WHICH HAT AM I WEARING?

Every day, I learn something new from another caregiver. 

Today, I was reading a conversation in a support group for spousal caregivers. "How can I cope with the resentment and frustration that comes from being so tired all the time?" someone asked. Another caregiver replied: "We wear different hats as wives. And remembering that can make a big difference.  "What hat am I wearing right now...? is a tool I use to check in with myself. It helps with my perspective, it helps with my energy levels, it helps with my stress levels."

The wisdom of caregivers, shared to ease the paths of others. I am inspired every single day. 

A Time to Feel Grateful, Sometimes After Loss

My husband Jim and I are packing this morning - we've got an early morning flight tomorrow to Dayton, Ohio. Our daughter Natalie's boyfriend grew up there and we're all meeting at his family home to celebrate Thanksgiving. 

Sipping my coffee, I began to think of all things I'm grateful for this year. Mom died on August 16 and in lots of ways, I still can't believe she's gone. But I searched for gratitude in the last year of Mom's life and this is what I found: 

• I feel grateful that just before Mom died, my sister and I went with her to a lovely hotel in a small town where her parents grew up and married. We reminisced about family history, explored pioneer gravestones (and found my great grandparents' markers)! We slept in the same room with views of the lake, a fire burning in the grate. 
• I am grateful that Mom had wonderful carers in the last year of her life - they loved her and she loved them.
• I feel grateful for my sister. Even though we've always been close, sometimes when life gets very busy, we take each other for granted. But we are hyper-aware of each other now, sharing our grief and our family memories. We've been holding hands a lot over the last few months. 
• I feel grateful for my husband Jim and our new puppy Daisy. I love my life and the chance I have to walk outside in the forest - nature heals my heart and soul. 
• I feel grateful for the love in our family, for our precious Nicholas and Natalie. I am grateful that Nick has been healthy and strong over the past year and that his carers love him. I feel grateful that our Natalie is thriving in her work and in her life with someone she loves very much. 
• I feel grateful that I have the opportunity to reflect on my life and share with so many others who, like me, have a life with caregiving at its heart.

Most of all, I am grateful that over the years, I have learned some lessons of resilience. I have learned to feel deeply grateful, especially for the love in our family. I hope you feel the love of family, too. Happy Thanksgiving to all my American friends and family! 

THE MAKING OF A CAREGIVER

In this recipe, the essence of the caregiver is kept aside, similar to the starter in sour dough bread. This 'starter' will be needed to make and re-make the caregiver into different shapes and sizes as needs for her or him arise.

Recipe for Making A Caregiver

Start with a cool oven, but make sure to the turn temperature up slowly till it's very hot.

When needs arise, tear off a bit of the starter.
Mix in:
Love for yeast
Muscle for flour
Determination for salt
Creative problem solving for water

Mix by throwing together. Let rise and then make sure that medical and insurance systems punch it down.

Let rise again.

Now, bake at a high temperature till done (remember, this recipe burns easily). Everyone eat - this recipe feeds many!

Start all over again when your loved one transitions to a new level of care.

NB: Remember, when a caregiver's loved one passes away, the starter will be used to bake an entirely different recipe. It will have the same ingredients, but will look very different.

Bon appetit.

WHAT HAPPENED NEXT: WHEN A CAREGIVER GOT CANCER

Paid or unpaid, caregivers are never supposed to get sick, right? But sometimes we do. Sue Robins owns a health care communications company and she also happens to be the mother of a young man with Down Syndrome. Robins used to blog about caring for her son and his encounters with the health care system.  But that all changed the day she received a diagnosis of breast cancer.   

Now Robins blogs about her experience as a cancer patient – one who wears a hospital gown and takes a number from a distracted clerk at the clinic counter. She is a patient who weeps at the smallest kindnesses shown by staff and at the vulnerability she feels as a person whose life has been turned inside out.

I was interested in how Sue Robins’ experience as a patient is shaping her attitudes towards both health care and the natural care she provides to her family at home, so I called her and we had a long chat.

ME: What has your cancer treatment taught you about what constitutes good care?

SUE R: I was surprised to learn that the elements of good care in the pediatric disability world are identical to those in the adult cancer world.  Fundamental notions like respect, dignity, information sharing and partnership are universal, no matter how old you are. And we need to apply child-friendly practices to adult care because when you are ill or injured, you feel like a child again.

ME: Why do you think good care is so difficult to dispense? Are there lessons here for family care?

SUE R: I think there’s a notion in the health care world that if healthcare professionals feel empathy for their patients, they will burn out.  I believe the opposite is true.  Allowing yourself to be human with your patients, to let them get to know you…this builds trust and is the beginning of a relationship.  Of course, all caregivers (paid or not) need to ensure they stay in touch with their own feelings or they won’t be able to care for others.

ME: How has your cancer diagnosis and treatment changed your caregiver identity?

SUE R: Since my cancer diagnosis, I’ve realized that my entire identity was consumed by caregiving. Because I spent all my time ensuring others felt cared for and loved, I had forgotten about caring for and loving myself. I even needed permission from my oncologist to go for a walk! In the hospital setting, I realized that I had NO IDEA how to speak up for myself.  I knew how to care for my kids and my husband, but not for myself. I could not hide behind being a mother or caregiver anymore because this was about ME.

It was very hard for me to receive care from my family.  My daughter, who is 20 and studying nursing, travelled home for my surgery. I felt terribly guilty about disrupting her life and about the worry my cancer caused everyone in my family. But my daughter took charge, helped us read the hospital pamphlets I’d been unable to open and even changed my dressings after my partial mastectomy. The key lesson here was that I needed to learn how to unconditionally love myself and accept that, as Brené Brown says, “I am enough”.

Q: Will your care for your son change as a result of your own health care experience? 

SUE R: I think I didn’t realize the depth of pain that health care can inflict, and I hope I will talk to him about those realities and feelings now instead of just bribing him to go to the lab to get his blood drawn.

I think I’m less worried about being liked.  My friend Isabel taught me this mantra when I was going in for cancer treatments:  “YOU ARE THE QUEEN!”  With that idea, I walked into the clinic knowing I deserved to be treated with kindness and with care.  I was less apologetic and more direct.  I will take this newfound confidence into my dealings with my son. And I’ve learned to laugh more with my family and with my friends. Laughter is important, too.

National Caregivers Month: The Third Pillar is Patience

Patience. We learn it the hard way in caregiving. In this break-neck-speed society, caregivers are like student drivers, always trying to put our foot on the gas, but with 'fate', the driving instructor, firmly putting his foot on the metaphorical brake. 

Caring for young children, an elderly parent, a loved one with disabilities, or someone dear with illness - all these situations call for slowing down, putting our worldly concerns on hold and being patient. We are patient when our loved ones eat slowly at mealtimes, we are patient waiting for their test results or for insurance settlements.  The urge to scream at the different paces of competing needs is real in every caregiver's life. 

But patience always wins, because it must. Aging, infirmity, living with illness or disability - all of these ways of getting through the day whether you are giving or receiving care - all of these take time.  More time than we are used to devoting to tasks such as getting dressed or having a bath.

And palliative caregivers know only too well that it requires time and patience to die. And yet when that frustrating slowness suddenly halts and the life of a dearly loved one ends.... this is how one caregiver expressed her feelings in an online support forum:

I lost my Dad on Sunday night. He was so sick for so long but in the end he died within 5 minutes. After almost six years of taking care of him and seeing him every day I can't believe I am finally out of a job. Never thought I would miss the burden of caregiving but I feel lost without him as my daily anchor. For those who are still in the midst of it, I hope you can find some small joy before it's over. The other side of it seems even tougher. 💕

Learning to be patient is connected to learning to love in the form of compassionate action that we call caregiving. It is both a blessing and a curse - like most things in life. And the stops, the starts, the quickness and slowness are all hard to absorb. Caregiving is never just one speed - the constant is the requirement for patience, even patience to endure grief.

National Caregivers Month Part 1: Bullet-proof

November is National Family Caregivers month and I've decided to write a series about resilience.

When I think about my own resilience, I am only half-joking when I tell friends that I'm bullet-proof.  What I mean by that is this: I experience a full range of emotions, but another part of me is in active self-protection mode.  This second, 'bullet-proof' side of me is the product of loving and caring over years for people in my family who have high needs, especially our son Nicholas (but more recently, my Mom too.)

I wasn't always bullet-proof. I was afraid all the time when Nick was small. Every crisis was new and different. I had no experience to draw upon or buoy me with clear-headed confidence. Now, much of what we see in our family, we've seen before. We know what to do about familiar rashes, coughs, pain and seizures. We know how to detect when things are going right or wrong with our paid caregiving team and we're good at collaborating to praise them or find solutions to problems. I still get frightened badly when some new threat or mystery health issue rears its ugly head, though.

Every problem encountered in caregiving and every health crisis dealt with is another piece of chainmail in the bullet-proof suit of armour. Love is what keeps us upright and loyalty is what keeps us from tossing the metal shirt aside.

I think when people say, "I don't know how you do it" (a phrase that grates on me, by the way), they are seeing our chainmail self-protection and they are expressing the wonderment of how we caregivers manage go on loving and experiencing heartbreak while still being so stoic, steadfast and hard-working for the sake of someone we love.

In this first week of National Caregivers Month, I salute my fellow bullet-proof friends who balance the intensity and intimacy of love and care with bravery and abiding loyalty.

How To Be A Resilient Caregiver - Especially When Change Hits Hard

Resilience is a word that’s thrown around a lot these days.  Everyone needs it and everyone wants it, especially people giving or receiving care.   And the truth is we all need resilience the most at times of big life changes or transitions. 

We mine our reserves of strength and optimism when our children with disabilities graduate to high school, or even scarier – adulthood.  We look for ways of coping and remaining calm when our aging parents move from family homes into assisted living accommodations.  What exactly is resilience, and how can we all get some?

To me, resilience is the ability to remain whole throughout a process of change.  Profound, transformative change buffets us, threatening to fracture or morph us into forms of being that we no longer recognize as ourselves.  Resilient people do not think about change as primarily consisting of loss and they weather transition without being destroyed by it.  They see their core as impermeable and perceive change as just that: a transformation of their environment.  Resilient people look at their new surroundings and ask, “What can I do today with all of this?”

My husband’s aunt Nellie is a geriatric physiotherapist.  She helps elderly residents of Montreal to maintain their mobility and independence as long as possible.  I asked her what she thought was the principal ingredient of resilience in her clients.  “I think people who weather change the best are those who aren’t alone”, she said, and then added,  “Those who do well are the ones whose families have talked WITH them all through the planning of a move.”  Nellie explained that when an elderly person has a debilitating accident, for example, and is transported to a nursing home without prior discussions or consultations about the move, that individual is bound to be confused and heartbroken by his transition. 

I reflected on our family’s move back to Canada from England in 2011.  Our son Nicholas was to move into a care home directly from the airport upon arrival.  I thought about our entire family supporting Nick with daily visits for months after his move.  I thought about our long family discussions with Nick about his impending move from home. I remembered that I bunked in with Nick for the first couple of weeks in order to train staff and support our young man.  Certainly he wasn’t alone and for sure, he had the opportunity to voice opinions, hopes and fears about what the future might hold at his new address.   That said, transition is never easy, because change is uncomfortable.  It threatens our habitual ways of being and stresses our sense of ease in daily life.  From time to time Nicholas still expresses his worries about his life away from us and we are there to listen. 

Nick being welcomed to his new digs by family and friends - August 30, 2011

I think Nellie is right – helping someone (and ourselves) be resilient at times of transition is about understanding the power of group support and it’s about talking through the change.  The next time I feel threatened by a looming transition in my family, I’ll try to remember Nellie’s good advice, because weathering change with resilience makes us strong and wise – qualities that are like gold – beautiful and precious.

When a Couple at McDonald's Said I Shouldn't Feed My Son in Public

I am fortunate to write for the marvellous site, The Mighty.  Here's my latest post for the good folks there - and if you feel like a daily dose of good news, subscribe to the feed.  You won't regret it! 

In 1993, we were living in London. My husband’s diplomatic career made us fearless about travel, even with two children, one of whom was medically complex with severe disabilities. We had an excellent treatment team at Great Ormond Street Hospital for Children and one day, my son Nicholas and I went there for a routine feeding tube change. The procedure was quick but painful, so I promised my boy a Happy Meal afterwards at McDonald’s as a reward.

With a shiny new tube in place, we walked across the square and down the busy sidewalk to the nearest Golden Arches. We found a table that could accommodate Nick’s small wheelchair and I ordered our meal. Nicholas is mostly tube-fed, but he loves to sample his favorite junk foods. We tore open the bag of food, marveled over his free toy and I began to carefully present small bites of burger and fries.

A young and uniformed staff member came toward our table looking frightened and ashen.

“Yes?” I asked. “Is everything all right? Is something wrong?”

He gulped. “I’m so sorry. That couple over there complained about you. They said you shouldn’t be here in a restaurant feeding your son. They said you should do that at home.”

My eyes widened. He continued, “I told them they had to move their seat. You stay here. I’m so sorry.”

Frankly, as they say in England, I was gobsmacked. I looked over at the complainers. They were old (probably the same age I am now). They were glowering at us – at me and my incredibly adorable 4-year-old son.

“Uhh?” Nick asked with a rising inflection. He wanted to know what all this fuss was about. “There is an older couple over there, Nick, who are not happy. I believe their mommies did not love them enough. I think they need our prayers.

“DEAR LORD…” I began with my head bowed and my voice amplified, “please forgive these very sad people who need more love in their hearts and more kindness in their actions. Amen.” Nicholas was laughing his head off. I’m not sure he understood what was happening, but there’s no question he “got” that his mom was mouthing off – in a good way, of course. We both giggled into our napkins and finished our fries with a flourish.

“Right!” I said to Nick. “It’s only 10 o’clock and I think we’ve accomplished a lot today!”

Over the years, we’ve had many dining experiences that have ranged from bad to excellent. But that day in London was definitely our “worst/best” one ever.

Read more: http://themighty.com/2015/08/when-a-couple-at-mcdonalds-said-i-shouldnt-feed-my-son-in-public/#ixzz3ickgGoDH

Caregiving With Strength - A Guidebook for Grieving Caregivers

Eleanor Silverberg understands grief.  She is a child of holocaust survivors who often witnessed her mother silently weeping.  An unspoken sorrow infused the Silverberg family home.....grief seeped into their furniture, their walls and of course their hearts.

Eleanor Silverberg's book Caregiving With Strength: Raising Self Care to New Heights by Acknowledging the Losses is the result of the author's personal experience with loss combined with her professional experience as a social worker, primarily in the areas of chronic illness and dementia.  This is a book for family caregivers and clinicians alike - it illuminates clear signposts for grieving caregivers who seek support in moving from immobilizing sadness to strength and resilience.  "Stated simply", Silverberg says, "the act of caregiving in itself is problem solving and fulfilling a grief task."

The author has carefully laid out a framework for healing consisting of the '3-A Approach: Acknowledge, Assess and Assist'.  Although the language at times feels better suited to clinicians, there are plenty of compelling anecdotes that make plain the common sense and positive possibilities contained in her approach.

Silverberg is right on the money in her description of our collective reluctance to acknowledge the reality of loss in caring for loved ones with chronic illness or dementia.  Naming (or acknowledging) grief for what it is in caregiving is a big first step that the author identifies in the strengthening process.  Assessing grief is more complicated since everyone will experience loss differently.  But Caregiving With Strength will help anyone understand their own high emotions much better in order to move on to the 'assisting' stage.  Of course, clinicians will be focused on their role as helpers of caregivers, but Silverberg is careful to point out that anyone experiencing the sadness and loss inherent in caregiving can assist themselves as well.

The author maintains that "grief is the most powerful untapped resource for human transformation."  Those who have come out other side of traumatic life events with their optimism intact know this to be true, but achieving that transformation is nearly impossible without applying Silverberg's pragmatic system to the process.  Muddling through a storm of black emotions without self-awareness or direction will never result in transformation - that's just the truth.

This is an essential text for caregivers, especially clinicians and family caregivers who gravitate to systems for understanding the human pain of loss.  Above all, its message is a positive one.  As the author quotes in a sermon by the Reverend Charles T. Rush, "Grief and hope are related.  Grief need not be an unmentionable downer to be avoided at all costs.  It's a constitutive part of our lives.  When it is done well, it can be very healing, intimate, caring, authentic, growthful and loving.  It can remind us of what our living is all about in the first place."

Caregiving With Strength by Eleanor Silverberg can be ordered HERE.

What Next! When Best Laid Plans Fall Through

Sometimes, even the best laid plans fall apart.  And life feels very, very unfair.  Every caregiver has a story about a high school reunion or an anniversary dinner that had to be cancelled at the last minute because of a loved one's illness or worse, bad weather.  Sometimes, the Gods just don't want us to have a break.

Caring over time requires patience and resilience.  We must reconcile the fact that we are not in control of our agenda and that our primary task is one of service.  We must find a way to be OK when plans are cancelled for dates that are very important to us.

Managing disappointment is on the job description of the caregiver.  It's not at the top of the list, but it's there.  I remember once when my husband was travelling on business and we'd arranged that I would have a nurse live in for a week so I could join my spouse for a much-needed, exotic break abroad.  I had dreamed about this holiday, shopped for special clothes, packed, booked my flights and spent many hours daydreaming about this week away with my beloved.  As the departure date drew near, the realisation dawned that our son was unwell.  Trembling in his body and stiffness in his left leg prompted me to call the neurologist.  An examination of his spinal cord pain pump confirmed the worst: the catheter delivering medication to our son's spine was blocked and emergency surgery was the only recourse we had to correct it.  Travel was out of the question.

At first, I didn't have time to be disappointed.  Adrenaline kicked in and I rose to the occasion.  But afterwards, I felt sad and exhausted.  For a few days, I was even bitter that my holiday had been cancelled.  But I knew that those negative feelings would just multiply if I let them and so I decided to do two things: accept what had happened and make new plans.

I knew that travelling abroad wouldn't happen again - that opportunity had come and gone.  But a weekend away with my husband might be possible if our son could be cared for in a respite home and our daughter could stay with relatives.  I remembered reading a quote from an article about street people that had stayed with me:  "You can live without money, but you can't live without plans."  I decided to make plans.

Nowadays, my Mom and I make plans.  When they fall through, we make new plans.  Planning is fun, it's hopeful and it's action-oriented.  My Mom is 93 and frail, but we're getting her a passport.  She wants to see to her old summer home of Kennebunk Port in Maine and you never know, she may get there yet.  We're planning.

How To Stay Positive

GUEST POST by a Staff Writer at Dry Depot

Being a caregiver is a difficult task and many of us will face extreme physical and emotional challenges as we care for our loved ones. However, we continue to go about our tasks, as it is an important part of our daily lives even if it can lead to frustration.

As a caregiver you are a compassionate and kind human being, and when frustration mounts it can feel overwhelming.  The last thing we want to do is take it out on the ones we love. So how can we manage our own emotional wellbeing while caring for a loved one? There are many ways to maintain positivity through a tough day, and we have outlined five steps to help you stay positive while caring for your loved ones.

Don’t Focus On The Past-

It’s easy to get sidelined by thoughts of the past, and focus on what life was like before taking care of a loved one was part of your daily routine. This can lead to emotional distress and while life might have been different before becoming a caregiver, staying focused on the present is essential to maintaining a positive outlook.

Focus On Education-

It’s important to continually educate yourself about your loved ones condition. From physical care best practices, to what new scientific advancements can help you and your loved ones live with a debilitating condition. If we learn about the condition our loved one is living with, it will also help us become more compassionate and understand how we can best be of service.

Research Products And Services-

There are many products, services, and new technologies that can make life as a caregiver much easier. Whether it’s a shower seat or adult incontinence products, investing in some of the tools that make a caregivers life easier will offer some much needed relief. New technological advances such as video doctor appointments, pre-programmed cellular devices, and adult diaper delivery services have made it easier for caregivers to maintain a positive outlook and not get bogged down with stress.

Go Outside-

More than likely as a caregiver you spend a lot of time indoors with your loved one. It’s important to take breaks in order to soak up some Vitamin D and rejuvenate your spirits with fresh air.  This will do wonders for your psyche. Whether you can take short breaks or can take your loved with you, make time for the outdoors whenever possible.

Take A ‘Me Day’-

This is the most essential of all of the steps when it comes to maintaining positivity and emotional wellbeing. Everyone needs a “me” day, and you should schedule in personal time whenever you have the chance. We are better caregivers when we take personal time. Being a caregiver can be overwhelming at times, but that doesn’t mean you shouldn’t still set personal goals or enjoy your time away from your duties. For many caregivers the thought of leaving our loved ones can be difficult, but just keep in mind that when you take time for yourself, everyone benefits.