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.

Denied

So it's official.
Hubby received his official decision from the Veterans Association regarding Aide and Attendance and the word is that although he does need 24 hr care he does not qualify for it since his condition is not part of his service connected disability. I was aware this would be the road block.
SO...
Onward we go just like we have in the past. And that's okay :)

I did learn one thing in the decision.
Apparently his records indicate that he was showing signs of dementia in Jan 2005.
How was I blind to this?!

Oh well, I'm not going to dwell on it as a negative.
I'm going to concentrate on the here and now and I am FULLY going to concentrate on his words to me last night.

I thought he was asleep when I crawled into bed.
He stirred and rolled over toward me and said,
"You know, I sure do love you."

You know what Hubby? "I love you too" :)
And I gave him a good night kiss.

She's supposed to be my wife

That's what Hubby told the Dr he saw the other day when asked who I was.
But Hubby doesn't really believe it. sigh

Sometimes I just get so tired of caregiving for Lewy Body Dementia that I don't want to even think about it, talk about it, research it,  blog about it, read about it. Unfortunately it's like air, caregiving is vitally needed so you go into auto pilot. Or at least in my case you do. I'm hoping it's just this dreadful heat we are having. A body doesn't want to do anything in it.

So where are we? Lets see. Still in our holding pattern except for some unexplained anxiety Hubby has been experiencing lately. We had an appointment with the Veterans Admin for Aid and Attendance a few days ago. We don't think he will qualify because his problem is not his service connected disability. I didn't really have high expectations for it but we followed through knowing all they can say is No.
So we get the appointment to see the Board Dr.
Hubby needs a 2 hr window to get ready to go ANYWHERE! Our appointment is in the afternoon so I don't have to get him up early.We have over an hr drive which is always difficult for Hubby. He sleeps or rides with his eyes closed so that helps. Big City traffic distresses me AND Hubby. The traffic itself for me and the amount of stimulus for Hubby.

As we prepare for the day I ask Hubby if he would like to stop and eat before we go. Hubby agrees and we stop at out favorite restaurant for lunch. Hubby allows me to use his wheelchair to take him in. This is actually the second time he has conceded to it's use getting into the restaurant for which I am VERY grateful.

Served and filled we make the trip to the Big City.
We arrive in plenty of time, check in and sit in the waiting area.
We are quickly called to the Dr office.
Now if you are familiar with the V.A. you know this is a rare thing indeed!
The Dr proceeded to ask Hubby a few questions.
Name,  check but spelled his middle name wrong
Date of birth, check
Age, He didn't know and looked to me for the answer
Who I was, answer, "She's supposed to be my wife". Still stings but shake it off.
Where were we, check
What was the date, unknown
What was the day, another look at me for answer
Who was the president, unknown
What town did we live in, check
What was our address, unknown and looked to me for answer.

Then Dr asked me some Qs about Hubby's abilities to care for himself , walk or be alone.
Dr showed me Hubby's THICK file that was going before the board.
Dr explained what our obstacle was.
Dr said he would help all he could and we were finished.
People this took ALL OF 10 MINS!! from wait time to leaving.
Going to the bathroom before the hr long trip took longer!!

Every one of these Qs could have been asked over the phone, or gleaned from his records. Especially from the form that his PC Dr filled out for this very thing just a few months ago!
The government, sheesh!

So anyway we make the trip home, stop by the fruit stand for the green tomatoes on the way and a trip to the store for milk then home.
I do not know what happened at this point but Hubby became agitated at me and refused to let me get the wheelchair to help him get to the house. For Hubby, the walk to and from the car is rather long so he uses the wheelchair and I am considering a few yard and parking modifications.

His anger was verbal in nature and the heat was high. He refused to let me assist in any way and told me to get away from him. The more I tried to get him to explain the more anxious he got. Realizing I wasn't helping the situation I left him there and came into the house watching him from the window.
Hubby struggled to get around the car but eventually made it only to get 'stuck' as soon as he needed to let go of the vehicle and walk without support. Seeing this I offered to assist in a matter of fact non threatening way.  "Honey, I'll be happy to get the chair for you." this was met with a hard look and a wave off. Again I retreated to the house. Watching Hubby let loose of the vehicle and 'freeze' in place was heart wrenching. I worried about the heat also. Yet no matter how many times I offered assistance he refused. Eventually he walked to the front of the car into the shade, was able to get a hold of the house and work his way to the porch along the wall and to the front door.
Once inside he was hot and HOT!
I left him alone as he went to our room, undressed and got into bed. I never knew what set him off but as the night came he seemed in a little better mood.

Anxiety continues to plague Hubby but not like that day. At least he isn't angry and I can deal much easier with non angry issues.
Most of the anxiety seems to hit at night, Hubby's internal thermostat goes haywire and he is usually burning up. I put the fan on him directly and it seems to help.

Another thing I noticed is that when this happens to Hubby he stresses about my whereabouts and hollers for my presence. Most of the time I am in the room pounding away at my FB games or looking for amazon deals so if I happen to be in another part of the house he will begin to yell "Honey!" Which I find funny that he does considering he isn't quite sure who I am, but then again, Hubby has always been a flirt ;-)
I'll come running only to find him confused, restless and unsure of himself. I make him comfortable as possible and sit with him until he sleeps.
Specifically last night I was busy in the kitchen when Hubby yelled for me. At first I said I would be right there, hang on, but he yelled again leaving me to believe he had fallen and needed help or something like that. I ran to the room to find him in bed but distressed. I asked if he was Okay to which he replied, "NO I'm suffering" I snuggled up to him until he settled down.

Anxiety is the new norm.

Another new norm is Hubby's declaration of his death. He talks about it quite often.
It goes along with his desire to move away and 'go home' to live alone. Wherever home is.
Hubby isn't sure where home is exactly but he knows this place he is in is not it. He believes this is a hospital that he has been mysteriously brought to and I am his caretaker everyone is trying to convince is his wife. I feel bad for Hubby but if I were the one needing care I think I would want me to be the caregiver. Although I tire, I'm pretty good at it. LOL!! ;-)

And me? I have finally overcome my mental hurdle about exercise. I wanted so much to attend a gym not just for the exercise but for the motivation, support and communion with others. But it was out of my reach so I sat frozen basically in my own depression UNTIL I watched an old episode of Bones ( I love that show) anyway, in the episode she and her partner Boothe were interrogating a woman. The woman was quite large, to be polite, and as they walked in the room, Boothe covered his nose and asked "What's that smell?" Bones, answering in her direct, scientific manner she has, said, "Mold, morbidly obese people have a tendency to develop mold in their fat creases." I nearly fainted and my hurdle for exercise was jumped! I did not wish that to be me.

So I started changing my eating habits and began ATTEMPTING (major emphasis) the couch potato to 5K challenge. It has NOT been easy as it's taking me 2 weeks to accomplish week 1 but I can see results not only on my scale but in the way I feel.
I use the 20 mins specifically for prayer time (in addition to the sporadic throughout the day conversations)
I changed how I thought about me, God gave me a job, caregiving. How could I continue to do it properly without the right tools? My body and mind are all part of the caregiving package and I was not using them to do the job properly. I could feel my own health failing. It needed repair. Just like any piece of equipment we have that might need repair I would see to it that the piece was repaired or replaced.
Since I didn't want to be replaced, ie having to place Hubby due to major illness of me, it was time to repair the Temple.
In my eating change came Hubby's eating change. Healthier choices, smaller portions, more fruits and veggies.
No candy, few sugars. Hubby's change is less restrictive than mine. If he asks for it he still gets it but I don't volunteer those things or have them readily available, well except for the fudgepops. They will have to be a special trip to the store.
I even tried to give up my morning coffee but that was the result of a 3 day headache! I couldn't live with that so I welcomed it back with open arms. I'm gradually cutting back on the amount and it seems to be working.

I purchased a juicer for fresh juice.
I LOVE IT!
I HATE IT!
I only hate it because it gives me thoughts of  wanting to plant a garden next year! LOL!! ;-)

These changes are not easy, I won't lie and say they are a breeze.
They haven't given me miraculous power to be superwoman. They are just a step I needed to take for me.
I still get tired of caregiving.
It consumes my every thought and action.
Even when the aide is here is still not down time. I must run errands and be aware of the time.
Everything I do has to be with Hubby in mind, even at the back of it.
And if it's not supposed to be, how do you separate him from it?

I'm still challenged in my caregiving roll but I'm trying to stay positive.
I know the changes are inevitable and I hope to be able to roll with them.
There are just some days I'm in caregiver overload and I want to sit down and say, No thanks, I'm good.

Numb

I started to say Lewy bodies have me feeling numb but realized numb is no feeling at all.

SO just what am I feeling?

Here's our update.
The hearing for Hubby's guardianship went well and I was appointed. As such I will now need to file an annual accounting of expenses and health update. I have no problems doing this. What's a little extra work ;-)

Seriously, I was very pleased with the proceedings and the Judge and the Bailiff were as supportive and helpfully informative as you could imagine. As I handled the case Pro Se (by myself) The Judge took me off record to explain some of the responsibilities of guardianship. The things I was allowed to spend Hubby's income on and the things I was not allowed to spend it on. It struck me as odd but understandable, as most spouses never have to declare themselves as guardians, that I was able to spend Hubby's income on His food but not mine. ALL expenses had to be for Hubby's benefit and Hubby's alone. The Judge in his kindness did smile and say he would grant me a generous salary for the 24 hr caregiving I provide.

The bailiff informed me of a couple of things I did not know of concerning the veterans. He is a retired Military and wanted to pass on some information he felt would be beneficial to both hubby and myself.

The first was a grant for "Special Adaptive Housing"
The second was a "Veterans Mortgage Life Insurance"

We do not qualify for the Life Ins due to Hubby's age.
I will do more research on the adaptive housing.

All in all I was very pleased with the outcome of the day and VERY appreciative of all the help.

We still have a ways to go until we get back to our financial normal. Hubby's biggest income is still floating around somewhere. We have yet to receive it and that loss still keeps us in financial distress for now. Savings (big laugh, should be called squirrel money) plowed through to cover last months expenses which are now due again for this month. It's a waiting game.

Now my life sits in limbo. Can't move forward can't move back. Numb.
Maybe that's a good place to be right now.

As for Hubby. Informed that a guardianship was taking place. Properly notified, Dr discussed it with him and Hubby even agreed it would be a good thing. Nothing done behind his back. He becomes confused as to exactly what would happen. He is under the impression that I will now keep him locked up. I tried to reassure him that is NOT the case. He actually became so upset that while his sister was here he verbally lashed out at her for no reason. While I was trying once again to explain the reasons behind the guardianship, his sister injected that it was so I could pay the bills. His reaction to the comment she made took me by surprise. At one point he rose from his chair as to strike her. I was floored. He said some very hurtful things to her. Bless her heart for understanding.
I would not have been surprised if the anger and hostility had been directed at me. It has been before and I can deal with it, but his sister who he has always admired and respected had to be on the receiving end of it. So sad.
She stepped away from the situation and went home. I called to make sure she was OK and she assured me she was. God bless her. I know that had to hurt.

As Hubby slips farther and farther the things I want to protect others from are becoming increasingly difficult. For the first time while talking to our son, Hubby called him by another name. I could tell my son was hurt by the tone of his voice but I don't think he would ever admit it completely. He tries to be strong for me. I try to be strong for my family. I suppose we can't keep them completely protected.

Wow this is such a depressing post so I shall stop!
Better start looking for the positive.