I have mentioned before that communication for my wife (and those of us trying to communicate with her) is a very, VERY frustrating thing. I am travelling again this week and one of the things I always try to do is call her at least once a day just to "check in". This is so frustrating for her and me. She has trouble holding the phone to her mouth/ear, and that combined with her inability to speak clearly and with volume makes a phonecall a frustrating experience. She actually does not get many phonecalls now from anyone but myself just for that reason. I know she likes to hear from me (and others) so I make a point to call.
It always makes me so sad to hear her, actually to not be able to hear her. I am constantly saying "I did not hear that" or just "what" or "excuse me"; at almost every comment. I end up cutting the call short just because of the frustration level for her and myself. What is the saddest to me however, is when I call her and she does not answer. What I get (or now got, because Verizon changed our voicemail service and her message was erased) is her voice from three or so years ago. It would tear me up to hear her bright, cheerful, clear voice with volume telling me she was not available. As I have commented before, it is amazing how quickly this disease takes away that which those of us that are not afflicted take for granted; like eating, speaking, walking, driving, etc. It always amazed me that her voice could change so much in such a short time.
We always get some form of conversation in, however; and she made my day today when I said "I did not have anything particular to tell you. I just wanted to say hi". Her response was "I am glad you did".
Like I said, we are just searching for the shade.
Tuesday, August 31, 2010
Tuesday, August 10, 2010
Continuing Saga
My job requires some overnight travel. I am lucky to have a boss that is very understanding of our familial condition and my requirement to be at home as much as possible. However, I still have to go away at times. This past weekend was one of these. My wife and I are also lucky to have six children. Our oldest daughter is acting as my wife's primary caregiver currently, when I am at work or away. I am still very mindful of the fact that my wife is more comfortable and secure when I am there, but realize we are very fortunate to have the help we do.
I left last Thursday and returned last evening (Monday). I got a call from my daughter yesterday prior to my leaving to come home. I could tell by the hesitant way she started the conversation, she was not looking forward to saying what she had to say. This has happened a few times before. My mind always starts racing from here to there thinking of the possibilities (which truly are endless) of what she could have happened. She has called to tell me my youngest daughter had wrecked my car, that my wife had this problem or that, or other such news. This occasion was about my wife. It seems she had fallen. It was during a bathroom maneuver. Somehow the wheelchair moved out from under them and my wife and daughter ended up on the floor. So far, not too bad. It also seems that my wife's hand ended up under my daughter - still not too bad.
Now the bad part. The pinkie finger on my wife's hand had curled up and bent in a fashion that caused my daughter to crush the finger. They told me later that in the moment after the fall, while "taking inventory" of what had happened, my wife cried out "my hand!" My daughter realized it was under her and pulled it out. The nail from the pinkie finger remained behind on the floor. The finger was bent in a weird fashion and appeared broken (X-rays later confirmed this). Blood was everywhere due to the torn off fingernail. It apparently was a quite gruesome sight, and as you might imagine - a quite painful one as well. Getting a nail ripped off of a finger and breaking the final joint is not a pleasant experience, I would imagine (I have had a nail ripped off, and a broken hand - but never at the same time).
I came home last night and was shown the hand. It looks like it has been beaten with a hammer. It is very swollen, and extremely black and blue. I did not examine the finger yet, it was dressed and had been bleeding, so we felt it was better to just leave it alone. I will see it this morning when I re-dress it.
My point of this, other than reporting? There is now lots of guilt to go around. My daughter's guilt at not preventing the fall. Her guilt at landing on the finger, etc. Then there is my guilt. If I had been home there would likely not have been a fall. The problem here is one of reality. We all have lives to live. I would love to stay at home and take care of my wife and be with her all the time. Financial obligations do not allow that to even be considered. My daughter's guilt is understandable. However, accidents happen. The goal is to make them as infrequent as possible, and if they do occur - as benign as possible. My wife and I are very lucky to have her to help as she does.
If you are faced with a loved one that has this, or another debilitating disease; you too are (or will be) faced with the question of "do I go to work or do I stay?" Unless your financial circumstances are such that you can live without the income, the answer will be "No". If you are a caregiver, you will always worry about every bump and bruise (as you should). You cannot let fear paralize your actions. In trying to prevent any danger or injury, you are probably opening up the opportunity for more. Life and living are a risk. Pain and suffering are a part of life. This damn disease should be pain and suffering enough for a family for a lifetime.
The saga continues, life goes on - such as it is.
I left last Thursday and returned last evening (Monday). I got a call from my daughter yesterday prior to my leaving to come home. I could tell by the hesitant way she started the conversation, she was not looking forward to saying what she had to say. This has happened a few times before. My mind always starts racing from here to there thinking of the possibilities (which truly are endless) of what she could have happened. She has called to tell me my youngest daughter had wrecked my car, that my wife had this problem or that, or other such news. This occasion was about my wife. It seems she had fallen. It was during a bathroom maneuver. Somehow the wheelchair moved out from under them and my wife and daughter ended up on the floor. So far, not too bad. It also seems that my wife's hand ended up under my daughter - still not too bad.
Now the bad part. The pinkie finger on my wife's hand had curled up and bent in a fashion that caused my daughter to crush the finger. They told me later that in the moment after the fall, while "taking inventory" of what had happened, my wife cried out "my hand!" My daughter realized it was under her and pulled it out. The nail from the pinkie finger remained behind on the floor. The finger was bent in a weird fashion and appeared broken (X-rays later confirmed this). Blood was everywhere due to the torn off fingernail. It apparently was a quite gruesome sight, and as you might imagine - a quite painful one as well. Getting a nail ripped off of a finger and breaking the final joint is not a pleasant experience, I would imagine (I have had a nail ripped off, and a broken hand - but never at the same time).
I came home last night and was shown the hand. It looks like it has been beaten with a hammer. It is very swollen, and extremely black and blue. I did not examine the finger yet, it was dressed and had been bleeding, so we felt it was better to just leave it alone. I will see it this morning when I re-dress it.
My point of this, other than reporting? There is now lots of guilt to go around. My daughter's guilt at not preventing the fall. Her guilt at landing on the finger, etc. Then there is my guilt. If I had been home there would likely not have been a fall. The problem here is one of reality. We all have lives to live. I would love to stay at home and take care of my wife and be with her all the time. Financial obligations do not allow that to even be considered. My daughter's guilt is understandable. However, accidents happen. The goal is to make them as infrequent as possible, and if they do occur - as benign as possible. My wife and I are very lucky to have her to help as she does.
If you are faced with a loved one that has this, or another debilitating disease; you too are (or will be) faced with the question of "do I go to work or do I stay?" Unless your financial circumstances are such that you can live without the income, the answer will be "No". If you are a caregiver, you will always worry about every bump and bruise (as you should). You cannot let fear paralize your actions. In trying to prevent any danger or injury, you are probably opening up the opportunity for more. Life and living are a risk. Pain and suffering are a part of life. This damn disease should be pain and suffering enough for a family for a lifetime.
The saga continues, life goes on - such as it is.
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