Everytime I look, it has been over a month since I posted here. For my fan (I know you are out there), I am sorry. As I have said previously, it is hard to get motivated to do this. Emotion and passion drove the beginning and most of the earlier posts.
The melting continues. MSA is a cruel, dastardly illness. It is evil in the way it affects EVERYTHING! I feel so bad for my wife as she is dealing with being able to do less and less. Her speech, posture, grip, facial expressions, vision, movement, and overall comfort are affected in ways you cannot imagine if you are not going through it. To deal with it second hand is bad, to be the person afflicted has to be hell on earth.
One of the ways we have dealt with this disease has been to try to have something in the not too distant future to look forward to. When my wife was first diagnosed, we made a deal to go on a cruise. We did late that year. We have since been on another cruise; and are leaving on yet another in a week and a half. By the way, if you are the caregiver of someone with a similar affliction, I can recommend cruising as a good vacation. Every modern cruise ship I have looked at has handicapped accessible rooms, family-style restrooms, and are generally workable for a wheelchair bound person. With the meals, entertainment, and travel happening all around you, limited mobility is not as big an issue. The pricing is very competitive with a stay at a decent hotel. This is especially true when you factor in that the food and entertainment are included for the most part. I also recommend NCL. The "freestyle" cruising is the way to go. Our last three cruises have been on NCL and it is the only way to go. (OK, NCL - a free or discounted cruise for my wife would be welcomed)
I am looking upon this trip with some sadness however. Although we are both looking forward to it, we both realize that this could very well be our last "big" trip. My wife's condition is making it tougher to do the daily things that have to be done, especially when in new and different surroundings. Now, we have not discussed this. I have mentioned the "elephant in the room" problem that occurs (at least for us) when acknowledging this disease. Unless you have been in the situation of having a loved one diagnosed with a progressive and fatal illness, you probably cannot imagine how discussing it is avoided. I just know that we are having more and more problems dealing with day to day activities here to realize that future trips like this probably will not be possible. I know my wife understands this as well.
Facing this realization, among all the others, is one of the things that makes this disease so damn evil. My wife and I have been married for 37+ years. We have raised six kids to adulthood. We did without a lot of things over the years, especially for us. We had a reasonable existance and tried to give our kids a life they would and could look back fondly on. We finally got to a point that we could have enjoyed life with each other when MSA came in. Again, we have not discussed this a lot. This is not just an elephant in the room, but an entire menagerie - rhino in the room, lion in the room, etc. As I have said before here, we still enjoy what we can, when we can. We still laugh as much as possible, just maybe not as long or as loudly.
Anyway, think of us on the ship in the blue waters of the Caribbean sea in early November. The snow is melting anyway, we might as well go to the tropics.
Showing posts with label elephant in the room. Show all posts
Showing posts with label elephant in the room. Show all posts
Wednesday, October 27, 2010
Monday, February 15, 2010
And then we wept... - originally posted 3-17-09
I am not really sure what this post is to accomplish. It is a bit of a catharsis for me. I hope it will be informational for some, possibly even inspirational for others that may be going through a similar event in their life (although I profoundly hope there would be no others going through what we are - I know there are)
Sunday as we were getting ready to leave Florida for home, my wife started weeping rather uncontrollably. Being the tough macho guy that I am, I kept a stiff upper lip - for about 30 seconds. I HATE seeing my wife cry (or any other loved one), especially a sad, wailing, cry. I asked her what was wrong, but it was one of the teary events where you cannot even talk. She was brushing her teeth at the time, and between the toothpaste, toothbrush, and weeping - communication was not possible. So, I just was just there. Then I teared up myself. Watching her, a grown woman, RN, mother of six, and grandmother of two (with another on the way) not being able to really brush her teeth (we have an electric brush for home, but travel with a normal one) struck me as one of the saddest things I have ever seen. Her coordination to really do the "brushing" motion is just not there any more. So, we wept together. She for, at the time, an unknown reason; me, for what she was going through and what we have to face going forward.
As we got in the car later, she broke down again saying goodbye to her mother. I had a hard time with this one as well as I knew she was unfathomably sad. Goodbyes are always hard. As we got on the road, we composed ourselves a bit. Then we talked. Now, I don't know how many of you have or have had a loved one on death row. (actually not a great comparison as there is always a chance of the governor calling - pretty sure this is above the governor's pay grade) Talk about an elephant in the room! We have talked in small circles around it, but never really in depth or details. This was pretty much the same except she started it with a tearful look and a question that ripped at my heart. She asked me through sobs "Will this be the last time I see my mother's house? Will I die before we get back?" By now, she was crying uncontrollably and I was having trouble seeing the road. I had no witty response. I had no great comeback. I just told her - "We will make a point to.".
I don't remember exactly what was said next, or how we got there; but I told her I was very, very sorry she was sick. I told her I would give almost anything if she was not. We were now weeping again (being a tough, macho type - maybe I was just tearing up a bit - weeping sounds a bit wimpy). She told me she was sorry I had to deal with her. I told her I was where I should be. If I did not want to be where I was, I would leave. I reminded her I was in for the duration.
We rode in silence for a while. I am not sure about her, but I still found my eyes getting wet from time to time. There was once about two hours later where she had dozed off. I looked over at this woman that I married over 35 years ago. She was shaking with her Parkinson's tremors with her hands curled on her lap. She looked so helpless....and sick, I guess. I remembered how just three years ago we were saying goodbye as she headed for work. Her loss of her physical self has been amazingly rapid. I found myself reaching for a napkin to dry my eyes. Luckily, she has not lost any of her mental self. She is still crazy, funny, and enjoys a laugh. We just have to work harder to find things to laugh about.
We made it through the rest of the ride with the elephant safely in the back seat. No more discussions, no more tears. We even laughed a bit from time to time.
Sunday as we were getting ready to leave Florida for home, my wife started weeping rather uncontrollably. Being the tough macho guy that I am, I kept a stiff upper lip - for about 30 seconds. I HATE seeing my wife cry (or any other loved one), especially a sad, wailing, cry. I asked her what was wrong, but it was one of the teary events where you cannot even talk. She was brushing her teeth at the time, and between the toothpaste, toothbrush, and weeping - communication was not possible. So, I just was just there. Then I teared up myself. Watching her, a grown woman, RN, mother of six, and grandmother of two (with another on the way) not being able to really brush her teeth (we have an electric brush for home, but travel with a normal one) struck me as one of the saddest things I have ever seen. Her coordination to really do the "brushing" motion is just not there any more. So, we wept together. She for, at the time, an unknown reason; me, for what she was going through and what we have to face going forward.
As we got in the car later, she broke down again saying goodbye to her mother. I had a hard time with this one as well as I knew she was unfathomably sad. Goodbyes are always hard. As we got on the road, we composed ourselves a bit. Then we talked. Now, I don't know how many of you have or have had a loved one on death row. (actually not a great comparison as there is always a chance of the governor calling - pretty sure this is above the governor's pay grade) Talk about an elephant in the room! We have talked in small circles around it, but never really in depth or details. This was pretty much the same except she started it with a tearful look and a question that ripped at my heart. She asked me through sobs "Will this be the last time I see my mother's house? Will I die before we get back?" By now, she was crying uncontrollably and I was having trouble seeing the road. I had no witty response. I had no great comeback. I just told her - "We will make a point to.".
I don't remember exactly what was said next, or how we got there; but I told her I was very, very sorry she was sick. I told her I would give almost anything if she was not. We were now weeping again (being a tough, macho type - maybe I was just tearing up a bit - weeping sounds a bit wimpy). She told me she was sorry I had to deal with her. I told her I was where I should be. If I did not want to be where I was, I would leave. I reminded her I was in for the duration.
We rode in silence for a while. I am not sure about her, but I still found my eyes getting wet from time to time. There was once about two hours later where she had dozed off. I looked over at this woman that I married over 35 years ago. She was shaking with her Parkinson's tremors with her hands curled on her lap. She looked so helpless....and sick, I guess. I remembered how just three years ago we were saying goodbye as she headed for work. Her loss of her physical self has been amazingly rapid. I found myself reaching for a napkin to dry my eyes. Luckily, she has not lost any of her mental self. She is still crazy, funny, and enjoys a laugh. We just have to work harder to find things to laugh about.
We made it through the rest of the ride with the elephant safely in the back seat. No more discussions, no more tears. We even laughed a bit from time to time.
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