Obviously, the relationship that has been most affected since my diagnosis has been the one with my wife, Nicky. I knew from the beginning that this journey would be harder for her than for me—I believe it’s more difficult to watch someone go through something like this than it is to go through it yourself.
As my muscles grew weaker and my need for help increased, we found that we were having less and less quality time together. Much of our time was being taken up with practical tasks. At one point I had said to Nicky that I needed her more as a wife than as a caregiver. So we made the decision to bring in a caregiver—first three days, and presently five days per week. What a difference! We immediately realised we had waited too long. Nicky was exhausted, and we hadn’t had time to ourselves for weeks. Now we have virtually every evening to ourselves and time on the weekends.
My difficulty with speaking has limited our communication a bit. No more long chats over cappuccinos. Even praying together is quite challenging. We have to work hard to make sure we keep up with how the other is doing. But in spite of what this disease has stolen from us, we are more in love than ever. We do discuss things and still make decisions together.
My limited mobility, plus the fact that everything takes so much longer to do, means that we also don’t go out as much as before. So we need to make the most of the opportunities we get. We’ve also always maintained that ordering in pizza with a video (or the latest recorded episode of ‘Survivor’) can be just as much fun!
In spite of all the difficulties, Nicky has been consistent in her love for me and in her commitment to stand by me no matter what. God knew I needed someone like her, and He has blessed me with the best!
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2 comments:
It is my first time here. A friend referred me. I had a little boy who suffered brain injury (2006). He passed away July 30th 2008. I am so glad I ended up here. I think you are remarkable for writing your story. I will continue to read - maybe you will be able to help me come to terms with his death...see his doctors felt he did not have a quality life. I disagreed. He had a very rich life and was the love of my life. I continue to argue that all life has meaning. All life is sacred. And all people deserve love and respect despite their different abilities. I wish you and your wife the best of luck on your journey. I will visit frequently.
i have just read the relational aspect and wow im just blown away. i have known u and nicky for many many years now and all the things u said in this blog wer so evident in your relationship.ur devotion and dedication to one another was always apparent and is obviously helping both u and nicky cope in this trying period. i haved learned so much from u both and hope to take the lessons i learned from you into my marriage one day
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