Care Partners Resource

Culture of Caregiving

Does culture affect your role as a caregiver? Is there such a thing as a “Culture of Caregiving?” For the past two years working with Colorado Latino Age Wave I have been interviewing Latino caregivers throughout Metro Denver and identifying how culture affects their ability to care for their aging loved ones. I’ve been comparing my recent work, with my work over the past 6 years, where I have had the opportunity to meet hundreds of caregivers from all cultures all over the country. What I have noticed is there are commonalities that are undeniable. How could so many different cultures have so much in common? Is it possible that caregivers have a culture all their own?

According to Merriam-Webster. com – Culture is:

: the beliefs, customs, arts, etc., of a particular society, group, place, or time

: a way of thinking, behaving, or working that exists in a place or organization (such as a business)

Based on this definition it appears there is indeed a “Culture of Caregiving.” A unique belief system that takes over when you step into the role of caring for a loved one. It seems to happen without the awareness of the caregiver and unfortunately is not usually in their best interest.

Although an individual’s culture can affect decisions about where and how an elder loved one is cared for, it is the “Culture of Caregiving” that dictates the thinking, behavior, values and norms that govern the self-care of the caregiver. Studies support what I have witnessed; caregivers from all walks of life and cultures strongly think that they alone can provide the appropriate quality of care for their elder. This thinking creates a belief system that elevates the loved ones care and needs above those of the caregiver. For this reason the value of the caregivers self-care and health becomes second to those of their loved one.

Stepping into the role of a caregiver can lead to isolation, loneliness and depression. According to SageMinder.com when polled 40 to 70% of caregivers report symptoms of clinical depression.

The challenge with caregivers adopting this “Culture of Caregiving” is that caring for an elder is a marathon not a sprint which requires the caregiver to have mental and physical stamina. Once the loved ones needs are put ahead of the caregiver you see the health of the caregiver suffer. This is also complicated by financial challenges which can include the caregivers loss of work and/or medical coverage.

Combine this “Culture of Caregiving” with the caregivers own cultural beliefs and it is easy to see why so many caregivers struggle. In the Latino culture aging in community is the norm. Often the person caring for the elder has little say in the decision to become the caregiver. It is a role of honor and respect. This makes it difficult to put your own health and well-being above that of the elder.

Another challenge with the “Culture of Caregiving” is the name itself. When you are caring for a loved one you become their caregiver. This title becomes your identity rather than the role that you are performing. When your identity is tied to the care and health of your loved one, asking for help can feel like personal failure.

The belief of caregivers that they are the only one who can assure the well-being of their loved one is not far from true. Where they miss the mark is not understanding how important their own health is to insure their ability to make the right decisions for their loved one and endure the sometimes years that may be needed to care for the elder.

Some organizations have begun to understand the importance of educating caregivers to prioritize self-care. In 2009 after caring for my mother for 8 years I created my company CarePartnersResource.com to work with caregivers in understanding the challenges of caring for a loved one and help them identify their own self-care needs. In this work I offer therapeutic writing workshops and speak to caregivers and organizations to increase awareness about the importance of managing self-care while caring for a loved one. With the right education the “Culture of Caregiving” can be turned into a positive.

Lori Ramos Lemasters

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When you’ve said YES to Caregiving: then reality sets in

Most people have no idea what comes with saying “YES” to caring for a loved one. What do you do once you have said yes and then realize it is more than you bargained for?  Maybe it is an immediate   “oh no this is more than I can handle,” maybe after a short while you realize you aren’t cut out for this or perhaps you have been caring for your loved one for a while and things have changed so you to no longer feel able to meet the needs of your loved one or yourself. There are many reasons you could feel in over head and with that decision comes: guilt, a sense of failure, betrayal or fear of judgment.

Is it fair to judge yourself for being honest? Is it fair for others to judge you? The answer to both is NO and yet we cannot help but do it. I am sure many of us have had feelings that this is just too much but feel there is no way out. We continue to go on as we have for many reasons, the emotions mentioned above or money or you simply don’t know how to make a change.

A friend recently told me something that resonated in many ways. She asked “how often have you made a commitment and for whatever reason you realize you can no longer honor your decision?” She followed up with this very wise advice: Ask yourself are you now continuing to honor the promise to your loved one (or the person to whom you have made the commitment) or are you just committed to the commitment? Is this truly doing the honorable thing or are you becoming a martyr?

As a caregiver I was faced with this decision many times. I was fortunate to have finances and a supportive family that allowed me to not only do what was best for our mom but also care for myself in the process. Our care plan changed many times over the 8 years.

Many caregivers are not met with support when they voice their challenges. There is often judgment and resistance from family members and friends. Some caregivers have no one to voice help them during these challenging times. Even with support there often is self criticism and doubt.

How can you find solutions to alter your care plan that also honors the commitment and your needs? Here are some steps to help begin the process:

  • Identify the challenge(s). Be specific, can you see how each of these may have different solutions?

–          I am exhausted

–          I am depressed

–          I feel isolated and alone

  • Ways to identify the challenge. First start by making a list and then try to identify what is causing the problem.  Often the original challenge is not actually the problem.

–          You may think the challenge is you have lost your patience. But you discover the problem is you are exhausted. Once you think about it you realize the reason is not due to lack of sleep but due to depression.

  • Work on one challenge at a time
  • Start your search to solve the problem: Seek help from a professional

–          A good place to begin is mentioning the situation with your loved ones physician

–          Seek advice from other caregivers. There are many support groups in most areas or on-line

–          For many common caregiving challenges you can get solutions by using an organization like Family Caregiving 101, National Stroke Association or The Area Agency on Aging, CarePartnersResource.com, just to name a few. Most of these organizations have on line information and someone you can speak with.

–          If you are stuck try Google or Bing they can be great resources. Just type in your problem

It may be that even after this research you still feel unable to continue on in the role as caregiver. There are resources and funding to help in finding alternative care in most cases. Ask about alternatives when you are researching assistance.

Finally no matter what you decide is the answer be gentle with yourself. Caregiving is not easy and not for everyone.  Taking good care of yourself is the best way to care for your loved one!

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Journaling for a better New Year

It is a New Year, time to review the past and make resolutions to improve your life for the year ahead. It occurred to me how often I would make and break resolutions year after year. As a caregiver it’s hard to set goals and promise resolutions when so much of your life is out of your control. Staying on task one day at a time is a challenge: how then can I possibly make a commitment to change for an entire year?

Looking back over my annual “It’s A New Year” Journals from the eight years I cared for my Mother there was a consistent theme:

  • This year I will take more time for myself
  • This year I will be more patient, tolerant and less critical of others
  • I will leave guilt in the year that has just past
  • Etc., etc., etc!!!

Skimming a few pages forward it becomes obvious very quickly that it did not take long for the stress of care giving to take hold and my resolutions to go right out the window. One journal entry spoke to my frustration as I watch everyone around me head into the New Year with such hope and excitement. All I could feel was dread, another year of doctor and therapy appointments and feelings of helplessness as I watched my Mom continue to be stuck in her world of post stroke challenges.  But then I read a book by Kay Adams called Journal to the Self and began practicing the techniques.

Soon my journal entries show hope and I begin to turn a corner.  I learned to use my journal to manage my feelings. Gradually I began use these pages as not only a safe place to express my feelings, but a way to manage daily tasks, keep track of my resolutions and check on my progress. Eventually I took back control of my life.  I found that by venting my frustrations and disappointments in my journal I was able to let go of them in a more constructive manner. This led to more patience, tolerance and less judgment of others. Because I wrote through these emotions I began to realize that care giving was what I was doing not who I was and this shift in thinking allowed me to be less than perfect. Soon the guilt began to lessen and I realized that all I could do was my best and if that was not enough then tomorrow was another day. By using my journal to manage tasks I became more organized and found time for self-care. All of these changes made me happier and a better caregiver.

I was so grateful for the improvement in my life that I became a Certified Instructor of Journal to the Self® and offer the course on my website www.carepartnersresource.com and in person. I hope to improve the lives of care givers one Journal at a time.

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Care partners tour of duty

Becoming a care partner is similar to enlisting in the military. Both are a call to duty and similarly neither enlistee has any idea what their enlistment will require of them. However there are some striking differences as well. One clear difference is that before agreeing to enlist in military service a person usually takes time to weigh the pros and cons. The decision to enlist as a care partner or caregiver is often done with no time for thought. Other differences are;

  • no defined term for your tour of duty
  • you are not assigned to your position based on your occupational specialty
  •  there is no plan in place to move up the ranks
  •  and the biggest difference is usually this duty comes with no financial or medical benefits

My tour began with a phone call late one evening in July, 2001.  I answered the phone and heard my oldest brother saying words that I could not comprehend, “Mom is in the hospital” “She had a bad stroke.” The rest of the night was a blur, calls to my son telling him the news, to the airlines to catch a flight to LA, packing and then heading to the airport. All I knew was my mom’s brain was under attack and she needed me.

In my mind the decision to enlist had been made when I answered the phone. It was my duty to join the ranks and make sure Mom got back on her feet.  I don’t recall knowing who the enemy was: What is a stroke? How long my tour of duty would last: What is the recovery period?  I had no idea what a care partner or care giver was and yet unknowingly I had already enlisted to become one.

Once I arrived at the hospital basic training began immediately. The meetings with family, the doctors, nurses, therapists and social workers all began. It became clear to me that I needed to advance up the ranks quickly and take on a more active leadership role.  Days later when the bleeding stopped and mom was stabilized the true test of my enlistment became clear. Her life was never going to be the same and neither would mine.

The early stages of care partnering are foggy. I questioned what I had gotten myself into but it was too late to turn back now. I wonder how many young men and women who take the oath to serve our country feel the same overwhelming fear. My enlistment came with duties that I was not sure I could carry out as well as an assignment away from my family and home.

As time went on we celebrated battles that were won and  found new determination to forge ahead when any ground was lost. Mom and I  continued this strategy until my enlistment ended one day short of eight years when mom decided it was time to surrender and she quietly took her final breath while I sat by her side.

I realize that what I saw and dealt with during my tour of duty is different from what our military personnel must endure and in no way compares to what they must see on a battle field. But I too am left with the wounds from combat against the effects of a “brain attack” that took my mom’s independence.  Most family care partners and caregivers like me are left with both mental and physical scares from our time of service.

I have begun my journey back into the “civilian population” and I am reaching out to other care partners and care givers through my website www.carepartnersresouce.com.  My hope is to heal my battle scares by teaching others the successful strategies I learned during my tour of duty. 

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Forgive your trespasses: You are a care partner not a Saint

As a care partner it is easy to get wrapped up in the idea that you have to be perfect, a saint if you will. We are trying to be all things to all people and lest not forget those around us reminding us we are doing something most people could not or would not ever do. For this reason it is easy to get caught up in the idea that we should not experience human frustrations or emotions.

There can become a point when those frustrations can be taken too far and in those cases I urge a caregiver to reach out and seek help. This article is about trespasses that cause mostly harm to the caregiver not our loved one. Moments of shortness of patience, a harsh word or even a selfish thought that we carry deep in our soul reminding us we are not perfect.

I began my journey for sainthood long before I became a care partner. From an early age it was important for me to be the perfect daughter, the best wife and of course the most patient and loving mom.  So when my mother survived her stroke and I made the decision to become her live in caregiver I had the same expectation, PERFECTION.

One might think that it would be logical to allow myself a little slack since my career had been in the mortgage industry not the medical profession and mother needed constant care because of the effects from her stroke or the fact that I had been out of my parent’s home for 26 years and moving home was a huge adjustment. But care giving leaves no time for slack, too much to learn, too much to do and too many opportunities to be less than perfect.

I care gave and care partnered my mother for 8 years and during that time and the four months since her Lori and Momdeath I am bothered by my own trespasses. The times my patience ran out and I spoke to her in a less than loving voice or when I would get busy doing things around the house and forget to make sure she was fed on time. My biggest regrets are the times I would cut her off when she was trying to tell me something. My mom was unable to speak in sentences after her stroke so we spent a lot of time figuring out what she was trying to say. She said “do do do” thinking she was saying words. During the first few months following her stroke we would spend up to 45 minutes playing 500 questions  only to discover she wanted a piece of lint picked up off the floor.  After a while it all became too much and I began cutting her short.  I would say “okay Mom is there pain, are you hungry?  Okay forget it, we’ll figure it out later, here just watch T.V.”  I think of how difficult it must have been for her going from the matriarch of our family where everything she said was heard with respect to being cut short when she was just trying to make small talk. I feel angry at myself for my lack of patience. I wish that I had been able to settle into my role as a care partner as gracefully as mom was able to adjust to her role as a stroke survivor.

My trespasses as a caregiver were secrets I had carried silently deep inside fearing judgment.  I am telling my secrets in the hope that other care partners and caregivers will see that they are not alone. We are humans not saints and as such we are subject to moments of stress and feelings of being overwhelmed.  Acknowledge your limits, ask for help and take a moment to breath. You will be a better care partner by loving yourself without judgment, guilt benefits no one so forgive your trespasses and move forward.

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