zoohouse
Senior member
- Joined
- Jan 14, 2013
- Messages
- 959
- Reason
- CALS
- Diagnosis
- 07/2012
- Country
- CA
- State
- B.C.
- City
- Salmon Arm
I have been fairly quiet on the forum lately, as I have been keeping myself very busy, so I don't have to think. We have our routine down, to the point that I can just about do it in my sleep, and our life has been feeling so "normal." Tim has just about all the equipment that you can get, and we have everything set up so that I can manage him easily on my own even though he is completely paralyzed. Up until this last month he seemed to have hit a plateau and I was able to forget, for a while, that he has a terminal illness.
But lately he is having a lot of difficulty swallowing, and has to be at just the right angle so that his head doesn't fall forward, and he has it far enough forward that he can swallow. He has been singing in a band if you can imagine, and loving life to the fullest, and that was not a typo. But one month ago after a band practice he couldn't swallow at all, and his voice was very weak. He became quite frightened to go to bed, but after taking his atropine and waiting he was able to settle into bed after an hour. I told him that he had tired himself out, talking and singing, and if after the next practise it happened again he would have to give up singing. Well unfortunately he has had to give it up, and in spite of that I have noticed a change in the quality of his voice. All his food is now blended, and I am organizing the equipment to start tube feeding him.
Through all of this he has maintained the most amazing positive attitude, always quick to point out the beauty around him, joking around, and never forgets to say thank you to anyone that helps him. He has touched so many lives that there are only 2 days in the week that we don't have someone over to visit. But he is getting more tired, so I have had to stop the practices at our home, and cut back on some of the visitors. In the last 2 weeks we had 2 very close calls were we could have lost him, and the worst one I was responsible for.
We were just getting ready to go out and shop for plants and I told him I was going to go dry my hair then we would leave. I usually have him with me, but I was only going to be a few minutes. Well just after I left the room he pulled his head forward to swallow and it fell forward, and he missed his mouth piece to his ventilator. He tried to call me but I didn't hear him, and then I turned on my blow dryer. I couldn't hear the alarm on his ventilator going, until after I shut off the blow dryer. As soon as I heard it I ran to him, but his head was slumped forward and he was blue, but thankfully still conscious. I put the mouth piece in his mouth and he took a breath, and very slowly started to pink up. There doesn't seem to be any lasting ill effects except that I was in tears off and on that entire day, and have been on the verge of tears ever since. I can't ignore that the end is coming, and even though I have a strong faith I am dreading what is coming next, more than anything else in my life. I have had a lot of losses, but he is my light, my love, and my life.
I have been a demon in the garden, working until I can hardly move because I know how important it is to him to see it all completed. I have come here to reach out to all of you that know what I am going through, for comfort and prayer.
I am sorry this is so long, it is just that I have been holding a lot in for so long, but I just can't any more.
Paulette
But lately he is having a lot of difficulty swallowing, and has to be at just the right angle so that his head doesn't fall forward, and he has it far enough forward that he can swallow. He has been singing in a band if you can imagine, and loving life to the fullest, and that was not a typo. But one month ago after a band practice he couldn't swallow at all, and his voice was very weak. He became quite frightened to go to bed, but after taking his atropine and waiting he was able to settle into bed after an hour. I told him that he had tired himself out, talking and singing, and if after the next practise it happened again he would have to give up singing. Well unfortunately he has had to give it up, and in spite of that I have noticed a change in the quality of his voice. All his food is now blended, and I am organizing the equipment to start tube feeding him.
Through all of this he has maintained the most amazing positive attitude, always quick to point out the beauty around him, joking around, and never forgets to say thank you to anyone that helps him. He has touched so many lives that there are only 2 days in the week that we don't have someone over to visit. But he is getting more tired, so I have had to stop the practices at our home, and cut back on some of the visitors. In the last 2 weeks we had 2 very close calls were we could have lost him, and the worst one I was responsible for.
We were just getting ready to go out and shop for plants and I told him I was going to go dry my hair then we would leave. I usually have him with me, but I was only going to be a few minutes. Well just after I left the room he pulled his head forward to swallow and it fell forward, and he missed his mouth piece to his ventilator. He tried to call me but I didn't hear him, and then I turned on my blow dryer. I couldn't hear the alarm on his ventilator going, until after I shut off the blow dryer. As soon as I heard it I ran to him, but his head was slumped forward and he was blue, but thankfully still conscious. I put the mouth piece in his mouth and he took a breath, and very slowly started to pink up. There doesn't seem to be any lasting ill effects except that I was in tears off and on that entire day, and have been on the verge of tears ever since. I can't ignore that the end is coming, and even though I have a strong faith I am dreading what is coming next, more than anything else in my life. I have had a lot of losses, but he is my light, my love, and my life.
I have been a demon in the garden, working until I can hardly move because I know how important it is to him to see it all completed. I have come here to reach out to all of you that know what I am going through, for comfort and prayer.
I am sorry this is so long, it is just that I have been holding a lot in for so long, but I just can't any more.
Paulette