Crossing through the threshold to hospice care

Crossing through the threshold to hospice care has been one of the most difficult and emotional experiences I have ever had.

On Friday, February 24, Adriana was re-admitted to the hospital only 10 days after her previous stay of a week, to try again to get her lower back and hip pain under control. Although she could walk and move about she was in great pain. On Monday she had day 11 of 14 of lumbar radiation and WBRT which she finished on Thursday as an inpatient. By Monday she had lost all strength in her right leg and by Wednesday she lost the use of both legs due to strength although she still had feeling in them. The loss of the use of her legs was exceptionally distressing for Adriana.  The plan early in the week was for her to go to a rehab facility in order to regain strength and learn to function using other methods at home including Hoyer lift and sling and slide board for transfers to the wheelchair and bedside commode. On Wednesday the Radiology Oncologist apologized and said the lumbar treatment didn't work as he had hoped. Her oncologist visited later and advised us to start home hospice care with a planned discharge on Saturday, March 4. He advised that she could resume taking the TAF/MEK that she had left at home but to not expect the same results (if any at all were to be had)  as she had experienced in October, when  first diagnosed with LMD, which completely resolved her pain within 5 days, as her “tumor load” is now significantly higher.

Although the social worker at the hospital as well as several others tried to reassure (me) us that hospice was the right path to take and that their significant knowledge of pain management and “comfort” (I hate that word and it's usage) would help us. We were quite skeptical (distressed) about what was to come. As much as we thought we we prepared for what this beast had in store for us we were not, and I was especially distraught. I could only see hospice as being there to help her die, and we were not ready for that yet. Knowing there really is no other treatment available, we still maintained hope in the BRAFi and planned on learning to live without the use of her legs as many others do every day due to car crashes and the like. The latter part of the week's stress was enhanced as Adriana was urged on several occasions by the attending doctors and hospice representative to complete a Physician Orders for Life-Sustaining Treatment (POLST) form (esentially  DNR/feeding tube/treatment desires in the event you code). She has also been  encouraged to change her choices by the hospice folks as her current choice to live isn't completely inline with hospice goals, creating a great deal of stress.

  During the early part of the week I purchased an adjustable bed frame for our mattress that we had purchased the prior week in hopes of allowing her something similar to the hospital bed so she could sleep. During the latter part of the week I scrambled to make plans and get supplies together to modify our living area (now reduced to a small bedroom, bathroom/laundry room with 36” stand up shower and. 25' hallway on the ground floor of the 4 level home that we live in.)  Items of relative urgency included moving the TV and cable to a wall mount in the bedroom to provide entertainment, building a plastic platform in the shower and ramp outside in order to easily move a rolling shower seat/bedside commode with occupant in for showering by one person, and modifying a sprayer attachment to the sink/toilet area to be able to clean the bedside commode in a sanitary manner as no one cares to have that next to their toothbrush or  where they shower. The most daunting was learning from the hospital OT/PT  and nursing staff how to safely transfer Adriana to the chair or commode without severely bruising my lovely wife or injuring myself. Also overwhelming for me was just the basics of toileting, cleaning and dressing. These are things you learn to do for yourself at a very young age and then relearn them for your children whom are significantly smaller than an adult. Most homes are not built ADA/wheelchair friendly and education for the tasks at hand are not taught in high school. No one ever thinks this is going to happen to them let alone plans for it. Care-giving is now redefined for me, although I am sure many of you have already achieved this level. With meds every 4 hours along with all of the other tasks including the chores of everyday living along with the fact that I am essentially her only caregiver, Saturday came and I was overwhelmed as I questioned if I could competently live up to the task. I only felt that I would miserably fail in my wife's time of  most need.

It was a pleasant day when we got home from the hospital and we went for a wheelchair walk down the block. Calm came to me as I realized we were home together with her pain under control, just as we had planned on the day that she went in to the hospital with the only difference being she can't walk right now. 

Well, it's been just over three weeks now and although getting up in the middle of the night for meds and toilet have been difficult, the daily routine is becoming a bit easier. Figuring out how we are going to pay our bills and get money for other needed home modifications along with regular living costs is a challenge, as I am now a full time caregiver, but we will get it figured out. Although hospice has provided some supplies and equipment we have found it necessary to purchase some of the (not inexpensive) equipment ourselves as it is more convenient for use in our home and  help maintain our independence. I know that hospice is here to help, but I am constantly reminded that it has to operate as a business. We have had to lobby for a specific (more expensive than the cheapest generic, but not name brand) brand of lidocaine patch as they work better. She is now being encouraged to switch off of oral delayed release Oxy (which is working well right now) in favor of fentanyl  patches due to cost. In addition, always in the back of my mind is that hospice's goal is not to prolong (or) shorten life, only to provide “comfort.” She is not done yet!!!

I have to say that one fear when starting hospice was that she would no longer have “medical care from those that we are used to” (did I mention I don’t like change) but the folks at Seattle Cancer Care Alliance have been here for us. The oncology nurse has called to check in, the anti-coagulation team has called about changing her blood thinner dosage as she had lost weight while in the hospital, and most especially the palliative care nurses have called me at least once every week and I have also called them with my concerns. Those ladies have truly been my lifeline in all of this.

About a week and a half ago Adriana was able to start moving her feet then her legs and as of right now she can kick me when she is sitting ;>)  pull her legs up toward her chest with effort and lift her hips with her legs slightly to help get her her pants on. We attribute this to her hard work and desire to live. We believe the TAF/MEK to be providing substantial albeit slow benefit. Her pain is most often at a 0 and she has mostly stopped taking Dilauded which was 4+ mg every 4 hours when she came home and are considering reducing her oxy. I have focused on making every effort to return to normal everyday environment and to live our life. We have been in the car, to the store and out to the waterfront beach that we enjoy with the dog. She has had a few setbacks, diarrhea over the last week has been a challenge.  We have been unsuccessful in defeating it with Imodium, pepto, and BRAT diet. She stopped BRAFi for 2 days (Fri-Sat) and thought on Sunday we might have it licked with no episodes (although no BM either) so she restarted BRAFi on Sun as pain resumed in her hip early Sunday morning. Adriana really believes the issue (in addition to nausea) is a side effect of the extensive lumbar radiation rather than the BRAFi as they have never been a problem before. I will post separately about the issue seeking advice as many might not read this far. I suggested that we stop the TAF/MEK again but she says no as she doesn't want the pain to return. Sadly also Adriana's dad passed away on Thursday and she could not be with her family in Ohio, we are thankful for Skype and Facebook to help us to be with them and they with us.

We continue  to live our lives, make memories and love one another and our families. We are grateful for all of you. We grieve with your losses and challenges and also feel the joy of your successes.

Best wishes to all.

Rob and Adriana