Jack has always lived in a somewhat paranoid universe. He’s always thought himself the center of the universe. He’s always been jealous of any attention I pay to, or that is paid to me by, other men. Or women. Or children. Or dogs.
He’s okay with cats.
As his illness progresses, it should not have come as a shock to me that these attitudes have intensified. And, yet, I am having difficulty dealing with his inability to take into account the feelings or needs of anyone besides himself, coupled with his delusional belief that each and every time I leave the house, I am meeting one man or another for an acrobatic session of hot sex I have not been inclined to or, in truth capable of, for a good many years.
When Jack first received the diagnoses of Progressive Supranuclear Palsy, I read everything I could find on the illness. In my naivety, I was actually relieved when I discovered that the type of dementia associated with PSP is not like Alzheimer’s where Jack might forget how to brush his teeth or be unable to recognize me. No, Parkinsonian dementia is usually all about delusions, hallucinations, and obsessions.
I mean, other than the hallucinations, that didn’t sound too much different from Jack’s post-traumatic-stress-normal. I’ve been dealing with those symptoms since our first date when, over spaghetti and meatballs, he calmly explained that every time I left the room he assumed I was never coming back. He claimed this was because, as a young Marine, he saw literally dozens of men go out on patrol and never return. Honestly, at the time, I thought he was exaggerating. I think I even wiped red sauce from my mouth and told him I was going to the bathroom, not out on patrol, and I’d be back momentarily.
Up until a few days ago, I actually envisioned that when we had to deal with hallucinations, I would simply stay with Jack and reassure him the vision was not real. We’d just wait this particular symptom out together.
When it comes to parkinsonian hallucinations, it turns out I was the delusional one.
On Thursday morning, I staggered from bed to find Jack sitting in the living room in his wheelchair. He was fired up. Had awoken at 3 a.m. and gone online to check our bank balance, something I have asked him not to do, even threatened to change the password to prevent. He forgot. Went online, saw a deposit for either $660, or $160, or $186 dollars, depending on his telling of the story.
“We did get a refund from those pants we ordered you. The ones that didn’t fit. Remember? You and the respite worker returned them almost a month ago.” I inhaled my first shot of caffeine, enjoyed the heavenly scent of bergamot, still oblivious to where the morning was headed.
“I don’t have any damn ink for my printer! Couldn’t print out the statement. It was $660, goddamnit. Not pants.”
I looked at Jack. Realized we might have a problem. Pulled up the joint account on my phone. “Honey? I’m looking at the account, clear back to September. There’s this $104 credit from the return of the pants. That’s all I see.”
At this point things went downhill quickly. Jack wheeled himself into his computer, put the wrong password in enough times to lock us both out of the account. I was not particularly happy about this, and I was getting a little freaked out by his anger over what seemed to me a simple mistake on his part, brought about by his poor eyesight and a bit of early morning brain fog.
He began to melt down. “I’m not crazy, goddamnit. I saw the credit for $160. Stop trying to make me think I’m crazy.”
I still did not understand what was happening. Continued to reason with him. “No one is saying you’re crazy. You just made a mistake. Looked at the numbers wrong. You know your eyesight isn’t great.”
I now know that reasoning with a person in the midst of a delusion is not recommended. It actually makes the situation worse. Which is exactly what happened.
He went quickly from anger, to howling crying, to accusations that I was lying to him and had stolen the money to finance some nefarious activity with one of my many stud boyfriends.
I stepped away, called the bank, spent an hour on the phone getting new passwords. The respite worker, Alonso, who had arrived mid-meltdown, went out and bought ink for Jack’s printer. Jack talked to the banker once we had access to the account again. The guy did his best to explain that no credit for $160, or $660, or even $186 had hit the account in the past six months.
Once the respite worker returned, I got the hell out of the house.
I told Jack I was going to the post office and yelled down the hall to Alonso that I’d be back within two hours, which is when Jack’s occupational therapist was coming to the house. I took the dog with me, drove to Fort Humboldt where I walked Nickie along the trail and remembered how to breathe. We stopped by the post office and then came on home.
I hadn’t even taken the collar off the dog when Jack yelled, “Two hours? It takes you two hours to go to the post office? Did you have a good time with your boyfriend?”
I did not react well to this question. I did take it personally. I did raise my voice.
My reaction escalated the situation to crisis mode. You do not need to read and I do not need to relive the events of the next half hour, but there was yelling, on both our parts. What you do need to know is that none of this is typical behavior for either Jack or for me. In the entire twenty-five plus years we’ve been together, voices have been raised very rarely.
I left Jack howling in the living room. My presence, at that point, only intensified his anger and grief. I stepped outside and called his neurologist in San Francisco and told her we were now on a whole new playing field. She said to take him immediately off the Oxycontin which he has been on for the residual pain of shingles, and she prescribed a new medication for anxiety and delusions.
We got through the day. I did some research on recommendations for how to deal with delusions in PSP. Distraction. That’s the key. Not reasoned argument. Certainly not taking the accusations personally and yelling back.
So, I’m practicing, “Look! A squirrel!”
“I have cookies!”
I’m also doing some self-examination as to why I took the accusation of cheating so personally. And, I must concede that, in fact, I am lately drawn to certain other men. This is a bit of a shock to me. Since Jack and I have been together, I have, until now, been uninterested in any other man. But I am now far more caregiver to Jack than wife, and while for years I insisted to myself that being alone would be the height of paradise for me, lately I yearn for someone with whom to share life’s ridiculously mundane moments.
While Jack is dead wrong about me cheating on him sexually, he is right that I am emotionally intimate with other people — male and female. My response to his accusation was, in part, guilt. But in a larger sense, it was survival instinct. I will not make it as his caregiver if I do not have friends with whom I share those moments in life that he is unable to have an interest in. And, yes, one or two of these friends are men who are deeply important to me. These men have been kind, and supportive, and incredibly helpful to me, as well as to Jack, as his symptoms drag us ever deeper down the rabbit hole of PSP.
So, I made some mistakes this week, let my anger and frustration, and insecurity get away from me. But I also learned some important lessons. I’ve released my unrealistic concept of how Jack and I will deal with his dementia. I accepted my own need for emotional intimacy from both men and women. And I have a better idea of how best to handle Jack’s next delusion or hallucination. Life goes on.