I was asked to write a letter by the Center that my wife visits for the treatment of her cancer – the goal being to make some changes in order to help the entire family get through some difficult days. The disease brings with it all these satellite evils that conspire and gang up. This letter is not about what got you here and the person you love – it is about the mundane and stifling which can become debilitating.
Example: Your wife was moved to another hospital for a procedure, you answer a call from your work about a problem on the way down to visit and help as best you can (yes, you already put in a full day, no, you are not mad about it, work is work, health insurance is health insurance, money is money). You left no food in the house for your 17 teen year old who is hanging out with his friends in the living room and staying home—-the scene has a “Lord of the Flies” feel about it that disturbs you as a Dad (they will go to a garage sale and get a replica sword to complete this picture of mayhem!) but—-your son is a teenager and he is dealing with it the best he can—-and you have to let kids be kids—-they will be alright. And the whole group are good kids (you pray and you hope you have done the right things to this point- there is no teaching once 17 is reached).
It’s another trip thru a random Drive Thru for you and the 13 year old, who is an excellent navigator and will keep you from making a wrong turn in the big city, damn, that was a sketchy neighborhood on the visit last night…
You are not hungry but you are very tired – you want to cry but you have no idea what to cry about – there are so many entities competing for tears, they cancel each other out and you drive on.
There was a sense of comedy before leaving when you get out of the shower and there are no towels and no toilet paper on the roll —- you are missing the “automatic” ——- there is no automatic when it gets like this.
We get home – for some reason, the group of kids had to hose off the driveway and seem to be guarding something.
You don’t ask.
You check to see if the dog has messed in the house.
No—-looks ok.
(That was yesterday, and only the 50% that I feel only semi-awkward about revealing)
Note: I did not leave my wife and her condition out of this story because I don’t care—-this post and the following letter is about what it is like to be the husband and caregiver.
I pray everyday and I know we will get through this.
The following is the letter for the hospital.
Caregiver Resources does not exist yet.
My name is Wayne, my wife Marie was diagnosed with kidney cancer two and a half years ago and I am still learning as I go.
There is some help available at the center for my specific needs but there is no central “point of contact” place for a caregiver to start.
We need that (especially the husbands).
Here is why:
When a diagnoses happens – we are in shock – you guys know that – you see it all the time.
It is not a simple “deer in headlights” moment – it is “deer in headlights” structure that quickly replaces everyday existence — the way we live and the way we think is completely blown up and all we hear is something coming right at us on a dark rainy road.
And you say – “Keep everything as normal as possible.”
I know I am a loving supporter of my wife while she fights this battle –that I understand.
But this comes with more responsibilities:
- A politician among all of my family and friends – How do you deal with stuff that well-meaning people are going to say to you? How do I let them help? Do they really want to help?
- Chief financial officer for a family. Now, we have less money and more bills = much stress. Serious problems that can be made much worse unless we do the right things. How do we keep our jobs and insurance? What happens if we lose them? What about Short Term disability? What about Social Security Disability and Medicare? FMLA? When do these things kick in? Am I eligible? Can you help with paperwork?
- I got kids – What about the kids?
- My role is changing in the family – You might think things like laundry and meals are simple to adjust to —- and for a guy that does it sometimes – it should be – but wow – it is not.
- I still have to take care of myself – not because I want to but because I have to – this is the toughest. If I have learned anything —–The luxury of being mad at yourself and feeling like you should do more or do something different is off the table. Move forward as best you can – you have no time to waste in self-pity.
So I ask one of these questions as we check in on a random day last month – like who do we talk to about our health insurance and what happens if we have none? And the answer I get is “We don’t have that here – Let me see if I can find you the number for some person from this place or something or other—no, can’t find it”. Keep in mind that we have been seeing the same people at the check-in desk for two years and they know us and want to help—-there is no mechanism for them to use. How much easier for them to say: “Go to Caregiver Resources—they can help you”
The second part I want to stress is that even though some of the help might be available at this Center already – it is difficult to understand. The hospital website has the psychologist listed close to spa services – the financial help looks like it is just for bills that are already in the system. The look of the site is very clinical and cold –—-We need to be led by hand by a friendly person – we don’t know where to start and we are in trouble —- like if you just got off a plane in a foreign country and are looking to get somewhere —that is exactly how it feels. Lost in a strange world as a caregiver. I may very well need to speak to the psychologist – but I don’t want to click that link – I don’t trust it…
The American Cancer society has some excellent and targeted information on its website – as a suggestion; maybe linking to some with specific help that a caregiver needs?
Again and again – all the help and resources are largely already out there – the problem is not the supply – it’s finding out how to connect to it.
I have no issues with the excellent care my wife receives – or with the staff who I admire and respect as they do God’s work every single day.
Most of the resources are directed at the patient, as well they should be.
But we have to get that patient (in this case, my loving wife) to and from the best care they can get.
We live this with our loved ones 24/7 – when we arrive for care – we need to make the most of our time – how great would it be if there was a place we could go to get questions resolved?
And we have to keep our families strong and healthy as we all fight together.
So please – give us clear, concise and accurate help to guide us through this
Now for two things meant so much in the beginning:
The Family membership at the Y you gave us for six months was a true blessing. The kids, my wife and I could work-out. It kept her as strong as she could be. The benefits of being able to melt stress away cannot be overstated. The downside — it was for only 6 months and the application of it was clunky—–they weren’t exactly sure how to process it but were not going to argue with a cancer patient – So they put it through. In the future, if you do this —Please— an activated membership ready to go for a whole family would do wonders. They need this and would not abuse it.
And making us the family to be sponsored by the Center for that first Christmas after diagnosis was a monster help. Removing the burden of the holiday is what the spirit of the season it all about. Forever thank you for that.
I am writing this because you asked how to make things better for the caregiver from a caregiver perspective.
I will never forget when I was in the hospital recovering from G.I. surgery myself last year and the nurse wrote on my board. “Lives in a C family” She put a circle around the C. – It was when it truly hit me that I was in a different place with a different mission and better do it right. So any help I can give to making Caregiver Resources work for other people – I am all in.
Thanks for the consideration to want to make the Center work better for everyone.
Just another caregiver among many doing the best they can.
Wayne
Taking the dog out to pee in the early morning when still dark.
While I was walking on Mirror Lake – I was thinking “wow’ – this is cool – this is like … ice on a wound.
Cave of Fame 