So much has happened since I last wrote that I don’t know where to start. I guess I’ll go with each person and see what I can recall.
Mom is a bit of a roller coaster. Her knee has done well and of all the health issues we’ve dealt with, definitely the bright spot. Her cognition vacillates from fair to suspect. We’re all under a lot of stress and it exacerbates any issues. We have lots of conversations that get repeated. She says “well, I’ve never heard that before” quite often. It’s becoming our normal. I try to let it go unless her misremembering might result in danger. I try to tap into my well of limited patience when I know I’m going to engage her but sometimes it runs out before we’re done. I hate that.
I’ve become a bit of a detective with her. I review the checkbook on occasion and their drugs although not often enough. I glance at paperwork, mail, whatever is laying around while I’m at their house. I look at everything they’ve put on the calendar. I look at the scribbles on post-its by the phone. They clue me in to what’s happening when I’m not there and how their thought processes, her’s especially, are working. It is concerning and often quite sad. I see the writings as a reflection of her grasping at her failing memory. She’s struggling to keep it together. Even her handwriting has changed. It’s gone from confident and flowy and perfect to small and shaky and fearful. Just like her.
This month Mom was diagnosed with early stage breast cancer. They removed a lump during an ultrasound guided core biopsy in the surgeon’s office. When we went back to discuss the findings, we agreed a lumpectomy would be next….until I explained everything we’re dealing with to Dr. Beck. She looked at me and said “how about we try drug therapy for 6 months and have you come back to reevaluate at that time”. We all emphatically agreed and felt lighter after that. I had to repeat to my mom that she may just be delaying the inevitable but considering everything else we’re managing, it was a huge relief, a reprieve to one of our many story lines. She is a private person and honestly, would prefer just to ignore this and sometimes I question if she remembers at all. If you see her, don’t bring it up, don’t hug her, just carry on with her as you normally would. None of us wants people praying for us in church and they don’t want a big deal made about anything.
Lots of people have asked me how Dad is doing. Under the circumstances, he’s doing OK but we’ve set the bar pretty low for expectations these days. He is undergoing chemotherapy and not exactly thrilled about it. He keeps asking me when he’ll be done. I told him that as long as he tolerates it and the cancer responds, we’ll keep doing it but that he can quit whenever he wants.
But then that’s it.
He knows he won’t be around long. We were talking about next year’s football team and he said “but I won’t be around to see it”. They’re administering a rather low dose due to his stage 3 chronic liver disease, his age and weight. He’s increasingly frail and is as thin as I’ve ever seen him. The first cycle was pretty rough for a few days and then a week or so of feeling pretty funky, lethargic. I thought it went rather well. I think it was worse than he expected. He keeps asking me how I felt when I had chemo when I was 30, my first go-round. He has a new appreciation for those undergoing this treatment.
One of the challenging things about Dad’s chemo is the schedule. His cycles consist of chemo on day 1 and day 8, a shot on day 9 and then one or two weeks off depending on how he’s tolerating it and most recently, holidays. He sees his oncologist and gets treatment in Osky on Thursdays because that’s when the doctor visits from Des Moines. It keeps him from having to travel, although it means that I have to if I accompany him, but there seems to be a lot of things getting in the way of these Thursdays. From Thanksgiving to Christmas Eve and New Year’s Eve to the fact that the machine that mixes his drug broke and they’ve asked him to come to Des Moines for his next appointment. Sigh. Dad and I see the same oncologist and now Mom will see him, too. I had an appointment this week and asked for a punch card or group discount.
Getting everyone where they need to be is an issue. It’s falling more and more often to me. Making it happen with my work schedule along with navigating our unpredictable weather is a challenge. I’ve managed so far but I can’t keep up this pace. Changes are coming.
Even with everything going on with Mom and Dad, my brother Mike has rocketed to the top of the concern list. Being in a wheelchair for 25 years causes problems and with Mike, that has resulted in pressure ulcers. He had one 4 years ago which resulted in dozens of surgeries and he spent the majority of the next two years in the hospital, flat on his back, trying to let his body heal. After discovering 2 blockages in his femoral artery and a resulting stent, his body was finally able to deliver nutrients and for the most part, healed. The kicker with Mike is that he smokes. He once told me that he’s smoked for longer than I’ve been alive. Smoking constricts the blood vessels and clogs the arteries. Not what you need when you’re trying to get an extra hole on your south side to heal.
It came to the surface that Mike had a new pressure ulcer while Mom was recovering from surgery. I stepped in and talked with his home health care nurses about what was being done and what should be done. We tried to buy some time but at the beginning of November, we got him to the ER in Des Moines and they admitted him. He spent two weeks waiting for plastic surgery, getting IV antibiotics administered to shut down the infection only to flunk his EKG the morning of surgery. A stress test and echocardiogram the next day revealed that something was definitely wrong. Plastic surgery was canceled and cardiology took over. An angiogram revealed two blockages in his right coronary artery and they inserted a stent. It was good that they caught it but it now meant he had to wait at least a month before Plastics could evaluate him again. I knew what was coming and it wasn’t going to be good. He’d already been in the hospital for a few weeks with me being his only regular visitor. It was lonely, boring and depressing for him and I knew there was much more of that to come.
They were going to discharge him and I needed to find a place for him to go, a skilled care facility that could manage all of his needs from daily IV antibiotics to caring for the pressure ulcer. He wanted to go to Osky. I wasn’t sure that was a good idea. Resources there are scarce, transporting him is an issue and I knew it would be problematic in ways I had yet to think of but the hospital’s social worker got him into a facility and he was happy about it. Well, as happy as you can be in a situation such as this. So, he’s been there since Thanksgiving, existing. I’ve been pushing the surgery schedule with the Plastics doctor and the earliest they could get to him was January 7th. Then they pushed it to the 14th. I went and talked to them in person on Christmas Eve and explained everything we’re dealing with along with the fact that we’ll be forced to start paying out of pocket for Mike’s facility if we aren’t being billed for it already, and that we really need this to happen as soon as possible. They were sympathetic but nothing changed.
Getting Mike anywhere is a laborious process. I got his follow up cardiology and infectious disease appointments in Des Moines on the same day, drove to Osky the night before (about 75 miles), stayed with my folks, picked him up in his van the next day and drove back to Des Moines, shuttled him around to clinic and hospital, latching and ratcheting him down and then unlatching every time we had to enter and exit the van, navigating the doctors and facilities with him, providing my mediation services and then drove him back to Osky only to return to Des Moines that night to my own life after checking over Mom and Dad again. I was exhausted.
Mike cannot navigate these processes. As much as Mom and Dad would like to, they cannot help in this capacity anymore. His inability to talk to medical staff completely goes away due to some serious anxiety about dealing with them. He gets completely overwhelmed and nothing useful emits from him. He has to have someone manage the conversations, the appointments, the decisions and like everything else, these needs are only going to increase. I told him I would do as much as I could for him for as long as I could but that I couldn’t do everything. I also told him that if I’m going to spend my time and effort helping him, he has to help himself. In addition to good nutritional choices, this means no smoking and no nicotine products. These are the death nail of pressure ulcers and heart problems and if he isn’t willing to help himself, I’m done. I laid this out for him and asked him if we had a deal and he reluctantly said yes. He knows I mean it. He knows he needs me. He knows he cannot bullshit me. I look him in the eyes and ask him direct questions. He doesn’t like it but I think he respects that I’m being straight with him and giving him the choice and a small bit of power in his own life. Is he really refraining from this stuff? I don’t know. When I visit him, I don’t let him know I’m coming so it’s a always a surprise. He might be lying to me but for now, I’ll leave it as it is. If I find out different, shit is going down.
How am I? I’m stressed. I’m tired. I’m not sleeping well. I lose my patience at a record rate. Or maybe it’s just getting used up faster than ever. I have a lot of my own decisions to make and actions to take in the very near future. As I said, changes are coming. More on me in my next post.