ADHD and Cancer Care.

[Anonymous]

One would think that ADHD and being a caregiver to someone with terminal cancer wouldn’t be that terribly novel a situation but I’m finding that it is. I am the ADHD caregiver to my non-ADHD partner with terminal lung cancer.

Hospitals in general are NOT ADHD friendly environments. Seriously. My experience has been that no one communicates with anyone else and getting even the slightest information is enough to really give me a kick in the frustration meter.

They say that ADHDers are time challenged??? We don’t hold a flicker to a hospital’s flame. We have a 9:00 appointment. See the doctor and get the chemo. I would assume that we would see the doc around 9:00. Nope.

Around 9:15 we are called back for a blood draw to do labs. Okay. Since this is his second round of chemo, his veins are pretty shot so we try to get them to run the IV line in the same vein. Add twenty minutes to find someone who can do this. Back to the waiting room.

My partner likes a jelly doughnut with his chemo- the pastry comes up to the chemo room around this time. I steal the jelly doughnut. I have no shame.

Lab work comes back, now it is 10:30. We get called back to see the doctor’s nurse who takes vitals and asks the same questions she asked last week. That’s okay because she asks the same questions every time and we know the answers. At least we like the nurse and find chatting with her pleasant.

11:15 and the oncologist finds his way into the room. We chat about how it’s going at a very high level, he reviews the lab work, tells us what additional testing we need to schedule and when he wants to see us next- or when he wants the next chemo scheduled.

Back to the waiting room where my partner is SERIOUSLY eying that jelly doughnut.

It’s noon now. The chemo meds- well, the pre-drugs- are now in the hands of the nurse. We get called back. This chemo is a one hour infusion. We should be outta there by 1:00, right?

Well no. First they run normal saline for 20 minutes. Then they do a Benedryl push. Then they hang the pre-med. That runs for around 30 or so minutes. Then they run a normal saline flush. THEN, assuming that everyone has been communicating properly, they hang the chemo. That bag runs for one hour… ish. Then another 20 minutes of normal saline. As soon as he is in the chair, I give him his jelly doughnut.

In my world, a 9:00 doctor’s appointment is an all day affair. What’s worse is that this is an IMPROVEMENT on the first chemo he did. In that one, we could count on not being through before 5:30 or 6:00 p.m.

We go through this every three weeks. It is followed by him becoming increasingly ill, and needing to sleep A LOT. Right around the time he is feeling marginally human again, we do it all again.

From MY side, I spend MANY anxious hours in sit and wait mode with no real recourse. I need to hear what the doc has to say first hand and I am generally the one who will coordinate additional tests and such as they are required. I can leave once he is in the chair and try to do exactly that because the 10 mg of Ritalin that started my day and is generally very helpful just can’t stand up to this. I’m still titrating the Ritalin and plan to ask my doc to give me a discretionary dose or two for chemo days.

A strange thing happens when a loved one is diagnosed with cancer and especially when it is terminal. Everyone you know will send you supportive email- or if you have a CaringBridge site, will post to it telling you how loved you are and how they want you to call any time you need a hand getting through the tough stuff. What have I learned? 98% of that is horsie poo. I can’t count the number of times I have reached out for help and been told, “Hey- just can’t do it but keep me in mind”. I take people at face value so I try again. I’ll even give it a third shot before erasing them from my contacts.

Even worse are the ones who take the opportunity to tell you that if you are having problems, you aren’t trying hard enough. Fortunately, that is a message that I both hear and understand. You don’t get three tries with that message. I delete you immediately.

In the year since he was diagnosed, I live in hyperfocus where he is concerned but I am, for myself, increasingly scattered and unable to finish things. That gets serious in cancer life because I MUST finish projects. I have to get hard flooring installed in the house on both floors and get rid of the carpet. With chemo came peripheral neuropathy so his mobility is affected. As he gets additional chemo, his ability to walk around is even more impaired. A wheelchair or scooter is in our future and probably by the end of the year. And that is only one example.

I have an extremely low frustration threshold. I have been working on raising it, but the additional stress really impedes any progress there. I try to be mindful of it but there are entire days when I get just incapacitated by it.

I need to end this because I certainly didn’t intend to write a novel. I am just finding a huge gap that I am not being able to fill easily. My ADHD presents me with challenges that a non-ADHDer doesn’t have. Being the primary caregiver is a level of stress that is driving me out of my tree. My doc is increasing my Ritalin as fast as he dares to but my hypertension and prior cardiac issues throw some constraints there. And even with Ritalin doing all it can, I know I can’t expect it to be perfect. I can’t take an anti-depressant because I have terrible sensitivity to them and they tend to make things MUCH worse.

I know that there must be ADHDers out there who have gone through this. I’m open to input.

-Just to note, I am in the US.

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