The aftermath - a follow up

It was 11 weeks from when I am writing this that the ambulance took my wife away. It was 11 weeks ago that I last spoke to her. It was 11 weeks ago that I was doing chest compressions for 8+ long minutes waiting for the ambulance to arrive. In a way it seems like yesterday. In other ways it seems a lifetime ago.

I am still amazed at the views this blog gets. I am more amazed at the comments. I am extremely grateful for the kind words and thoughts that have been sent my way. I am gratified by the fact that people find some help, information, and attachment here and then take the time to comment on it. As rare as MSA is, there are way too many families out there that are facing this terrible nightmare of a disease. That is the main reason I am posting now. I feel somewhat obligated to do so. However, I gladly would do so every day if I thought I could offer any comfort or help to anyone dealing with this disease (or any of the alphabet diseases).

Even though the diagnosis of MSA is a death sentence, (sorry if that is harsh to anyone reading this that has not accepted this, but unfortunately it is true - at least now) it is so hard facing the end. I am surprised every day at how the loss of my wife is still so raw. In my case I think one of the things that made/makes it so hard is the fact that my wife just "left". I always saw the end as a more gradual thing. Maybe hospice in a bed, surrounded by loved ones, and saying goodbye. My wife passed out and never woke back up. Even though we said our goodbyes, it was not at all what was envisioned. She was not able to say goodbye back. In a way this is a good thing. One of my wife's biggest fears and concerns was a feeding tube, a catheter, and a long drawn out ordeal. I know my wife's condition made her miserable. The inability to communicate was one of her biggest frustrations. She could not speak well at all, with no volume. That make the phone impossible to use. She could not type on her computer due to the tremors and lack of motor control. She was isolated from all those she loved, to a point even those in the same room. I have posts on this site about how many times I said "what?", "excuse me?", or just "huh?". There were a lot of times that she would just say never mind and give up. From that perspective the way things went were definitely for the better. From a "closure" perspective, it was far from perfect; at least for us left here.

I find the days getting easier to deal with. I know this is a good thing. I know this is the natural course. I also know that in a way it makes me feel guilty. It seems like not feeling so sad is not fair to her. But again, I know that a life with nothing but profound sadness is not much of a life at all. I also know with all my heart that she would not want me to be very sad all the time. Every one of us here on earth now will be dead at some point. This is the case with every person that has or ever will live. It is still hard to deal with when it hits you.

The thing that gets me the most is music. I can hear a song from our past, particularly the early days of our relationship, and be hit with a flood of emotions and memories. I still find myself thinking I will have to tell her about something I have seen or heard when I get home that night. Being together for almost 39 years and married for 38+ develops a real attachment at multiple levels. To lose that connection is weird and very difficult to do without. The longest we were apart for those 38+ years was less than a week. To now be at 11 weeks without seeing her or talking to her is still very odd and discomforting.

I will post here when I have something to say. I do check the comments and try to answer anyone that gives me a contact with a question or a request for contact. I do think daily of those that I have "met" through this blog, facebook, and some other MSA-related sites. I would still love to hear from anyone that wants to drop me an email, a comment, or a question. I welcome any of you with questions to look at the three posts here entitled - "Maybe this will help..." parts 1, 2, and 3. They are a synopsis of my wife's symptoms and how we dealt with them.

Until later.