10th August 2003
Halley,
I agree it's nice to find someone out there that can sympathize with what you are going through. We haven't been married (6years) as long as you & your husband but it's still very painful to watch the one you love suffer in so many ways. My husband is tube fed as well. There are times when they would flush him with sodium to adjust his sodium levels. But now he seems to be okay. Yesterday he started feeling worse again, his temperature went to 104. Tonight it is back down to 101. They started him on an antibodic that seems to help the temp. however his blood work came back fine, not showing any source of infection. He just has a lot of secretions for him trach right now. Respitory problems seem to go hand in hand with the brain lesions. His body temperature does change from time to time because of the lesions on his hypothalmus. This regulates your body temperature & your sleep patterns. Which are both an issue for Steve. Does your husband take seizure meds, Steve was recently changed from Dylantin to Keppra? Steve seems to be doing better on the Keppra. I'm only 33 years old & right now i feel way beyond.....my years. This is something i wrote the other night, so it really makes you feel good when someone really cares. Do we really care?
This is a good question I have to ask even myself. Our society today teaches us to be selfish people. We are what I call surface caring people. It’s common to ask someone how he or she is but we cross the line if we answer honestly with how we really feel. Most of the time a person doesn’t really want you to cast all of your cares upon them. I’m writing because I truly know how it feels when your polished and shined on the surface by people today. Everyone says they care but do they really?
My husband is 36 years living in a nursing home due to undiagnosed multiple brain lesions. He is bedridden at very young age and is just now becoming more alert.
It’s really like watching a grown man go thru his childhood years again, rediscovering the simple pleasures in life. I feel like everyone that knows him has put him in bubble or sat him on a shelf, like a past memory that they can reflect upon from time to time.
The most painful process of watching my husband illness is that the people I thought really loved my husband have truly disappointed me. They can only deal with memories and not the quality of life my husband now has to endure from day to day. Yes! It is hard but it’s worth every moment when I see so….much life in my wonderful husband. It just breaks my heart that others are not comfortable with the person my husband has become. I hope if anyone has a friend or a loved one in a similar situation they take the time to really care and spend some time with the person and create new memories that can be cherished for always.
I must admit my greatest strength and comfort during this time is Jesus, yes he tells us in his word to cast all our cares and burdens upon him. This is truly my hope. I just pray that all mankind follow his example of unselfish love. The greatest gift!
MAKE A DIFFERENCE – CARE ABOUT SOMEONE TODAY
I agree it's nice to find someone out there that can sympathize with what you are going through. We haven't been married (6years) as long as you & your husband but it's still very painful to watch the one you love suffer in so many ways. My husband is tube fed as well. There are times when they would flush him with sodium to adjust his sodium levels. But now he seems to be okay. Yesterday he started feeling worse again, his temperature went to 104. Tonight it is back down to 101. They started him on an antibodic that seems to help the temp. however his blood work came back fine, not showing any source of infection. He just has a lot of secretions for him trach right now. Respitory problems seem to go hand in hand with the brain lesions. His body temperature does change from time to time because of the lesions on his hypothalmus. This regulates your body temperature & your sleep patterns. Which are both an issue for Steve. Does your husband take seizure meds, Steve was recently changed from Dylantin to Keppra? Steve seems to be doing better on the Keppra. I'm only 33 years old & right now i feel way beyond.....my years. This is something i wrote the other night, so it really makes you feel good when someone really cares. Do we really care?
This is a good question I have to ask even myself. Our society today teaches us to be selfish people. We are what I call surface caring people. It’s common to ask someone how he or she is but we cross the line if we answer honestly with how we really feel. Most of the time a person doesn’t really want you to cast all of your cares upon them. I’m writing because I truly know how it feels when your polished and shined on the surface by people today. Everyone says they care but do they really?
My husband is 36 years living in a nursing home due to undiagnosed multiple brain lesions. He is bedridden at very young age and is just now becoming more alert.
It’s really like watching a grown man go thru his childhood years again, rediscovering the simple pleasures in life. I feel like everyone that knows him has put him in bubble or sat him on a shelf, like a past memory that they can reflect upon from time to time.
The most painful process of watching my husband illness is that the people I thought really loved my husband have truly disappointed me. They can only deal with memories and not the quality of life my husband now has to endure from day to day. Yes! It is hard but it’s worth every moment when I see so….much life in my wonderful husband. It just breaks my heart that others are not comfortable with the person my husband has become. I hope if anyone has a friend or a loved one in a similar situation they take the time to really care and spend some time with the person and create new memories that can be cherished for always.
I must admit my greatest strength and comfort during this time is Jesus, yes he tells us in his word to cast all our cares and burdens upon him. This is truly my hope. I just pray that all mankind follow his example of unselfish love. The greatest gift!
MAKE A DIFFERENCE – CARE ABOUT SOMEONE TODAY