Hospice Care

Hi friends.  Rolf here. I’m breaking my silence on the blog to report that we initiated home hospice care for Trish this week.  As she chronicled here, life was getting progressively more difficult as her body shut down. For several weeks now, she has been largely confined to bed and it was getting increasingly more difficult to breathe while sitting up even briefly.  Early this week it became challenging to breathe even while reclining. While the CPAP was initially intended for respite, she now needs it constantly.

As much as we knew this was coming, it’s certainly an adjustment.  Trish has long held that she wants to stay home and we want that for her as well.  Hospice allows us to do that. It’s been scary. Hard to imagine how cruel it has to be for someone so super-competent to be completely dependent on others and so unable to communicate with them.  

In the larger sense, hospice is simply a change in the entity that’s managing Trish’s care–which has always been dictated by her physical condition.  ALS really isn’t one of those diseases that you can fight. You just have to deal with it. And this is where it’s brought us. As foreboding as the term is, hospice is just the introduction of new team members who specialize in this stage.  While this week involves newness, the hospice team values continuity. The cadre of caring friends that is caring for Trish will continue to be present but there will be more guidance for a process none of us are readily familiar with. The immediate encouragement is a focus on keeping Trish comfortable and we are learning to make good use of the bag of pharmaceutical candy they’ve introduced to that end.

Can’t really promise when the next update will come but as we appreciate all those following the journey, I wanted to make sure you were aware of this new development.  So grateful for your love and prayer for Trish and our family.

39 thoughts on “Hospice Care

  1. I have been holding Trisha in my daily prayers as well as you and the kids. I am in awe of all of you and your genuine unconditional raw love for each other and the courage you each possess. Sharing your journey has been a gift to all who know you. Know that you are all surrounded by an army of people holding you close.
    With love and prayers
    Jen Betts

  2. Thank you for the update Rolf! I continue to hold Trish, you and the family in my prayers. I know that God is so strongly present in your lives that even in the difficult times you are all comforted by his grace.

  3. You and your family have been such an inspiration to all in your faith during these difficult times. I will continue to pray daily for your family.

  4. Dear Rolf and Trish,
    Thank you for allowing us to follow your journey. Your strength and grace are humbling. God bless you both and your family as you travel this next part of life’s journey together. JG

  5. Rolf I so wish I had been able to know you! Thank for the update, not that I wanted to hear this. We pray for you daily, thank you both for the amazing example of faith you both have given us all. Love & prayers to you all.

  6. Dear Rolf,
    You have been the biggest blessing in Trish’s life. I am so very sorry you have had such tremendous pain, first with Rudy’s loss and now having to go through pain again watching your dear sweet wife suffer.
    You are a true hero, I hope you do not lose your wonderful sense of humor that gravitated us to Rudy’s blog. My Prayers are with you as you guide your family through this very difficult time.
    Give Trish a kiss from me.
    xo

  7. Thank you so very much for updating us Rolf! Every day I wonder how Trish is doing. So grateful that you have her care and comfort a priority! We are holding her and your whole family close in prayer!!! This is still so unbelievable….

  8. Rolf, thanks for the update. You and Trish, Wilson Max and Olivia are in our hearts and in our prayers these days. We love you and pray for God’s sustaining love to be somehow evident to you all these days. Jason and Susi

  9. We have all been blessed by Rudy’s Beat since its inception…
    And now again, I find myself blessed, and humbled, by the courage of the Geyling family. May the peace of our Lord continue to fill your home and your hearts.

  10. Trish,
    Your friendship is a dear blessing to me. My prayers for you at this time remaining unchanged, always hopeful for a miracle. My heart hurts for what you’re currently experiencing and for your family. I love you so very much.
    With love, laughter, hugs and snuggles,
    Nicole

  11. Thank you for the update, Rolf. It is greatly appreciated. Keeping you all close in prayer as you walk this out together. May you feel God’s ever constant presence and comfort with you all.

  12. We love you and we’re praying that you and your family know the nearness of the God of all comfort in these hard days.

  13. Love you, Geylings! And praying for grace for all in this new phase of hospice caregivers, as well as the family and friends who care for Trish. Love you so much, Trish!!!

  14. Love you Geylings – great post – wish I was better with words – articulating how often we pray and think of you – even the kids initiate a lot of prayer and are thinking of all of you – wish it was simple as riding together in Idlywild watching the boys play dinosaur.

  15. Thank you for this update, Rolf. This is painful to hear, but appreciated. Though communication from us has been nearly non-existent, Trish, we follow your blog, get personal updates from former World Impact friends (in fact Kim had lunch with Bob D. today) and pray for you and your family.
    Trish, I truly have admired you and your incredibly loving, committed, sacrificial family for a long time. Your articulate, honest and grace-filled words, the sense of humor, appreciation and caring shown in your family photos on your blog as well as the scripture, prayers and poetry encourages, inspires and humbles me.
    Thank you for all that you and your family have given to so many through your blog. I don’t understand what you’re going through but pray the blessings of the Lord, Jesus and the Holy Spirit upon you. – Suzanne Szalay

  16. Dear Rolf,
    Thank you for posting. I’m so very grateful to you and Trish for your leadership and guidance. I’ve tried almost every day to be like dear Trish and live up to such amazingness. Every time I call someone “friend” I think of the times Trish called me that, and how much it has meant to me over the years.
    I wish so much I would have made it out to see you all before this, but please tell her we love her and she will never be forgotten. Much love and hugs and kisses.
    Sarah and family

  17. Hi Rolf, I saw you from across the room a few weeks ago at Kyles. Peace and prayers for you and your family. Will continue to pray.
    Sara Rudeen

  18. Hi Rolf,

    Thanks for posting.

    I am part of the CA family that has been following at a distance for some time now. I’ve been able to love/care for my father better because I’ve watched how you, Trish and the kids cared for Rudy and now as you all care, comfort and loveTrish as she prepares herself for her heavenly home. My prayers and love go out to each of you. May the peace of Christ engulf you; may He bring you comfort in body, mind and spirit. Jo

  19. Much as I knew this day would come, it is still a gigantic punch to the gut – and the heart. So much love to all of you as you fight exhaustion, fear and grief. However long this season is, we are praying for you daily, holding each member of your dear family before heaven with both thanksgiving and tears. This is hard – no two ways about it – even though you may ‘know’ it’s coming. Praying for rest in the midst of so much, so much.

  20. I pray the blessing of Gods ministering angels all around each of the family members and dear ones taking care of Trish. In the precious name of Jesus.

  21. My prayers in the last weeks have been for our powerful and faithful God, to take our dear and beloved Trish when the struggle became too great. To have her walk into His presence and be completely restored. As hard as that is to pray and THINK, it can only bring me peace, in knowing she can BREATHE, WALK and SING once again. No more feeding tubes, oxygen masks and Inability to speak. Her beautiful voice will fill the heavens. I truly hope her suffering will be over soon. I know that is so difficult for you Rolf, and for Olivia, Max and Wilson, but I also know that as ‘believers’ you all know her life on earth only prepared her to be HIS Angel. We will NEVER forget her smiling face, her encouragement to all, her songs of praise, her uplifting personality and love for all around her. She is truly LIGHT and LOVE to all who know her. We are continually blessed to be her friend.

  22. thank you for the update Rolfe. You, Trish and the kids are in our prayers daily. The Holy Spirit reminds us. You are definitely much-loved.

  23. Oh Rolf, Thank you for taking the time to keep us informed. My heart is breaking as I read your latest post, as I am sure yours is as well. You, Trish, Wilson, Max, Olivia and your extended family are certainly in my constant thoughts and prayers as you and friends minister to precious Trish. I ask that our Lord Jesus Christ will strengthen each of you where strength is needed, rest when it is time for rest, Hope in Who He is, and a peace that passes all understanding as you walk this horrific journey. I support you and send love to each of you today. I am so thankful for the time we all got to be together for Trish Fest in February out in CA. What a gift to each of us for making that dream a reality by being available. Please love on Trish for me today and tell her how much I love and admire her.

  24. Rolf,

    I am praying for you and your family. The grace of the Greyling family is such an inspiration to everyone you touch.

  25. All kinds of love and prayer are being sent to you and your family from all over the world. My dear UWP sister I love you and all you stand for. You have and will continue to make me a better person. God bless you and your family.
    All my love, Randy Wilson

  26. Thank you, Rolf, for letting us know. I can’t begin to express what I’m feeling. Sending you all love every minute of every day.

  27. dear rolf just to tell you and your family are in my mind every days .the help is so little beside what you live . just to let you know we are present and i send you love .
    pascale normand

  28. Rolf, even though I knew this time would come it is still so unbelievable that this very special, beautiful woman will not grace this world too soon. She has been such a ray of sunshine & love. Our whole family has been honored to know her. Much love to you & your children. Yvonne Lierz

  29. Dear Trish,

    Dear sweet, strong, loving, wonderful, reliable, trustworthy, talented, brilliant, amazing Trish,

    You are such a bright light and inspiration. Your courage and clarity and spiritual commitment throughout these last several years’ emotional upheaval and crushing loss is far beyond what most of us can even imagine. You have set an example most of us will fall woefully short of. You have been a reliable and steadfast friend to so many of us, and you are always there in times of anguish and despair. We have watched you continually get back up on your feet after unspeakable setbacks and loss. You always get back up on your feet, still full of love and faith, and keep putting one foot in front of the other. Until now when you cannot physically take a step.

    You have given so much to so many people. You have lifted us up when we were low and shined your light on us when we felt alone and in the dark. You have helped us through our collective grieving and never, ever had a doubt about the depth of your faith. Now it is our turn to hold you up in prayer, love you and keep our faith as we question why on Earth you are having to deal with all this.

    I, for one, have had my faith strengthened for knowing you, Trish. You have blessed our family with your love, care and emotional generosity, and touched all of us in ways you will never fully understand.

    I adore you, Trish. And I absolutely hate that you are going through this. My tears and prayers and questions of/with the Lord about the burdens you’ve been saddled with without receiving any answer is frustrating and maddening. But even though I question, my faith will not waiver.

    My only answer, and I truly believe this, is that you are an angel on Earth, and that Rudy and the Lord need you in Heaven. As hard as that is for all of us here, I know in my heart that God has plans for you and you are the only one that can do whatever it is that needs to be done.

    Nevertheless, I know I’m not the only one that continues to stubbornly and fervently pray for a medical miracle.

    Please rest and let all your friends give back what they can in caring for you. You are surrounded by love and prayers and hope! Forever!

    I love you, Trish!

    Deni Sutheerland

  30. Rolf, I am so saddened to hear this news. As you know, last Saturday a bunch of us gathered for reunion weekend at Kim‘s house and prayed for you and Trish. As I’ve caught up with some of the blog posts, I am again undone bye the unspeakable beauty, the choking pain and yet the infinite joy in your family stories. I will continue to stand with your family in prayer. I know the hands that hold Trish and you are faithful and strong. Please let Jordan and I know if there is ever any way we can additionally lend you support.

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