Caregiving for a Spouse

Difficult wouldn’t being to explain this Parkinson’s journey with my wife. This disease is tough enough, but trying to be a caregiver to a nurse is tougher still. She was a career caregiver to thousands of oncology patients, but her disease has robbed her of so many things: her self-worth, her independence, her raison d’etre to name a few.

She is still bitter after 7 years diagnosed, never having come to terms with the disease or the limitations that it has on her life. This has led to an extreme strain on our relationship, as I am sure many can attest to. I do what I can, but it never seems to be enough and she feels the need to diminish my efforts, as if they are not real or relevant. It stems from a lack of acceptance. I understand, but it is frustrating and demoralizing to not be acknowledged for the loss that I too have experienced, or the efforts, large and small that I make to keep the house running, to keep her comfortable and happy.  

An additional challenge I have faced is that she does not want me to talk about her condition, her symptoms etc. with her family, our children and friends. I understand her need to not want to appear “sick” to the people she cares about most, but I believe her lack of honesty with this group creates an undue stress on me as I deal with reality. I have been forbidden to update this group by her, unless she pre-approves the messaging. This provides no basis of reality for them, and so they cannot help or assist in any meaningful way.

I am at the point of exhaustion, ready to give up. Nothing I do is right, nothing I do seems to be valued, and certainly not appreciated. 

I continue to work full time to maintain a sense of self-worth and to keep connections with the outside world. I know I need help and have engaged the services of a psychologist to help me understand in greater depth my wife’s needs and what strategies I can employ to help us both get to a place of understanding.

Editor’s Note: Please visit FCA’s Caregiver Support Groups page to connect with other caregivers.