Thursday, January 04, 2024

We are now in Hospice Care.... but am I next?

 The Christmas holiday has come and gone.  Basically, I would call it a success.  The family was all here.  It took several of us to get Pam dressed and presentable.  She opened some gifts.  I felt a little funny about that.  The thought of Christmas shopping never even crossed her mind.  Holiday shopping was always very important to her.  She did love the LL Bean coat I bought her.  After gifts, we sat at the table and had dinner.  She didn't say a word the entire time.  But she smiled and laughed at the grandson's antics.  She ate some dinner.  Then she retired to the recliner for a nap.  She was there and she participated.  That has to be a success.  We even took some family photos to remember it by.

Then came New Year's Day.  It is a major milestone in our dementia journey.  It was a good day for both of us, but not so much for my emotional side.  Today Pam was admitted into in-home hospice.  We will no longer worry about her blood sugar, or her blood pressure, or her mammogram.   We will now just focus on the symptoms of her Lewy Body Dementia and how we can best keep her safe and comfortable.  Her primary care provider was an advocate.  The doctor continues to be concerned with the burden on me.  Without me, Pam can not stay at home.  This will bring new, specialized resources to the team.  But we will not stop using the wonderful home aid, from Home Instead, that we bring in three afternoons a week.  She and Pam seem to have a good and respectful relationship together.  It would be nice if Medicare paid for that also.  But it is too important to Pam for it to stop.

The process went very smoothly.  Behind the scenes, the doctors decided that the entry criteria were met.  All of the information that they needed was in our medical providers database.  A nurse runs through the medical history and verifies the need.  I got a call to set up the in-home meeting.  The intake nurse runs though all of the benefits, what is covered or not and asked some questions.  I felt very comfortable going through the meeting with our three daughters present and asking questions.  I have tried to be very transparent and inclusive when  it came to our daughters.  I felt that they needed to know exactly what was going on at all times. Then comes decision time.  If you want to take this step, they are prepared.  The key team members are identified and the paperwork is ready for signature.  It was done!

 The next day, we met with the medical social worker, who reviewed benefits and worked at building a rapport with the family.  This care is as much for the family as it is for the patient.  They have as much support lined up for the spiritual and emotional side as they do for the medical.  The following day we met with the lead nurse on our case.  In the background, they have already checked to make sure that you are not an abuser of scheduled drugs.  They check both Massachusetts and New Hampshire PDMP.  Of course, they do not tell you that.  I wonder if George Orwell knew of DPDM?  But I digress.  The nurse reviews the benefits available from the medical perspective.  Pam slept through the visit with the social worker and most of the visit with the nurse.  She did wake up right near the end and greeted the nurse.  The nurse assesses the severity of the situation and schedules regular followup visits.

My first impression is that these folks know what they are doing and have the process worked out.  There was no pressure from them to do this.  If you feel it necessary, you can always pull out of the program.  There are a ton of benefits for the family, as well as the patient.  They must be connected to the VNA (Visiting Nurses Assoc.) because I see some major similarities between the two care plans.  Although we are going to keep Pam at home, this provider also has a hospice facility nearby.  But that is the facility that my father was in a decade ago.  Based on the experience with my father, Pam will never see the inside of that building.  But so far, the experience has been positive.

So, how am I feeling about putting Pam into hospice care?  To be honest, I am not feeling much.  The thought of giving up came to mind for an instant.  But what does giving up mean in the context of a progressive and fatal disease.  I am grateful for the full involvement of our three girls.  They have been advocating this for a while as a means of providing additional support for me.   I am probably the typical male that is reluctant to make use of the wide variety if resources that are available.  But I often think of the time our oldest had a major medical issue and was lying in recovery writhing in pain.  All I wanted to do was to go run ten miles... alone!  I am still brought to tears at times seeing what this disease is doing to Pam.  When the end does come, I am sure that I will be a basket case.  And I am starting to worry about my own cognitive situation.  I feel like I am having trouble with concentration, especially when reading a document.  I feel the need to get up and walk around.  Hopefully, I am just being a hypochondriac. 


  1. You need to do whatever gets you through the night, Bruce. Without scrutiny, without judgement. As Rozetts, we don't like not having control, but sometimes there is simply no other option. Do your best. I know you will. Rozett love coming at you and Pam and the girls.

  2. Thanks for sharing. I'm glad that you are accessing the help available. Saved my life!

  3. Bruce,

    Best wishes for a Blessed Holiday season! It is good that Gmom and your family had a positive holiday season; it is especially good to know that she interacted with your grandsons. You and they will have no regrets. It is good to know you are taking advantage of the help that is available; it is good to have someone help share the many burdens. God bless!