Tag Archives: caregivers

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

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Are You Suffering from Compassion Fatigue?

Worn out by Compassion Fatigue?

Worn out by Compassion Fatigue?

Caring for a child, a disabled sibling, an ailing spouse or an elderly parent can take a huge emotional toll on the caregiver.  Caregiving is an act of compassion that can lead one to an unsustainable level of selflessness; and in this selflessness, cause damaging, long-term effects on the caregiver.  Whether you believe asking for help is a sign of weakness or have convinced yourself that you are the only one capable of adequately providing the level of care you perceive is needed, you unwittingly set yourself up for experiencing the exhaustion, stress, frustration and isolation that it can create.

In medical circles, the ultimate fatigue and burnout that this situation can create is referred to as ‘Compassion Fatigue’.  This develops out of the demanding nature of showing ongoing compassion for somebody whose circumstances are likely not going to improve.  The caregiver may go through the motions of continuing to care for the loved one but, over time, the compassion diminishes.

In the worst case scenario, this can lead to neglect and/or abuse of the loved one requiring the care!

Some of the warning signs that you may be suffering from compassion fatigue are:  Abusing drugs, alcohol or food; anger; blaming; depression; hopelessness; emotional and/or physical exhaustion; GI complaints; frequent headaches; sleep disturbance; diminished sense of personal accomplishment; increase irritability and; less ability to feel joy.

Caregivers need, and deserve, a healthy personal life.  When a caregiver makes the effort to keep a balance between their empathy and their objectivity, they are able to realize the need for and to create a healthier self-care plan.

Set aside some time to nurture yourself.  When the caregiver is rested, energized and in a positive frame of mine, the caregiving load becomes a bit lighter.  Taking this time for yourself may feel selfish and unnatural at first, but commit to doing at least one thing each day that is focused on your enjoyment and benefits your sense of well-being.

Identify the things about caregiving that cause you the most stress.  Look for ways to eliminate them as much as possible or make sure that you create a routine that allows you to balance those activities with things that you may enjoy or at least find less stressful.  Don’t line up all of the stressful activities in a row; break them up and spread them out!

When you are feeling overwhelmed and are juggling too many balls in the air, know your limits.  That’s the time to take a moment to prioritize those ‘to-do’ items and determine what really must be done and what can wait awhile or be eliminated altogether.  Taking these few moments to do this may give you back a small feeling of control in the situation and help to eliminate some of the frustration.

Validate your commitment to providing good care to your loved one by reaching out for some help!  Preventing ‘compassion fatigue’ is going to allow you to provide the good care that you want to offer.  Far from being a weakness, asking for the help you require is a sign of strength in knowing what your own needs are.

So, do more than just survive the emotional grinder of caregiving.  Prevent compassion fatigue by keeping your own needs as part of the caregiver equation.  Both you and your loved one will reap the benefits!

On the journey with you…….Kathy

We’ve Got Important Things to Discuss

Let's Talk

Let’s Talk

As you were raising your children, there were conversations that you knew you needed to have with them at various times through the years.  When the kids were really young, they were usually instructional conversations about how to act and what to do but as the kids grew, the conversations became a little more complicated.

The ‘Sex Talk’ is a conversation that many parents dread.  Some feel awkward talking to their kids about this topic; agonizing over what to tell, how much to say and how detailed to become.  Kids sometimes dread these conversations as much as the parents do!  But it really is a conversation that can’t be ignored.  To refuse to confront the fact that your children are growing up is a mistake you cannot afford to make as a parent.

There is another conversation I feel has every bit as big of an impact on how things may go in your future.

That conversation is the one that needs to happen between adult children and their aging parents.  The conversation about what the parent’s plans and wishes are for the years when the aging parent may need help from the kids.  This is a talk that few really to want to have; but, I truly believe that you are in denial if you don’t face the fact that those times eventually come.  The one certainty in life is that, at some point, it ends.

I live in Pennsylvania Dutch country and one thing that people do not want to talk about here, is their money.  Many people are very private about what they have and don’t want to go around sharing that with others.

And that’s fine.  You don’t have to pass out a spread sheet to all of your friends and neighbors, but you might want to consider sharing some things with your kids.  Aging parents who expect, or hope, that their kids will help them to manage when they need help, need to share information about their finances and consider setting up some mechanism for access.  It does not mean you need to sign your money over, but if, at some point, decisions have to be made on your behalf, it is best for your family to be able to make an informed decision based on accurate information.

You should consult with an Elder Law Attorney about how to set things up to protect yourself while providing some path for your kids to help you should the need arise.

If you have a child that you trust, set them up to handle your affairs; if you don’t have a child or do not trust them to act in your best interests, find somebody else to do this for you (an attorney can help with that as well).

Once these decisions have been made and plans put into place, you must then share it with those who need to know!

Don’t hide information that may be important.  Organize the finances and share the location of the information with your appointed trustee.  Give them a general idea of the scope of assets, if you feel that you can, so that they will be able to make good judgments about what you may and may not be able to afford at any given time in the future.

My father was well into early dementia before the finances were handed off to my brother (who helps my mother) leaving my brother in a position where he was constantly discovering new things!  My father had long ago lost the capacity to handle things with the accuracy that they required even neglecting to begin taking mandatory distributions from some of his retirement funds which now may require that they pay a penalty.

If the conversations had been welcomed and initiated by my father (my mother would not have hesitated) years before, many hours spent addressing complications could have been avoided.

Parents frequently say that they do not want to become a burden on their children.  But by not having these conversations, that is often what happens in the end.  The time and frustration that the caregivers exert figuring out and then straightening out the situation when it becomes necessary, becomes a burden to them.

So, if you are the aging parent, make this conversation a priority; it is your responsibility.

And if you are the adult child, share this article with your parent and ask for that conversation.  Express to your parent that having this conversation would help you minimize the stress and strain, of what might already become sad and stressful time, in the future.

Communicate.  Work with an Elder Law Attorney to get the proper framework for your family situation set up.

Then, it can be filed away for the day when you might need it.

On the journey with you…….Kathy

Caregiver Guilt: Your Inner Judge and Jury

Kathy Eynon, Parent Care Alliance

Feeling Guilty?

I doubt that there are many things that caregivers do better than guilt.  Whether you are caring for an elderly parent, your children or another loved one, you likely have experienced this to a greater or lesser degree at some point.

Guilt is the gift that keeps on giving according to humorist Erma Bombeck.  There is no doubt that guilt can be a very powerful driver in our lives.

And as caregivers, aren’t there just a vast number of things that we can use to feed that guilt!!

You may feel guilty when you lose your patience with your elderly mother or perhaps you have been complaining about not having enough sleep or time for yourself.  You feel guilty when Dad asks when you are coming again to see him or calls you for the 4th time in an hour and you don’t pick up the phone.  Maybe you didn’t get a particular task done when you hoped you would or let something fall between the cracks.

Most humans, especially caregivers, are extremely good at taking on all of the expectations of not just our cultures and possibly our religions, but also our families as well!  Add to that jury the toughest critic of all, you, and you have quite a crowd mulling around in your head!  And they become quite good at sharing what they thing about something that you have done or have failed to do.

Of course not all guilt is bad.  Good guilt causes us to examine ourselves and make a change in our behavior if it is needed.  This might be the guilt you experience when you lose your patience with a loved one who has dementia and you have responded negatively to something that they can no longer control.  At times like this, guilt may be the poke you need to, perhaps, try a little harder next time.

But bad guilt doesn’t usually have a constructive side.  This is the guilt you feel over a situation that you cannot change or control; or, over something that is actually positive for you the caregiver.  Perhaps your mother must go into rehab after she has fallen and broken a hip.  She doesn’t like it there and repeatedly makes you aware of that.  Can you feel the guilt building?

Or, maybe you are finally making arrangements to go away for a much needed, and deserved, vacation and your father is fighting you about bringing in some respite care to take over while you are gone.  Is the pit in your stomach tightening yet?

And some caregivers even feel the need to experience guilt because they are experiencing happiness!  Did you ever take a step away from the caregiving to go out for a nice dinner and find yourself feeling guilty about enjoying yourself?  Then you know about Happiness Guilt.

Yes, guilt loves high standards.  But guess what, life happens.  Nobody is perfect.  And no matter how much you love the person you are caring for you are not going to be able to prevent every fall or illness.  A bill might get missed and your temper may spill over at times.  Don’t let the small list of things that slip by get overshadowed in your mind by the long list of things that don’t.  Being a good caregiver 80-90% of the time may be a more realistic expectation!

So, challenge your inner jury.  Push back with a good defense and know that you are doing the best that you can.

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.

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