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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. :
 

vickim

Very helpful member
Joined
Sep 20, 2012
Messages
2,280
Reason
Friend was DX
Diagnosis
03/2012
Country
US
State
MO
City
aaaa
I am so sorry you or anyone has to go through this. It sounds like he is still in denial. He must be a very proud man and has a hard time accepting help. Everyone processes in their own way and own time. I wish I had advice that could help.

You are a good soul, loving wife and strong. Your story is beautiful and sad, like so many here. The CALS have a tough job and you are facing yours like a trooper. All I can do is offer support. I am not a PALS but my illness leaves me utterly exhausted at times and I have been very stubborn in letting my family help. But I have begun to let them in. It makes them happy.

You just vent away and we will listen. Maybe someone here will have some advice to help you. All I can do is listen.
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,681
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
this is beautiful and from the heart! I get it, we all get it, and we all understand.
 

Katie C

Very helpful member
Joined
Aug 1, 2009
Messages
1,563
Reason
Lost a loved one
Diagnosis
07/2009
Country
US
State
CA
City
San Jose
Trust your instincts about the cough... two weeks is a long time to wait. Either ask your neighbor (and guardian angel! what a treasure!) what she thinks, or call your doctor's advice line. PALS can go into pneumonia so fast...
 

skipper66

Very helpful member
Joined
May 20, 2012
Messages
1,527
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
IL
City
SMALL TOWN IN
Thinking of you! Wish I had some advice for you. You are in my prayers. Please feel free to vent anytime. Kim
 

WellsRuby

Distinguished member
Joined
Mar 16, 2012
Messages
187
Reason
Loved one DX
Diagnosis
03/2011
Country
US
State
Texas
City
Houston
Pkmado, we all understand. I have felt the same way many times. Just keep on being there for him. I now understand the meaning of one day at a time.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,169
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
so beautifully written and I get it totally.

Some days are harder than others but they are all hard, and one day at a time is definitely all I can manage, even that is too much, an hour at a time sometimes is more than enough.
 
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