Tag: coaching caregivers

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

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

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.

Posted in Caregiving

How It Looks Isn’t How It Is

Posted on by Rev. Greg Katz, MS, PhD

Welcome to Caregiver Friday!!

Every so often Oprah has a show with some big socialite or other well-to-do individual who has been in a domestic violence situation.  Over and over Oprah will say, “You never know what goes on behind the doors of someone’s home…looks can be deceiving.”

It took me to that tickle file in my brain with stories of caregivers who held on taking care of someone at home because if they put their loved one in a nursing home it would “look bad”.  What does look bad mean?  Are you, the caregiver running for Mr. or Ms. Congeniality in the Miss/Mr America pageant?  We’re worried about how we look to others including our own families. 

My mother-in-law took care of my father-in-law at home for over ten years before we convinced her to place him in a nursing home.  At the point we placed him he had deteriorated considerably from small strokes that followed the years after his massive stroke.  He was falling out of bed in the middle of the night (she’s a whole 98 lbs soaking wet and he was a bigger guy) so eventually she began calling the fire department to help get him in bed.  You may have a fireman fantasy, but they don’t like doing these types of calls on a regular basis.

I spoke with another gentleman this week whose mother has Alzheimer’s.  He had built a suite onto his home for his mother and she lived with him for over three years.  The tipping point, as it is for many if not most people, when deciding about a nursing home is the incontinence issue.   The research shows that incontinence is often the straw that breaks the camels back when making the decision to place someone in a nursing home.

Then there’s the issue of trying to be the hero.  A family where the man has Parkinson’s Disease (quite severe at this point) and his wife keeps him at home.  She does have some help getting him dressed the morning and put back in bed in the evening, but he’s a bigger guy and their in their late 60’s early 70’s.  A couple of times she has gotten hurt trying to help him get up when he has fallen out of the wheelchair.  What good does it do either of them to be trapped in this tug-o-war of guilt, shame, and emotional pain.  The decision is difficult, but we have to consider safety, health, and fairness on both sides of the aisle.

Only you know the true story of your caregiver/loved one relationship.  The decisions about care can be quite complex.  I’ve consulted with hundreds of families over the years to come up with a plan that is (according to Stephen Covey of 7 Habits of Highly Effective People) a win-win situation.  Being a martyr, a hero, or a servant takes it’s toll….is it a price you can pay?

Posted in Caregiving

Stop Breaking Your Back

Posted on by Rev. Greg Katz, MS, PhD

Welcome to Caregiver Friday!!

I know that some believe the big question is, “What is the meaning of life?”  Afer careful consideration I believe the big question is, “Why are we so afraid to ask for help?”  As caregivers you know how much responsibility you take on to make sure the life of your loved one is of the highest quality and least pain.  Unfortunately, many studies on caregivers show that not only do caregivers face emotional difficulties like anxiety and depression, but they also have a high degree of physical problems, particularly back pain.

Last night a story on ABC Nightly News with Diane Sawyer showed that help is available if you ask for it.  There are good people who are selfless willing to assist.  The problem is they can only offer to help if they know you need it.  The story revolved around a little 8yr old boy, Sam Parker.  Sam was born with Cerebral Palsy and is fed by a G-tube.  He’s immobile, doesn’t speak, and is blind.  His family was taken care of this 75lb boys needs since his birth.  unfortunately, his father had major heart surgery is unable to lift Sam making getting Sam up the stairs for bed difficult.  The family put out a call for help to the local high school and that’s where the magic happened.

The call for help was answered by the captain of the football team, Rudy Favard.  Rudy comes to the Parker’s home four nights a week at 8pm to carry Sam up the stairs to bed.  It’s interesting to hear about how Sam’s relationship with Rudy is developing.  Although you need help the patient may be a bit reluctant, but as we hear about Sam that uneasiness dissolves a new relationship/bond is formed. 

When Rudy Favard was interviewed he shares what a gift it is for him to be of service to this little boy and his family.  You can hear in his voice and his story how much joy the relationship with Sam brings.  When Rudy began helping Sam make it up to bed he was stiff and non-communicative.  Things have certainly changed; Sam now wiggles and giggles when Rudy carries him up the 14 stairs to his bedroom.

What if the family had never asked for help?  If they had tried to manage the situation themselves someone in the family could or would have been severely injured.  It would have increased the amount of stress in the family and that’s never good for a cohesive family bond.  Sam would have become the focus of the stress and that’s never a good thing.

Help is out there is we ask for it.  I’m sure some why we don’t ask for help is a combination of shame and pride, but let’s put that to the side an understand that it does take a village for us to move forward in our lives.  When a member of our tribe is ill or injured, others are willing to help ease the burden and keep the tribe together and moving forward on the journey to health and healing.

Looking for more caregiving tips?  Get your FREE e-course, The Courageous Caregiver at www.survivingstrong.com