Tag: care for the caregiver

Posted in Caregiving

Are You Leaking?

Posted on by Rev. Greg Katz, MS, PhD

I had a very interesting human exchange yesterday that wasn’t pretty, but afterwards made me think long and hard.  I’m working in a retail establishment and a woman came up to the counter asking for a manager.  Our policy is to first request what the matter is about before passing it on to the manager of the store.  She asked if I was a manager and if I wasn’t she didn’t want to speak to me.  I responded that it wasn’t necessary for her to be extremely rude.  Her response was once again rude, loud, and obnoxious.  She asked what I was going to do about it and I responded I would need to call the police and have her removed.  Once again she became mouthy saying that her sister had cancer and was treated poorly and did I want the news station to come down.  I passed her off to the sales manager because we were at an impasse.

After the woman left the counter I saw her sister who was obviously going through treatment, evidenced by the hair loss.  It was clear that the woman who came to the counter was feeling overwhelming emotions and as the Buddhists discuss, she was leaking.  Her emotions were too much for her small body to hold and it was oozing out of every pore.  The eruption was probably a result of her powerlessness to save her sister’s life; at least that’s what I would like to believe.  We all know that walking around that angry is a date with health disaster.

When I got home and reflected on the exchange I felt a deep sense of sadness for the woman who was drowning in a wave of powerlessness.  Watching a loved one become increasingly sick and incapacitated is devastating.  Knowing that the only thing you can offer is love, support, and compassion may feel like you’re not doing enough; but it’s a tremendous amount.  You may not have the cure for the disease your loved one is facing, but if a spoonful of sugar can make the medicine go down, imagine what buckets of love can do.

I wish this woman comfort in her own journey as a caregiver.  I can see that her anger wasn’t directed at me, I just happened to be in her line of fire.  Illness is stressful and stress makes us do crazy things.  If you’re leaking please find some support, or way to relieve the pressure building up within.  It will make you a better caregiver and may improve your own health!

Posted in Caregiving

Caregiving Near and Far

Posted on by Rev. Greg Katz, MS, PhD

Welcome to Caregiver Friday!!

Growing up I remember the stories my parents told of where they grew up in Williamsburg, Brooklyn.  They shared stories of the neighborhood, where they lived, and who they lived near.  It was common for families to live within blocks of each other making support an easy thing to accomplish.  Knowing that there were family and friends within blocks eased everyone’s mind because love and support was close.  Times have changed and we’ve become a very mobile society, so what does that mean for us?

The job market has enticed many people away from their place of birth with the hope of a promising career.  I moved away from the east coast three years after I graduated from college to go to graduate school.  No matter the reason we leave, we often leave our families behind.  So what happens when a loved one needs our support?

One of the greatest tools for long-distance caregivers is technology.  Although you may not be there to provide the hands-on caregiving, you are available for emotional and spiritual support.  Technological advances like Skype, or FaceTime on your smart phone give you the chance to see you’re loved one while speaking to them.  Texting and email have certainly allowed long-distance caregivers to stay in touch with their loved one as well as the medical team who is caring for the person you love.  What about the day-to-day caregiving responsibilities?

When I was a HIV/AIDS service provider, I know that many who were diagnosed with AIDS, especially early on, returned to their hometowns to receive care from family members.  There was a huge migration of people from the two coasts who moved back to their more suburban/rural towns to receive love, support, and care from their families.

Depending on the amount of care needed a in-home caregiver can be hired to care for the physical needs of the person.  This was the choice may family made for my grandmother.  It was important for us that my grandmother remain in the home she’d lived in for over 35 years.  Having the continuity and safety of the home she had lived in for so long was crucial for her quality of life.  My parents lived an hour away, but my father often worked in the area and would stop by several times a week to visit and then my grandmother would come to my parents’ home for visits.  We were fortunate to have a live-in caregiver who was attentive, loving, and compassionate…but that may not be an option for everyone.

It’s possible to hire a care manager who will make an assessment of the person’s needs and the comes up with a care plan.  Often this entails arranging for community services to come in and provide help to the person who is health challenged or injured.  There is the option of a multi-level care facility.  These living communities go from independent living, to assisted living, to 24 hour nursing care.  It is often quite expensive so it’s not an option for everyone.

We’re going to have to come up with ways to handle the issue of long-distance caregiving, especially as our population ages.  The statistics show that because we’re living longer, many will have illnesses in their advanced years.  If you’re a long-distance caregiver and have strategies to share I’d be grateful.  It’s something we have to address unless of course we all begin to migrate back to our families.

 

Posted in Caregiving

Does Caregiver Really Capture the Essence?

Posted on by Rev. Greg Katz, MS, PhD

Welcome to Caregiver Friday!!

As I read pathographies (books written by those facing an illness), I’m very conscious of the words people use to tell their stories.  It’s the subtle nature of the words that can impact the meaning, both on the storytelling side and the audience.  How are you perceived as a caregiver based on the story you tell?  How do you perceive yourself?  How would you like to be perceived?

It struck me last night that we use the word care-“giver”.  I can’t tell you why but that word has been leaving a sour taste in my mouth.  It’s not that I don’t honor the care”giver”, but I think that when we use this word the individual who is the care”giver” loses some of their personal power.  Unfortunately the only example I can give is training my dog.  My dog  Bella is an Australian Shepherd and Husky mix.  It’s hard to believe that she’s better at retrieving than my retriever, but it’s true.  When she fetches a toy and I want it back I ask her to “give” it to me.  It’s a command.

I feel the same about care”giving”.  It makes it sound like the individual providing care has been stripped of their personal power and have been given a command.  All the care”givers” I know and have met over the years provide care out of love and compassion.  The care they offer is a gift.  So what would happen if we shifted the term from caregiver to careofferer?  I know it’s a mouthful and perhaps it’s not the exact word, but the sentiment is more important than the actual word.

The idea that someone, you the careofferer, offer physical, emotional, and spiritual support is an offering.  You can’t force care upon someone unless they are incapacitated.  I believe that by looking at this as an offering it empowers you, the care provider, to come from a place of nurturance and partnership, not duty and obligation.

They say that little things mean a lot and I believe that making this shift, maybe not in our daily vocabulary, but in your heart and soul could be a monumental shift in your experience providing care?  What are your thoughts on the matter?

Posted in Caregiving

Anticipation

Posted on by Rev. Greg Katz, MS, PhD

Welcome to Caregiver Friday!!

Summer has officially begun and the 4th of July is right around the corner.  One way this becomes clear is that there are a number of stands selling fireworks throughout the area.  Unfortunately in my household there is a scaredy cat…or rather a scaredy dog.  My dog Bella is terrified by the sounds of the firework and once they begin she retreats to the corner behind the couch and the end table; a cramped little space where she feels safe.  She hides back there because, as we all know, those shooting the fireworks don’t stop after one firecracker.  She’s well aware of this so she takes measures to make herself safe.

The same is true in caregiving.  It’s a role that doesn’t end until the person is either healed or cured, and the road to recovery is filled with twists and turns.  Is it really any wonder why caregiver stress and caregiver burnout are rampant in our culture.  We expect you, the caregiver, to provide 24/7 care without backup, training, resources, or any other relief strategies.  There are self-help books and support groups and those are great, but they don’t alleviate the anticipation of waiting for the other shoe to drop with the one you love.

Caregiving is wrought with anticipation.  It leaves you, the caregiver, a little edgy at times because there is no protective barrier for you the way you serve as protection for the person facing the chronic or life-threatening illness.  The anticipation is heightened because you feel vulnerable and exposed.  In many cases you are the liaison between the patient and the doctor and let’s face it; the messenger is the one who always gets shot.

So how will you deal with your anticipation?  Anticipation is rooted in anxiety, and in this case the anxiety is rooted in fear (kind of the domino theory of caregiving).  It can be draining and exhausting unless you set procedures in place for self-care.  This is one of the times when a family meeting is very important because everyone needs to be on the same page.  Caregiving is not a one person show, it’s an ensemble cast.  Who is responsible for what in your circle?  Think of it as being a project manager.  Different people have different responsibilities and you hold those people accountable for their activities and responsibilities.

Waiting for the other shoe to drop is terrifying so the first and most important activity is to consider what makes you the most anxious.  Taking a personal inventory of your own concerns and Achilles heal is vital.  I know, for me, that illness isn’t the big anxiety producing event, but pain and suffering raises my anxiety factor.  Everyone has that one or couple of things that sends their anticipatory anxiety through the roof.  Know what it is and find ways to curb that anxiety.  Support groups are great because you may find others who have the same fears and you can become a band of brothers/sisters.

Anticipation may be great when waiting for Heinz ketchup to come out of the bottle, but it is counter-productive for your own physical, emotional, and spiritual wellness.  What are you going to do to lessen the impact of anticipation?

Posted in Caregiving

Cost of Caregiving

Posted on by Rev. Greg Katz, MS, PhD

Welcome to Caregiver Friday!!

Well the numbers are in and unfortunately it’s clear that caregiving is not only an emotional and spiritual issue, but a financial one as well.  A report on ABC World New Tonight with Diane Sawyer estimates that caregiving costs the average person $303,000.00.  This figure is in lost wages, expenses for caregiving, impact on pensions and social security.  I don’t know about you, but that’s a lot of money.

Let’s take it one step further than just numbers.  What about the emotional cost of caregiving.  How can you put a dollar amount on worry?  What’s the physical impact on you, the caregiver?  What has caregiving cost you spiritually as you strive for explanations about how this phase of your life materialized?  What does it cost you mentally to feel out-of-control and at times at the mercy of an illness that’s not even in your own body?

I don’t believe the Congressional Budget Office could factor this monetarily, only you can determine the cost to your body, mind, and spirit.  I guess the bigger question is aside from the obvious aspects of caregiving; how can you cut the expenditures?  I just received an e-mail about using writing in a soulful manner and the it shared a bumper sticker that said, “Life is Fragile, Handle with Prayer”.  I’m not saying that you need to pray to get through the day or to reduce the impact of caregiving on your soul, but finding ways to curb the expense to your spirit is important.  It will allow you to build up resources in your emotional bank so when necessary, you can make withdrawals without running a deficit (leave that to the government).

How will you cut your personal costs to caregiving?  Unfortunately in this day of extreme couponing, there’s no coupon that can give a reduced impact on your soul.  Find outlets to release the negative energy impacting your body, mind, and spirit.  Engage in pleasurable activities, have a lovely meal, engage in a creative activity, join a support group, make an appointment with a spiritual advisor, contact a coach, talk to a psychotherapist, journal your thoughts, whatever you choose I hope it reduces your personal cost of caregiving.

Posted in Caregiving

This Isn’t How It Was Supposed to Be!

Posted on by Rev. Greg Katz, MS, PhD

Welcome to Caregiver Friday!!

I’ve spoken about types of caregiving and the impact that caregiving has on your daily routine.  When I write about being diagnosed with a chronic or life-threatening illness I speak about the shock and the grief and I haven’t addressed that for you, the caregiver.  At the time of the patient’s diagnosis there is a period of shock and grief.  When we grieve or mourn there is a significant shift in our consciousness.  We begin to think about the impermanence of circumstances and of life itself.

For some reason we, those living in Western civilized nations, have an assumption that we will live to be old.  We expect to go through our early and middle adulthood following the normal stages of development, retire and live out our golden years until the time comes when the body begins to wear down.  The truth is we’re not guaranteed any length of life.  We aren’t guaranteed a life without illness as you know following the diagnosis of your loved one.  Grieving or mourning the loss of that expectation, that vision of what life would be like is part of the process, not only of caregiving, but of coping with all of life’s turbulence.

I know for me, the idea that I would be on medication for the rest of my life was a shock.  At the time of my diagnosis there was only a minimal amount of treatment options.  As I entered my early adulthood medical breakthroughs came out and continue to come out with new medications.  I’m tied to the pharmacy and my doctor for eternity (unless there’s a miracle).  On the caregiver end there needs to be a form of surrender that allows you to pry your grip off the life you believed you were supposed to have, and grasp the ring of life as it is.

We all wish that life would be free of illness, but that’s not a reality.  As a caregiver, mourning is part of the process.  It doesn’t mean you abandon hopes and dreams, just that they may be altered a bit.  It doesn’t mean you can’t carry out the visions and hopes you held prior to the diagnosis, just that they may need to be adapted to the current circumstance.  Grieving/mourning can apply to adaptation and revision of how you’ll live your life.  It’s part of the process and at times can be quite painful.  However, it also punctuates your resilience for living the best life possible.

Posted in Caregiving

We All Suffer

Posted on by Rev. Greg Katz, MS, PhD

Welcome to Caregiver Friday!!

I’m doing a lot of research about the impact that a diagnosis of a chronic or life-threatening illness has on each of us.  It’s not only the person with the diagnosis that’s impacted, but the family (caregiver), friends, work colleagues, etc.  As a caregiver you experience suffering just as the person with the diagnosis suffers.  The outward reason for the suffering may not be the same, you’re not the one directly battling the physical impact of the disease, but you are facing it on the emotional, spiritual, and financial fronts.

The biggest thing for many about suffering is that it’s rooted in separation and isolation.  Suffering often rears its head when you begin to go inward and due to responsibilities as a caregiver begin to withdraw from life as you knew it.  We’ve talked about how a caregiver is like an air traffic controller, trying to coordinate all the activities to care for the patient.  When is there time for connection?  How do you, the caregiver. stay connected.  Connection is probably better than most of the antidepressants on the market (taking the neurochemical imbalance out of the picture).  Connection validates our lives and provides the support when times get rough.

One of the things to consider when you experience suffering is, “What am I actually missing, longing for, or desiring?”  Isolation and separation keep our minds running on overdrive in a circular fashion.  It’s like being on a treadmill unable to get off.  When this happens, you go fast, but you don’t get anywhere.  This effort is unrewarded adding to the despair.

What will you do today to end your suffering?  You can’t eliminate the physical experience of the diagnosis for the patient, but you’ve been doing all along makes them know they are loved and important to you.  How do you know you’re loved and important?  How can you plug back into your life?  I hope you find a way to eliminate the isolaotin and separation.  Feel free to connect to me…write a comment below or email me at greg@survivingstrong.com

Posted in Caregiving

Importance of Being Flexible As A Caregiver

Posted on by Rev. Greg Katz, MS, PhD

Welcome to Caregiver Friday!

I’ve been thinking about all the responsibilities that you, a caregiver, take on when someone you love is diagnosed with a chronic or other life-altering illness.  It’s mind-boggling the amount of stress involved (thus the term caregiver stress) and the commitment to your loved one to help them through this challenging time in their life.  When we think about caregiving it’s easy to believe that once you begin this journey it’s never-ending, but that’s not the care.  The obvious ending of the caregiver role is if your loved one dies, but there is another time when this may be the case; when your loved one is doing better.

This last hiatus in caregiving would apply to those patients who are in remission and I’m not just talking about cancer.  If the symptoms and disease progression are at a standstill then it may not require you to devote so much time to caregiving.  I began thinking about this yesterday when I went to the doctor and we had our usual discussion about my health.  I’m in an in-between state of my bodies rhythm where it could go either way depending on the next steps by me, the new medication I was prescribed and how my body reacts.  Up until recently things have been smooth sailing, so is the case for many patients, and then there’s a precipitating event require the support of you, a caregiver.

How do you feel about stepping in and out of the caregiver role?  Is it easier to be in caregiver mode all the time, or are you comfortable stepping in and out of the role as needed?  It’s an interesting question, and a question that you may need to wrestle with depending on the diagnosis and disease progression of the one you love.  It can be confusing to know when and where you need to step in as a caregiver unless you and the patient have well-defined parameters and a solid foundation for your communication.

This is one of the reasons that it’s so important for caregivers to have a support system for themselves.  The possible revolving door type of caregiving is becoming more and more prominent as new medical treatments are coming on the market helping patients on the journey to health and healing become better or well.

How do you feel about this type of caregiving?  It would help all of us if you would share your coping strategies, simply hit the comment button and share your thoughts or you can always e-mail me at greg@survivingstrong.com.

Posted in Caregiving

No Time Off For Good Behavior

Posted on by Rev. Greg Katz, MS, PhD

Welcome to Caregiver Friday!!

When you commit a crime and get sentenced, unless the crime was brutal you can often get a reduced sentence for good behavior.  When someone becomes ill with a chronic health challenge and you’re the caregiver there’s no time off for good behavior.  This week was two years since my father-in-law died.  He had a stroke after open-heart surgery twenty years before he died.  My mother-in-law cared for him at home for the first ten years and finally his care became too overwhelming and we found a placement in a nursing home.

Even though  he was getting full-time care at the nursing home, my mother-in-law was still his caregiver.  She was the liaison with the office, the staff, and the doctors.  She was still the one who provided him with things he need aside from food and shelter.  She visited him for years on a daily basis.  Physical location doesn’t disconnect the caregiver from the person who is sick or injured.

My concern is that we have to educate caregivers about self-preservation.  My mother-in-law basically stopped living her life at the age of 52 and for 20 years cared for her husband.  There’s the joke that many murderers get less time and what they did was a crime.  We have to educate caregivers that external resources are not a bad thing.  My parents had a live-in caregiver for my grandmother for a few years.  It didn’t erase the worry, but there was a sense of security that someone was living with her who would give her company, and provide a safe environment for her. 

We speak about quality of life for the person with the illness and almost never address it with the caregiver.  Respite care is helpful but 4 hours a week doesn’t give you, the caregiver, sufficient time to take care of your own needs and life.  Families live far apart in our society so long-distance caregiving is often the only possibility.  Care managers are great in this instance because they are local and can coordinate the services  needed for the person you love.  The unfortunate part is that it can become costly.

Industrialized society has given us a good model for caregiving.  We need to examine smaller cultures to see how they provide care for their sick and injured.  We need to see how people who cared for us get the care they deserve when needed.  We need to figure out how to become a caregiving culture because that’s where we’re headed…have you looked at the statistics on the baby boomers?

As you know caregiving is not solely about the physical aspects of caregiving.  It takes up a lot of your emotional and spiritual space in your being.  On the emotional and spiritual end of caregiving it is a 24/7 commitment.  Just because the person may not be living with you doesn’t make caregiving any less meaningful or stressful; don’t even get me started on caregiver guilt.

Give yourself time off…let’s see if we can become solution focused to make it happen.

Posted in Caregiving

It Could Have Been A Hallmark Commercial

Posted on by Rev. Greg Katz, MS, PhD

Welcome to Caregiver Friday!!

Every so often I have an experience that let’s me see how the folks at Hallmark come up with their movies and their greetings cards.  A scene that couldn’t have been scripted better if the best writers in Hollywood wrote it and the best actors in the country played it.  It’s what love, compassion, and understanding is all about, and when I see it in person it renews my faith in what we as humans are capable of when caring for another individual.

It was an elderly gentleman (probably late 80’s) and his adult daughter.  They came to buy him a new mattress; sounded like he was moving in with her after living independently up till this point.  We gave them all the paperwork they needed to pick up the merchandise.  At the end of the transaction she takes his arm, and says to him, “I’ll wash this (the mattress pad) before we pick p the mattress so everything will be clean and ready for you.”  Then they walked arm-in-arm out of the store and went home.

As I watched the two of them interact and then leave the store I thought about how lucky he is to have someone in his life that would care for him so lovingly and gently.  I thought about how independent he is trying to be and is doing quite well given the circumstances.  I thought about how lucky he is to be receiving the support he needs and being allowed to stand on his own two feet, literally and figuratively, so that this transition is as easy as possible.  Then it occurred to me; she’s lucky to have someone in her life that taught her by example about being loving and gentle.  She’s lucky because she was shown the importance of allowing someone to maintain their independence no matter their age.  She’s lucky because she is to have learned that independence doesn’t have to mean being submissive, but a collaborative experience.

I hope as caregivers you re-experience what you were taught by example about being someone’s caregiver.  There is a trickle down theory in place and it shows itself in moments like the one I was honored to witness.  What’s your Hallmark moment?  Leave it in the comments part of the post and let’s all experience what’s possible.