Tag Archives: care decisions

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

Difficult Conversations: Are your elderly parents resistant, reluctant or ready?

In our attempts to have difficult conversations about the future with our elderly parents, we might encounter one of three reactions.  These reactions will shed some light on their ‘readiness’ for those conversations.

 

 

What stage are you encountering in your attempts to discuss your concerns?

 

On the journey with you…….Kathy

Kathy Eynon is an Eldercare Coach and Consultant who 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.

The Eye of the Storm

Celebrate!  My siblings, Mom, Dad and I have come through the front wall of the storm and have arrived safely to the tranquility of the eye!  With hurricane season upon us once again I could not resist this metaphor!

After months of visits, decisions, choices, aggravations, packing and more decisions, we have finally gotten both of my parents settled into a Continuing Care Retirement Community.  I can now say to you that it was quite a feat, requiring hours and hours of on the scene assistance as well as time behind the scenes arranging and organizing.

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Do Not Pass Go….Do Not Collect $200……

I used to play a game with my siblings and friends growing up called ‘The Mountain Game’.   It was a game featuring Southern locations such as Chimney Rock, Grandfather Mountain and the Tweetsie Railroad, and much like Monopoly, there were more than ample opportunities to ‘Go Back to ….fill in the blank…..’ during the course of the game.  Games could go on for hours because you might be almost to the end and get sent back to the very start of the game board.  You lived in hope of landing on a spot that instructed you to draw a ‘Good ‘Un’ card and always groaned when you had to draw a ‘Bad ‘Un’ card.

It was a game of two steps forward, three steps back and in order to ever finish the game you had to keep your sense of humor and maintain a great deal of patience; be willing to survive and move through that next roadblock in order to reach Ruby Mine at the end of the game.

I think that helping your parents with living transitions can feel a little like this type of game.  Sometimes it can feel like you are just breezing along and then, hold on, just don’t get too confident there….that bump in the road comes along to remind you that you are not all that and a bag of chips!

My family has been in the middle of a huge transition over the past couple of months.  After my mother had some medical issues earlier in the summer, it became apparent that it was time to discuss a move for her.  If you have been following my posts you know that she had been vacillating about moving out of the house for a while now.  But with the extreme amount of time that these health issues were beginning to consume for myself and my siblings, it was rapidly becoming a more pressing issue.  We needed to consider getting them both situated in a place where they would be safe and where there was somebody to respond to them in a timely manner around the clock.

This move involved visiting locations and making decisions about any number of things.  It meant involving my father, who has dementia, to the greatest extent possible and trying to find solutions for Mom and Dad that met both of their needs.  Additionally, we needed to consider the financial aspect of all decisions that were being made.

With Mom in a house that our family moved into in 1965, Dad in a nursing facility, myself 3 hours away, and siblings a bit more local but also busy with jobs, etc., it has become a bit of a juggling act.  There have been roadblocks a plenty but we pushed on.

My mother has just moved into an independent living apartment in a beautiful Continuing Care Retirement Community!  In the past weeks we have been going through the process of trying to scale her possessions down to a one bedroom apartment from a 2 story house plus full attic and basement!  I’m sure that you can imagine the amount of stuff that can accumulate in 47 years worth of living.  Especially with a father who was a pack-rat in addition to buying piles of things that were a ‘great bargain’!  Mom, being a good conservationist, would like to have found a home for everything but alas, we didn’t have the time to dedicate to that.

During the downsizing process, packing and wrapping up all the little pieces, and because we didn’t have anything else on our hands, we have moved Dad out to the nursing center at the same CCRC.  That involved coordinating record transfers, arranging transportation, packing him up and saying good-bye to the staff where he has lived since December.  I’m glad to report that he is having more opportunities to engage at the new facility!  His best friend from childhood lives less than 5 minutes away and is able to visit daily!  His dementia does, however, continue to progress……

Mom got the opportunity to pick out new cabinets, flooring and counter tops for her new apartment.  I took her furniture shopping to pick out a new bed (she wants a single bed so that she can get in and out of both sides), a new dining table and chairs (the dining area is much smaller than her current dining room) and a new love seat for the living room (rather than her oversized couch which would take up too much of the room).

And we spent hours boxing-up and cleaning-out.  One evening after a very long day we decided to have a shredding frenzy.  We had stopped to buy a new shredder while we were out that day, so we got ourselves a glass of ice tea and began the task.  It was very clear within about 15 minutes that the shredder we had gotten would have to go back as it repeatedly jammed even when we were feeding it 2 sheets at a time!  Two steps back……  It felt like getting a ‘Bad ‘Un’ card after the day that we had just had!!

There have been little surprises along the way, like finding out that my demented father had gone to the bank and taken everyone, including Mom, off of the trust that he had set up just 2 years ago so that we could all handle things that needed to be handled when the time came…..  Go back 10 spaces….. If we had not been able to approach this ‘game’ with a sense of humor and some patience, we would have gone nowhere fast.

So even though we have been sent back 3 spaces, missed a turn, gotten sent to ‘jail’ and been dealt a few ‘Bad ‘Un’s, Ruby Mine is in our sights!!

Oh, and I found The Mountain Game in the attic!  It now lives at my house waiting for grandchildren to play and maybe, just maybe, teach them the patience that they will need someday to help their aging parents!

On the journey with you…….Kathy

Smooth Sailing or Perfect Storm?

I posted very recently about conversations with my mother on her thoughts of leaving the house that she has been in since I was 3; the house that my parents took the initiative to add onto about 5 years ago to allow them to live on one floor; the house with the first floor laundry, full bath and bedroom.  3 steps to get inside and you are good to go.

In the conversation that ensued (see ‘Home A-lone(ly)’ to read about the lead up), she ultimately decided that she really would rather stay in the house as long as possible.  We talked about neighbors, friends, church, support systems, services that could help her do things that she felt she could no longer do for herself, if needed, and given the whole picture, she felt fortunate to have all of those things.  We also discussed how her life had gotten somewhat small and some of the things she could do to change that a bit.  I thought we were back to smooth sailing for awhile!

Since that was about 2 weeks ago, you can imagine my reaction when I got a voicemail the other day in which she announced that she has decided to leave the house!  Back we go, into the storm……

I truly believe that part of the burden to her right now is that she continues to insist on visits to my father far more often than she can physically handle anymore.  And as the interactions with Dad are difficult at best, they are draining for her.  I’m not sure if this get-out-of-the -house idea is not, in part, a get-away-from-Dad idea.

When asked why she feels the need to leave, one of the reasons that she gives is that she can’t get up and down the basement steps very well anymore to which I say, don’t do it!  Everything that she should need can be on one floor.  That’s why they put on the addition!

She complained that the stoneware that she has for cooking and baking is too heavy anymore as is the cast iron skillet.  Again, don’t use them!  These are things that are easily replaced.

So I’m once again back to asking what is really driving her decision.  Not that we won’t help her do that if it turns out to be what she really wants.

I live about 3 hours away in another state and have told her that she would be more than welcome to move close by to us.  She could get a one level home around the block from us and my Dad can relocate to the nursing facility about 5 minutes from here.

That would allow us to help her on a more daily basis.  Help her get groceries and the visits to Dad.  Pick her up and take her to church on Sunday.  Help with the yard (though she has that where she is now).

But the move would also mean giving up a lot of the day-to-day familiar:  things like neighbors and friends; grocery stores and banks; doctors and other healthcare providers.  It would mean leaving her church.  It would mean parting with many of the familiar things that surround her in her home.

And it would mean moving Dad to a new facility:  One where his friends and former colleagues could no longer stop in for a visit; one where the neighbors could not drop in as they walk by in the neighborhood.  One where the postman who delivers mail to the house is no longer the same one that delivers mail to the facility.

So, we will talk again (my sister may join me on this one).  Talk about the realities of the various choices.  Talk about the ways that we could adapt her current situation to better suit her.  Talk about what it would mean to move to another state (the good and the not so great parts).  Talk about what is really driving her need to get away.

To be sure we will also talk with my brother.  He is the one that has the best idea on the finances and is the financial POA.  Finances have to be part of the discussion:  What can she afford to do and what can’t she afford to do?

And then we will talk with Dad so that he feels included.  We may not be able to talk in the same ways that we talk with Mom, but I think that he will follow her lead.

Whatever the outcome, there are more changes ahead.  Either we will be planning a move of some sort or gutting out and adapting the home to better suit Mom.  We will move over and over again from smooth sailing through the perfect storm and back to smooth sailing again.

And somehow, we will navigate through each transition…….

On the journey with you…….Kathy