We are several days into our hospice journey. It has been a whirlwind especially while sleep-deprived. I am catching up on sleep with the help of the Care Village around me and I am more able to handle some of the business of this process now. We might now have a routine, but it also might be too soon to say that.
Roy has started to experience a deep itching all over his body. When he had the first bout of liver failure in 2004, this itching got so bad that he could not stand to be touched. He is not there yet. Essentially, when the liver’s bile ducts get injured, which is what happened back then, the bile can build up in the body. Bile building up looks like increasing jaundice and it brings a sense of itchiness that is really, as Roy describes it, below the skin. It’s not the skin that is the problem; it is a sense of itchiness beneath that layer. He has taken Ursodiol for decades now to keep the bile at a lower level; he is still taking that one.
Friends that are helping with his personal care have been dragooned into the scratching team as have the home health aides. He prefers me, but he is willing to accept scratching from other willing hands if it helps him feel better. He does not, however, want the cats to help him. For a while, he liked a hair brush to scratch and he wanted the scratching to be harder, but he has finally decided the hair brush is too hard. Hospice prescribed him a drug he took before for this, Atarax, and while the first dosage helped, the double dose started today seems an improvement. He started having Benadryl as well in the middle of the night to try to alleviate the itching, and we got some lotion suggested by the doctor to try to see if it helps. Occasionally a cool washcloth will sooth the itching temporarily.
The heat that we are all experiencing is not helping. We’re running the AC at a very low temperature and the rest of us are bundling up in sweatshirts and under quilts as needed. Periodically, Roy gets too hot and cannot stand to have more than his hospital gown and maybe a sheet over him. Eventually, his temperature regulator swaps things and he gets cold so we dial down the ceiling fan and put the AC at a more moderate setting and peel off our layers. I say our because I am now most often accompanied by at least one other person – this may be a friend sitting with me to help with his needs or it may be a home health aide. Most often this has been Cathy and Kathy, but I am also grateful to Becky and Carol and Jessica for hanging out. It has also been helpful to have a meal dropped off for me or other helpers, so thank you to Dana and Carolyn and Don for bringing treats for me and for Roy. He had some excellent cheese pizza from the HEB pizzeria today and we had some great pulled pork sandwiches from HEB on Saturday. Roy’s had several bags of the wavy potato chips. We’re trying a new fix for the heat – the windows on this side of the house are now papered over with extra bed pads to give some more insulation on the glass – fingers crossed it helps keep the heat out.
You may not realize it, but when you do hospice at home, the well spouse/partner or someone else is the primary caregiver. The hospice does not provide continuous care (except periodically in very specific cases) which is why many (maybe more sane than me?) people will have their patient cared for in a nursing facility with hospice oversight – it’s a lot to do and the situation is fluid. The rules for taking care of Roy definitely shifted when he wanted to come home and do hospice. He chooses if he takes medication, what he eats, what he drinks, etc. So I am adjusting to not being able to do all the things he needs and to handing off caregiving tasks where I can in order to be his wife right now.
My Care Village helped get things set up with a local agency so that I have a person on duty every day from four to eight pm. That might seem like a weird time slot, but that time slot allows me to go to my gym/training class three days a week and will let me take a nap or do something else that I want or need to do (like write a blog or work on household paperwork). So that I can sleep some each night, there is also someone here, a private carer, from 10 pm to 6 am. When the aides are here, they are not allowed to do medical things, so if he has an issue, or if he just wants me, they come and get me. This makes for a series of naps instead of a steady night of sleep, but I think I am getting into a rhythm that will let me be there for him and take care of myself. I went back to my gym class today for the first time in a few weeks – I told the trainers to pretend I was new.
Roy has had a few visitors and has enjoyed seeing them. I do have to insist though that if you visit, you limit your stay to 15-30 minutes so that he can rest, and that you arrange with me in advance. He has appreciated the various texts and emails received and had a few phone calls as well. Roy had visits this weekend from Russ, Lisa, Leslie and Dan, Don, Maggie, and Pastor Dan who is officially Roy’s only chaplain and can now use that title, too. Roy and Dan had a visit and then we all had communion together – with grape juice because you cannot take the church of christ upbringing completely out of Roy. At our church, everyone is welcome at the table – no matter what you believe or don’t believe, what you’ve done or might do, no matter your age or identity, whether you belong to our church or any church, you are welcome to partake in the outpouring of God’s love for us all and experience the connection of kin-dom.
Roy has given me a task for when he is gone already – he has tasked me with advocating for hospital beds whether in the ER or the hospital or in hospice to be sized up slightly for taller people. We are collectively becoming adept at using the drag sheet (that’s my name for it, but nurses call it a draw sheet) to shift him from side to side and to pull him up when his feet hit the baseboard so that he can begin sliding back down from the head of the bed over time. I am not even sure advocacy will change anything but when I can gather my energy again, I will give it a go.
I am adjusting to having people in our house, and being told to go take a nap, and letting go as someone else handles whatever is happening. We now have an assigned Hospice nurse, although I also used the 24-hour help line last night to get a question answered, and have had several nurses care for Roy since he was admitted (our friend Dinah is an admissions nurse for Hospice Brazos Valley). He’s got a hospice aide every weekday so he has had a bath every few days and got his teeth brushed. Next up the toe nails need a trim.
Roy is sleeping off and on, when the itchy subsides, and has been watching a little bit of baseball, soccer, etc. He is listening to his podcasts – these are a soundtrack for when he’s just resting and occasionally as he sleeps. They’re his version of my sleep stories that help me rest. He is bed-bound so we set aside the wheelchair, the walker, and the bedside commode, among other supplies that he will not be using. He is still on oxygen and the bubbler machine makes a soothing white noise. Be aware, however, that he often plays possum – sometimes he looks like he is sleeping and he’s really listening. He is still able to joke and take teasing, and I am using my smart-ass attitude as often as I can to lighten the mood and keep him grinning or rolling his eyes at me. The evening aide has said already that we have our own language – it would not make sense to anyone else the way that we interact.
I am grateful for this experience in an odd way, too. I tend to think of myself as disconnected from people and this has shown me that I am more connected than I ever thought I could be. Roy also has mentioned that he is amazed at how people are telling him about his impact on their lives – sometimes in ways he had no idea, other times in a bunch of seemingly little things that rippled much wider. Thank you for your love and your care for us as we traverse this chapter. We are so much richer than we imagined.
Waiting 
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