Supporting a spouse with Parkinson’s psychosis

I am not a caregiver for my husband with Parkinson’s — I am his partner

Written by Mrs. Dr. C, Sept. 23, 2024

I refuse to think of myself as a caregiver in my relationship with my husband who has Parkinson’s disease, which causes sensory and motor issues.

It may seem to be unfeeling, but the truth of the matter is that I care deeply for the man I’ve been married to for more than 50 years — and care so much less for the disease.

Dr. C and I work on what we call “the support relationship,” with the last 10 years wrapped around Parkinson’s. Can one move from being a wife and support partner into a caregiver status without damaging the relationship?

In my mind, being identified as a caregiver would change our relationship. It would lead me to become more clinical by focusing on medical and physical issues and detaching emotionally from the suffering. The caregiver role also could also lead to my being less compassionate. I refuse to have that type of relationship with my husband.

The disease has been running its course of progressively getting worse over these last 10 years. The neurologist says kindly, “It’s evolving.”

After 53 years, I have become attuned to all the nuances he experiences. We approach acceptance (and many of life’s adjustments) as a team.

In addition to the physical symptoms of Parkinson’s, my husband experiences frequent exaggerated sensory input, occasional hallucinations, and, very rarely, delusional thinking.

Hallucinations reveal themselves in the senses — hearing noises, crawling skin sensations, catching a whiff on the breeze of a memory-provoking smell that has no source in the environment.

Sometimes my husband will mention the occurrence: “Do you smell that?” He can’t ask me if I heard a noise since I’m deaf, but he will mention what else he perceives.

Likewise, I can’t feel the creepy crawly sensation he experiences, though he will also share those. The support relationship can acknowledge it, even giggle together at its bizarre nature, while the caregiver relationship will want to do something to fix it.

We don’t try to fix it. We talk it through. He will readily admit it’s an unusual or out of the ordinary sensation and not for either of us to be concerned about. So we acknowledge the occurrence and let it pass.

Delusional thoughts we refer to as “spinning brain.” These thoughts usually get stuck in his mind from a stressful environment or situation. Stress, as most Parkinson’s patients know, is difficult to manage.

External stress — household appliances breaking down unexpectedly, too many things happening at the same time, or other untoward life events — is difficult to manage.

Quite often stress is unanticipated, explosive, and disruptive to the daily balance of calmness the Parkinson’s mind needs.

Spinning brain occurs when the thoughts and reactions associated with the stress get exaggerated. These can whirl out of control. James Taylor (in the song “Something in the Way She Moves”) said it best, “And I find myself careening in places where I should not let me go.”

In my experience, a caregiver would call in a medical specialist or dash to the pharmacy for a medication adjustment. In the support relationship (again, with an assist from James Taylor): “She has the power to go where no one else can find me. Yes, and to silently remind me of the happiness and good times that I know.”

We handle these experiences together, acknowledging the effect it has created in his mind and working to alleviate the fear these thoughts have provoked.

It takes patience to recognize and accept that this is occurring during an episode and resist trying to fix it. Instead, we reassure each other that “this too shall pass.”

We are fortunate that our embrace of the support relationship has helped us manage hallucinations and the rare delusional thinking along with myriad other Parkinson’s symptoms.

It’s a shared journey for the two of us — not as a patient and caregiver but as two lifelong partners in a support relationship.

Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.