dreading the yearly assessment

[gooseberry]

Steve goes into James Haley for his yearly ALS assessment. They run you through a bunch of test and order equipment. They train caregivers on equipment and necessary care to come. I am getting very anxious thinking how it will all turn out. There have been so many changes since last year.

 

[Atsugi]

You will be in the best hands, especially the SCI clinic. Let us know how it goes.

 

[affected]

When is the assessment date?

It must feel scary, but hopefully it actually helps you to keep moving forward with your care of Steve. Can they also access more help for you or respite?

 

[gooseberry]

Well Tillie , that is the big question. Home health is out of cash. The home health coordinator is trying to find money with the head of the hospital. Steve 's breathing still in decline. He has finally decided to try the hospital bed.

They seem to have the ability to say the same thing I say but Steve listens to them....going to need a couple private comversations so things are in place.

I love the group at the SCI area. Steve does too. Just dreading what we will hear.

 

[gooseberry]

Supposed to be bowel care trained, lifts, wound care, etc. All in preparation.....it makes me sad.

 

[affected]

So they will be giving you crap training?

It's all incredibly sad, as a gross understatement of the year!

Now you are left wishing they would get their finances sorted and get the assessment over, and hoping it takes a while so you don't have to face it. Seems like that proverbial rock and hard place

 

[scaredwifetx]

Steph, my thoughts will be with you. I hope something positive comes out of the assessment. Hugs!

 

[ShiftKicker]

I hope that the new information and training affords you some confidence and security in knowing what to expect.

F

 

[gooseberry]

Yeah...me too. Kind of curious exactly how I will be proving proficiency in crap training

 

[ShiftKicker]

It's really important to know your s**t.

I don't want to make light of it. OK, I do, but not in any way that means I'm not aware of the profound changes you've had to make of your life, your expectations and your relationship with your PALS. Having such a reminder as a big yearly visit would jerk you out of the (hardly!)mundane day to day and force you to look at the larger picture. I'm sorry for that.

 

[gooseberry]

That is the thing...you get all the bad news and good news at one time

 

[gooseberry]

Tomorrow is d day. Steve goes in at noon.

 

[ShiftKicker]

I hope it's not too much of a trial for you both. My wish is that the team is informative and reassuring about Steve's progress, and that it ends up reducing your stress.

Fiona

 

[affected]

Not sure what time for me noon tomorrow is for you so I'm going to start sending much love and positive thoughts your way from now until we hear how you went xxxxx