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Thursday, July 26, 2012

Advance planning for the end of life: My answer to healing

Tory Zellick's story:
When we were much closer to the end of my mother's life, unbeknownst to us, she developed hypercalcemia [raised calcium level in the blood].  I was 24 at the time, and had already been her care partner for six years.  We'd started butting heads, as mothers and daughters do.  

Because of her shift in awareness, we started searching for a brain tumor.  Nothing was found to explain the change in her cognitive function.  To restore family balance, Dad whisked Mom away for a one one vacation.  While on the trip to Mexico, she got a urinary tract infection.  The kidney and liver can only process so much, so the calcium built up even more in her blood.  Her hallucinations continued.

We went to the Emergency Room of our hospital in Chico, California.  When admitted through the Emergency Room, you tend to deal with a hospitalist, not a physician who is familiar with one's illness/ailment.  We called her oncologist, who turned out to be out of town for the week.  But because we'd had the conversations with my mother, we knew she did NOT want cardiopulmonary resuscitation or a feeding tube.  We'd had the talk about the durable power of attorney.  She'd explained everything that she did and didn't want.  We'd contacted the lawyer, and had Do Not Resuscitate (DNR) and Do Not Intubate (DNI) orders already written.  We had a full understanding of what she felt was a good quality of life.  

As it became clear that end of life decisions needed to be made, we felt comfortable that we were fully prepared as a family.  We had what I call our "care team":  physicians, insurance broker, attorney, etc.  Being organized allowed me to have the information I needed at my fingertips to make appropriate decisions, and call the correct people when I needed certain questions answered, tests run, or scans compared.  

After comparing scans of Mom's liver over the past six-week period, it was apparent that the cancer had metastasized to her soft tissue, and that the hypercalcemia would be a quick and painless way for her to exit this life.  Quality of life was something she valued much more than time itself.   As a family, we decided to take her home and allow her to pass in the home she had raised her children in, as she had requested when we had the discussions about end-of-life when she was relatively healthy. 

This kind of situation can be overwhelming.  Your incredible, functioning brain will quickly begin to misfire.  But if you have everything organized, have had the difficult conversations about end-of-life and have the appropriate documents in order, it's much easier to make the decision best suited to the patient.

Years earlier, we'd been able to have the conversations about the end of life because my grandfather had been grappling with renal cancer for as long as I could remember.  My other grandfather had died when I was five, so we'd always talked openly about death. 

We weren't raised in any Western religion, but those who have some spirituality should contact their reverend, priest, etc., if they're looking for a guide to have such conversations.  We looked deep in ourselves to know what to do.  We sat in the living room, and discussed each of our wishes.  Our parents presented it to us that we should all know what everyone's wishes were.  An 18-year-old could get into a car accident and suffer a traumatic brain injury; this talk wasn't just for the oldest or sickest person in the family.  By incorporating the whole family and not just one ill individual, it helps by not isolating the patient about their own personal mortality.  It's not pointing the finger at any one person; it's something that everyone should do.

After my mother passed away, I created a workbook full of helpful tips and worksheets to help any caregiver avoid any unnecessary suffering.  It's my answer to healing, to help other people.  Either way, this journey will define you, when you're faced with a disease like this.

Tory's book, The Medical Day Planner: The Guide to Help Navigate the Medical Maze, provides insight and guidance to patients and their families and caregivers.  It's available at Barnes and Noble and Amazon.com.  Check out her website:  AllThingsCaregiver, and read another caregiver's story.

Thanks to Claudia Schou of Media Boutique for connecting us.

Monday, July 9, 2012

The Caregiving Wife: To blaze my own trail

Dr. Diana Denholm's story:
I'd watched my mother be a caregiver for many years for my father, watching him decline, and not being able to do anything about it.  I saw it as a daughter myself, sometimes critically, because you can't get caregiving into your head until you yourself do it--it's such a huge difference.  And caregiving for a spouse is unlike any other caregiving situation.

When I married, I got the unfortunate opportunity to see it through my own eyes--the person I’m in love with, watching him die.  Shortly after he proposed, my husband got colon cancer, which he survived. Then he developed Congestive Heart Failure. Since he had an artificial valve put in at age 40, you could hear his heartbeat.  With CHF, he then got Cheyne-Stokes syndrome, so at night, I could hear his heart stop for 25 seconds, and then start up like a train leaving the station, building to full speed, then slowing down to a stop again for another 25 seconds—all night long.  And soon, without realizing it, I became my mother--the same challenges.

We moved to California for a heart transplant.  Then the next round of disasters started, as the anti-rejection drugs tend to destroy your body.  Among a laundry list of illnesses, he developed skin cancer, depression, kidney failure, and Parkinson's Disease.  He had extensive dialysis, falls, bleeding out - one trauma after another.  

After several years on dialysis, he reached the point where he'd had enough.  Stopping the dialysis, he died five days later.  Even with my background as a medical psychotherapist, I was never really prepared for caregiving.  I had to blaze my own trail, through eleven and a half years, with nowhere to turn for answers.  There wasn't a place to find a road map to get through this with any semblance of sanity or semblance of self.

Caregivers commit suicide, become the objects of abuse, or even become abusers themselves.  None of that needs to happen.  My book is a wellspring of hope so you can make your life work even then.  Marriages disintegrate when somebody is ill; a lot of damage occurs to the relationship.  In the book you learn effective communication, specific tools and procedures, and very collaborative ways to work through all your challenges with compassion for yourself and for each other. You can reclaim the loving relationship you thought you lost forever.

Dr. Denholm's Advice for caregivers:
Establish expectations, and get everyone involved to be on the same page, e.g., what you're willing to do and not do, about legal and financial matters, visitors, sleep, sex, intimacy.  There are resources, and my book, The Caregiving Wife's Handbook, available at my website.  

Read another caregiver's story.  Thanks to Diana Denholm, PhD, LMHC for the interview, and to Elana Fiske of Hunter House Publishers for connecting us.     

Tuesday, July 3, 2012

Diabetes buddies: Voices of experience and hope

Mary's diabetes story:

     I've been involved with the Outreach Program for JDRF (formerly known as the Juvenile Diabetes Research Foundation) for about 10 years.   A family lives near me in a MetroWest suburb of Mass. and I visited them with one of our Bags of Hope, a care package designed to encourage children and their adult caregivers, help ease the transition of a new diagnosis of type 1 diabetes, and introduce the family to JDRF.  You go to the home and bring the bag with you and meet the child who was just diagnosed, and their parents.  The bag has a lot of information about diabetes, Rufus the Bear with Diabetes, a blood glucose meter…

     This family had a son, Joe, who was six.  My son Nick was diagnosed with diabetes at age 8.  Nick, who was 12 then, was just there with me.  There wasn't a lot of connection right then, but the young boy later wrote Nick a thank you note.  It meant a lot for Nick to get that.  Nick had just gone onto an insulin pump at age 11 or 12, and Joe was interested in learning about the pump.  So Nick went to visit again and showed Joe his pump; that interaction fostered more of a connection between them.

     When Joe got older, he went to Camp Joslin (now part of the Barton Center for Diabetes Education), where Nick was a counselor.  Nick had been on his high school football team, which Joe, who was in middle school by then, was very interested in.  They had this history in common, so they talked, and Nick told him about hiding his glucose tablets in those tight football pants.  

     When Nick was in college, he met another boy in our town, Mike, who'd recently been diagnosed with diabetes, who was about the same age as Joe.  The mothers arranged for Joe and Mike to go out for lunch with Nick, to ask about drinking and drugs and whatever.  That happened several times.  So the buddying about diabetes rippled out from that.  

     I ran into Joe two weeks ago.  He's now a senior in high school.   Joe is interested in delivering Bags of Hope to newly diagnosed children and in becoming a diabetes mentor for JDRF and being that voice of experience.  It's all circled around.

     The boys' mothers saw Nick's mentoring as a source of support, encouragement, and chance to see an older boy who was doing well living with Type 1 Diabetes.  They both also mentioned that for them as mothers it was comforting and helpful to see an older boy negotiating through the teen years and college well.

     That circled around another way, too.  Joe's mother is a captain of a large Walk Team in Boston [for the annual Walk to Cure Diabetes, JDRF's biggest fund-raising event].  That all started from that first Bag of Hope delivery.  As people get more comfortable with the disease and how to manage it, they get more involved with JDRF and its fund-raising side.  Building engagement like that is a process that takes some time.  For some families, it’s immediate; for others it takes a year or two; with others, it doesn't happen at all.  

     Read another story about how buddies help others with diabetes, and see the JDRF's New England Chapter - Bay State Branch website.  Thanks to Lauren Shields of JDRF for arranging the interview with Mary.

Monday, July 2, 2012

All-Inclusive Care for the Elderly: I was my Mom's PACE Program

Roberta Robinson's story:
I grew up in West Roxbury, Mass., married, had children and relocated to Pelham, New Hampshire.  I was a Paralegal and commuted to Boston for 11 years.

Meanwhile my mother was aging in place, and as her health began to fail her needs began to increase so I managed her home care from 60 miles away, making frequent trips to West Roxbury to make sure everything was going smoothly and that she was getting what she needed.   One day I received an internal message that I should keep myself fluid and that I would be out of wherever I was and into her house. 

And that was exactly what happened.

I found it necessary to move back to West Roxbury, however, not yet into her home as I wanted her to stay as independent as possible.  Then it happened….in one week, we had four emergencies…...the last finding her upside down on the couch with her feet on the back of the couch and her head hanging to the floor. It was then apparent that I needed to take the next step and move in with her.  

She was in her late 80’s and got chilled easily and kept the house like a sauna.  I was in my menopausal state and was melting so I became the cellar dweller.  

At this time, I had a full-time job with City of Boston Commission on the Affairs of the Elderly. My mother was, apparently, in her death process in the West Roxbury area (who knew?  There was no one to guide me through this process) and my daughter was in her marriage process in New Hampshire.  I was so stressed I thought I would pass before my mother did.  It was a slow, subtle process of about 5 years.  Every year she had an incident which brought her to the hospital, rehab and then home.  The first year I was advised by the case manager at the hospital that it was the beginning of the end and so I was on my guard….for four more years.  It was the 5th year that she never made it home.  I called her the Energizer Bunny.

At the end, it was like a switch had been flipped; she was incontinent, and couldn't care for herself. I had to clean up -day and night and then go to work the next day.  I was doing it all.

There's such a burden to caregiving!  No one knows what it's like until they’ve done it themselves.  Kind of like walking a mile in an Indian’s shoes…as the expression goes.

I had aides (certified nursing assistants) to help - I called them my angels.  I cooked for them all, and gave them gold for Christmas. 
 I so appreciated them and couldn’t have done it without them!

My mother had Diabetes.  She was a little Italian Mom.  I'd cook healthy meals, and then she'd add more starch to everything, which, in turn, caused her sugar level to skyrocket.  She wanted to stay home; that was her biggest desire.  She had Macular Degeneration [a type of vision loss], Congestive Heart Failure, Emphysema  [Chronic Obstructive Pulmonary (lung) Disease], Spinal Stenosis [abnormal narrowing of the spinal canal], Osteoporosis [reduced bone mineral density], and Frozen Shoulder [bone]. 

The world of Elder Services is an incredible maze.  I was trying to figure out what was going one with her health, trying to educate myself on services that were available and trying to get the best services for her that I could get.  There was not one person to outline this information for me and I felt like I was in a bumper car, getting bashed around.

Roberta's Advice for seniors in poor health: Coordinate their health care and plug them into life.  Get them connected to a community, whether it's faith-based, at the adult day health center, the housing community, or something else; it doesn't matter which one.   We need each other! 

Isolation is the worst enemy for seniors.  

Roberta Robinson is now the Director for Geriatric Outreach and Marketing for the PACE program (Program for All Inclusive Care for the Elderly), and the Geriatric Division at Cambridge Health Alliance. 
She is a patient advocate in the best sense of the word.

Read a story about a compassionate home care provider, and learn about the PACE program.  Thanks to Roberta for sharing her story.