Come learn about this grassroots, nation wide movement to provide caring home environments to hospice patients in the last days to week of their lives.

Christ’s House Hospice Foundation is bringing Kelley Scott (Executive Director of Clarehouse and President of Omega Home Network) to Colorado again this year!

Where: Intelligent Office
(1499 W. 120th Ave, Ste 110. Westminster 80234)
Thursday, November 29, 2018
7 – 9 pm

Seating will be limited, so please let me know if you plan to come so I can reserve a seat for you. We’re also pleased that folks from Lazarus Gate hospice house project (for the homeless) will be able to join us this year.

Thank you Mike Krieger from Intelligent Office for providing the space for us to gather and learn how to bring these needed homes to Colorado!

 

Recently I’ve been cleaning things out, sorting through files and papers, and I ran across my new employee orientation book from HOSJ.  The “Our History” section is filled with information that I wish I could share all of it here.  Here are the highlights that still make me grateful to have been a part of HOSJ for a short time, and even more grateful to have been trained there, a place I refer to as my “first love” of hospice.

“The Sovereign Order of Saint John of Jerusalem opened the first hospice in 1048, a medieval way-station for travelers journeying to the Holy Land.”

“The Hospice of Saint John was founded by Father Paul von Lobkowitz, O.S.J. in 1977 and is the second oldest hospice in the United States.”

“Since it’s founding, the Hospice has provided comfort care to over 20,000 terminally ill patients and their families.”

“Hospice care seeks to alleviate physical, emotional, and spiritual pain, and to control the accompanying symptoms.”

“The Hospice of Saint John is a Religious Foundation, but a non-sectarian health care environment.”

It leaves me wondering what the number cared for was at the time of it’s closing in 2013.  I can’t believe it’s been almost five years since then, and what a huge hole it has left in the community.   There were two home hospice teams and an inpatient unit.  The inpatient unit could be used for Respite stays, or General Inpatient stays for symptom management and was licensed as a long term care as well.  Many hospice patients were able to finish out their days at HOSJ as Routine hospice patients, and didn’t have to worry about where they would live.

Last November, Christ’s House Hospice Foundation brought Kelley Scott (Executive Director of Clarehouse, and President of the Omega Home Network of homes) to Colorado to start spreading the word about the Social Model Hospice House (SMHH) concept.  A gentleman that Kelley knew joined us for a small group information session,  his goal being a SMHH for the homeless here in Denver.  The next morning, Kelley was at Denver International Airport awaiting her flight back home when she received a call from a woman here in the NW Denver area.  She also had a hospice house project in the works.

Kelley asked me to return that call and we spent about an hour on the phone sharing our missions and projects.  Turns out, we both worked at HOSJ and never met.  She’s a Social Worker, I’m a nurse.  How is it that two people that worked in the same place but never met have placed upon their hearts a burden to open homes to care for the terminally ill?  Some folks would say coincidence.  Not me, it’s God’s call on my life.  Since HOSJ’s closing in 2013, we know there is a need for these homes.   I thought I was the only one heading down this path, now there are three of us to share this journey with and support each other along the way.  On the 19th, we will be meeting with department of health employees to clarify our projects for them and to make sure we are proceeding correctly with regard to regulations.  Please be praying for us!

 

Just a little over a year ago, a co-worker and fellow hospice nurse took her own life.  The state of shock didn’t begin to wear off for several weeks.  At one of the IDTs, we remembered her amidst the silence, amidst the tears that could have filled buckets.

At another IDT/remembrance, we were given the opportunity to take a small stone from a bowl full of them, and either add it to an office fountain, keep it, or find another way to remember her with it.  There were white stones, sand colored stones, gray stones, clear stones.  Not consciously thinking about it, my fingers absentmindedly picked out a black stone.  I don’t know why I chose a black stone. That little black stone with a smooth finish, almost slick. Nearly flat, with a triangular shape, not shiny, but more of a matte finish. Maybe I chose black, as a perfect representation of the sorrow and darkness she must have felt, or of the sorrow that blanketed the meeting room that day when the air in the room felt deprived of oxygen, so heavy no one could breathe let alone speak.

I’ve had this little black stone since that time, put away for the day when it was time to take it to her last known area and add it to the surroundings.  On the actual day of the one year mark, I took time to think about her, how smart she was, how beautiful and radiant her face and smile were when she was happy (especially when her rescue pups were with her).  Unfortunately, that one year mark was also the day we put our dog down.  So giving myself some time in between, today was the day to deliver that little black stone.

Her last location happens to be my favorite spot on earth, the place where I want my ashes spread after I’ve died, and almost exactly where I’ve envisioned my ashes will be spread to the wind.  It was the  first place I explored when we moved to Colorado 23 years ago and is my “go to” place when the mountains are calling.  Given all these factors, it made it that much harder knowing my co-worker was not at peace there, with the majestic views and the mountains all around.   Or maybe she did finally find peace.  I pray she did.

These remembrances, memorials, goodbyes, rituals, whatever you choose to call them can occur prior to death, as someone is dying, right afterwards, or at a later time.   There are no right answers because everyone handles grief differently and with different timing.  Literally, sometimes it feels as though it is two steps forward and three steps back but the point is to keep moving towards accepting and acknowledging that loss.

At the hospice where I trained, there was a memorial tree where families could add a leaf to the tree with their loved one’s name on it.  Usually, hospices, and now Social Model Hospice Houses, have annual remembrance times (candle lighting, tree lighting) where the names of those that have died in their care are read aloud.  What a perfect way to honor someone, just by saying their name out loud.  In one or two words, you are acknowledging that they lived, that they were a part of this sometimes chaotic process we call life, and that they remain a part of your story going forward.

 

 

A couple of months ago I had an end of life conversation with someone regarding their relative who is in their 80’s and terminally ill.  This relative had a recurrence of cancer and now the family was wondering if it was time for hospice.

While almost finished with a round of palliative radiation,  things had taken quite a turn; this person was now resistant to food and fluids, didn’t want to take medications, was very confused, incontinent and weak.  Yes, it’s time.  It was time several months ago (except for the palliative radiation treatments).

As a home hospice RN case manager, I have made initial visits to patients who were actively dying (admitted to hospice the night before after leaving the oncologist’s office), AND who still had an appointment on the books with their oncologist for the following week.  If our healthcare providers cannot initiate candid conversations regarding end of life, it is up to us as family members and our society to normalize those conversations.  These kinds of disservices to patients and families do nothing except promote the myth that hospice is for the last three days of your life, and hospice is going to start “the morphine.”  Well, when I get a new admit that is actively dying and their respirations are 30, you can bet I’m going to start “the morphine” (or oxycodone, or dilaudid…whatever they have available).

Sometimes it is the patients or family members that are waiting for their miracle and they don’t want their provider telling them “I’m sorry, there is nothing more we can do.” They want to try every possible treatment available.  They just want their loved one healed.  Sometimes that healing comes in a different form that what they are wanting.  They want their loved one healed from this pain, nausea, diarrhea, shortness of breath, wounds, weakness, from being poked and prodded, from having to go to hundreds of appointments, from whatever is taking the life out of their loved one.

If we can somehow  get those patients three to six months prior to actively dying, there is so much that hospice can do.  Not just symptom management, but putting the pieces together for the family as to the course of this illness/disease that is occurring and what is coming next.  In hospice, we don’t do anything to shorten or lengthen the natural life.  The education, support and comfort hospice can offer as one nears the end of their natural life can be invaluable.  We need to normalize death as a part of living once again, but we also need more than three days to properly serve the patient and family.

 

Yesterday, we had to put our dog, Red, down due to illness and severe hip dysplasia.  For the first time in almost 11 years, he isn’t here.  For the first time in almost 20 years, we don’t have a dog.  I know he was a dog, he wasn’t a human.  But I think there are a lot of parallels that I could post here that just might help someone as they notice their loved ones decline.

 

When I work with hospice patients and families, I’ll do what I call “Putting the Pieces Together”.  It’s a time of reflection, a summarization really, of when the patient started to decline, started to feel poorly, started to think maybe something was wrong.  One of my favorite tools to do this is called “Preparing for the Death of a Loved One” (Romayne Gallagher, MD CCFP).

Many hospice patients can pinpoint when they started feeling badly.  But more often, it’s generalized.  You know, they started feeling more tired.  Their appetite wasn’t what it used to be (which happens during normal aging, right?), they were losing weight without trying, they didn’t feel like going anywhere or having anyone over; slowly narrowing their circle of family and friends in order to preserve their energy for the ones they really want to spend time with.  Sometimes getting out to see the doctor is all they can  muster the energy to do.  Sometimes it’s too much to even take a shower or bath.

Any or all of these things can cause someone to begin having illness related anxiety. I remember about four or five months before my mom died, she could actually verbalize that she was afraid to take a shower, that she felt something bad was going to happen (despite my sister being there every time to help her and assure her).  It’s an old saying that cardiac patients will have a feeling of impending doom prior to a cardiac event, alot of them do.  Maybe there is something to just a generalized anxiety when we start to decline.

We noticed Red begin to have anxiety in the summer of 2016.  For nine years, the only anxiety he had was when there was thunder and lightning.  In 2016, it became more generalized.  He started actually chewing through the wood on our front gate, and escaped several times.  Only to then pace back and forth trying to get back in.  After a trip to the vet just to make sure he was ok physically, we started him on Xanax on an as needed basis (once or twice a month at that time).

He then started to eat less every day.  You could see he was gradually losing weight.  He didn’t run around the yard as much as he used to, and taking him on walks would really take it out of him.  He was moving more slowly, but didn’t seem to be in any discomfort so we chalked it up to him getting older.

Then, about a year later he developed a small lump in his chest.  It didn’t bother him for me to feel it.  Dogs sometimes get fatty tumors that are benign.  He started skipping his food for a day or two.  He’d had more weight loss (his collar and harness were loose), was even more tired, was sleeping a lot more and subdued overall.  After another vet appointment with noticeable muscle atrophy and the fact that he didn’t seem to be in pain, we decided to just watch him.  As a hospice nurse, I let the vet know that if he did have lymphoma or something like that, we weren’t going to treat it with aggressive measures.  We just wanted him comfortable.

From the fall of 2016 to January of 2017, he had developed multiple lumps and sometimes they did bother him.  His back end seemed tighter and stiffer. He was drinking water only every other day.  Since he seemed to be in pain, we headed to the vet.  We decided on blood tests and xrays (his blood tests from two years prior were “the best I’ve seen in a dog that old” per his vet).  Now, it looked like there was some type of inflammatory process in his liver and the xrays revealed severe hip dysplasia (we were expecting arthritis).   We’ve had a dog with severe hip dysplasia and Red didn’t exhibit any of the classic signs which told me this old dog had a very high pain tolerance to start with.  Sometimes I wonder if the diagnostic tests we run tell us more than what we really want to know.

The vet wanted to do a fine needle aspiration of his liver to either confirm or rule out a hyperplasia tumor syndrome, which I declined.  She seemed to have forgotten that our goal for him was comfort measures, not invasive or aggressive treatments.  Red didn’t like to be poked and prodded already, so making this decision was a piece of cake.

Coming out of the sedation from the xrays was the worst part for him.  He moaned and groaned and cried all the way home.  He had a hard time supporting his back end and couldn’t swallow until the next day.  I’ve had many patients tell me that they feel they started to feel poorly after “that first surgery, I think it was the anesthetic” and “It gets worse after every surgery.”

Being sent home without pain meds for him over the weekend made it really easy for us  to switch to a mobile vet whose website seemed like they would be on board for comfort measures only, providing palliative/hospice care to Red in our home.  No longer would he have to go out to the vet (although he missed the car ride), but the anxiety it was producing in him just wasn’t worth it.  And we weren’t going to do any more blood draws either, so an in home vet is just what we needed.

We started palliative care for Red on February 8th.  He was receiving 100 mg Benadryl daily (this vet seemed to think his lumps were mast cell tumors, a type of canine cancer), 100 mg Tramadol daily and 25 mg Carprofen daily for pain.  This seemed to work well for two to three weeks, but then the nausea started.  We added 0.5 mg Xanax daily for nausea and that helped.  Driving out to our vet in a dark rural area to pick up the Xanax, my daughter said “I feel like we’re out making a drug deal in the middle of the night.”  Well, that’s exactly what we were doing!  I so appreciated the ability to get meds on a late Friday night and it gives me a whole new appreciation for 24 hour pharmacies.

March 12th, in an hour’s time, Red did something to his right front leg and could barely walk on it much less support his body (along with his bad hips) for any length of time.  He seemed to be sleeping 20 out of 24 hours a day now.  By simple mathematics, when you’re sleeping 20 hours a day, it doesn’t leave much time for eating or drinking…even for humans.  Then all of a sudden, his belly started to look distended.  When he pooped in the morning, we’d be watching to see what color it was (usually an orange or clay) which likely indicated liver involvement.

Fortunately, our daughter had been able to come home to say her goodbyes (I know she was concerned that I might be “rushing things” since I’m a hospice nurse.  Even though she knew better, I assured her I was not that kind of hospice nurse).  Our son made a couple trips home to say goodbye to his buddy, and my husband was just home for a few days prior to yesterday.

Red had a good last day.  He died in the comfort of his own home, sprawled out in the middle of the family room floor.  Peacefully, quietly, and in his home where he loved to be. He was such a good dog, I can’t imagine him leaving us any other way.

 

 

 

I wanted to tell you one of my favorites…a story for those that think Hospice is just sad and gloom and doom all the time.

A few years ago, two of my patients were brothers, both in their 90’s. As expected, the older one was more reserved and the younger more gregarious.

One afternoon when I arrived at their Assisted Living Residence, they were sitting side by side out on the patio for snack time. I grabbed a patio chair and sat facing them and quickly noticed that they were having trouble juggling their cups of juice and trail mix (nuts, raisins, candies, etc) also served in a cup.

I looked for a little table that I could set between them for them to use so they wouldn’t have to keep juggling. No table available. So I sat back down and held my hands out and asked “is there anything I can hold for you?”

“Just my nuts”, said the younger brother (94 years young I think then).

He and I laughed until we were crying, I was scared he might aspirate. Meanwhile his older, more dignified brother (96?) Just shook his head like “there he goes again.”

 

I am currently reading “The Kindess Effect” by Jill Donovan, the founder of Rustic Cuff.  What a great book!

In one of the chapters, she talks about just following your “knower” (I would say Holy Spirit) when you’re being nudged and moved to act in kindness towards someone else.

It got me to thinking about some of my hospice patients who have started off as very “tough” patients/families.  They want you there first thing in the morning, on a certain day or at a certain time which should never change.  They appear to be very “in your face”, they tend to call more than usual.  Some healthcare workers would call them “needy”.  I don’t like that word and here is why.

They are doing the best they can in the situation, and you know what’s behind the over assertiveness?  It’s fear.  It’s hard admitting to hospice, not just for the patient but for the family.  At end of life, the patient doesn’t have much left that they can control.  The families, even less.   So if I, as a hospice nurse, can look at the situation in the proper perspective, it changes me.  It challenges me.  To be the best I can be, to be as patient as I can be, to be the best listener I can be, to be the best teacher/educator that I can be, to be as calm as I can be, to be the most kind that I can be.

And you know what?  Once the patient and family get into the routine of hospice, they settle in for the most part.  They relax.  If something is going to change (like time of arrival or day of the week), you just coordinate that like you would any other appointment (friend, spouse, kids, doctor, dentist).  I admit, sometimes, I’ve changed it up just to see how they react.  Not on the spur of the moment, but a week or so in advance.  How they react tells me a great deal about where they’re at in their hospice journey.  Do they trust me?  Do they trust the other hospice team members?  Do they trust I’ll still be there when I said I would?  Do they call just to verify prior to me getting there?

Something else I’m looking for: as hospice patients settle in they start thinking of and considering others feelings, situations, challenges, etc.  They are more empathetic when talking about their family and friends who might be struggling, or it could be something they’ve seen on the news.  When they are able to put aside their own current struggles for a moment even, it tells me they are more at peace, they are at a point of acceptance in their life, and their kindness has resurfaced.  I love when that happens 🙂

 

Yesterday, a Facebook “memory” popped up that made me giggle.

The “memory” was from several years ago about how one of my elderly female hospice patients was considering how to maneuver the stairs in her home.

She was as stubborn and feisty as they come.   When she first admitted to hospice, she was adamant that she and her daughter kept their long standing weekly lunch and nails date.  Their weekly dates continued for a couple of months until mom started her final decline and became too weak to get out of the house anymore.

It was at this point that her daughter requested a hospital bed was brought in to help her mom conserve energy and help her get in/out of bed.  When my patient saw the bed, she stated very (VERY) clearly and colorfully there was no way she was going to use that bed and demanded “get that bed out of here.  When I go to bed to die, it will be in my own bed!”  We couldn’t even get permission to leave the bed in the study for the time being.  So, the equipment company came and picked up the bed.

Which leads me back to the stairs.  My spitfire patient, is just standing there and staring at the staircase.  To which I offered, “your cane might help.”

“Aw, hell……”.  She proceeded up those stairs, took to her own bed and didn’t come down until the night she died.  Her tenacity, her steadfast determination to control what she could control at the end of her life still brings a smile to my face.  I kinda want to be like her.

 

 

 

 

Today truly is a happy birthday 🙂
This week we received a letter from AmazonSmile that some lovely person(s) had selected Christ’s House Hospice Foundation as their charity of choice when shopping on Amazon (Amazon then donates 0.05% to the charity). The letter from AmazonSmile instructed us to register on their site, provide some information and we’d be on our way.
We looked into this last year and determined we were not eligible. Today, we received confirmation that we are in fact eligible and we are good to go!
Please consider supporting our foundation committed to continuing the conversation about hospice and end of life. Our ultimate goal is a Social Model Hospice House (a residential care home for routine hospice patients in their last days to weeks of life).
Humbly I ask that you share our link with your friends list if you feel so inclined. It is also a good time for us to send out requests to our friends lists to “like our page” so you may see that request if you haven’t received that already.
Thank you!
The specific link to shop and benefit Christ’s House Hospice Foundation is

Support Christs House Hospice Foundation by shopping at AmazonSmile.
When you shop at AmazonSmile, Amazon will donate to Christs House Hospice Foundation. Support us every…
smile.amazon.com

 

It’s time to get back to writing my second book.  The first book, From Hospital to Hospice – One Nurse’s Journey towards Grace at the Bedside was a parallel of my own family’s hospice journey alongside my early experiences as a hospice nurse.

Admitting to hospice can be such a scary time for patient/family/loved ones, that this second book will be more “technical” in nature of what to expect from the first phone call to the last.  I’m hoping it will be more of a handbook for readers, and something they will keep within easy reach when they have simple or complicated questions about their hospice admission, graduation, revocation or discharge.

Originally the book title was going to be “The H Word” because nobody really likes to say the “H” word.  I believe the reason for that hesitancy to voice the “H” word is due to fear and lack of understanding of what hospice really is.  There are so many “H” words that could be involved in hospice care (healing, hope, hospice, hospital, help), but a more appropriate title for this second book might be “Going Home on Hospice” or “A Hospice Handbook”.

In this book, we will get to know and follow a woman with a reoccurrence of breast cancer, and her decision to enter hospice care when her current aggressive treatments are no longer effective.  Stay tuned!

Susie