Thursday, June 20, 2013

The pain experienced by the caregiver

As I wrote last, we had an appointment with a new Neurologist this week.  It was a good experience and I am encouraged that he will be good for us.  But, as we briefed him on my disease and how it manifested itself, I saw the grief and pain in my Wife's face.  This was the first time I ever noticed her pain.  She seemed to actually recoil at each description of a symptom as if she was actually experiencing that issue herself.

My Wife loves me!  I have always known that.  But, I never realized how deeply me having LBD has hurt her.  She is in pain over my problems.  She hides it well and when I told her about what I observed, she brushed me off.   She IS a tough person!   Many Navy deployments and workups has forged her in the crucible of stress and loneliness.   But this is a new and unexpected villain that neither of us expected and were not prepared for.  We are well into this journey yet I never really saw her grief before.  It brings a much different prospective to me.

As the one wit the disease, I focus on how it impacts and effects me.  But those negative things are actually harder for her to deal with than for me.  I know that now.  But, what do I do?

I have been told two things that impacted me.  First was from my neurologist in Virginia.  She told me that I had not dealt with my disease mentally.  I disagreed with her then, but I now totally agree and I am trying to address that issue.  Second, I was told that this disease is not all about me.  I know that is true now.  LBD effects the caregiver more than I understood and I am sorry that I did not understand that before now.

Still, I don't have an answer as to how I can change this.  But I intend to be more attentive to Her feelings and emotions.  My LBD does effect Her and I must understand that.

1 comment:

  1. Dear SilverFox,

    Thank you for sharing your thoughts. 4 weeks ago, my brothers and I were called to our parents home to spend our final days with Dad just as he had told us he wanted it to be. He had been given many diagnoses and opinions from "experts" over the last decade but all we saw was Dad was depressed and frustrated about never getting any answers. It was not until this past Spring that a doctor said Lewy Body Dementia. As soon as he googled it and read an article online, he knew that was what he had. Everything fell into place and he seemed relieved to have any answer at all. It was the first time that all his symptoms could be explained. I am sorry that I did not find your blog until now. He would have found such comfort in reading it I am sure. I feel that some of your posts could have been from him. I am glad you can speak about the good times and the bad times, because there are both good and bad days/moments all the time. It sounds like your wife is a wonderful partner and you are lucky to have each other as my parents were. Bless you and I hope you continue to stay as active and involved as you can for many years to come and that there are more good than bad, more happy than sad times.