Welcome to Mike’s CaringBridge Site
Sign In to Show Your SupportAs many of you know from Facebook and/or Instagram, we have begun hospice. It's been a little over a week, if I remember correctly. Dad has continued to feel nauseated and unable to eat well. We are keeping the nausea under control with medication but the appetite just isn't there. I suppose his stomach has shrunk quite a bit so he's full fast. But he can't push himself to eat more without, well, repercussions.
The graft versus host disease is in his digestive system; stomach and lower GI. Now that dad will not be treating it with monthly trips to Mayo for photopheresis, it may appear in other places. He does still have it in the skin on his back as well. It has also done a number on his eyes, so it becomes more and more difficult to see.
Dad is rapidly losing weight and muscle mass but is currently still getting around with his walker and an assistant. This is becoming more and more difficult as well.
His super low blood pressure is managed with meds as well, but he still has some occasional scary dips that cause dizziness and lightheadedness. We check the blood pressure a lot and decide about how safe it is to get up depending on that.
We have around-the-clock care for him at home, with me (Heather) and a couple of other caregivers taking turns. Dad decided he was not going back to the hospital anymore, so hospice is our safety net and our guide moving forward. One of the highlights of this experience is that we found some bells that used to hang on the door for the dog to jingle with her nose when she wanted to go out. Dad has them by his bed, so when he's ready to get up, we hear something like Santa's sleigh bells loudly proclaiming HELP from the bedroom. It's always funny. We come in and say HELLO SANTA! Now that he has a beard, it's perfect.
On the bright side, it's been a joy to see how many people want to come and visit Dad. He's very popular. It is always helpful for people to call ahead of time to see if he is doing well enough for a visit. He takes naps, understandably, and has hospice providers coming and going quite often. If you'd like to come and see him, please reach out to me (Heather) or text dad's phone if you have that number and I can help him communicate that way as well.
We are grateful for all the ways you continue to support us. Without help and encouragement, this would all be too much. Honestly, it's too much all on its own. We could get angry and depressed if we let ourselves stay in our own heads too much, but that would only make everything worse. We are striving to stay focused on the good. Dad gets to call the shots, and he has. It was not easy, but his body is telling a story as well. He's listening. We're listening. We will continue to love Dad as well as we possibly can. And we will hope that he experiences more mercy and grace than we could have ever imagined.
We love you.
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