5 Tangible Things You Can Do for a Caregiver

This time of year can be very stressful for caregivers, whether its holiday parties, expectations of gift-giving, family meals, lonliness, preparing for guests or not preparing for guests.  No matter the caregiver scenario, there are three major obstacles that have to be dealt with and that is (1) time, (2) money, and (3) resources.   These three obstacles not only create barriers for a joyous stress-free holiday but also for just plain daily living.

Caregivers are extremely limited on time due to the ongoing tasks of managing a loved ones life, including their behaviors, finances and physical ailments.  Every second of the day is planned, organized or consumed by their loved ones needs.  There is always a financial stressor involved as well, no matter what your household income consists of.  Caring for a sick and/or aging human being in this country has become one of the most expensive burdens to bear.  According to AARP, it was estimated in 2011, that US citizens spent a total on $357 billion on long term care.  However, family caregivers provided $450 billion worth of Unpaid Care.  These numbers are indicative of the cost of aging in America along with the lack of resources and finances available to afford the care needed.

As I have embarked on this role of caregiver, I have noticed that many of my friends or coworkers are at a loss on how to support me.  They’ve listened to my stories, the drama faced with Medicare and Medicaid, and endured the description of long lists of tasks that consume my day.  Many Caregiving organizations put the onus of caring for the caregiver on the caregiver.  So while I am caring for my mom, their tips include statements like,  “make sure you take care of yourself”, “seek the help and support you need.”  How noble and supportive to point out that we need to take care of ourselves (which we do, but it takes a village).

Therefore, I, along with some of my caregiver comrades decided to come up with a short tangible list of how you can support caregivers:

1.  Meals: Make a meal or arrange for a meal to be delivered to the house.  Meal-time is one of the most stressing events in our house.  After working all day, managing my mom’s appointments, walking the dogs and touching base with my husband, making a meal is the last thing I truly want to do.  If our loved one’s have dementia, food is one of the hardest things to figure out.  People suffering with dementia lose their taste buds, their desire for eating, or over-eat certain food groups, like sweets.   Find out what your caregiver friend or family member can eat and arrange for that meal to be delivered to the house.

2.  Respite/Time: Time is invaluable to a caregiver.  Offer your time, whether through yourself or through someone you know, or a caregiver agency.   Offer to spend an hour, or two or even a night, depending on the situation, in order to give that caregiver a break.  Respite is expensive. Hiring a caregiver can be $20-$25 an hour.  Remember, money is the biggest barrier to caregivers seeking respite.  If you have hotel points, offer those points for a night away.  Whatever you have and you can spare, donate to the caregiver.  Visit your caregiver friend’s house several times to get to know their loved one.  Learn the routines, the schedules, and the person so you are prepared to take on a couple hours of caregiving.  If you arrange for another caregiver to support your friend, plan an outing like movies and dinner.  But you be the proactive partner in this one and not add any additional tasks to the caregiver.

Offer to come and clean or organize their home, while the caregiver is attending to other responsibilities.  I’ve noticed how quickly my house can become disorganized with my mom having Alzheimers.  I call it the “Where’s Waldo Phenomenon.”   My mom will put food under her bathroom sink, socks in the freezer, dog food with the human food and so on.  It is a daily search, find and reorganize.  With all my moms personal affairs, I have over 15 folders of documentation to keep straight, from medical records to Medicaid, Medicare and Social Security records.  Her records are more organized than mine.  Assisting your caregiver friend in organizing their lives will alleviate time spent in a search hunt later.

3.  Find the Resources: What can I say about resources, besides the lack of them.  However, they are there, if you put on your “inspector gadget” hat.  I cannot count the hours, days and months it has taken our family to find the resources we need to manage caregiving.  If you know google.com, assist the caregiver in finding free resources, grant funds for respite, or actual organizations who can help.  Filter those resources as well. Make a call to an organization and find out what they offer.  I called over 30 local and national organizations in my first month of caregiving and only one could offer me support.  Don’t send the caregiver links to research or tips on caregiving.  We are caregivers and live this everyday. The latest funded Alzheimers research is not going to help me survive day-in and day-out of caregiving.  (Tip: if you find a resource that offers grant funds, offer to fill out the application or contact the organization with the caregivers situation.  Wherever you can take a step away from us, please do.)

4.  Communicate: I cannot count on my hand how many people, friends or family members who disappeared when I took in my mother.  When I couldn’t go out or my every answer was “I can’t”, my world became so much smaller and any support I thought I had vanished.  Send a text or make a call at least weekly to let the caregiver know that you are thinking of them, love them and how much they are appreciated.  Send cards, emails of encouragment and let that caregiver know you are there, especially on special occasions, like birthdays. Cards and flowers are even more appreciated by caregivers.  Be present, be kind and be human.

5. Pay a Bill/Give Money: I don’t know how to emphasize this enough. You will be consumed by financial hardship beyond your control when you become a caregiver.  Its just the nature of the beast.  You can save your entire life, take out long-term care, plan as much as you like, but caring for a sick, disabled or elderly loved one is beyond expensive.  Instead of participating in an Alzheimers Association walk, give that money you would have raised to the caregiver.  Instead of searching for organizations to donate to, write a check to a caregiver.  Call a utility company and pay a caregiver’s bill that month. Give a gas card or grocery store gift card. If you own a business, offer free or reduced cost services, like car maintenance or house repairs.  I have an amazing health coach who has volunteered her time with me along with a fitness instructor who created a work-out group around my schedule, that fits my budget.  These are professionals apart of a larger organization that have become apart of my caregiving community.  Remember, many caregivers have had to quit their jobs, retire early or pull from their pensions to care for a loved one.  Their present and their future is in jeopardy.   Whatever you have to offer is a blessing, especially to relieve the financial burden.

As a final note, a caregiver is a caregiver, whether their loved one is in the home or placed in a nursing facility.  The responsibilities may be different, but the emotional, physical and financial drain is the same.  Whether you become an advocate for them, chip-in on a bill, plan an outing or visit their loved one in a nursing home, your act of kindness and support will impact a caregiver immensely.

A big shout out to my fellow caregiver, Susan Ellis for contributing ideas to this blog and a big thank you to Anissa Amason and Sheena Lance-Nold from Lifetime Fitness Johns Creek for inspiring me to write this.  Your generosity and sense of community is beautiful!

                    “The greatness of community is most accurately measured by the compassionate actions of its members, a heart of grace and a soul generated by love.”

-Coretta Scott King

 

 

First blog post

Well my friends, this is my very first blog post.  I am both excited and nervous at the same time to share my story with you.  Representing the caregiver community is a big undertaking and not to be taken lightly.  With all that we endure and all that we experience, my words and thoughts must lend itself to respect and true understanding.  I have read  an over-abundance of caregiver tips, resources, and  fact sheets over the last 20 months that have either angered me or made me bust out laughing hysterically. The lack of the caregiver experience is evident in these resources.   I love my friends and family, but if they send me one more fact, statistic or caregiver tip that was written by either an academic institution or some funded research institution, I might lose my cool.   If they are interested in facts, they can ask me, I am the statistic. 🙂

My desire to blog on this experience  is to convey the REAL caregiver journey.  This journey is every day, 24 hours a day, 12 months a year.  There is no break, no respite, unless you create it.   The journey I am describing lacks community support, drains your finances, physically beats you down and emotionally empties you from the core of your being.  While I believe in a positive and healthy approach to caregiving, I know the raw experience and refuse to sugar coat the realities of this walk.

My caregiver journey really began when I was a child.  As the first born into the typical dysfunctional family, my role quickly developed into caretaker, mediator, counselor and protector.  As I moved into adulthood, my role became provider, especially for my mother, who lacked a higher education, was low income her entire adult life and could not make sound decisions for her life.  I always say that I did not want this job, but sometimes life dictates circumstances beyond our control.  I could have walked away from this situation very early on in life and may not be where I am today.  However, God developed my character and filled my heart with compassion, empathy and a desire to serve others.  I will never say I had a choice to take care of my family, to me, that is what love is.

Now at 44 years of age, I developed a new love, a love for myself.  Did I have this prior to picking my mom up at the homeless shelter and becoming a fulltime caregiver of someone with Alzheimer’s?  Probably, but I did not consciously take action in my life to self-preserve.  I really should be thanking my mother.  The last 20 months has saved my life. This time has given me new profound meaning and purpose and has provided a self-awareness that I do not think I could have gained, if I had not stumbled down this path.

I am hoping to adequately describe this journey, as it can be horrific, heart-wrenching and devastating to the family’s undertaking the prime responsibility of caring for a loved one.  At the same time, I want to describe the kindness I experienced along the way.  In the face of continous closed doors, denials, appeals,lack of empathy and just plain lack of services, my family crossed paths with angels.  These angels assisted us along the way and to this day, may never know the depths of their impact on our lives.

In future blogs, I will also be discussing the health and wellness aspects of caregivers.  This was and is one of the biggest challenges I have encountered.  You become invisible as a caregiver and before you know it, you have not been to a doctor in two years, you don’t remember what a dentist does and your workout clothes have become your pajama’s.  This is a very scary situation for caregivers and  I will be sharing my on-going successes and challenges with you.

Thank you for reading or skimming my very first blog post.  I hope you will come back and visit me and I hope that I will make the caregiver community proud in being the voice to the largest ignored vulnerable population in the world.  Feel free to leave comments or email me.  I want to hear about your journey.  Lets build this community together!

First blog post

Well my friends, this is my very first blog post.  I am both excited and nervous at the same time to share my story with you.  Representing the caregiver community is a big undertaking and not to be taken lightly.  With all that we endure and all that we experience, my words and thoughts must lend itself to respect and true understanding.  I have read  an over-abundance of caregiver tips, resources, and  fact sheets over the last 20 months that have either angered me or made me bust out laughing hysterically. The lack of the caregiver experience is evident in these resources.   I love my friends and family, but if they send me one more fact, statistic or caregiver tip that was written by either an academic institution or some funded research institution, I might lose my cool.   If they are interested in facts, they can ask me, I am the statistic. 🙂

My desire to blog on this experience  is to convey the REAL caregiver journey.  This journey is every day, 24 hours a day, 12 months a year.  There is no break, no respite, unless you create it.   The journey I am describing lacks community support, drains your finances, physically beats you down and emotionally empties you from the core of your being.  While I believe in a positive and healthy approach to caregiving, I know the raw experience and refuse to sugar coat the realities of this walk.

My caregiver journey really began when I was a child.  As the first born into the typical dysfunctional family, my role quickly developed into caretaker, mediator, counselor and protector.  As I moved into adulthood, my role became provider, especially for my mother, who lacked a higher education, was low income her entire adult life and could not make sound decisions for her life.  I always say that I did not want this job, but sometimes life dictates circumstances beyond our control.  I could have walked away from this situation very early on in life and may not be where I am today.  However, God developed my character and filled my heart with compassion, empathy and a desire to serve others.  I will never say I had a choice to take care of my family, to me, that is what love is.

Now at 44 years of age, I developed a new love, a love for myself.  Did I have this prior to picking my mom up at the homeless shelter and becoming a fulltime caregiver of someone with Alzheimer’s?  Probably, but I did not consciously take action in my life to self-preserve.  I really should be thanking my mother.  The last 20 months has saved my life. This time has given me new profound meaning and purpose and has provided a self-awareness that I do not think I could have gained, if I had not stumbled down this path.

I am hoping to adequately describe this journey, as it can be horrific, heart-wrenching and devastating to the family’s undertaking the prime responsibility of caring for a loved one.  At the same time, I want to describe the kindness I experienced along the way.  In the face of continous closed doors, denials, appeals,lack of empathy and just plain lack of services, my family crossed paths with angels.  These angels assisted us along the way and to this day, may never know the depths of their impact on our lives.

In future blogs, I will also be discussing the health and wellness aspects of caregivers.  This was and is one of the biggest challenges I have encountered.  You become invisible as a caregiver and before you know it, you have not been to a doctor in two years, you don’t remember what a dentist does and your workout clothes have become your pajama’s.  This is a very scary situation for caregivers and  I will be sharing my on-going successes and challenges with you.

Thank you for reading or skimming my very first blog post.  I hope you will come back and visit me and I hope that I will make the caregiver community proud in being the voice to the largest ignored vulnerable population in the world.  Feel free to leave comments or email me.  I want to hear about your journey.  Lets build this community together!