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

Caregiver Learning Curve

Welcome to Caregiver Friday!!

Since I got to Buffalo for this consulting job I’m doing I’ve had a steep learning curve.  I’m a guy that doesn’t really like numbers; all I remember from accounting in college is that debits on the left and credits on the right.  I don’t balance my own check book (no I don’t believe if I have checks I must still have money), and yet my day revolves around balancing an invoice register…this I’ve had to learn.

On the other hand, my caregiving skills I believe are innate.  Maybe it’s a primal thing and I’ve just got those animal instincts well ingrained in my body, mind, and soul.  I’m on most of my family and friends Durable Power Attorney for Healthcare because they all know that I will be able to carry out their wishes if necessary.  I was a Resident Assistant (RA) in college in a dorm of freshman when I was a senior.  I was a big brother to a young boy with severe psychiatric disorders and the list goes on and on.

So is caregiving nature or nurture?  I believe it’s both.  There are those that will inherently assume the caregiving role and when the time comes the act of caregiving may be a bit easier, not the actual emotional/spiritual turmoil of someone they love become ill, just the role of caregiving.  Those who learn to be caregivers have that steep learning curve I mentioned at the beginning of the post.  They are just as effective, it just takes a bit more work in the beginning to nurture that inner caregiver till it blossoms.

I want to be clear, one isn’t any better than the other; they’re just different.  I just assume that I’ll be the caregiver for my parents someday even though my brother lives 30 minutes from them and I live 12 hours from them.  It’s an unspoken (well at this point it’s pretty spoken) understanding that caregiving is in my court.

Just wanted to open the discussion to see what your experience has been in the caregiving arena.  Any thoughts?  You can mail your ideas, questions and stories to 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!

Posted in Caregiving

Stop Breaking Your Back

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

Posted in Caregiving

What’s In Your Stocking?

Welcome to Caregiver Friday!!

The holiday season is upon us and for many that’s an added stress to your lives.  The holidays are supposed to be a time of fun and celebration but for many caregivers it’s one more time to take care of others…what about you?

If you’re looking for ideas to give friends and family for gifts you might enjoy think about telling them to give you time.  We all need to remember that time is a perishable commodity.  Once we miss out on something on December 17, 2010 we can’t ever reclaim that time. 

Having others give you the gift of time can mean lots of things.  Perhaps it means that you get some respite, someone comes to stay with the person who is sick or injured while you go out and spend time with friends, go to a coffee shop and read a book, or maybe even go see a movie.  Time as a gift may allow you the opportunity to take a class, go to a lecture, or take a little trip to spend time with family and friends.

People don’t think of time as precious, but as a caregiver and knowing someone who is potentially facing a shortened life, you know that time is precious.  People have to remember that by giving you time you not only get a bit of a break, but it allows you to recharge your battery so you can continue your role as a caregiver.

How many times have we made fun of loved ones who give coupons as gifts such as a massage from your partner, or cuddle time.  These become primo gifts because a coupon from a friend that you can redeem allows you to utilize the relief in caregiving responsibilities when you need it most.  It allows you, the caregiver, to get the relief you need at the time you need it.

Other opportunities may be that family or friends offer to pick up groceries, go to the dry cleaner for you, or take the kids to soccer practice.  Anything and everything that gives you wiggle room in your schedule is a precious gift.

I wish you a happy and healthy holiday season.  Caregiving is the ultimate gift to the person you love, and I hope you get that same kind of consideration.

I hope you’ll check out more tips for caregivers at the website www.survivingstrong.com.  You can sign-up for the free e-course “Courageous Caregiver”…my gift to you!

Posted in Caregiving

Caregiving is an Individual Experience

Welcome to Caregiver Friday!!

I’ve been thinking a lot about the recent death of Elizabeth Edwards.  The news spoke about how she was a “mother to the end”, leaving a letter for her children.  Edwards has a 28-year-old daughter and then two children around 10-12 years old; as we all know from the headlines she also has an ex-husband.

So I began thinking back to all the support groups I facilitated to reflect on the differences in caregiving between a spouse and a child. I’m focusing on end-of-life care as we have just passed National Hospice Month and the death of Elizabeth Edwards is in the news.

When spouses are caregiving for someone who is terminally, as you know, you’re reflecting on times you spent growing up with the person you’re caring for, not only chronologically, but emotionally and spiritually.  There is an investment in the relationship and it’s perfectly natural to begin wondering what will happen to you if the person you’re caring for dies.  (I’ll address living after the death of a spouse in coming weeks) 

Hopefully if there is time you can think back on those times that provided you and the person your caring for the deepest bonds, positive memories, and what it was like to be part of a team.  You’ve been a team throughout the illness so that story continues.  It is also a time to grieve together on things you won’t get to do together in the future.  This is about the reality of end-of-life care. 

When the adult child is the caregiver for the parent there are different dynamics.  I remember when my grandmother was quite elderly and on a decline she apologized to my mother for having to reverse roles.  She was sad and embarrassed that she couldn’t still be in the parental role, even though my mother was more than willing to care for her mother.

Adult children, depending on if you will have a surviving parent or not, will be facing life as an orphan.  You’ll have to complete your life journey without parental guidance in the physical realm, and rely on memories and lessons learned throughout the years.  

Caregiving is an individual experience.  It’s important that when you hear someone’s account of their caregiving experience that the listener understands the ramifications of the impending death of the patient.  I’ve been focusing on end-of-life, but the journey of these emotional and spiritual shifts come when the parent or spouse is diagnosed because everything changes.

Understanding the differences between spousal and child caregivers is important for support group facilitators to understand.  If you’re concerned that your facilitator doesn’t address these differences have them make contact with me and I can help guide them to make your support group experience truly supportive.

What’s your caregiving story?  How do you think it differs from others?  What has come up for you since becoming a caregiver?  I’d love to be your sounding board.

Posted in Caregiving

C-A-R-E-G-I-V-E-R Part 9

Welcome to Caregiver Friday!!

It’s hard to believe that this series is coming to a  close.  Writing the 8 previous entries has allowed me to reflect on all the caregiving stories I’ve heard over the past twenty years.  It has also allowed me to take note of the aspects of caregiving that seldom get talked about, the magnanimous gestures by caregivers for those needing your love, support, and assistance.  It is often a thankless job.  One of the greatest things I ever witnessed was a  doctor thanking the caregiver for being so present to the situation and showing commitment, perseverance, and love throughout the patient’s journey to health and healing. 

I felt it was only right to close this 9 part series with an aspect of caregiving that is often overlooked and yet I believe makes you, the caregiver, an invaluable component of the patient’s care.  It is also the reason your relationship with the patient and the care team is so crucial.  What’s the final aspect of the series?

R is for Realistic

I can’t think of any greater gift you can give the person you’re caring for than the gift of reality.  It’s so easy for many people after being diagnosed with a chronic or other life-altering illness to be all “pie-in-the-sky”.  You, the caregiver, are often more firmly planted in the reality of the day.  You’re in tune with the patient’s needs, the concerns of the patient and the care team, and you try to find a happy balance between all concerned parties.  I want to make one thing very clear; I don’t believe that being realistic means you’re pessimistic in any way.  Sometimes being realistic prevents the patient from undue stress and strain, not to mention endless let downs from misguided expectations.

If anything, as the person who holds the “reality” card you’re in a great position to be optimistic because you’ve developed the capacity to take a step back and look at the bigger picture.  It’s interesting about the optimist/pessimist debate because often I’ve found that the patient wants to stop treatment, but the caregiver believes so strongly in what’s possible that the deep dialogue takes place about love, commitment, and end-of-life care.

I hope you’ve been able and willing to take in all aspects I’ve discussed in this 9 part series.  It has been an amazing journey to be able to honor your presence as a caregiver.  I know I’ve done it before, but once again I’d like to say, THANK YOU for your tireless efforts to ease the transitions of the patient from someone who has been well to someone who is health challenged.  I want you to know that there are resources for support that I hope you’ll take advantage of in your community.  You can further your own journey by going to www.survivingstrong.com and signing up for the “Courageous Caregiver” e-course.  It’s a series delivered over the course of three weeks and allows you to explore caregiving even deeper with follow-up questions along the way.

It’s been an honor and privilege to accompany you on this journey.  I look forward to spending more time with you in the future!

Posted in Caregiving

C-A-R-E-G-I-V-E-R Part 8

Welcome to Caregiver Friday!!

So are you soaking up all the qualities of being a caregiver over the past 7 weeks?  What has been the most impactful for you?  Are there aspects to your caregiving persona that you hadn’t acknowledged prior to the series?  Have there been moments when you’ve been able to sit back and felt validated for all you do as a caregiver? 

It’s important that we bring the aspects of caregiving out into the open because as our population lives longer it will be more the norm than the exception.  In order for our society to survive the aging population and the increase in disease we have to take caregiving seriously as well as it’s impact on you, the caregiver.

E is for Enterprising

One of the things I most admire about you, the caregiver, is your enterprising nature.  You’re able to show imagination and initiative in caring for someone who is ill or injured.  You’ve come up with practical solutions about maneuvering within your home, changing dietary requirements, or simply finding a way to create a sense of normal amongst all the chaos.  It’s that understanding of creating a “new normal” that I applaud you, the caregiver above and beyond all other aspects of caregiving.

You have a readiness to undertake this venture on a personal, emotional, physical, and spiritual level.  You enter the world of the health challenged and you’re impacted even without your own diagnosis.  I wonder if “caregiving” can be a diagnosis since it comes with physical, emotional, and spiritual challenges apart from those of the person with the diagnosis? 

The life of the personal caregiver is different from professional caregivers, those who are hired through agencies.  Professional caregivers are exposed to all sorts of caregiving situations and even though they make emotional attachments to the person/family they’re caring for; there’s still an acceptance that at some point in time they will move on to another family.  That’s not the case with you, the personal caregiver.  You’re in it for the long haul.  You’re there round-the-clock and you’ve had to become inventive in creating niches of time for yourself. 

I hope that part of your enterprising nature has been to carve out time and space for your own physical, emotional, and spiritual regeneration.  This is why support groups for caregivers are so important, because no one should have to reinvent the wheel.  Getting a group of enterprising people together results in creative and workable solutions to the dilemmas that arise in caregiving.

I’d love for you to share where you’ve been enterprising as a caregiver.  Let’s share the wealth of knowledge and experience.

Posted in Caregiving

C-A-R-E-G-I-V-E-R Part 7

Welcome to Caregiver Friday!!

We’re rounding the corner to the home stretch on this 9 part series on Caregiving.  It’s amazing to think of the complexity of caregiving.  When I told people I was doing this 9 part series they wanted to know what is there to caregiving…you do what the person needs.  That’s obviously the simplistic version.  It doesn’t take into account all the minutia that often is second nature, not a conscious process.  It’s those aspects of your being that are being exercised to the max.  This is the opportunity to think about your journey as a caregiver, and down the road, what you’ll do with these gifts and talents you’ve so carefully nurtured and allowed to bloom

V is for Vigilant

When I was thinking about being vigilant, I wanted it to be different from that heightened state of anxiety where you are on pins and needles all the time.  There will obviously be points in time when that may be the case if the patient is critical, but vigilant is about a steadfastness, and an awareness.  As the caregiver your awareness can not only help a patient get better, but can certainly prevent catastrophe from happening.

As a caregiver you’re watchful.  This is key to aiding the patient because your awareness can detect subtle changes that the patient may not even recognize.  You may be attuned to certain aspects of the patient’s personality or character so any change is noticeable to you.  If you’re caring for the patient’s physical needs you’ll also be familiar with their physical being and if any subtle changes occur, you’re the one who will notice. 

This vigilance is also a gift to the medical community.  Having someone close to the patient who is aware of the person’s current state is key so if changes do occur you can notify the proper medical professional.  I believe that your watchful, alert state (hopefully not all-consuming) is a safety net for the patient and the medical community.  You’re the linchpin (as Seth Godin puts it) in the relationship between the doctor and the patient and other support personnel. 

Those were examples of supporting the person’s physical needs.  You’re also in a position to support their emotional and spiritual needs.  If you’ ve been around this person for a while you know when they are down or hurting (emotionally).  Having the capacity to recognize this and make arrangements for social connection will aid the patient’s well-being and may give you some free time while the patient visits with friends and family.

The spiritual needs of the patient may be a bit harder to spot, especially if the patient wasn’t particularly religious or spiritual before the diagnosis.  Sometimes it’s good to use yourself as a barometer.  If you’re feeling lost, internally, then maybe the patient is too.  In that case, a spiritual director may be the right person to help with the “big” questions.  I’ll be talking a bit about that more in the coming weeks as I begin to explore with you hospice and end-of-life care (November is National Hospice Month).

Thank your for your being vigilant.  Thank you for the being alert and in tune enough to recognize the changes that may occur.  Thank you for caring and most of all; Thank You for being a caregiver!

Posted in Caregiving

C-A-R-E-G-I-V-E-R Part 6

Welcome to Caregiver Friday!!

We’re passed the mid-way point on our exploration of caregiving.  I hope that as you read about this qualities or characteristics, you’re able to take the information in and see if you identify with it.  The amazing thing is that you may have already thought about these aspects of your personality or character, but seeing them in the open and connecting to it is something completely different.  You’re giving yourself the gift of compassion.  The ability to accept praise, honor, and value for who you are both as a person and as a caregiver.  Today we’ll explore a more internal facet of caregiving.

I is for Intuitive

As I’ve met with caregivers over the years the one thing that arises time-after-time is your experience of utilizing your intuition.  You may not even be aware you’re using your intuition, but as you, caregivers, share your stories, your level of intuition is heightened.  There’s a saying, “How do you get to Carnegie Hall?  Practice…Practice…Practice”.  I believe that’s why caregivers have a heightened utilization of your intuition; it’s because you tap into it more often and pay attention once you tap into that source.

Using your intuition may have been subtle at the beginning.  It may have started off as something visceral like a knot in your stomach, or a queasy feeling.  After a while I’m guessing when the physical manifestation emerged you were better able to connect it to something emotional or spiritual about yourself and the person you’re acting as caregiver. 

You begin/began to pick up thoughts based on tone of someone’s voice or their movements that alerted you to whether someone was safe or not, the person you are caring for is hiding something that they should be sharing, or a sense of something looming or pending.  The longer you serve as a caregiver the more in touch you become with these inklings.  Others may dismiss them but this intuitive nature is what can save the life of the person you love.  It’s a gift that when used can make caring for someone with a chronic or life-threatening illness less fearful.

When I talk about intuition I’m not discussing telekinetic ideas.  I’m exploring the internal GPS that gets alerted with frequent updates about what’s going in the life of you and the patient.  It’s another level of information you can use to help the patient make more informed decisions.  It’s possible that some may call it a vibe, think of the cat in the nursing home who would lie on the bed of the person who was going to die.  Aside from the fact that I wouldn’t want that cat on my bed; the cat had an intuition…a sense of what was ahead.

Your intuition can also serve to instill sanity in your role as caregiver.  It can help you determine what things need immediate attention and which you can set aside for a time so you can take better care of yourself. 

I hope you utilize this gift of intuition.  If you have stories about when or how intuition has shown up in your life as a caregiver I’d love to hear from you.