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Crossing through the threshold to hospice care

Forums Caregiver Community Crossing through the threshold to hospice care

  • Post
    adriana cooper

      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

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          Rob and Adriana,

          My heart goes out to both of you.  Thank you for sharing such raw emotions along with the complex practicalities of dealing with the problems of everyday living as melanoma progresses and thing become ever more difficult.  Rob-your love for Adriana shines through your posting.

          Best wishes to you both and the rest of the family, I really hope you can continue to  grab some more of the good times and make more happy memories in spite of the recent set backs .

          Internet hugs


          adriana cooper

            I would also like to apologize for not being able to contribute much to the group recently, as I have been time challenged.

            Although our current situation is at times extremely challenging, I would do it every day for 100 years in order to have the time with my best friend, the woman I love.



              I won't lie, I couldn't stop the tears while reading. Rob, you're an amazing person and you were truly placed in Adriana's life for a reason. It's so good to hear she's kicking you and you are both making the most of every day. I hope the diarrhea situation gets under control, wish I had some advice there but I've yet to deal with that side effect. 

              Sending much love and hugs to you both,

              snow white

                Thank you so much for posting an update on Adriana, your (and Adriana's) input on this board has been invaluable to me especially when Dad was diagnosed with LMD.  True to your words to me, you have continued to live your life and enjoy every moment with your beautiful wife.  I am so touched by your words and know how absolutely crushed you must be, but also hopeful at the same time.  Adriana is so lucky to have you in her life and vice versa, being a care giver is one of the most challenging things that a person can do, but when you love someone it doesn't matter.  I wish i had some fantastic words of wisdom for you, but I do not, except to say: keep doing what your are doing, love each other more every day, make memories, laugh and cry together, those are the important things as you have advised me.  I wish you both only the best, I wish for Adriana to continue to be at a 0 for pain.  I think of you often and pray for you to have continued strength.

                xo Jen


                  Rob, this is such a raw and honest post, and yet so filled with love.  You are doing an amazing job in being there for Adriana; she couldn't ask for a better caregiver.  I hope and pray that you find yourselves making many more lovely memories and that Adriana gains strength and stays pain-free.  


                    Rob, i agree with all the other posters, how can i not respond too?, I am completely amazed by the pair of you – you are both incredible. Had to re-read your post to do justice. Its amazing our poorly our houses are designed, unfortunately i am not practical so have no idea how to fix, wish i could do a fraction of what you have done. Will pray for both of you, thank you for posting and good luck

                    adriana cooper

                      Folks, your support means more to us than I can possibly put in to words.

                      Thanks, Rob and Adriana



                        of course we read the whole thing:) We also understand. My son is 19. We have been doing this for almost 3 yrs now and I am afraid of the word hospice. When you talk about around the clock meds and the hard work and focus of care giving I am taken back to harder days we have had. What a wonderful thing you are doing for your sweet wife. No one wants to do this…any of this. But if she has to suffer she is so lucky to have you! One day at a time. Who knows…I try hard to control my thoughts and judt be in the moment, especially the peaceful ones! 

                        I will pray for the BRAF to help!! Also for peace and no pain!! 

                        Praying for you both,




                          Thank you for your post…I'm sure it was difficult to write. I'm in awe of your strength. You and Adriana will be in my thoughts and prayers daily.


                            Hi Rob,

                            I am finally replying to your message, It really hit home with me as although we have not signed up for hospice care yet, I know that day is fast approaching.  I also felt such empathy with how you describe the evolution of your role as care-giver.  I am finding it getting more and more challenging.  Juan has also almost completely lost the use of his legs now and sitting up and getting into the wheelchair or to the commode is getting very hard.

                            I have such admiration for how you have set up your home and are trying to make everything as accommodating as possible.  You gave me some ideas of things I need to get sorted out.  

                            I was so pleased to read the part where you said the pain has been relieved a lot.  That is so important for you to have quality time together like your excursions out.  When we got Juan the wheelchair a couple of weeks ago, he called it his new Harley Davidson.  

                            We go to see Dr Glitza at MD Anderson on Monday (we go every 4 weeks now to check in and get medication refills), I think we may discuss hospice this time although have to say (similar to you), she is wonderful and happy to help with everything as long as she can, we don't feel like she's trying to "hand us off" at all.  That's good because we rather stick with the people we know.

                            I am praying for you and Adriana, I pray that the pain continues to be managed well, that you find strength you didn't know you had and that you are able to bring each other peace and comfort.


                              adriana cooper

                                Maria (or anyone else), Please feel free to contact me directly if you like, [email protected], ask any questions about any of this. I found first hand, practical real world information less easy to find. I am far from an expert, at only a month in. Hospice is not only for the last days of life. Use hospice to your benefit as it may provide some needed resources but there are drawbacks. Know that you can (as we understand) get out of hospice at any time, to get additional treatment, and return. I also recommend that you explore any Medicaid/Long term care options-benefits you may have available. I am currently involved in becoming a paid home care aid (doing what I am already doing) which will help provide some income replacement, as I am unable to work. 

                                As transfers for Juan becomes more difficult, look in to a Hoyer lift to save your own body.

                                We currently use these. Hospice provided but you can rent or purchase. Also available with Medicare help, talk to your Dr. and the Medical Equipment Supplier for the needed documentation. 






                                Use whatever tools you have to, and continue to enjoy each other.


                                Often folks say "let us know if we can do anything to help."  We are guilty of not  speaking up more when could use help for the most seemingly trivial tasks such as taking our son to practice driving or giving him a ride to the ski slope so that he can enjoy his (not inexpensive) season pass. Don't be us.





                                  Thanks so much, Rob.  Ended up cancelling the Drs appointment at MDA today as Juan wasn't well enough and didn't want to go!  So i spoke to the Dr and will be discussing the hospice options tomorrow with a view to start immediately,

                                  Hopefully, we will get sorted with equipment we need to make life easier very quickly.

                                  Hope things have improved a bit for Adriana with the diarrhea.



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