The Tough Talk: End of Life

Christopher MacLellan (aka, The Bow Tie Guy) cares for his partner, Richard, who has esophageal cancer and was given three to four months to live – 16 months ago.

Chris is an inspiration in so many ways: he is a loving caregiver to his partner and is an avid advocate who created his blog The Purple Jacket to focus on “LGBT Seniors and the struggle of aging in a straight society.” Chris is also a “healthy caregiver” having lost 100 pounds and being one of the creators of the Caregiving.com “V-Ride” – a virtual bike ride meant to inspire caregivers to move even if they cannot leave the house to exercise. 



Robert a few years ago -
He thought it would be funny to play dead!

Chris and his partner, who he refers to as “The Little One,” recently discussed end of life issues on Your Caregiving Journey with Denise Brown.  A blog post of his followed as did a Twitter discussion (search for #carechat to see the discussion). 

In his blog post, Chris relayed five questions created by Denise and described in her recap of the radio show to help family caregivers get the usually difficult end of life discussion started.  After discussing my husband’s wishes with him, I turned my attention to Robert. 

After all, Robert has lived long past his expected expiration date.  (That may seem like a cavalier attitude but believe me, after numerous surgeries, life-threatening infections, too-many-to-count concussions, a coma and serious accidents due to seizures causing falls – I know how lucky we are to still have Robert around and consider each day he’s alive a “bonus” day).  Even after all of these close calls, I realized I hadn’t had the end of life conversation with him.  I do have Power of Attorney for Robert and he agreed at the time to a DNR (Do Not Resuscitate) but I hadn’t really talked with him about his wishes when he died.

I guess I thought the conversation would be difficult not only because it’s a touchy topic but because Robert has intellectual challenges.  He thinks, well, simply and I wasn’t sure how the conversation would go.  I was inspired by Chris, Denise and the chat on Twitter so my husband and I talked with Robert.

I used the questions Denise created as a guide to the conversation and started by telling Robert I knew he was very religious.  I then asked him what he thought would happen to him after he died.

Robert’s answer was matter-of-fact:  “I know I will go to heaven.” 

There must be comfort in such conviction.

I continued:  Do you want to be buried in same place as mom and dad? 

Robert said, “Yes.”  Then followed that up with a joke:

“No, I want to be buried next to George Washington.  Haha.  Only joking. Only joking.”

He continued (I suppose in case I didn’t know he was joking), “I want to be buried next to my mother.”

Is there anything else special you’d like to have happen after you die? 

Robert:  I want to be buried next to my mother and step-dad, George. 

I asked if it was okay if he was buried next to our dad (but close to Mom and George) since I thought there was more room by him and Robert said that would be fine.  (My dad wanted to be buried next to my mom since she died first but since they had such a volatile relationship in life, we didn’t want to create any problems for mom in the after-life.  He’s in the same cemetery but just out of throwing distance.  Believe me, it’s for his own good.)

My next question to Robert was, “What’s a good day like for you?”

Robert looked at me like I just asked him something crazy and said, “Just about every day is excellent.”

Duh!  What was I thinking?

I then asked Robert if there was anything he wanted to do before he died and his only answer was that he would like to read the bible more.

Have you lived a full life?

Robert:  Yes.

I tried again: Do you want to do anything else before you die?  (I don’t why I kept asking this - was I expecting him to say he wanted to parachute once or go to Disneyland one more time?)

Robert:  I want to do my word search puzzles. 

I continued (obviously, this question was more important to me than him):  How do you want to spend your time before you die?    

Robert:  I want to call Judy to get my leather jacket back.  Also, I have some shoes there.  (Robert lived with his companion, Judy, for many years before we realized he needed more care to stay healthy and safe.  He continues to talk about a leather jacket Other Brother gave him for Christmas one year and is certain it is still at Judy’s house.  I think I might actually have to check with her to see if it is indeed at her house.)

Moving on from the leather jacket and any big end of life plans he might have, I asked, “What do you want from me and Richard before you die?”

Robert:  I don’t need anything.  Just your love.

Richard and I shared a “aw, how sweet” moment with this answer.

So far, Robert had no problem answering the questions and didn’t seem uncomfortable at all.  I was curious about one more thing:

Do you think if you were sick and going to die, would you want to die at home or in the hospital?

Robert:  Probably at home.

Richard asked him, “Do want machines to keep you alive?”  Robert didn’t quite understand this so I explained that it would be like if he was in a coma and not able to be awake again.

Robert:  I’d like to pass away then. 

Do you have any questions for us?

Robert:  Is it about 8:30 in Modesto? 

Oh boy.  I know where this is going.  No you can’t call Judy right now about your leather jacket.  I’ll call her for you another time and see if she has it. 

Robert then reminded us he was about ready for his Rocky Road Ice Cream. 

End of life discussions difficult?  Ha!  Nope, not according to Robert. 

The difficult conversation is going to come if I can’t find that beloved leather jacket.

Chronic Pain: My Turn to Listen

My proclivity toward kitchen fires started when I was quite young.  I was no more than ten years old and baking cookies (I’m going to bet they were chocolate chip but don’t recall for sure).   The house filled with the delicious smell only chocolate chips cookies can emit (and, I’m going to also bet, my younger brothers were clamoring nearby for their share once they finished baking).

Photo Credit: Lowes

When the timer told me the cookies were done, I used both a kitchen towel and an oven mitt (I assume my fear of getting burned from the hot rack led me to double up on the protection) and the kitchen towel somehow touched the oven coils at the bottom of the oven and caught fire. 

There was a lot of screaming (mostly me, although I’m betting mom did her share once she ran into the kitchen) but I somehow managed to get the towel in the sink and douse it with water before the house burned down. 

Thankfully, the cookies were unharmed.

Nothing soothes frazzled nerves better than some delicious chocolate chip cookies. 

Fast-forward through teen years, my twenties, thirties, forties . . . you get the idea.  I have had several kitchen mishaps (okay, small fires or smoke-alarm incidents) through the years. 

These incidents were so expected within my family that I my own mother bought me a fire-extinguisher for a birthday present one year. (My mom could be quite practical).

Happy birthday to me. 

I have not actually had to use the fire-extinguisher because these all-too-often incidents don’t get too out of hand but there was one time the fire department was called.  That one really wasn’t my fault though (I was using an apparently just-cleaned oven at an apartment I recently moved into and the apartment filled with a horrible smell.) 

So kitchen “mishaps” happen but the biggest casualties are usually an appliance (or two).  A toaster caught on fire and was ruined because of an exploding Pop-Tart (it happens – look it up!).  As a poor college student, I wrote to Kellogg’s and insisted they buy me a new toaster.  (I didn’t get a new toaster but I got coupons for free Pop-Tarts which helped my almost non-existent grocery budget.) 

The most recent kitchen “incident” was probably the worst so far and we lost a microwave because of it.  I was making dinner and using the microwave as a timer.  Or so I thought.  I accidentally started the microwave “cooking” instead of timing for twenty minutes. 

Not a horrible mistake unless there’s a plastic container of frosted sugar cookies stored in the microwave. 

Yikes. 

The house filled with smoke and the smell of burnt plastic was horrendous.  Plastic melted into the bottom of the microwave and, even though we were able to clean out the inside, the smell never went away. 

This time the cookies (nor the microwave) could be saved and I had no company to write to asking for replacements – this was all on me. 

My husband and I shopped for a microwave on our next date night (I’m obviously as practical as my mom was) and came home with a gorgeous stainless steel microwave. 

This was the best result of a kitchen fire ever!

While deciding on the microwave, my husband made the comment that we should pay for the install (of course, I had fried the above-the-stove microwave and not a cheap countertop microwave).   Richard was envisioning the lifting and drilling and more lifting.  I was envisioning saving a few dollars.  When the salesperson came over to assist, he assured Richard the install was easy. 

My husband has serious chronic back pain issues.  He is also inclined to do more than he should so when he says we should pay someone to install an appliance, I really should listen to him.  He does not say these things lightly. 

However, I wasn’t really thinking and we both were easily swayed by the salesperson’s insistence that the install would be easy.

Helping my husband lift the very heavy old microwave out of the cabinet and install a new, only slightly less heavy microwave, was enough to make me bang my hand against my head asking, “What was I thinking?!”

Richard was able to install the shiny new microwave but paid for it with increased back pain for the remainder of the day – and the next.

I have learned a few things from this experience:

1. Don't use the microwave as a timer (the risk is too great);
2. Listen to my husband (at least when it comes to his back pain);
3. Always, always save the cookies . . .
   
   
   

CareGifters Book Series: Caregiving Love Stories Needed!

It is hard to believe but we are already moving into our second year of the CareGifters Book Series!  With Caregiving.com as the publisher, caregivers and their carees (and others involved in caregiving) as contributors and me (Trish Hughes Kreis) as editor, we published four books in 2012: Help, Comedy, Forgiveness and Gifts. 

Our next collaboration will be Love, due out in time for Valentine’s Day (noting my usual disclaimer: barring any caregiving emergencies).   

Because I know how caregiving can get in the way of the best of intentions, I am flexible with the deadline and the deadline to submit has been extended to January 28. 

The Love book will include your stories, poems, photos or artwork about love and caregiving.  Love has its ups and downs, challenges and rewards when caregiving – sometimes we even wonder where the love goes!  This book will explore as many shapes love comes in as possible.  Whatever love means to you or the one you care for will be shared with other caregivers. 

An added benefit of sharing our caregiving stories through these books is seeing we are not alone. 

What we experience, others experience. 

What we share helps us (because it’s good to get it out!) as well as others – in more ways than one: the money we raise through the CareGifters Book Series, goes toward the CareGifters Program which helps caregivers in need. 

Please see below for complete submission guidelines from Caregiving.com:
 

1. Your submission must be 1,500 words or less.

2. Your submission, in the form of an essay, short story, narrative or poem, must be related to the book’s theme of “Love.”

3. Your submission is, in essence, a donation. With your submission, you acknowledge you will not receive reimbursement upon the book’s publication.

4. We may not be able to include all submissions in the book. We will notify you whether or not your story will be included by January 29. Each published submission will feature the author’s by-line, bio and website link (if applicable).

5. To enter a submission, email your story by January 28 to love_story@caregiving.com. Please only attach Word or .txt documents (no PDFs). Include your name and phone number in your email.

I look forward to including your stories in our book! 

Guest Post: Caroline McGraw, Author, I Was a Stranger to Beauty

I am honored to be able to bring you a guest post by author, Caroline McGraw, who recently released a Kindle Single through ThinkPiecePublishing called, I was a Stranger to Beauty.   Caroline describes herself as “a would-be ‘childhood paleontologist’ who digs for treasure in people” and, as she says, she “writes about finding meaning in the most challenging relationships” at her blog, A Wish Come Clear.  

Author, Caroline McGraw

Congratulations are due Caroline as her KindleSingle debuted last week at #3 in Special Needs Memoirs and Special Needs EBooks category on Amazon!  Her book price is only $1.99 and 5% of proceeds from the first month's sales go to L'Arche Washington DC, a caregiving organization that provides homes for life for adults with special needs.  (To purchase the book, please visit here).   

Let’s help push Caroline to the #1 spot!

Caroline has shared an excerpt from her book for caregivers, Your Creed of Care:  How to Dig for Treasure in People (Without Getting Buried Alive) and Caroline is graciously offering a complimentary copy of the book via email.  Please visit Caroline's blog for caregivers, A Wish Come Clear, for your copy.  

Caroline’s excerpt will also be included in the next Caregiving.com CareGifters book, Love.  (Details on how to submit an essay, poem or artwork to the CareGifters book can be found here).    

Your Creed of Care:  How to Dig for Treasure in People (Without Getting Buried Alive)
Pitfall #7:  Holding On

I’m not a parent, so I can only imagine how difficult it must be:  letting a babysitter watch your kids, letting them go off to school, to college, to the wider world. Add to that a child with a physical or intellectual disability, and the letting-go gets even more difficult. To let go, to trust another person with your child or sibling? It may seem impossible. Yet, it’s also extremely valuable, both for you and the person you love and care for.

I remember riding with my parents the first time we dropped my brother Willie off for a respite weekend. He’d be spending two days with a group in a local hotel, going to game nights and swimming in the pool. I knew that Willie would have a great time. Even so, I felt a rush of protectiveness and near-panic as he exited the car. I kept feeling a need to check on him, to make sure he was all right. I could tell that my mom felt this need even more than I did. Though she’d met the staff and talked to my brother extensively and prepared long lists of Willie’s routines and double-checked his food, clothes and medication supplies, she still felt anxious. She’d done all she could, but it all felt so insignificant as he disappeared from our sight. We all wanted to hold on to him as we drove away.

After that experience, I understand why one woman I know literally left the country after her brother came to L’Arche [a faith-based non-profit organization that creates homes where people with and without intellectual disabilities share life in community, where I served as a caregiver for five years]. She knew that, if she stayed within driving distance, she’d be sure to meddle with his care. As my mother did for my brother, this woman made extensive preparations to ensure that her brother would be well cared-for. However, when the moment to let go of her brother’s care came, she felt a strong temptation to hold on.

I’ve met other families who have held on to their children tightly over the years. They continue to treat their adult sons and daughters as children. These parents are holding on to their role as primary caregivers, even as their sons and daughters are trying to make a new home and new life for themselves. It’s always difficult to watch this dynamic, and even more challenging to be a care provider in the middle of it. The adult child in this situation has a choice: they can either rebel against their parents’ holding on, or comply with it...and feel guilty for feeling stifled. Most people choose the latter.

To parents, it can seem as though holding on in this way will keep their child safe. When I watched my brother walk into the hotel, I wanted nothing more than a promise that he would be all right. I wanted a guarantee, even though I know better. There are no guarantees. We can only know that, by holding on too tightly to those we love, we are not loving them as we should. As Martha Beck writes in Steering By Starlight: “The goal of real love is always to set the beloved free.”

We cannot wait for a time when we feel perfectly safe to open our hands.

I cannot thank Caroline enough for sharing her excerpt here.  I’d also like to share an overview Caroline writes of her new book, I was a Stranger to Beauty:

How can you keep loving someone who seems to be destroying your family? And how can you separate a beloved person from their terrible actions? I Was a Stranger to Beauty invites readers to walk the road of loving people as they are ... a narrow, challenging road that leads to vistas of unimagined splendor.

Writer Caroline McGraw shares her arduous (yet joyous) journey toward acceptance of her only sibling, Willie. Willie, a young man on the autism spectrum, struggles with self-injurious and aggressive behavior. Caroline and her parents do their best to offer help and support, but Willie’s behavioral challenges continue. In the face of this seemingly-insurmountable difficulty, can they find a way to carry on as a family?

I Was a Stranger to Beauty follows Caroline as she makes an unexpected transition:  from angry sibling of a young man with autism to full-time caregiver for adults with special needs. After graduating from top-ranked Vassar College, Caroline takes a detour from her plan to write professionally in order to become a live-in direct care worker at a L’Arche home. L’Arche, a faith-based non-profit wherein people with and without intellectual disabilities share life together, is Caroline’s training ground for forgiveness.

As she forges new relationships at L’Arche, Caroline  finds herself  at  the  threshold  of  a  new  space  –  a  space  of  simplicity,  small  wonders,  and  overarching peace. In her work as a caregiver, Caroline falls in love with people with special needs, and begins to see the kind of things that only they could show her … namely, how to love, and not fear, her brother.

Beautiful. 

Thank you, Caroline.

Family with the Service Dog

Tom Coleman of Pawsitivity Service Dogs recently contacted me about his organization.  With a name like “Pawsitivity Service Dogs” how could I not pay attention?   

Photo credit: Pawsivity Service Dog website

Although I don’t use a service dog for Robert, we all love animals.  Through the years, our family has had cats, dogs, hamsters and an aquatic turtle (all “plural” except the turtle).  Robert loves the animals in our household as much as we do.  He helps by letting me know when our big, goofy lab, Oz, needs to go outside (or come back in).  And then back out.  

Robert even told me one time, “The cat wants out.”  Um, no, the cat doesn’t go outside.  Our cats are inside cats and Milky Way just happened to be sitting by the door where Oz goes outside.  (It was an easy mistake to make.)

Even though our Oz gives us lots of love and cuddles, I still miss our beautiful toy Pomeranian, Sassy, and our sweet boy, Wizard, a Lhasa Apso/Terrier mix.  (Yes, “Wizard of Oz” is my favorite movie).   

Our pets contribute so much to a family and service dogs are no different.  My friend, Cindy Mitchell, knows this because her beautiful Boomer Zoomer is a service dog who works hard to keep Cindy’s son safe during his seizures and comforted afterwards.  Boomer even has his own Facebook page!  (Boomer came from the Paws with a Cause organization).  

Pawsitivity Service Dogs is run by a husband and wife team based in Minnesota with a clear love for dogs. 

Tom Coleman shares more of the benefits of a service dog:

“Whether an Autism Service Dog is used to prevent wandering off, teaching empathy, helping with socialization, soothing melt-downs, as an educational tool, or helping with seizures, there's an extra, added benefit, that's not often talked about. The benefit is to the families. Whether parents of a child with autism or siblings, family members of a child with autism have to deal with an incredible amount of stress.

“We all deal with stress differently, whether through talking with friends, meditation, exercise, or some other method, yet we're all affected by it - our cortisol goes up, along with our heart rate and blood pressure, and it takes a long, long time to come down. For some family members, even sleep isn't that helpful, because the child requires attention even during the night. But an Autism Service Dog is not just for the child who is along the spectrum - a Service Dog has a loving gentle nature that isn't just limited to one person.

“At any point, the dog is available for petting, playing, or exercising with, and just stroking the dog immediately raises oxytocin levels (oxytocin is often called the "cuddle chemical"). These therapeutic benefits are significant - families who have an autistic child have been shown to have better Quality of Life (QOL) scores when the child has a Service Dog, and families report that it's not just because the child behaves better, it's also because the dog has them each personally to deal with the stressors in their life. A Service Dog is still a dog, and always wants to become a family dog when not working with the child they're assigned to - and a family dog always has enough love to go around!”

Thanks, Tom, for sharing your organization with us and for raising such helpful pups. 

If you have an experience with service pups, please share in the comment section.  Do you use a service dog or do you know someone who does?  Do you agree the benefits are not only to the person the dog is assigned to, but to the whole family? 

Be sure to also stop by Boomer’s Facebook page as well as the website of Pawsitivity Service Dogs! 

Working and Caregiving: Emotions in the Workplace

As a Legal Administrator (manager of a mid-size law firm), I have had many situations in which I’ve had to keep a cool head: firm closures, office moves and lay-offs as well as the routine tasks of preparing the annual budget, conducting reviews and hiring or terminating employees. 

Panic, freaking out, emotional breakdowns (by me) cannot happen during any of these situations and I have done a very good job of keeping my emotions in check during any and all of these stressful situations.  (I usually have a meltdown once the situation has passed but that’s another story.)

One instance stands out where I did not keep it together – at all.

It was our annual budget time which occurs each January (guess what I’m doing this month at work . . .).  It’s a stressful time because, for one reason, expenses have to be kept to a minimum.   Since I do a pretty decent job of this, it’s a personal goal to do even better the following year.  Which means hours of review, analysis and decisions. The budget process is intense, stressful and exhausting.  In fact, I joke that I’ve had exploding body parts because of it (one January, I developed Appendicitis and had to have my appendix removed.  I asked the surgeon just before going in for surgery if I’d be able to return to work in time for my budget meeting). 

Budget time is a stressful time.

I became involved in Robert’s care in late 2008.  In January 2009, he was in the hospital with a life-threatening infection needing surgery and looking at weeks of intravenous antibiotic treatment.  I was simultaneously managing Robert’s care and involved in one of my most stressful projects at work (the budget). 

Upon handing a draft of the budget to the Managing Partner, he asked a simple question.  I don’t even remember what it was but I became defensive and angry and burst into tears. How embarrassing!  Poor guy didn’t know what hit him.  I managed to extricate myself from the conversation and get back to my office as my tears wouldn’t listen to my brain screaming, “STOP!” 

The Managing Partner later called me (so brave of him!) and asked why in the world I was so upset about the question he asked. 

It was then that I explained what was going on in my life as a new caregiver.  I had only briefly mentioned that my brother was ill but, after my out of character meltdown at the drop of a hat, felt I owed him an explanation.  Thankfully, he was understanding and compassionate.  The budget eventually was completed without any other meltdowns from me (in front of the managing partner, anyway).

Are emotions like this okay in the workplace?  Working caregivers can be stressed out or exhausted (or both) yet come in day in, day out to do their job.  Saturday, on “Table Talk, Your Caregiving Journey,” Denise Brown of Caregiving.com asked the question, “How do you keep it together at work?” 

Denise and I talked about emotions in the workplace during our chat and explored possible solutions for the caregiver to manage these inevitable bad days (and, sometimes even, the meltdowns). 

Denise and I came up with five tips to manage the emotions:

• Talk to a trusted friend at work;
• Share the situation with your boss (if you are comfortable doing so);
• Use the Employee Assistance Program at work;
• Channel those emotions into projects;
• Take a day off or consider if it might be time for a longer-term solution such as flex-time or job sharing;

Click on the player below to hear the entire program and please join me and Denise on the 2^nd Saturday of each month as we discuss issues facing the working caregiver. 

I promise not to have a meltdown during the show! 

Please share your Working Caregiver stories in the comment section.  I'd love to know how others handle the emotions in the workplace. 

Listen to internet radio with Denise Brown on Blog Talk Radio

Decisions in Caregiving: Treatment

Decisions in caregiving can involve placement as Kathy so openly shared with us. 

Caregiving decisions can also be about treatment: What treatment plan to follow?  What medications to use?  Or even: do we do any treatment at all? 

Each answer can leave caregivers wondering if they made the right decision and asking “what if” I had made a different decision?  For quite some time, I questioned my own decision to honor the “I don’t want dialysis” edict from my dad when he was dying of kidney failure in the hospital. 

Jane with daughter, Nicole

Jane Northrop is a caregiver who has to make several decisions about treatment, medications and plans for the future for her 18 year old daughter.  Jane is a stay-at-home, homeschooling mom who was thrust into the role of advocate when her daughter, Nicole, was diagnosed with a rare, life-threatening, incurable, heart-lung disease at 15 years old.  (After doctors – for years – dismissed Jane’s concerns and misread EKGs).

Jane juggles the numerous appointments and medications for Nicole yet has found the time to be a speaker for a Peer Mentor group for one of Nicole’s medications and is actively involved in the Pulmonary Hypertension Association (PHA).  Jane blogs at caregiving.com and she also blogs on her own blog, “A Day in the Life” and has graciously allowed me to reprint a recent post.   

Like many caregivers, Jane has had to educate herself about her daughter’s condition and how the heart and lungs work (and how they aren’t working properly for her daughter) so she, her husband and Nicole can make informed decisions about treatment options.  Sometimes it seems as if caregivers get their own Ph.D. in whatever disease, disorder or condition their loved one has and in record time (because we usually have to get up to speed very quickly)! 

I admire how much Jane knows about Nicole’s condition and appreciate how she shares her knowledge with others.  She has helped more people than she will ever know, even now while moving toward a possible heart/lung transplant for her daughter.

In Jane’s words:

Transplant Evaluation Update

Nicole was recommended for transplant in November of 2012 by her cardiologist and pulmonary hypertension specialist.  On November 20, 2012 she saw the director of the heart/lung transplant department at Florida Hospital Transplant Center.

On Dec. 5th she saw the medical director for the lung transplant department.  There is no question that Nicole needs a double lung transplant but the question is what to do with her heart.  Nicole was born with what they have told us are several congenital heart defects.  She has a large VSD (ventricular septal defect).  A VSD is a hole between the left and right ventricles of the heart which is the lower chambers of the heart.  We were also told she has three other smaller VSD's.  We were told that she also has an ASD (atrial septal defect) which is a hole between the right and left atrium which is the top part of the heart.  Because these defects weren't diagnosed until Nicole was 15 years old it has caused Eisenmengers Syndrome which is a rare heart condition that causes reverse shunting of the heart.  In a normal heart, the blood shunts from left to right but with Nicole it will at some point reverse to right to left which will cause heart failure.  The combination of the heart defects and Eisenmengers has caused her pulmonary arterial hypertension which is high blood pressure within the arteries in the lungs which basically causes the arteries to narrow and cause difficulty with breathing.  The damage done to Nicole's lungs can't be reversed and there is no cure for this disease.   

The lung director had ordered three different tests to get good pictures of Nicole's heart and the way it functions so a team of doctors which include the two at the transplant center, Nicole's cardiologist, Nicole's PH specialist and a pediatric heart surgeon who specializes in congenital heart defects can get together and figure out if the heart can be repaired or if she needs a new heart. 

On Dec. 21st Nicole had her first heart related test called a CCTA scan which stands for cardiac computed tomography angiography.  This is an imaging method that uses a CT scan machine to look at structures and blood vessels of the heart.  Dye is injected into an IV and then pictures are taken of how the dye moves within the heart.  This test seemed to go well and the worse part Nicole said was when they injected the dye as it made her feel real warm and the sensation of peeing her pants.  We were told by the nurse that they got some good pictures.  This was an outpatient procedure.  We ended up driving an hour away to another Florida Hospital because they had a better machine.

On Dec. 28th she had her second heart related test called a TEE which stands for transesophageal echocardiogram which uses sound waves to create high quality moving pictures of the heart and its blood vessels.  A camera was stuck down Nicole's throat and pictures were taken from Nicole's stomach of her heart and captured on a sonogram machine.  The worst part of this test was the gargling of the numbing solution.  Nicole had to gargle three times for a minute or two each time and then swallow the stuff.  The first time her gag reflex took over and she spit it back out so the next two times I had to hold her mouth shut. When Nicole had to start the gargling the nurses told me that I had to go into the waiting room but Nicole got very nervous and anxious which her doctor saw and said that mom should stay for this part.  Right before I left they gave her the medicine for the sedation part.  The doctor wanted to make sure that she didn't remember any of the procedure – which she didn't.  She seemed to take a long time to come out of the sedation.  The doctor showed me all the pictures and explained everything to me.  During the procedure they inject bubbles and they can determine where the holes are by watching them.  The doctor could not see any evidence of an ASD as the bubbles didn't travel across from the ventricles to the atrium (there's a flap type thing that separates the two chambers).  He also didn't see three smaller VSD's but what he believed was a channel that gives off the illusion of three smaller holes but he thinks it is only one.  He said that her right ventricle looked very good.  With PH the disease will weaken the right ventricle and so far this hasn't happened in Nicole's case.  He said her bicuspid valve looked very good with no leakage and he thought maybe the pressures have come down in her lungs.  The doctor and I were very encouraged by this but an echo isn't always an accurate indicator so this is why the gold standard testing is the right heart catheterization. 

On Jan. 2nd Nicole had a right heart catheterization. Anytime she has this procedure it requires an overnight stay in one of the lovely suites in the cardiac ICU floor of the hospital. Nicole was going to be sedated again for the procedure since putting a patient "to sleep" is very dangerous for someone with PH.  Once again she woke up during the procedure because the anesthesiologist I think is a little over cautious which isn't necessarily a bad thing but it can create a bad experience for Nicole.  The procedure seems to take longer than I always think.  We were in the prep room where they start the IV get all the history meet the doctor's etc. and my friend and Nicole's old respiratory therapist at rehab happened to look on Facebook and see that Nicole was at the hospital and came by to see her.  She stayed in the waiting room with us until I was called and told that the procedure was over.  She then went home.  I told her she could stay and go see her but she didn't want to intrude on "family time."  I absolutely love Kathy and everything she has done for Nicole and me.  It was very nice of her to spend her first day off from work in a long time to sit at the hospital with us. 

One of the doctor's came in and explained how things went.  He said her pressures didn't go down but the number he used reflected a lower number than last time.  He said essentially everything was the same as her last cath in June 2012.  He did say that she doesn't have an ASD but a PFO which is a patent foramen ovale which is a hole between the left/right atrium but technically isn't a "true" hole but more like a flap that intermediately will open and allow blood to cross over.  I think that this is right but I could have it reversed but the left side of the heart has the red blood and the right side has the blue blood and with Nicole's VSD they are mixing so her lungs and other parts of her body are getting blue blood when she should be receiving red blood. 

If you see Nicole without O2 (oxygen) her lips may be blue and her fingernails and toenails are always blue and this is called cynosis which is caused by her VSD. The two doctor's present for the cath both agreed with Nicole's PH specialist that there was a channel along the ventricle that gave off the illusion of three smaller holes but in actuality he believed there was only one. 

During this procedure they also checked the pressures in her liver because increased pressures in the lungs can travel and impact the liver; thankfully her liver is good.  After the procedure Nicole had to lay flat without moving for four to six hours.  When they took the balloon thing off her groin she was almost in tears from the pain... it breaks my heart.  She is so brave and is such a trooper. 

It is my assumption that I will get a call from the lung department at the transplant center having us come in to explain all the conclusions that the testing came up with and what is the plan in regards to Nicole's heart: transplant vs. repair. 

I know that there are more tests that need to be done but I hope that these were the most strenuous for Nicole.  It is very stressful and difficult watching Nicole get all these tests done and the anxiety and stress this causes all of us.

Many thanks to Jane for sharing a most difficult few months. Please share your own caregiving decisions about treatment in the comment section or email me at robertssister@att.net to share your caregiving story. 

Decisions in Caregiving: Placement

Decisions in caregiving can feel MONUMENTAL.  The decisions that must be made as a caregiver never seem to be easy unless it’s what to have for dessert (Rocky Road ice cream, of course – when Robert’s visiting anyway). The decisions in caregiving have such finality to them that it can feel decisions cannot be “undone” which makes them all the more stressful. 

As promised, I’ve invited a few caregivers to share the decisions they are struggling with or facing right now. 

Kathy Lowrey started as a wife and mom at 19 years old.  Now a grandmother (and still a wife and mom), Kathy cares full-time for her husband, lovingly referred to as Hubby, who was diagnosed with Lewy Body dementia in October 2007.

Kathy and Hubby

Kathy blogs on Caregiving.com and on her website, Living With a Thief Named Lewy Body Dementia.  Her website was recently chosen by Healthline as one of the 25 Best Alzheimer’s Blogs of 2012. 

Kathy writes honestly and from the gut about what she goes through as a caregiver. Kathy says, “If just one person finds comfort in my blog, I will feel like it was a success.” 

After having cared for “Hubby” for many years in their home with minimal outside assistance, Kathy and her husband are now struggling with the decision of whether or not to place him in an Assisted Living Facility.

I deliberately said they are both struggling with that decision because, as a caregiver, Kathy has made herculean efforts to be sure her husband’s emotional and physical well-being are priority number one (not always easy when Lewy Body dementia robs her husband of his memory, his sense of self and even his recognition of who “that lady” is who lives with him – Kathy). 

The following post from Kathy was originally posted on her website and on Caregiving.com and it really shows the anguish a caregiver goes through when facing the placement decision.

In Kathy Lowrey’s words:

I hope this makes some sense because my thoughts and emotions are so scattered lately. I feel like Hubby and I are in an emotional blender.

I've struggled to support myself and Hubby and unless the support was "easy" to give and receive, I've remained silent.

Unless I was sure what to ask for or offer, I've remained silent.

To the majority of my family and friends, I've remained silent.

Now is the time to break the silence because the silence is breaking my heart.

Hubby has had some serious anger issues. Nothing physical, just verbal. And that's not really the problem since we have lived with his PTSD for our entire married life, I'm used to it. In the past, he could leave or I could suggest he leave and go someplace or I could until he cooled off. But now he feels trapped. Trapped by me, the doctors and his Lewy Body dementia. He doesn't want to be here. He's mad at me, the doctors, his illness, the whole world.

If I was in his place, I would probably feel the same way.

He's also sad, very, very lonely, frustrated and scared. All the things I wanted to prevent for him and have not succeeded in doing right now.

All I can do is watch as he fights with his emotions and listen as he vents his frustrations. Most directed at me and admittedly they hurt but I understand where they are coming from so I try my best to ignore the feelings that come because of his words.

What can we do? How can we fix this? We are maxed out on meds and some of my big fears are more would make him "drugged" something neither of us want. He's sick of taking pills anyway and I don't blame him.

He has had some very lucid moments and we have talked about his dementia, his feelings and a few of his fears. Then HE suggested that perhaps placement would be the best.

Oh my heart! I HATE Lewy Body dementia. I hate that he can have these moments of clarity. I HATE that he realizes what is happening. I HATE HATE HATE IT!!!

At his suggestion, we have talked Nursing Home placement on several occasions. Sometimes he says he wants to leave, other times he says a Nursing Home is not where he wants to be, but he doesn't want to be here. Sometimes he says he doesn't want to be a burden. I've tried to assure him that he is not a burden, perhaps difficult at times but never a burden.

He and I have both spoken to our children about it.

I have to add that we are very blessed with the support that they offer us. They may not like the situation but they support whatever decisions needs to be made in the best interest of their father and me. How did I deserve such amazing gifts when I received them?

It took a long time to bring it up to them. Hubby and I both fought emotions about it. We've cried together and separately, I've prayed for and over him. I still fight back tears and it's taken a lot of emotional strength to put these words down. Even more when I hit the post button.

I've read more than once that it's never too early for placement when dementia is a concern. But it can come too late.

Late for the caregiver who is stretched beyond their capabilities and health. Late for the loved one who may do something that could potentially be life threatening to themselves or to others.

And if you're already talking about it, now is the time to make the move.

My head knows all of this, my lips and fingers have repeated it to others. My heart won’t get on board.

I've tried to find things for Hubby to be engaged in yet he refuses. So, I wonder if a different environment and the company of other people would be in his best interest. At least that way he could refuse to participate or engage with someone other than me.

I'm sure it wouldn't help with how he feels about his illness, the doctors, the situation or me and all of his losses but perhaps with others he could "vent" to, it would help release some of his anger. Maybe he could deal with it better. I don't know the answers. I'm grasping anything I can to get even a small hold on a constantly slipping situation.

Neither of us has decided anything but Hubby wants to talk to a doctor about it. He has an appointment in a couple of weeks.

Confession: His wanting to do this feels like a bit of rejection of me but I have to shake that off and realize, this isn't about me, it's about what's best for him.

I did tell him if he wanted, we could tour a facility and nothing had to be permanent so if he did go in and then decided wanted to go home, I would be loading him up and bringing him home.

Please say a prayer for us. We need clarity of mind and sure direction.

 

Thank you, Kathy, for sharing such a personal struggle. 

 

What decisions in caregiving have you been torn up about?  What decisions were easy?  Do you have any regrets about the decisions you’ve made as a caregiver?  Feel free to discuss in the comment section or email me at robertssister@att.net if you’d like to tell that story. 

Decisions in Caregiving

Everyone makes decisions day in, day out.  Small decisions (hmm, should I really eat that piece of chocolate right now?) to big decisions (which school should I send my child to?) to everything in between.

(Of course, the answer to the first question is always: Yes! How can I turn down chocolate?)

Decisions in caregiving can be much more serious with the possibility of significant consequences. 

What treatment should I get for my caree?

Is it time to step in to help my loved one or is it too soon?  Will they want my help or see it as an intrusion?

Is it time to find a care facility for my family member?

Do we try new medications to help with [insert condition/disease/disorder here]? 

In Robert’s case, he was on the same medication for years and still having seizures.  A few months after I took over his care, I not only had taken over his care after he lived independently with slight family oversight for years but I had moved him to a new city, placed him in a care facility, changed his neurologist and primary care physician.

Quite a few decisions which were not made lightly but which could have involved dire consequences if I hadn’t stepped in when I did.  (Short version: Robert and his companion had taken in a homeless woman to live with them and she got into a physical argument with Robert, giving him a black eye.  Other Brother and I got the woman out of the house and, because of a series of other events (recurring infections, the main one), Robert was moved out of the house he lived in for 20+ years.)

Long version can  be found here.

Did my Other Brother and I act too late?  Should we have stepped in before Robert got all those infections and the black eye?  Or did we act too hastily in not letting Robert live independently any longer? 

The timing of these types of moments is never lit up on the calendar with a big arrow pointing to a date and a note saying, “THIS is the day to step in.”

No.  We have to make decisions and we grapple with them and sometimes caregivers still question whether or not this was the time to step in with more help.  Or try the new treatment.  Or place a loved one in a care facility. 

Shortly after starting with a new neurologist, she had a great plan.  Let’s try New Meds!  The seizures may be stopped with this New Med!  The New Meds just came on the market and could work! 

After 45 years of Robert having uncontrolled seizures it was hard not to get caught up in the excitement.  A medication that might relieve Robert from having seizures?  I was reluctant to try something new because even though he still had seizures, he seemed stable enough.  However, I agreed. 

This was three years ago and he was on the new medication for a short amount of time.  Unfortunately, he had such a reaction to the medication (losing his balance, actually not being able to walk), he landed in the hospital. 

Okay, not the best decision but that’s how decisions in caregiving go.  We grapple with them and sometimes they work out and sometimes they don’t.  Robert was immediately taken off the New Med and left on the medication regimen that we know worked as well as could be hoped.  Robert’s balance continued to suffer so we made the decision to get him a walker which he still uses.

Other caregivers go through decisions about placement or treatment every day, giving them great thought, care and always, always doubting if it’s the “right” time or the “right” decision. 

I have invited a few fellow caregivers to be my guest here and share with you the decisions they are wrestling with now.  Over the next week or so, we will share what they are going through when making caregiving decisions. 

I’m interested to know what decisions have you had to make for your caree, your loved one.  Please share in the comment section below or contact me at robertssister@att.net if you're interested in sharing the struggle you've had with a caregiving decision. 

Now, about that chocolate . . . decisions, decisions.