be the toughest challenge you ever have to deal with. It’s normal to feel anger, uncertainty, and stress, but don’t allow your emotions to take you hostage. Give yourself time to grieve during the bad days. Nobody is going to cope well every day under stressful circumstances. Never give up hope. Use your resources to help you keep your sanity and navigate through this difficult journey.

It’s been seven years since Heather’s mesothelioma diagnosis, and she is cancer free today. After going through surgery, chemotherapy, and radiation, she was able to beat this horrible disease. It has taken years for life to return to a somewhat normal routine again.

I have grown through this ordeal. The cancer helped me see how precious time is. It also taught me that my stubbornness has advantages. Two years after Heather’s diagnosis, I went back to school full time to study Information Technology while working a full time job and caring for Heather and our daughter, who was only two years old at the time.

Fighting cancer with my wife taught me how to balance time commitments and cope with stress. This prepared me for the challenges of going back to school and completing my education. I graduated with high honors and was the speaker at my class graduation. I will never forget the feeling of accomplishment I felt as I stood there.

If someone had asked me on November 21, 2005, where I was going to be in five years, I never in a million years would have expected to be up on that stage giving a speech. The future looked dismal that fateful day. Never giving up hope is what made the difference in my life. I learned through this experience that inside each of us is someone capable of accomplishing more than we can imagine. We simply have to believe in ourselves and never give up.

Click here to view a video of Heather’s Story

On the journey with you,

Kathy

Dueling Daughters, Battling Brothers

Family Discord

Family Discord

Sadly, I have witnessed many times at the end of a parent’s life, the adult child (or children) failing to honor the wishes of their mother or father in the end of life care decisions.  And if there is disagreement amongst the siblings, it can create bad feelings at a time when there are already enough ‘bad’ feelings to go around.

Maybe the parents did not have the forethought to create the documents that they needed to assure that their wishes were made clear.  Maybe they did not communicate their wishes fully to their children.  Maybe the documents were done, but for some reason the child (or children) decides to ignore those wishes and determine treatment based on what they would like (or are comfortable with).

And when you have one child that wants to do one thing and another child that feels differently, it creates a situation of bad feelings.  For the one who wants to advocate for the parents’ wishes, they feel that they have failed if they do not prevail.  And for the child that is choosing their own wishes over that of the parents, there is an underlying, deep reason that is trumping those wishes.  And when both sides are vested in being ‘right’, nobody ‘wins’.

To those of you who find yourselves in this position I encourage you to take a step back.

If you are making care decisions based on your wishes rather than that of your parents (whether they are documented or not), I would ask that you examine why and to think about what you would feel if somebody did not honor your wishes at the end.  We all have different beliefs about end of life care and that is OK!  What I think is most important is that we can see our way clear to honor our parents’ wishes even if they differ from our own just as we would want our children to honor ours even if they believed differently.

And if you are the child trying to push to honor your parents’ wishes, I would challenge you to look at the relationship that you have with your siblings and think about what ‘winning’ on that issue will cost you in the way of your relationship going forward.  I absolutely believe and advocate for the rights of seniors, but in the end, family harmony can be a powerful navigation system.

Maybe my thoughts on that are a legacy from my own father.  He definitely had different views about end of life than I have, but did communicate at the time of making his living will that he placed a premium on family harmony in end of life decisions.  Maybe there was a wisdom there that I didn’t fully grasp at the time.

This time of transition is difficult enough without disharmony in the family.  If you need to work through these issues, be kind to each other.  You are all dealing with this disagreement at a time when there are already deep emotional feelings.  Try to remember that your siblings are having some of the same feelings and see your way clear to approach them with some compassion.

And if you can do this, you will truly have honored your parents’ lives in the best way that you can, by loving each other.

On the journey with you…….Kathy

Lessons We Learn…. About Sleep

As I was lying in bed this morning waking up to a new day, my mind started thinking about sleep.  Not that I wanted to go back to sleep; just the benefits of sleep, the downsides to sleep deprivation, the energy boosting charge of power naps, and so on.  In that state of coming awake all kinds of thoughts passed through my stream of consciousness.

I thought about my daughter and son-in-law who, with a new baby, are facing the stage and challenges of sleep deprivation.  I recalled, when my daughter was born and came home after spending 10 days in the highly lit and active environment of the NICU, having my husband order me to bed one night to get some sleep while he stayed up to entertain the mis-programmed baby.  I was so disoriented from lack of sleep that I didn’t know which end was up!

The next thought about sleep that circled through my brain was that, growing up, it seemed to me that my father thought anything could be cured by sleep and Vitamin C.  No matter what the problem, you just needed to get more sleep and down doses of vitamins!  Even in his later years he was never convinced that the medications that his doctors prescribed, even those for his dementia, did any good.  He was not persuaded even if we, his family, were able to observe to him that we saw improvements!  Pshaw!

And then my mind was on to the great benefits of a Power Nap!  When I worked the 3-11 shift as a nurse during the years that my kids were still young and I had to get up and get them off to school in the morning, I survived only by the use of the Power Nap! After lunch, I would settle in for 30 minutes or so.  I rarely had to set the alarm because if I fell asleep on my left side on the couch, my left hip would start to ache just a bit at about the 30 minute mark and wake me up!  And off I would go for the second part of my day!

Now getting a good night’s sleep can be difficult for some.  Most of us have probably experienced insomnia at some level, some time in our lives.  There are many things that can interrupt sleep.  Topping the list would probably be worry and stress but there could also be medical issues, pain, and hormonal issues (you women know what I am talking about).  Then many of us throw in the use of caffeine (to keep us awake!) and alcohol (to relax??) which both impact the quality of sleep.

If you are not sleeping well, you may benefit from the Power Nap.  If you have not experienced the Power Nap and wish to try it, the National Sleep Foundation provides information on the types, tips and benefits in this article on Napping.

Leonardo da Vinci said, “A well-spent day brings happy sleep.”  I think there is wisdom here.  I know that if I have had a busy and productive day and feel that I have gotten the things done that I set out to do, my mind is able to relax into sleep fairly easily; if my mind is perseverating on something that I’m worried about or didn’t get done, not so much.

Yawn!  All this talk of sleep is making me feel like I could use a nap…….

Time to Power Up!

On the journey with you…….Kathy

Lessons We Learn…. About Santa Claus

“I’ve learned that there are four ages of a man:

1.  When he believes in Santa Claus

2.  When he doesn’t believe in Santa Claus

3.  When he is Santa Claus

4.  When he looks like Santa Claus”

I think that I am in the transition phase once again; moving from being Mrs. Claus to looking like Mrs. Claus (though my hairdresser is the only one that really knows how closely I resemble her).

And in my new stage of Santa-ness, I have a hugely different perspective on what Christmas is about than I did as a believing-in-Santa child.

Continue reading

Post Holiday Thanksgiving

To my WordPress followers,

I take pause this morning in lieu of my normal posting to report on my Thanksgiving Weekend.

There is even more to be thankful for in my life now with the arrival of our first Grandchild on Saturday following Thanksgiving Day.

Our Granddaughter made her grand entrance, ultimately by c-section, after a long day for mother and father (and pending grandparents!).  All are well and today she comes home to her family!

Each Thanksgiving will now be a reminder of her arrival into our family; some years her birthday will even fall on Thanksgiving Day!

So, I am thankful, after this Thanksgiving weekend, for doctors who know their craft, nurses who know how to encourage, c-sections that save the lives of babies and mothers and my brand new baby granddaughter.  I am also grateful for a fabulous son-in-law who encouraged, quietly worried about, and loved my daughter through the whole ordeal all the while allowing me to be a part of things (all except the birth which I left totally to the 3 of them!).

So for now, that is my post of Thanksgiving for the day.  If you wish to read another, please check out the post on my website:  The Tough Love of Dementia Care.

On the journey with you,

Kathy

Kathy Eynon is an Eldercare Coach and Consultant that works with those struggling to cope with the demands of caring for an aging parent.  She can be reached by email at: Kathy@ParentCareAlliance.com or visit her website at www.ParentCareAlliance.com.