The Russell Family Rollercoaster

by Sarah

Let’s start with Mike.

He’s been in the hospital, on his back, in a room, since early January.  He’s had multiple surgeries to close his pressure ulcer but that damn thing still isn’t completely healed.  It’s improved but until it’s closed, he can’t be up in his wheelchair or start rehab in an attempt to build some strength again.  How weak do you get being in bed for months at a time?  Sigh.

He’s had multiple infections, as are common in this situation, including MRSA, MSSA and a UTI that morphed into uro-sepsis that damn near killed him the first weekend he was in the hospital.  He crashed three times in 48 hours and ended up in critical care, sedated and intubated.  He’s depressed and bored and lonely.  I visit him when I can but trying to make mom’s, dad’s and my own appointments/surgeries/chemos doesn’t allow for me to be there every day.  He’s either been in the hospital or a skilled care facility since the beginning of November.  This is taking a toll on him that I cannot fully comprehend.

If he can’t get this wound healed, he won’t go home.  Ever.  He will be in some sort of nursing facility indefinitely.  He is at high risk for infections and he is becoming increasingly antibiotic resistant.  His odds of getting healed, gaining enough strength to navigate a life on his own in his apartment and live a semi-independent life are decreasingly rapidly.

Mom and Dad.

Dad has been undergoing chemotherapy for his recurrent bladder cancer since November.  He’s losing weight and is increasingly frail.  A PET scan a couple of weeks ago revealed that his cancer has progressed.  We’ve stopped that flavor of chemo and we’re trying another that has lessor odds of being effective.  But he is giving it a shot.  We’ll see how he tolerates it, watch his weekly blood panel and vitals and discuss if a future scan is warranted.  We know we can stop at any time.

It’s been a rough week for Dad and those around him.  Last week he got up in the middle of the night and fell.  He wasn’t able to get up but was eventually able to crawl to bed and pull himself up and into it. Luckily, he didn’t break anything but he’s banged up.  Monday he had a port surgically implanted in anticipation of his new chemo.  It was an outpatient surgery but we were there hours longer than was scheduled.  No surprise that he doesn’t bounce back like he used to.

That means Mom and I were in the waiting room for hours.  She’s having pain in her hip, arm and now her foot.  I had her stretch out on the floor since we were the only ones in there at this point, and I massaged her IT band and arm as I do when we’re at home.  It seems to help.

Mom is overwhelmed and often emotional.  She understands what is going on with Dad.  I’m trying to simultaneously ease their burden and make sure all the business that goes along with this situation is taken care of but man, it is often more than I can do, especially when she disagrees or is resistant to what needs to be done which is damn near all the time.

Mom and I went outside to get some fresh air after Dad was in recovery.  Serenity Hospice House is across the parking lot and we walked over and went inside.  We talked with a nurse, looked around and took a pamphlet.  It’s a beautiful facility.  

Dad was VERY unsteady post surgery but we got him home. I brought food and cooked them a late dinner and they both ate readily.  I try to make enough for them to have leftovers.  They’re mostly subsisting on fast food these days with the exception of breakfast and I know it’s not appetizing to Dad.  He says he doesn’t have an appetite but he seems to eat whatever I make him quite well.  Maybe my eyes on him make the difference.

Mom and I helped him get ready for bed.  I slept in my clothes (since I hadn’t anticipated staying) on the couch so I could hear if he tried to get out of bed….although slept is probably not an accurate word.  Mom and I helped him again in the morning.  He was still unsteady but a little better.  I made them breakfast, got Dad settled in his chair and returned to Des Moines for my own appointment that afternoon and Madonna’s visitation.

I returned Thursday morning for Dad’s first chemo in his new port and to navigate the process with them.  He was moving better and his banged up spots had improved a bit.  I made them dinner and gave Dad a haircut although it’s getting pretty thin.  We talked about everything and nothing.  There’s a lot to be handled right now but sometimes you just need to talk about something else.

I felt good enough about how they were getting along to return home.  Mike’s doctor had called and surprised me with wanting to discharge him earlier than expected so I needed to tend to that situation, attempt to manage it.  I do my best to take care of myself, recognizing that if I’m not around and in good health, I can’t help them.  I crammed in a day’s worth of “getting shit done” in addition to a walk, for my mental health as much as my physical, and visited Mike.

I got a phone call from my other brother late in the afternoon informing me he found Dad on the driveway about 30 minutes prior.  Evidently Mom had fallen in the middle of the night and taken a full length mirror down with her, breaking it’s frame.  Dad was insistent on fixing it and was puttering around in the garage.  When he headed back to the house, he went down.  He has a goose egg with a scrape on his head and also his knee and probably some other banged up spots he isn’t copping to.  I called and talked with both of them.  Both minimized what happened, refusing to acknowledge the severity and potential implications of a situation like this.  Amazingly, he avoided breaking anything again.  The odds of getting that lucky a third time are not ones on which I would bet.

I’m encouraging them to sell the house and get into an independent or even assisted living as quickly as possible.  They agree that it’s the right thing to do but getting them to actually DO it is “like pushing water uphill”, as Dad said Thursday night.  Dad worked for Rolscreen, Pella Corp for 45 years.  They have lived in their house for over 40 years, moving there after living for 10 years in a house across the street.  Change is not their thing.  We do not have the luxury of time.  Many things need to be handled in a very short time but between doctor appointments, Mike’s ongoing situation and trying to coax them around like a herd of turtles, attempting to convince them of what needs done and the speed at which it needs to occur is often a challenge beyond my abilities.

Next up, me.