Posted in Caregiving

We All Suffer

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

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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

How It Looks Isn’t How It Is

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

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