a blog about Kilt and her kids plus Trouble our JRT mascot.

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Sequim, Washington, United States

Saturday, January 14, 2012

Hospice Care

I'm going to give you my take on Hospice care.  Pop was placed on Hospice a few weeks before he passed away.  He was starting to require more care than usual.  He needed assist to the bathroom, he had some falls at home (even under the close scrutiny of my sister-in-law and Jim) He had moments when he wasn't himself, plus, his appetite was dwindling.  All signs that the family needed help and "advise." 

Hospice evaluated Pop and I, as his health care surrogate, signed him up.  They brought in a hospital bed, wheelchair, raised toilet seat, oxygen (if needed), medications as needed, and a baby-like monitoring system put in place which came in handy for nighttime monitoring.  Of course, I'm sure Jim and Linda didn't get much sleep listening to the monitor, but at least they knew when he would stir and be able to get to him before he got out of bed on his own.  For awhile, Pop was doing pretty well on just a Tylenol #3 at night for pain.  Why did he have pain?  He had just finished 7 days of spot radiation for his skin cancer on his face. The radiation, even though only 45 seconds or so a day, knocked him for a loop.  The tumor shrunk, but it had spread to the inside of his mouth into the salivary glands.That is when he had his first fall.  That was the start of his "big" decline.

Pop's hospital bed overlooking the Indian River

One of the docs prescribed Ativan for him.  This was to ease his anxiety.  But, remember, Pop has dementia.  The Ativan made him hallucinate and PICK at his face even more than normal.  Some of the side of effects of Ativan are restlessness, inability to urinate, increased agitation, inability to sit still, etc.  These are not normal everyday side effects, but with dementia patients you have to really careful what you  prescribe.
Linda and Jim stopped the Ativan immediately. It seemed like a good idea, but it didn't work for Pop.

Nurses came to the house several times a week and evaluated how Dad was doing.  They told Jim and Linda that their goal for Pop, who was an aeronautical engineer, was to make sure that when it was time for him to land the plane, that it would be as smooth as possible.   Good on them.  I like that.

Hospice didn't come without a glitch or two.  Nothing in life comes absolutely perfect.  There were a few bumps in the air.  Fasten your seat belts. Several days before Dad was placed on in-patient Hospice care, the nurses didn't assess his level of anxiety correctly.  If I had been there, we might have kept Dad at home.  He needed some big time anti-anxiety medications and something stronger for discomfort.  Dad was NOT able to tell you how he felt.  The man NEVER complained.  But, he did say he felt LOUSY and kept asking Jim if he was dying.  He had pretty much stopped eating and Jim and Linda held his routine medications from him, because they were too difficult to get down him.  These were  RED flags, no doubt.

Harper Hospice House

Finally after some 48 hours of no sleep for anyone in the house, Pop was transferred to inpatient Hospice care.  I called and spoke to Jim, then spoke to Linda, then spoke to the doctor, then spoke again to Linda.  Easy assessment.  TIME for me to come.  Plus, I had a vision the night before that my Dad was calling me to help him.  All of the women in my family back to my great grandmother have some psychic intuition or whatever you would like to call it.  I have learned to LISTEN to it.

When I arrived, Pop looked almost comatose.  It was a bit frightening, even to  me, as a critical care nurse.  And, upsetting, because I didn't know for sure that he knew I was there.  We sat down with the Doctor, social workers, etc. and asked that the medications be administered on a PRN (as needed) basis instead of routinely.   Hospice is (to me) like a "legalized" Dr. Kevorkian.  Now, I'm not sure they would like me to make that analogy.  But, I'm here to tell you folks....this is the way to go.  They promised a quiet, safe, and smooth landing and that's what my father received.  Hospice is NOT there to fix the patient;  they are there to help the patient pass comfortably.  They are there not only for the patient, but for the family. They are there to help the family understand the dying process.    God Bless them.

No IV's, no oxygen, a urinary catheter to keep him from wetting himself, Roxinol (liquid Morphine) taken by syringe sublingually and Haldol (anti-psychotic/anti-anxiety drug,) also, taken by syringe inside his mouth.
We held the Ativan.  They normally would use that drug, also.  He was turned every few hours and Linda and I would do his mouth care.  Towards the very end they administered a few drops of Atropine to help dry any secretions.

Pop woke up the next morning.  He smiled at me and gave me his normal "Thank-you" when I told him he was the world's best father.  We showed him an old picture of my Mom.  He took the photo and clasped it to his heart.  He had his Duke University hat right next to him.  He never went out without it. The Doctor came into assess him and he kicked the Doc out of his room (My most favorite part other than putting Mom's picture to his heart).  He said, "I want you OUT of my house and OUT of my house now."  The Doc left. :0)

We gave him another dose of Roxinol, turned on some Big Band swing music that he so loved and he landed his plane without a single bump!  He just stopped breathing as I held his hand.  Folks...it doesn't get any better than that when it is your time to go.  Big thanks to Hospice.  And, I will never be able to THANK my sister-in-law and brother enough for caring for Pop for the last 3 years in his own home.  God Bless them.

Rest in Peace, Pop



Chris Murphy said...


Thank you for sharing your experience. Your love for your father springs from your every word and is lovely to behold.

You have given him a great gift - quite possibly the greatest that there is except, perhaps, for giving birth.

Your impressions of hospice care are very close to mine. They assisted transition for both my husband and mother. I, too, give thanks for their compassionate non-judgemental and unwavering commitment to care, comfort and peace.

Chris xo

Karen said...

Wipes tears away....
Thank goodness for Hospice.

Laura Carson said...

I have tears in my eyes as I've read this. You and your family are in my thoughts and prayers. I'm sorry.

Anonymous said...

Dear Cousin Suzanne,
Thank you for sharing your father's love. Our Dad also kicked the Doctors out of his room! Your words have given our Mom love, peace, and understanding.
Thank you.
Aunt Jeanette and her Seven
Elizabeth Housely (Bew) Albright
Barbara Ann (Bew) Freeland
David Fitzsimons Bew II
Diane Nevin (Bew) Swanson
Marie Ann (Bew) Gilbert
Bonnie Jeanne (Bew) Pierce
Joseph William Bew

BCxFour said...

I continue to think of you and your family. Hospice was a blessing when my husband's mom slipped away. It was also a long haul, parkinsons & dementia. Their caring & loving staff were there for my husband and our family, made all the difference in the world.