Saturday, January 7, 2017

Time Flies, Time Stands Still, When You're Grieving

It has officially been eight months since hubby was diagnosed with ALS. The difference in his physical mobility is like day and night. In May, just after his diagnosis was confirmed, we flew to South Padre Island in Texas for some sun and relaxation. He was walking on his own, talking clearly and eating without problems. Of course, his energy wasn't what it used to be, but he went walking along the beach and spent time in the pool like he always liked.
Fast forward to mid-November, when we took a cruise to the Caribbean. We took his wheelchair with us, which was a good thing. The distances from airport entrances through security to gates would have been impossible for him. Luckily, being in a wheelchair made us feel like VIPs, going to the front of lines, breezing through security and getting on the plane first. Waiting to embark on the ship was a nightmare as there was a three hour standstill. I dread to think how terribly uncomfortable, even impossible, the wait would have been without his chair. As it was, he was able to sit the entire time.
Once on the ship, Bill was more in his chair than out. Everything was on "the opposite end" of the ship. The only deck that was "handicap friendly" was the promenade, due to thick carpeting on many other decks, so  I was worn out by the end of the cruise. I think I may have built up some muscles. However, it was a good trip, relaxing in its own ways.
We had an emotional breakthrough on the third day out. After having a breathing, gagging, choking episode, Bill was sitting on the bed with me next to him and I started crying in front of him. I managed to say, "This sucks. We're supposed to grow old together." That prompted Bill to start crying, and the flood gates were opened. 😭 I know it's tough on Bill, but he's the man, the husband, the father. Because of this emasculating disease, this attitude is slowly being stripped from him, yet still he hides his emotions. For him, for us, to cry and mourn together, was cathartic and much needed. We are both traveling on that journey of grief with all its steps, and we are mostly in tune with each other.
Speaking of grief, even if you can manage the attitude of "Living with ALS" instead of dying from ALS, you have started on your way through the steps of grief. You probably started the day your ALS diagnosis was confirmed.  According to my therapist (yes, caregivers need therapists, too), everyone goes through these steps, but in unique ways.
"The five stages, denial, anger, bargaining, depression and acceptance are a part of the framework that makes up our learning to live with the one we lost (are losing). They are tools to help us frame and identify what we may be feeling. But they are not stops on some linear timeline in grief." 
The above site has an abundance of information to help caregivers and those with ALS deal with their feelings of loss.
The site below, while disagreeing with the "stages" of grief, has a free downloadable Grief Recovery Handbook that I found helpful.

The following site writes about overlapping "phases of adaptation" instead of sequential stages of grief with helpful suggestions on recognizing your feelings and moving ahead toward acceptance.
My list is short, but it's a start. After forty years of marriage, I am going to need all the help I can get. I hope you get your help as well.

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