This is a story about Christine, an upbeat, and kind caregiver with Ascentria, her late husband Billy and her two sons.
To tell you Christine’s story we are going to need to re-wind the clock back, but before we get going, I’d also like to warn you that as an American, someone with people you love, or just another human, what you are going to read now will not just make you sad and upset, you are likely to feel really angry.
Christine and Billy met on a golf course in Australia. Christine was learning to play and a wild shot knocked Billy out. Christine ran over and Billy was coming towards her and he sounded American. Their immediate thought, ‘Oh my God, we’ve got to keep this man partied up and drunk until we can get him back on the plane, otherwise he’ll sue us’. So, they did.
Needless to say an unlikely romance started. Billy flying back to Australia and Christine flying to the USA several times, and a couple of years resulting in marriage. 2-years later Billy even got the calcified bump where the golf ball hit him removed.
Because Christine and Billy married late in life, Billy never thought he’d have a child. Let alone two. As a man Billy was fiercely protective of his family, and the gentlest man Christine had ever met in her life. Billy cried when Christine was giving birth because he thought she was hurting.
Life Can Be Cruel
Forward wind to April 2021, it’s the height of COVID and Christine’s boys, are now 39 and 20, and her special education teacher husband Billy is going through chemo when issues occurred with the chemotherapy treatment that ended up blowing Billy’s kidneys and pancreas.
Billy got really sick really quickly, entering a coma. The family had to make a decision to put him on dialysis three times a week to try and bring him out of the coma. Then whilst in a rehab facility he got a terrible infection and required him to go to hospital.
Whilst watching her husband and love of her life fight for life she had a doctor trying to send him back to the rehab facility, because they felt the case manager of his health benefits wouldn’t approve him staying.
So Christine had to advocate for to remain there and not go back to the place where he picked up the infection. Billy needed to be in a facility where he could be cared for 24/7 and be protected from infection. There was only one place that could offer the family this – home.
Forced to go on the offensive, Christine brought the hospice and end-of-life care teams together.
You move this man and I will sue you! You can’t move this man from this hospital bed. You need to give me 4 days so I can get the house ready to bring him home and not send him back to the facility.
And because she was lucky enough to know people in the service she was able to get the ramp set up, the medical hospital beds, and all the medications planned. If I hadn’t been, nothing would have happened.
The family united and agreed to do whatever it takes. Christine’s eldest son left his wife and family home to move in and help. The youngest son, was in college. Together they took turns in caring 24/7.
My kids had to change their father’s bedpans and although they’re adults no kid should have to do that with their children, then my eldest son, I did stop my youngest son from having to do it because we had to dress Billy’s private area because he had a bacterial infection from the care facility not looking after his catheter. It was horrific.
The family weren’t entirely without help, just nearly entirely without help. They had the hospice coming in for one hour a week to help Christine get him prepped for dialysis.
How did the family end up with such a low level of support? Billy had medical insurance.
The issue was that their medical insurances did not cover the care they needed. Not because they were cheap policies, they are typical of the policies most Americans have.
They looked to see if CFI was an option but the issue was Billy had been a special-ed teacher and obviously Christine was still nursing with Ascentria.
Essentially they could not get the help that they required because they earned a basic average working-class US income, in this case that was earning too much. Billy also couldn’t get Medicaid.
Now take a moment to guess what the support request list for this family looked like, that could not get covered by any insurance or state aid?
Their need was as simple as having somebody come in to help for a few hours a day to do some cleaning or the massive amount of laundry.
Christine became angry because she works in the field and would go out and do home visits and think “Why can’t we get this? This would have made such a huge difference for us.”
Because the family was not poor they couldn’t get any help. They also couldn’t afford to get anybody in to pay and even if they did they had to be very careful. They would have had to have agreed to come downstairs, shower before they came upstairs and changed clothing and then did the same thing when they left because we couldn’t put the dialysis in jeopardy.
When Billy arrived home Billy couldn’t walk, he had become really large due to the quantity of fluids in his system. Within 6 weeks the family had him standing and pivoting to get into a chair. His pancreas was beginning to improve.
Chrisitine explained that everyone has said that nothing could be done, and she simply said, ‘No, I don’t accept that, it can, we just have to push him.’ And they pushed. Billy did physiotherapy, not 3 times a day, 5 times a day, and he would sleep afterwards because he’d be exhausted.
It was paying off as well. His pancreas was starting to function again and one of his kidneys was starting to function.
The thing he ended up killing Billy with was the infection the rehab facility had let occur to his penis and it went straight up into the kidneys and blew his kidneys away within 12 hours.
The Blows Keep Rolling In
Bill died 7 days after he went onto fully unpaid leave, which meant that his school didn’t have to pay his insurance so the family didn’t even get life insurance. They were 7 days out! To be clear, if Bill had died 7 days earlier the family would have got his life insurance.
The family had $230,000 worth of ambulance costs that had to be paid. So they sold their home and bought a little cottage and that’s how they paid all the extra bills. They are financially cash broke, end of story.
Before Billy got sick they had Griffin’s college fund set and put into a bank account. It all went. Christine is 60 years old and is faced with the prospect of never retiring.
Then the school sent a bill for the month of January, for his health benefits.
“Are you kidding me? You want $800 from me for his health benefits for the month? He only lived for 7 days of it.”.
Life After Billy
Christine’s son tried to go back to college but he just wasn’t ready so he took a year off, and he’s now gone back and doing okay. Christine’s other son obviously has returned to his family, and all are feeling pretty bruised.
It took him a long time and he needed counseling to help. Christine thinks that part of the reason he didn’t go back to college until now is he was fearful for me being left alone and trying to get on with life.
Christine’s eldest son still rings, every third day he rings. It’s become a pattern to make sure his mum is doing okay.
It has taken Christine a year-and-a-half to actually sleep through the night now because for the 6 months she cared for Billy she rarely slept, and always had one hear open.
Collectively it has left the family angry for those who are also going to go through something similar, and there are plenty of those out there.
Here’s how the system plays out. Couples work, pay taxes and have health insurance. You are unlucky enough to have a partner who gets ill. They go on unpaid leave but still can’t get the help that’s needed because the other partner is working, but if they can’t stop because if they stop working they might lose the house. It can be that simple and broken.
Bitter Reflections
There were countless times when Christine had to run out the shower because if Billy had to use the bedpan you had seconds of warning. Running naked through the living room, wet as a dog, to throw him on a bedpan.
What would have made all the difference for Christine and her family was somebody coming in and saying; ‘it’s okay, go have a cup of coffee,’ or, ‘take the boys out for dinner,’ or, ‘you’ve got time to have a shower, you don’t need to leave all the doors open,’ or, ‘if you want a bath go take one, without listening for Bill.’
Amazingly Christine and the boys are able to look back and laugh at those things and talk about them as a family. They also cry in the quiet times, allowing themselves to grieve.
But the anger still is there. The system meant that nobody could come and help.
They paid their health benefits thinking they were doing the right thing and they cut their own throats doing it. It was that simple.
And even now these arbitrary earnings thresholds are acting as red tape that is seeking to break this family. Griffin has gone back to college and Christine is earning $2,000 over the threshold, to get help with his fees. If she was earning $39,000 not $41,000 a year Griffin would get everything the support he needs and his family deserves. He could get free college, free residence.
She has had to take out loans to get him through college because that was the one promise we made him for his bachelors.
There’s no savings left. She is very good at being frugal. There are no bank accounts left, there is no inheritance. No retirement funds.
It’s The System That Is Broken
Christine actually thinks they are not interested, because it’s never going to affect them, they’re always going to have the funds to pay, they’re always going to have better health insurance, because they’re politicians.
Christine is clear that what is needed is a complete overhaul of the system. Her experience is that it’s a crazy, crazy system. The doctors and the social workers at the hospital know how crazy it is and are powerless to change it.
Making Lemonade From Lemons – Let’s Help!
If you have been inspired by this story and can help, please email amoore@ascentria.org.
