Hospice Care

Maggie’s breathing is growing more and more labored daily.  Nights are sleepless and even basic things, like getting out of bed to get dressed, have become tough tasks.  And we just can’t seem to get the pain bit under control.  So, midday Saturday I called Dr. Loukas.  Fortunately, he was taking after hours calls.  We talked for a while and he laid it out very clearly – we’ve got a very, very tough road ahead of us.  He said the only relief he could offer was to get her some oxygen and to increase her pain meds.  He also made it pretty clear that he felt going back to MD Anderson or anywhere else was not going to help us now.  After we got off the phone, he called Hospice and they sent over a nurse.
Hospice care does not mean we’ve given up.  In fact, we can leave their care any time we should chose.  What they provide is more options for us as we continue on.  They have an alternate emergency room we can use (which is wonderful because the ER sucks.)  We have 24 hour access to both doctors and nurses.  Dr. Loukas even told me that they are there to help me as much as they are for Maggie.  I’m not sure what that means but I’m sure it will play out.

The Hospice people brought oxygen which has made a tremendous difference for her.  Saturday night she slept better than she had all week.  But it’s just a stopgap.  Eventually, even with the oxygen she won’t be able to catch her breath as the capability of her lungs deteriorates.  They also, after conferring with Dr. Loukas, doubled her pain med dosage.  That change has helped knock the pain down substantially but brought with it all the associated mental and physical repercussions.

Sunday we went to Easter service with some friends and had a lovely time.  After the service, people who knew Maggie in name were excited to finally put a face to the many prayers they had offered.  And they offered more right then and there.  Maggie said she was overwhelmed with the love and support she felt.  I, too, was touched.  I don’t think I made it through one prayer without shedding tears.

The rest of Sunday was spent visiting with friends out on the back porch.  The weather was absolutely perfect even well after dark.  We built a fire in the fire pit and just hung out, talking and laughing until after midnight.  There were tears that night, too.  But it was a day filled with magical moments.  It was special.

The Hospice machine is still spinning up.  We had our initial contact on Saturday.  Yesterday Alice, our case worker come over.  Tomorrow Angela, our social worker is coming to visit.  They are essentially taking over how we get our medications and, supposedly, are going to make it less work for me.  We’ll see.  All the people we’ve spoken to are very nice although Maggie said it best last night that we don’t particularly click with them.  But, I suppose, their calm, soft-spoken, and relaxed personality that is preventing a connection with Maggie and me is the same that helps them help the most people.  No one wants Jim Carry as a Hospice nurse.  We just probably aren’t in their core demographic for customers.

We can also hop in and hop out of Hospice as we feel it necessary by merely filling out a form.  There are issues with insurance that require us to leave Hospice care if we pursue some types of treatment although it’s very unclear to them which treatments, which is troublesome.  That tells me that most people on Hospice don’t pursue additional treatments otherwise these folks would have more specific knowledge.  I guess we’ll have to figure this out as we go and teach them in the process.

MD Anderson has switched our visit from Monday (yesterday) to this coming Friday for the best reason I’ve heard from them ever.  Dr. Kurzrock wants to meet with a team of her colleagues Wednesday to discuss Maggie’s case in order to figure out the best treatment possible.  She wants to meet with us Friday to discuss what they’ve come up with.  Dr. Loukas, although he is completely supportive of our right to chose, doesn’t believe that it’s worth spending what time we have at MD Anderson.  Frankly, Maggie and I don’t know what to do.  As of right now, we’re still planning on going but Friday seems like such a long, long time from now.

We are both scared, sad, and angry while oscillating in and out of sweet denial.  There are moments, like Sunday afternoon lunch with our friends from church, where Maggie and I are our old selves again, blabbing on about places to eat in Austin (one of our favorite topics.)  It’s so pleasant to forget, even for a moment.  And it hurts so badly to remember.  Looking forward is scorchingly painful.  Someone said it best in a previous post, “Jesus, take the wheel.”  I fear I’m beginning to just shut down and become less and less connected with the outside world.  My attention is so intensely focused on Maggie, doing everything I can to protect and care for her while watching for and nurturing special moments, the ones that take our breath away.

27 thoughts on “Hospice Care

  1. So thankful for the relief hospice has brought. Hope it continues to bring more comfort for the both of you. physical,mental and emotional. Prayers continue from everywhere. Yes, Let Jesus take the wheel. He will steer you thru. God’s speed. Love always.

  2. Love you guys so much. We’ll be in Austin this weekend and have talked to Katie and Martha about getting together. Looking forward to seeing you and, in the meantime, we’re sending lots of prayers and love your way.

  3. We had to try a couple of hospice agencies until we found one that we clicked with. Our journey through hospice care included much laughter – which we found essential.

  4. Sending prayers your way from Houston. A friend has your blog posted on hers and I read what you are going through and I am so sorry to hear that you are in so much pain. We will pray for you and your family during this time of need.

  5. If intellect, willpower, love, and prayers can work a miracle, I hope that will happen. You are two of the most beautiful people I know, inside and out, and I am constantly humbled by your expressions here. I hope you can find the peace in your heart to savor each moment in the midst of the turmoil. You are much thought of and loved.

  6. Dear Maggie and Chris,
    I think it only appropriate and completely understandable that your attention is “so intensely focused on Maggie, doing everything I can to protect and care for her while watching for and nurturing special moments, the ones that take our breath away.” I wish you many such moments in the days, weeks, and months ahead. I hope that, as much as is possible, the world and all of its outside cares can just fall away as you drift in your boat toward whatever sweet fruits you can reach, and I hope you are able to savor those fruits as they come your way. The journey you are taking now is uniquely your own, and although the rest of us can sit on the sidelines and cheer you on and send you on your way with our best wishes, ultimately this journey is yours. I know that we all wish you calm waters and smooth sailing. May you find peace and joy wherever you can. You are in the thoughts and prayers of many, many people, and we wish you a bon voyage.

    1. Now THAT is humbling. I don’t think Chris could have summed it up any better. Those words are perfect.
      My heart goes out to you. God bless you, Maggie and Chris!

    2. I couldn’t have said it better myself. Chris and Maggie please allow all of us to do anything that can help you focus everything on Maggie.
      I am so blessed that you both are in my life.

  7. Maggie and Chris,

    I was just at the Scottish Rite Theater and felt compelled to check in to see how you are doing. We are thinking of you and send our love,

    – Betsy and Michael (who is actually in Japan right now, probably enjoying enough sushi for all of us)

  8. I had a dream about the two of you last night. Chris, we were living in our old place barbequing and enjoying lif, All Maggie wanted was your signature “Beef goullash.” The two of you are on my mind both consciously and in a dream state.
    …You are on my mind. Love,Tony

  9. In my experience, hospice greatly improves the quality of life for both the patient, and the loved ones. Not only can they help her pain, but they also help with the shortness of breath – and appropriate anxiety – that accompanies that feeling. (I am also hoping that they’ve given her a fentanyl patch which also helps with pain.)
    I’m not sure if you can appreciate(yet) what a smart decision it was to choose hospice. I know that you’re ambivalent about, but it was a loving thing to do.

    1. Thank you, Donna. Maggie has a constant drip of liquid Fentanyl at something like 60 micrograms per hour with an equivalent bolus available every minute. It’s been fairly effective at minimizing her pain. Thank goodness. I can’t imagine life without that pain pump. Funny. I couldn’t imagine today’s life not that long ago either. I suppose we adjust as we need to.

  10. I’m sending you lots and lots of love and hugs from New York. I’m happy that hospice has been offering some pain relief. I am keeping my fingers crossed tight about your meeting on Friday at MD Anderson.

    BTW, I loved your pictures from your Ireland trip. There’s nothing that a good beer can’t make just a little bit better.

  11. So much love and support from your pal up North. You are both deeply embedded in the thoughts of many friends up here who only know Chris through his generous sharing of strategies as we help our friend Julie through her battle. All those on Julie’s team also root for Maggie. We send you love, light and infinite gratitude.

  12. Thinking of you with a prayer for your comfort and peace. The two of you have enriched the lives of so many, giving all of us a boost in confidence that we too can face life and its problems with courage. Certainly most of our problems will seem quite small when compared to what you have endured. Those who know you best share in your pain the most but I’m sure they have trouble expressing how great a blessing you have been.

  13. I feel so blessed to have had the opportunity to have lunch with Maggie and many wonderful friends today. What a remarkable lady you are Maggie and Chris even though I have never met you, I know from your writings you are a wonderful person also. My prayers continue for you both. Love and may God Bless You,

  14. You don’t know me from Adam. But I was in a class with you at Baylor Law. Know that even strangers ache and hope with you. May you receive a miracle. And never give up hope because we haven’t.

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