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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

 

 

The Caregiver Rollercoaster

This past month has been a truly busy and life-altering time with my mom getting ill.  The doctor appointments, prescriptions, grocery store runs, late night wake-ups and coordination of all her services, had me spiraling like the “SooperDooperLooper.”  Yes, for those of you who know what this is (an old-school rollercoaster at Hershey Park), you can confirm the feeling of winding through the tracks at warp speed, flipping upside down with little warning and dropping down hills at a rate that makes your stomach wish you didn’t have that Hershey candy bar.

What I’ve come to know, by experience only, is that caregiving is cyclical and mimics a rollercoaster.  There are days that are expected, like the climb up the rickety tracks, but then before you can even prepare for it, the doors of chaos are opened with sudden flips and nauseating turns.  When the caregiver goes through that door, typically, no one goes with her/him.  Everyone around the caregiver maintain the same expectations with little to no understanding of the mental strength that is required.

With this last episode with my mom, there were times I felt that a huge black hole had opened up and was trying to swallow me.  With all the responsibilities of trying to work, maintain a marriage, pay bills, make sure there is food in the refrigerator,  taking care of myself seemed unrealistic.  There were times I did not know whether to laugh out loud hysterically or just curl up like a baby and cry…in public.

There are some theories around the stages of caregiving that can be found here: http://bridgessc.org/caregiving/stages-of-caregiving/.  However, I would argue that there is no preparing for a caregiver rollercoaster.  There are many stages and we move from stage to stage with no set time limits.  We can plan and plan for an aging or special needs loved one, but because our systems are fragile and our society has become so individualized, the lack of support tears our plans apart and caregivers are left to strategize a new plan instantly, on the spot.   It wasn’t until I recently met with my Nutrition Coach at Lifetime Fitness that I was able to sharpen my vision, stand straight up and bring myself back to a sense of levelness.  She walked me through my primary values, my challenges and my blessings, allowing me to regain the stability I needed at that moment.

Here are my lessons after this last rollercoaster ride:

  1. Acceptance: I am a caregiver and this is not going to be easy.  A lot of individuals cannot and will not relate to my situation, leaving this to a solo ride.  In moments of sanity, take deep breaths and recover, as we do in physical training and remember the blessings.
  2. Strengths: I have them and I certainly pulled on them.  I had forgotten them momentarily, but they did not leave me and in fact, resurfaced with some supports. Caregivers have strengths that cannot be compared to any other. Whether you are caring for your loved one with Alzheimer’s, or for a child with Down Syndrome, you have a specialized skill set and are a fortress of strength that cannot be imitated or duplicated. You can only obtain this through experience!
  3. Supports: My support during this ride was not a typical person in my life that I lean on. That support, in a moment of time, was my coach.  I went to her for a nutritional session and walked away with my feet balanced and my vision crisp.  I will never underestimate the opportunity for support.  It is there all around me and I appreciate it in all forms.
  4. Special: I am not alone in this journey and know many amazing caregivers who bring so much love and care to this journey.  When I examine the world and the selfish acts of others, caregivers are special.  They go against the grain and become exactly what the world needs, awakened human beings, sacrificing their lives one for another.

What has your rollercoaster been like?  What were your strengths that pulled you through and the unexpected supports that arose out of your ride?

“Life is like a roller coaster with is ups and downs. What matters is whether you are keeping your eyes open or closed during the ride and who is next to you.”

– Ana Ortega

 

How to be Wonder Woman in the Face of Adversity

Last night my family and I celebrated my mothers 67th. birthday.   In keeping with the theme of resilience and strength, we took her to see “Wonder Woman.”

Wonder Woman is a leader in the fight of justice.  She searches for peace, uses her lasso of truth as a weapon and deflects evil through the use of those unbreakable bracelets!  She defends and unites humanity and resists the intended destruction of evil.  I truly believe that each caregiver is a “Wonder Woman.”

Many times we face adversity in our lives, whether its due to our own choices, a failed system, dysfunctional family units or to a random crisis in our lives.  The reason for the adversity is important, but not as imperative as your reaction to it.  There is a turning point that can be made, a conscious decision to change the course and outcome of the event.

However, as an individual, you must wrap yourself in the “lasso of truth” and be honest with who you are and where you would like to go.  Your trauma and crisis does not define you and it is up to you to resist the negative impact In your life!  But how does one tap into “Wonder Woman Powers?” Below are a of couple steps below to begin to explore your own personal potential.

  1. Who are you?  List out all the characteristics of yourself, including strengths and weaknesses. Be honest and wear that lasso of truth.  List them out into two separate columns.  Both strengths and weaknesses are important as they can be leveraged to calibolt you into your dreams.
  2. What do you want? What would make you whole or complete?  Write a list of all your desires in every area of your life, including, (a) career, (b) health and wellness, (c) love and romance, (d) travel and adventure, (e) wealth and prosperity, (f) family and community, and (g) hobbies and creativity.
  3. Where are your gaps?  Now that you have your desires written, rate yourself in that area from 1-10.  #1 being the lowest satisfaction rating and #10 being the highest satisfaction rating.  What do you notice about your ratings in the different areas of your life? Is it a surprise or does it resonate with you? What are the reasons for the lower ratings?
  4. What area of your life are you ready to tackle?  Looking at your ratings and assessing your own strengths and challenges, select an area of focus.  This could be your health, career or finances. You must choose.  Remember, nothing is impossible. Impossibility resides in your mind and you must evict it before you can even think about the steps to put in place and develop that action plan.
  5. Why do you have a box?   We all live in a box, a box that society, family and even ourselves have built around us.  Once in awhile, we will peer through a window, a small opening in that stuffy place and wonder what it must be like to breath, to truly live.  It is us standing in the way of ourselves.  One must get out of the way of stale thinking, remove the blinders of tunnel vision and open the heart to the potential that lies within you.  We must destroy the box all together.  Wonder Woman’s personal “amazon trainer” pushed her for more. She never allowed her to get comfortable or let her guard down.  To be victorious, she had to give more-fight harder!
  6. What are your resources? Friends, family, and even a computer can be some amazing resources to educate and expand your mind.  If your friends and family live within your box or put that box around you, then they are not a resource. My favorite resource is my computer. I’ve googled my way to learn about different areas of improving my life, from taking coaching courses to finding the most reasonable ways to vacation.  Assess your resources and they must be different but supportive, accessible but uncomfortable!

I will follow up on with this blog piece on the personal steps my family and I have taken to change the course and direction of our lives and break down those boxes that surrounded us.   Know that “Wonder Woman” lives within you and there are no limits to your super-powers except you!  Love yourself enough to invest in you!

“If you do what you’ve always done, you will get what you have always gotten!”

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Caregiver Blessings

Being a caregiver is one of the most grueling jobs on earth. I was cleaning out my voicemails from last week and realized that I had a total of 32 calls in one week in relation to my mother and her care. Whether it be case managers, pharmacies, doctors offices, advocacy groups, adult day care, Medicaid officers, Medicare and social security, it’s about her wellbeing.

Taking care of a sick, disabled or elderly loved one is truly brutal in this country. They don’t make it easy and this is not for the faint in heart. But I count my blessings everyday and here they are:

1. God: my faith and trust lies in Him!

2. Husband: could never do this alone without Gilbert Blackwell! ❤️

3. Home: we are not homeless, and can call ourselves homeowners

4. Food: we can chow down (in a healthy way) ☺️

5. Vehicles: how would I survive without a vehicle in GA…no mass transit here…😜

6. Employment: not my favorite job, but it’s a job with income

7. Healthcare: yes, it’s expensive as hell, but I have it (including access to an awesome gym)

8. Education/growth/opportunity: have it and it’s available and we are able to access it

9. Supportive friends and family: need I say more? (Including my fur-babies)

10. I opened my eyes today and have another chance at life!

What are your top ten blessings that sustain you?

They are there..just look around you!

The Blooming Caregiver

Many times when we think of caregiving and the brutal battle fought everyday, we don’t think of beautiful words to describe it, like delightful, serene, full of potential, thrilling, and fulfilling.  Most adjectives used to describe the duties and role could spin you into a therapist office contemplating different diagnoses.  However, as I develop in this process, I am noticing more and more how there is a huge impact on myself as a human being, similar to a blossoming flower.

Have you ever watched a flower bloom and its reactions to environmental influences?  I have these beautiful Startgazer Lillies on my deck that I watch respond to the extreme sunlight, the rain, the humidity and the chilly nights.  I watch what makes them bloom and what makes them shrivel up.  The strain of too much sun, or the collision with a heavy downpour of rain can wither a blossom unto death.  As too, the caregiver, with an overabundance of environmental extrinsic stress can diminish the very essence, the intrinsic nature of being human.  If we are not careful, our blossoms will whither, our soil will dry up and our bright colors darken.   So how do we blossom as caregivers?

  1. Stay balanced with enough rain and sun to thrive, not just survive.  How do you ever think about doing this?  Well, I can tell you, being a financially restricted, young, married, working caregiver, this took a determination, a mindset and a love for myself.  It is true, no one is going to do this for you, not a system, not the government and definitely not friends and family.  Many will desert you and disappoint you.  You can look around and see the abyss of services and support.  Therefore, mentally, what is your option? Are you going to whither up and die, or seek the rain and sunshine?  What do you need to bloom during this time of great trial? What is your rain and sunshine? Define it for yourself and find a way to access it!
  2. Turn your trials and tribulations into hope and support for others.  Whether you   believe in God or not, your spiritual being provides a sense of purpose in humanity in that we are here to support and help someone along the way. We are all tied to one another, living on this earth together, sharing some set of meaning and purpose.  You are not traveling this road solo and are interconnected to your fellow man/woman.  As you learn more about caregiving and what has assisted you, share it with others.  If there is not a support group, start it.  If legislatures and the federal government aren’t supportive, tell them what you need, over and over and over again.  If there isn’t enough exposure to the needs and issues that surround caregivers, expose it.  Exposure can come through many different avenues including mulit-media outlets, work policies, non-caregiving and caregiving institutions.  If there is no sunshine, bring the rays and if there is no water, bring the fresh rain!  Blossom caregiver!  Write about it, talk about it, open your mouth and share! One of my favorite leader of all times, Martin Luther King Jr. had such powerful truth-filled quotes that has changed history and man-kind:
    • “Our lives begin to end the day we become silent about the things that matter.”
    • “In the end, we will remember not the words of our enemies, but the silence of our friends.”
    • “The ultimate measure of a man is not where he stands in moments of comfort or convenience, but where he stands at times of challenge and controversy.
  1. Make your strengths your personal weapons of war! Did you know a lily (Lilium) could grow just about anywhere? They are the earliest to bloom and the easiest to grow.  They have a multitude of colors, can be fragrant or non-fragrant, and require little care.  Sound familiar?  A caregiver receives little to no care from anyone.  They come in many different races, ages, sexes and socio-economic statuses and exist all over the world.  Disease does not discriminate and wherever there is a human suffering with a debilitating disease, there is a caregiver that embodies some heavy-duty strength.  You have strengths caregiver and are the foundation of the survival of another human being.  Examine your strengths and put them to use for yourself.  We fight and advocate everyday for our loved ones and yet, we ignore ourselves like we have no value.  Take a minutes an inventory the strengths and values you apply to caregiving everyday and begin to apply them to yourself. They are the petals in your bloom, the root in the soil and the nourishment needed to continue to flourish. 

“Strength and growth come only through effort and struggle.”

Caregiver Resilience

In the two years of caregiving for a loved one with Alzheimers, I truly feel as though our family has uncovered a strength like no other, a rope of resilience, that has kept us humble and determined to survive.  Using your story to bring awareness to a key issue and bring hope to others is the least one can do in the face of hardship.

I woke this morning with the greatest blessing in seeing our story posted on the Option B website.  What a validating feeling it is to know that your suffering can lead to someone else’s victory!

https://optionb.org/stories/surviving-alzheimers-disease-h1vm4ghrx

The Healing Power of Silence

“Silence isn’t empty, but yet full of answers.”  How many times in your day do you hear silence?  Yes, I said “hear silence.”  Everyday we are bombarded by the texts, emails and calls pulsating through our phones.  You turn on the TV to hear the recent reality show drama, the days events full of crime, murder, poverty and hardship.  Our music pumps in our cars on the way to work with the sounds of traffic ringing in our ears.  As caregiver’s we have the additional noise as we wake to the needs of our loved ones and fall asleep to the repetitive sound of an Alzheimer’s thought.

All caregivers are given the “survivor” tips by friends, family members, organizations, colleagues and on and on.  They tell you in order to maintain your sanity on a daily basis, you should,  “take care of yourself”, “try yoga”, “see a “therapist”, “join a support group”, and my favorite, “download this tip sheet or newsletter.”  But how often do you hear, “take 10 minutes and be silent?”

After a recent visit to my Psychologist, I left her office very irritated with what she was pushing me to do.  After months and months of explaining and describing the burden I face as a caregiver, daughter, wife, and working professional, she was pushing me to prioritize something in my life.  All I kept thinking was, she wants me to do this, my colleagues want me to do that, my husband wants this and my mother needs that.  I was feeling like a ping pong ball bouncing sporadically between the expectations of others.  Caregivers are told to seek help, support and assistance, but they are rarely told, sit in silence and feed your soul.

After I left my therapists office I had realized what was bothering me; noise, constant direction, opinions, judgements and demands.  I drove around the corner to my local park and sat patiently in silence, waiting it to speak to me. There was no music, no cell phone, no texting, no instant messaging, no Facebook, only the mystical sounds of birds.   For the first time, in a long time, an overwhelming sense of peace came over me.  I could breathe in the freshness of the air and the wisdom of silence.  I heard more in the 10 minutes of silence than I had in months from humans.  What I heard was silence serenading me victorious words of strength, peace and love.

The next time your caregiver world consumes you with noise from others, those support systems, take time out to wrap yourself in the healing sound of silence. Your soul and spirit will thank you. “Silence is the sleep that nourishes wisdom.”

For more health benefits of silence: http://omtimes.com/2012/10/the-health-benefits-of-silence-simple-yet-profound/