Surprise Reaction

No matter how much we prepare for something, ask for, anticipate and expect, some things we just are not ready for when it arrives.

Hospice 

It's a wonderful organization. They have been involved in my life more than once so I am familiar with them and appreciate what they do and how they do it. I always knew that when end of life care came for Hubby I would be glad to have their services and I have no doubts that I will be glad now that Hubby has finally qualified for it.

But WAIT!!

How come the news I was waiting for feels so bad? Why was this distressing? I should be relieved so why is this different than when my grandmother, mother and friends we cared for had them. We were glad to have Hospice on board then. Relieved actually that when we needed something, Hospice was a phone call away. Helpful and compassionate. Heck, Hubby and I even volunteered for our local Hospice. I expect nothing different in the level of care and attention, education and support. And yet, the tears came after the notification and they caught me off guard. stupid tears.

I've tried so hard to maintain a level of dignity for Hubby and the addition of Hospice will ensure I can continue to do that for the man who is piece by piece losing himself. Another piece gone is his ability to take his meds most of the time. I have started to hand feed them to him. A sip of water, pills, another sip of water. He has many times asked me what he should do first so I usually talk him trough by holding the cup and straw, encouraging a drink, inserting the pills and offering another drink. I don't have to do this every time but the frequency is increasing.

He is also experiencing more anxiety, most of the time upon waking from a dream he can't shake. He is always worried something is wrong, no matter how many times I assure him everything is fine. I can't even go to the bathroom without him opening his eyes if he suspects movement in the room, that usually comes in the form of the dogs jumping off his bed when I get up. Even the dogs want to know where I'm going and if everything is ok. One day I almost expect to find Hubby along with the dogs, lying in front of the bathroom door awaiting my exit :)

Yep, everything is fine as long as the tears stay away.

Are We There Yet?

According to the V.A. we aren't.

Hubby had an appointment for Palliative/Hospice care the other day.
I allowed 2 hrs for Hubby to get up, have coffee, eat and me get him prepared for his appointment.
This time frame is usually a good one although there are times we cut it close.
This particular day it took the entire 2 hrs just to get Hubby out of bed.
It wasn't because he didn't want to go, it was because Hubby has NO concept of time.
No matter how much I prodded him he just didn't go. When he finally did, our window closed and locked, so I had to cancel.
At this point, knowing the importance of this appointment I was very frustrated but over and over I had to remind myself that Hubby has no control over his time concept.
When I told Hubby we had to cancel he didn't understand why.
I tried explaining we had an appointment but the word appointment was lost on Hubby and he couldn't understand why we couldn't just go and get one while we were there.
I suggested Hubby might appreciate the the time to get a little more sleep, he did.

I called and cancelled and was told someone would call me back and we would see what we could do on the phone.
Nobody called that day.
Wed while my aide was here, someone called and I missed it, they said they would call back.
Thursday, nobody called.
This morning my aide is coming again and I will need to make the weekend run for milk and such. I fretted someone would call while I was gone so I called instead.
Contact!!

ACCORDING TO THE V.A. guidelines for Hospice for dementia are pretty strict.
After a long search, I found this Functional Assessment Scale (FAST) used in determining eligibility.
Besides a list of things Hubby does qualify about he must have..

 A)Ability to speak limited to approximately ≤ 6 intelligible different words
in the course of an average day or in the course of an intensive interview.
**Hubby can still have fragmented sentence conversations that make some sense.

B) Speech ability is limited to the use of a single intelligible word in an
average day or in the course of an intensive interview

C) Ambulatory ability is lost (cannot walk without personal assistance.)
 **At this point, I have the ability to get him up and get him to appointments. He can help with transfers and can walk very short distances as long as he has something to hold.

D) Cannot sit up without assistance (e.g., the individual will fall over if
there are not lateral rests [arms] on the chair.)
** Close on this one, he can sit up for short lengths of time on the side of his bed but eventually tumbles over.

E) Loss of ability to smile.
**Hubby can still smile.

F) Loss of ability to hold up head independently
**Hubby can still hold his head up.

 AND

One or more of the following conditions in the 12 months:
Aspiration pneumonia
Pyelonephritis (kidney infections, I had to look it up)
Septicemia
Multiple pressure ulcers ( stage 3-4)
Recurrent Fever

These have not occurred for Hubby

So our course of action is to stay where we are doing what we are doing until we get there.
Palliative Care .

My team of Drs and our HHA providing comfort, ease and quality of life for Hubby.
We know that there is no cure for Lewy Body. Maybe one day there will be :)

I think I was a little disappointed that Hubby didn't qualify only because I didn't get the opportunity to say, "No Thanks, we're good with what we have " ;-)
One good thing might come out of the process. The lady I spoke with said that she would submit Hubby's HHA renewal NOW (it expires this month)
Let's hope she has a little more pull in getting it through beforehand, but I wont hold my breath, it is the V.A. after all.