hangingon1
Distinguished member
- Joined
- Jan 29, 2012
- Messages
- 199
- Reason
- Lost a loved one
- Diagnosis
- 09/2009
- Country
- US
- State
- Georgia
- City
- Chamblee
When I first learned about ALS because of my wife's contraction of this terrible disease, I did not understand the mental ramifications of her condition. Thinking that ALS was all about nerves being damaged was true enough, but never did I think that it affected the brain and personality too. All of that thinking was scraped in the second year of her illness.
It would be normal enough for anyone who loses mobility to be agitated,but my wife's personality was changing at too great a rate to just be agitation. Over the course of six months she would lash out at me in ways I had never seen in our long marriage. Even though I was trying my best to keep up with her wants and needs, I was verbally bashed when I least expected it. I knew something was very wrong with her thinking processes and her emotions. After research, I found that until recently, ALS was though to not only affect motor neurons, but that now medical science is sure that it affects the brain also. FTD, or frontotemporal dementia occurs in many ALS patients. It manifest itself in many ways. A patient can become obsessive compulsive as in the case of my wife. She had so many quirks about adjusting the blanket, her hands, her feet, her glasses, that just to do them took a lot of time. I found that many times she would get something trivial like buying stamps on the brain and never let it go. Sometimes she would forget the obsessive object as if it had never happened. It was like a storm occurred in her head and in time the disturbance would dissipate and at other times she would wear herself and me out over it. This in itself is not normal behavior. Another odd trait was the overreaction to trivial matters. I am convinced that she would have hit me several times for no reason had she had the use of her arms.A couple of times I tried in vain to reason with her to let her see that she was not acting rationally to a given situation but it was no use.She never changed despite the fact that it made life miserable for both of us.
To all you caregivers out there that can not quite put your finger on what is wrong, it is their brain that is being affected by the disease. It is not your fault and you can just step out of the room for a moment and collect yourself. When a tantrum was brewing, many times I would simply tell her that I had to leave for a moment. I would leave the room, sometimes in tears and try to recoup. No one but you and God know what you are going through. I often compared it to the invasion of the body snatchers si fi film. Something had stolen my wife and I was not sure who she was. It even made me wonder if I was losing it. I was not! She was!
One thing to remember in this vortex that ALS has placed you and your patient in is to not argue. It is better to be calm and wait out the brain storms that they are having. You are not the problem, but you can by the grace of God be the answer. Just try to survive each day and know that when the disease runs its course you will not have to go through this again. The biggest trial of your life will be over.
It would be normal enough for anyone who loses mobility to be agitated,but my wife's personality was changing at too great a rate to just be agitation. Over the course of six months she would lash out at me in ways I had never seen in our long marriage. Even though I was trying my best to keep up with her wants and needs, I was verbally bashed when I least expected it. I knew something was very wrong with her thinking processes and her emotions. After research, I found that until recently, ALS was though to not only affect motor neurons, but that now medical science is sure that it affects the brain also. FTD, or frontotemporal dementia occurs in many ALS patients. It manifest itself in many ways. A patient can become obsessive compulsive as in the case of my wife. She had so many quirks about adjusting the blanket, her hands, her feet, her glasses, that just to do them took a lot of time. I found that many times she would get something trivial like buying stamps on the brain and never let it go. Sometimes she would forget the obsessive object as if it had never happened. It was like a storm occurred in her head and in time the disturbance would dissipate and at other times she would wear herself and me out over it. This in itself is not normal behavior. Another odd trait was the overreaction to trivial matters. I am convinced that she would have hit me several times for no reason had she had the use of her arms.A couple of times I tried in vain to reason with her to let her see that she was not acting rationally to a given situation but it was no use.She never changed despite the fact that it made life miserable for both of us.
To all you caregivers out there that can not quite put your finger on what is wrong, it is their brain that is being affected by the disease. It is not your fault and you can just step out of the room for a moment and collect yourself. When a tantrum was brewing, many times I would simply tell her that I had to leave for a moment. I would leave the room, sometimes in tears and try to recoup. No one but you and God know what you are going through. I often compared it to the invasion of the body snatchers si fi film. Something had stolen my wife and I was not sure who she was. It even made me wonder if I was losing it. I was not! She was!
One thing to remember in this vortex that ALS has placed you and your patient in is to not argue. It is better to be calm and wait out the brain storms that they are having. You are not the problem, but you can by the grace of God be the answer. Just try to survive each day and know that when the disease runs its course you will not have to go through this again. The biggest trial of your life will be over.
