Difficult wouldn’t begin 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’être to name a few.
She is still bitter after seven 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. IMO 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.
Source: Reprinted with permission from Family Caregiver Alliance
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