Pkmado
Active member
- Joined
- Aug 11, 2012
- Messages
- 49
- Reason
- CALS
- Diagnosis
- 07/2012
- Country
- US
- State
- CT
- City
- Niantic
Sometimes I write posts on notepad and then don't post them. Like everything with ALS if you wait just a bit it no longer applies. Sometimes you just feel like your whining even though you know your just venting. Pointing out the lack of communication has promoted me to share one of those notes which was written for the purpose of posting in this forum. This was one week ago.
We are beginning to enter so e very difficult times. Not that we have not had our ups and downs before this.
Short tempers, misunderstandings. Frustrations when I cannot understand him and get it wrong. Hurt when he excludes me and does not get that we are partners on this journey even though the destinations are not on equal ground. It's all about loving someone and being willing to take the ride into the house of horrors because you would never consider sending them in on their own.
I educate myself as much as possible. Choose carefully what I relay to him and when. He is coughing a great deal. Phil was Up all night last night. I have read the ALS Breathing Manuel. this can be serious. Cannot be ignored. Can be very serious. He thinks we can wait and address in two weeks at our next visit to Hospital for Special Care.
His legs are still holding firm but his upper body is collapsing under its own weight. Still waiting for his chair to come in courtesy of VA. I think he might do better if he had it as of this place in time he is housebound sooner than he needs to be.
He moves from the couch to the computer. Still does not use his chair. (It's just not comfortable). He does not watch movies, ever. At least this would pass some time for him. Give him a reprieve from reality.
We are so lucky to have our wonderful friend and neighbor who happens to be a retired nurse. Worked with hospice. Her friendship and expertise is at our disposal. He gets upset if I enlist her help on issues I am perplexed with. Like a rash under his arm. I was treating it with Neosporin. It was a fungus there for needing a $10 over the counter fungicide. Jean Knew in two seconds. Why suffer with an itch you can't scratch because your too proud.
I get that every loss is devastating. Every task less able no matter how small is a defeat. I think he has become depressed but the chances of getting him to agree to medication is slim to none. Anyway we are waiting for a woman who is a masseuse who is going to give him one of his much loved massages. Her price was so ridiculously low I know she is coming here to do this out of the kindness of her heart. Dropping the ensure on the rug is small stuff. (The cat was excited!) Johanna's massage is the big plus. Get upset quick and get it over with. Count the blessings. Maybe that's just easy for me to say. I do think antidepressants would be a big help.
It would help if I had more control over the water works but there seems to be not too much I can do about that. I do take antidepressants, can't imagine this stuff without them.
Oh well just venting to the "been there done that crowd"on this forum. Thanks for listening. :
We are beginning to enter so e very difficult times. Not that we have not had our ups and downs before this.
Short tempers, misunderstandings. Frustrations when I cannot understand him and get it wrong. Hurt when he excludes me and does not get that we are partners on this journey even though the destinations are not on equal ground. It's all about loving someone and being willing to take the ride into the house of horrors because you would never consider sending them in on their own.
I educate myself as much as possible. Choose carefully what I relay to him and when. He is coughing a great deal. Phil was Up all night last night. I have read the ALS Breathing Manuel. this can be serious. Cannot be ignored. Can be very serious. He thinks we can wait and address in two weeks at our next visit to Hospital for Special Care.
His legs are still holding firm but his upper body is collapsing under its own weight. Still waiting for his chair to come in courtesy of VA. I think he might do better if he had it as of this place in time he is housebound sooner than he needs to be.
He moves from the couch to the computer. Still does not use his chair. (It's just not comfortable). He does not watch movies, ever. At least this would pass some time for him. Give him a reprieve from reality.
We are so lucky to have our wonderful friend and neighbor who happens to be a retired nurse. Worked with hospice. Her friendship and expertise is at our disposal. He gets upset if I enlist her help on issues I am perplexed with. Like a rash under his arm. I was treating it with Neosporin. It was a fungus there for needing a $10 over the counter fungicide. Jean Knew in two seconds. Why suffer with an itch you can't scratch because your too proud.
I get that every loss is devastating. Every task less able no matter how small is a defeat. I think he has become depressed but the chances of getting him to agree to medication is slim to none. Anyway we are waiting for a woman who is a masseuse who is going to give him one of his much loved massages. Her price was so ridiculously low I know she is coming here to do this out of the kindness of her heart. Dropping the ensure on the rug is small stuff. (The cat was excited!) Johanna's massage is the big plus. Get upset quick and get it over with. Count the blessings. Maybe that's just easy for me to say. I do think antidepressants would be a big help.
It would help if I had more control over the water works but there seems to be not too much I can do about that. I do take antidepressants, can't imagine this stuff without them.
Oh well just venting to the "been there done that crowd"on this forum. Thanks for listening. :