Posted in Caregiving

Caregiving Near and Far

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

Anticipation

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

Importance of Being Flexible As A Caregiver

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

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

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

Don’t Do It…It’s a Trap

Welcome to Caregiver Friday!!

I get a lot of messages from caregivers that they are being blamed for opinions they gave to the person in their life who’s ill.  Why wouldn’t you give someone an opinion when you were asked for it?  The truth is you really weren’t asked for your opinion; you were asked to step on a landmine.

You may be chucking at that last statement, but it’s true.  How many times have you asked someone a question where you already knew the answer?  How many times were you unsure of yourself making a decision but you believed a certain selection to be the right one but you ask another’s advice on the matter?  It happens all the time, the only trouble is that when you’re in a caregiving role the stakes are a bit higher, the emotions a bit volatile, and the tension in the relationship often the greatest.

Is there a way to avoid stepping on the landmine and blowing up?  Of course there is and the easy response would be not to give your advice, opinion, or decision…we know that’s not going to happen.  The true way to avoid the landmine and make the process more collaborative is to partake in the journey.  (I heard a saying once, “I’ll go to hell with you, not for you.”) 

What would partaking in the journey look like?  It means holding back your advice and judgment and doing some exploration.  I had a very dear friend call me last night with some tough questions about end-of-life care and grieving.  I can’t say what’s definitively right for him because I don’t have his personal mythology, history, and personal values.  I did join him on his journey by first sending him on the journey.  Explaining that there is no “right” or “wrong”  but that the decision has to come out of contemplation, evaluation, and soul-searching.

The easiest way to help the loved one you’re caring for answer a question is to ask them questions.  Please make the questions open-ended, no “yes” or “no” questions allowed, this is an exploratory process.  At first it may feel rude answering a question with a question, but we all have to go on our own pilgrimage and if we don’t then all other possibilities in life get eliminated because we begin going to others for the answer to all our questions.

You’ll hear Buddhists discuss “living in the question”.  I’ve found not only as a therapist, but in my own life when I can have one question lead me to another question I go further, deeper, and in the end feel a greater sense of resolution about any and every issue.

If you need more information about taking another on a journey write your question in the comments (because we all have questions…Right?) or email me at greg@survivingstrong.com

Posted in Caregiving

Oh The Places You’ll Go

Welcome to Caregiver Friday!!

I don’t know why, but as I got ready to begin this post I thought about Dr. Seuss.  One of my favorite Dr. Seuss books is “Oh the Places You’ll Go”.  It got me thinking about travel but then I began thinking about travel different from a destination and more about travel as it relates to our own internal journey.

As a caregiver I’m sure you can attest to the whirlwind trip you’ve been on since the person you care about has been diagnosed with a chronic or other life-altering illness.  It’s not only about the physical places you go like to the doctor’s office, pharmacy, and lab, but the internal places you go. 

If you’re not sure what I mean let me tickle your memory for a moment and begin with the place of shock and maybe horror when you learned of your loved one’s illness.  Perhaps you entered the land of The Zombie where you were a bit numb and somehow still tried or managed to navigate through your world, but not fully present.  Then of course, for many or most caregivers, comes the role of the organizer, planner, and protector (am I getting close yet?)

These are all places you’ve gone and we haven’t even begun to think about all the places you’ll go like the joy or relief you may feel if your loved one gets better or well.  You might enter the anxiety free zone when your loved one finishes treatment and there’s a few minutes to catch your breath before you realize that it will be years before an oncologist will tell you your loved one is “cured”.

For many of the caregivers I’ve worked with over the  years, the internal journey begins when they tell their story.  There is something about sharing your journey that not only validates the time, effort, energy, love, and compassion you put into caregiving; but the spiritual journey requiring faith that you’ll be able to wake up tomorrow and do the caregiving thing once again with full awareness.

Everything in life will not be a Dr. Seuss book.  My hope is that you keep track of your journey on all levels, the physical, emotional, and spiritual places you venture since your loved one’s diagnosis.  Allow yourself the time and the space to explore these unearthed places that you may never have accessed had your loved one not been diagnosed with a health challenge.

It’s a time of reflection, but it’s also a time of action.  It’s a time of questioning, and of examining your level of trust and faith.  It’s a time of the unknown as it pertains to your loved one, but it’s also a time of knowing as your explore your own interior world.

I’d love to hear about the places you’ll go…send me an email at greg@survivingstrong.com and let me know the places you travel on the physical world and your interior world; I’d love to be your co-pilot!