As a caregiver for a terminally ill loved one, we have many distinctive roles to play in their well being.
One role might be, “going with the flow.”
Alzheimer’s and dementia are horrible, little understood diseases of the mind. But there are other short term issues of the mind that happen due to medication, that might be confused with either of these.
Well, here’s one of them. Mind chaos from narcotic overload, full of delusions and psychotic behavior.
When my wife Annie was in the hospital mainlining dialudid, a pain killer several times stronger than morphine, sometimes she’d get delusional to the point she’d actually become combative.
One evening around 10:00 PM while in the hospital, Dr. Tom Moore her infectious disease control doctor stopped by to see how she was doing. He was leaning over chatting to her, when out of the blue she said, he’s trying to kill me.
Dr. Moore looked at her and very calmly said, Annie, Bob loves you and cares for you, he wouldn’t hurt you.
No! He really is trying to kill me, I know it.
What’s he doing to make you feel that way?
He keeps giving me pills, and he’s not supposed to.
I explained to Dr. Moore that I was giving her medication to her at times, but always explained to her why I was giving them to her so she wouldn’t worry.
When I gave Annie her medication, I could see the look in her eyes, searching, wandering why I was giving her the medication and not the nurse. I knew she was delusional, but I couldn’t fix that. What I could fix was make sure she got her medication on time, and worry about the consequences later.
Dr. Moore had a curious look on his face so I told him. You have approximately 40 patients on the cancer ward and too few nurses. They cannot keep up. To keep Annie’s medications from being too late, I chase her nurse down and she runs to the medication room and gets me her pills. And I give them to her.
See! He just admitted it! He’s giving me pills and trying to kill me.
Dr. Moore got her calmed down a bit, but I don’t think he quite knew what to think. However, I knew he trusted me.
As he was walking out of the room, she said, doctor, doctor, come here. I need to tell you something else.
What’s that, Annie.
Well, there’s some nurses on this floor that have started a petition, and getting all the patients to sign it. It says that I’m crazy and need to be locked up on the nut ward.
He looked at me with a smile and said to Annie, I will go get that stopped right now. You aren’t crazy.
She liked that, with a smile. And totally calmed down.
It took me awhile, but I learned to go with the flow. Things would get so bad at times from all the delusions, I’d simply agree with her position on a statement she made, that I really didn’t agree with. It never changed anything, it was simply agreeing with her perception of reality, that in truth, was not reality at all.
One day, she told me that Dr. Moore Sr., her oncologist, just came in and told her she’d be going home soon.
I told her he didn’t come in, if he had I would have seen him.
Immediately I saw the confusion in her eyes and realized, I could do better. I instinctively looked her in the eyes and said, you know what, if you keep getting better, you will go home soon. What I was doing was acknowledging her feelings. She wanted to go home.
Annie was very special to me. Every day I woke up and she was still with me, was always going to be a good day, no matter what the challenges.
Here’s the thing. One can’t argue with a delusional patient. They don’t understand. It really broke my heart seeing Annie get in such a confused state at times. My empathy was always being tested over, how must she be feeling inside and what must she be thinking. I don’t know. 🙁
When she told Dr. Moore the story about the petition, why would she even think of such a story, if she didn’t think something was going on inside her head. She was locked in a world without reason or understanding. I hated that for her.
Annie was dealing with very badly diseased bones, to include the many broken bones she already had, so she needed a strong pain killer. At home she was on 200mg of morphine a day, a Fentanyl patch, and the occasional Percocet. I struggled with pain control a times, but, she didn’t get delusional, and could tell me when she needed a bit more pain medication. We did fine.
Being a caregiver for a loved one under the circumstances as I just described them is more common than we all know, and cause for concern. The loved one can push every button you have, and somehow find a few more. We must understand, their confused and lost, but as in the case with Annie, once off the strong narcotic, things came back into balance.
She woke up one morning in the hospital after coming off the narcotic Iv, looked me in the eyes saying with a chuckle and smile in her soft English accent, I feel like I’ve been naughty, have I?
No Annie, you’ve been just fine. 🙂