“The Grey Disease” – a response from a caregiver

I received a number of messages of support following my last post on the Anger I felt. One stood out and I asked the person for permission to quote it anonymously and they agreed.

The quote said (unedited)

“Ben this could have been written almost word for word by my husband 2 years ago. It is portrayed exactly how it came to be for my husband. You have managed to capture in writing one of the most heartbreaking symptoms of PSP. Not only affecting the warriors of this unforgiving disease but also the caregivers.

PSP is so much more than a neurodegenerative disease it also creates “the Grey Area disease” for the carers.

The Grey Area disease can affect the heart and the mind. It lays doubt it builds resentment it challenges the thought process it severs relationships ……. if we let it.

Many caregivers do not recover from its wrath and allow themselves to fall prey to it.

I feel so fortunate to have recognized the flags and danger signs of the Grey Area and not allow it to manipulate me. I recognised the early onset of its symptoms and by the grace of God was able to circumvent its destruction to our relationship with unwavering and unconditional love understanding and the realization that my husband was not the driving force with regard to his actions.

Thank you for writing this.

I can only pray that more caregivers take their stand against the disease and not against their loved one. ”

Furthermore, in agreeing to my request the person said:

“This needs to be out there.

My heart breaks everytime I feel the need to council a caregiver that is convinced their loved one is purposely badgering them or purposely not able to recognize danger or purposely trying to harm them and so on. The worse part is that a lot of them simply do not believe its part of the personality and behavior changes associated with PSP.”

She went on to say:

“Ben,  Sadly when my husband realized what was happening to him he attempted to take his life. Rather then chance hurting me. He had not ever raised his voice in anger to me in 30 years together. He was inconsolable.

I started doing sensory interaction i.e. music, kissing his forehead, hold his hand. Anything to disrupt the signal path. I also contacted the neuro team and requested Xanax for him. Im happy to say its under control. I know the signs and I diffuse the outburst.”

I too am inconsolable – I realized now that this is what scares me more than anything – becoming a person I am not. I have put so much effort into being what I hope is a person who is a loving husband and father and I am so frightened at the thought of becoming something else.

To carers out there – I assure you that it is a real change for the patient and in the moment it is very hard to diffuse. It is real – at least to me and this carer above.

I want to thank them so much for their input. None of this necessarily makes it any easier for the caregiver or the family but perhaps it does help you understand another perspective, an important one.