Things that matter and Caregiver Class

Mother Nature keeps me on my toes! Yesterday the winds moved in with 40 mph gusts! I cancelled my Duck Egg plans.

I did take a walk at sunrise in the nice cold fresh air. It was 31 degrees and frosty at the house, but much warmer on the ridge. The winds didn't start until after I'd gotten back from my morning road walk.
I don't know why, but I feel I have a better attitude if I start the day with a walk down the road and get fresh air. 
I tried out my 'new' hiking pants that are lined with fleece. I really love them! I also purchased a winter coat. Lime green.

Normally you'd see me purchase grey or black. Nope, for some reason, I decided Lime Green was good as it is very visible. You know, for those times I hike at KVR or some other obscure place.

Enough of that.

I got some indoor projects done while the winds were whistling outside. I covered the window air conditioner from the inside. Today, I'll get the outside covered too. That involves a tall ladder and someone to be there while I put the cover on. 

I worked on my CareGiver Class. Have I learned new things? Sort of. But there is a lot of specific things I would have liked to seen covered. Not just how to deal with emotions and feelings [very important] but how to navigate the convoluted VA system. Assistance in filling out paperwork and forms. Where to go when a veteran needs emergency care. I found the class lacking in those areas.

One of the interesting things is, the instructions ask that the caregiver make sure he/she has a Durable Power of Attorney in case the veteran/spouse is too ill to handle that. A good idea.

However the VA doesn't recognize the DPOA for disabled veterans. Because the Veteran gets federal funds, they need to have an appointed Fiduciary. That fiduciary has to be 'investigated' by the VA which includes a home visit. Generally, the Fiduciary can be the spouse, unless the VA finds that the spouse is unfit in some way to be a Fiduciary. 

I have gone through this process and there are rules to follow while being a Fiduciary. I would have liked some of the other caregivers in my class to understand the process they could face in the future.

None of this was discussed in the CareGiver program. This class was helpful if a person had never been a caregiver at all. It did emphasize self care, asking for help from family and friends, and how to reduce stress.

These are all things I've gone and figured out for myself over the years. 
Stress management.
Exercise for the mind and body. 

Asking for help from family or friends. This is a double edged sword. Family can be far away and they can be rather unhelpful as I discovered during the last years of my MIL's life.

Neighbors have been helpful in my case.

Apparently I am eligible for some respite care. That means someone is hired from the rural program like Helping Hands and they would come out to give me a break of some sort.

Our rural program is stretched very thin. I found that out when my MIL was supposed to get assistance to stay in her apartment. There simply are not enough people to go around to help those in need.

Let's not forget the fact that a veteran who doesn't trust people, would hardly let a stranger in the house or be comfortable with someone he/she doesn't know. 
Let's add Covid-19 to the mix and really...

do you want someone from the outside of your 'bubble' coming into your house?

So I am in the last week of this class and am filing out the paperwork for a newly Expanded Program of Comprehensive Assistance for Family Caregivers.
There is a long form to fill out. A VA exam, a home exam, and the extensive scrutiny of records by the VA. 

However the VA feels it is far better to offer a stipend to a Caregiver to stay home and care for their ill husband/wife rather than paying for nursing home care. True right? 

I've been doing it for years already. My husband does say thanks for all I do. 

I didn't sign up for this. But I am not angry about it. I do care for Rich.
Without sounding like a total shit, I would like to say that I feel his family could really step up a bit and offer to give me a break for a day or two.

But experience over the last 5 or so years has told me a different story. 

Things that matter:

 
We are healthy right now.
We are together right now.

We have a roof over our heads and food for ourselves and our critters.

That matters.

The rest is just noise.

Welcome to the VA...or not.

When you call a provider at the Veteran's Administration you hear: "Welcome to the VA..." the voice continues to tell you, "If this is an emergency please hang up and dial 911..."

Then comes the menus to take you to different areas of the VA. It started innocently enough. I called the social worker that had been in contact with us to ask a rather simple question.

Had the VA approved or authorized the follow up appointments with Neuroscience and the Neurologist that had treated my husband on May 6th?
She didn't know, but "How were things going?"

So I told her that Rich had is up days and down days. That we had done language exercises and found that some words were beyond his ability to spell or write down. I didn't know if this was new or not, I don't think he'd been asked to do any writing since his stroke.

She said she'd get back to me.
The phone rang a bit later as we were packing up the car to go fishing.

It was a case nurse from the VA. The writing issue concerned her and she wanted us to drive to the ED in Madison right away. I explained to the case nurse that I didn't think the writing issue warranted a 90 mile drive. Rich did not have stroke symptoms that were an emergency. She sounded rather displeased and said she'd put a note in that he was to see the ED [Emergency Dept] after speech therapy. She wanted a CAT scan done. She'd also notify his provider to get a consult from Neurology and ask for his records from GLHP.
I asked why no one had followed up with GLHP yet.
She had no answer.

We went fishing.

At our appointment with the Speech Therapist, Elizabeth asked us how things were going. I saw that she had printout in front of her. She knew about yesterday's call and the follow up notes that strongly suggested we come to the ED.
We were able to establish through some testing that Rich did indeed have Agraphia along with Aphasia. Both were mild but extremely frustrating to Rich.

Was this new? Probably not. We were given exercises to practice at home to challenge the writing and speaking. We left with a lot of thank yous. We'd see Elizabeth in a bit less than two weeks. She had felt that Rich had improved since last week. We left and were reminded to go see the ED.

Oh yeah. The nurses took his BP and asked a few questions. "Why were we there?" I explained because the case nurse demanded we come when I spoke with her yesterday."
The nurses left the room and then walked us to another waiting room.

I checked the clock. Shift change time.
We sat down and waited.

A man with a white coat opened up the waiting room door and asked for Richard. We stood up.
"Why are you here?" he asked Rich. So...my first thought was dislike of this doctor's manner. It was an aggressive manner and his face was closed not open. If you watch people, you would understand what I mean.
Rich tried to answer.
The doctor tilted his head a bit, then interrupted Rich.

I was able to begin to explain what was going on when the doctor held up his hand and said, "Just go to Gundersen and get all of the notes and records. Get the imaging and physically hand carry it here. I'll make a consult note to Neurology. They will call and set up an appointment. Bring them the materials."

This conversation happened as we stood in the waiting room. This person who called himself a doctor was not interested in the patient before him. He was interested in 'getting rid' of him so as not to have to deal with it.

However, the doctor was right. The VA was pretty bad about getting information from another treating facility. Their in house records were fantastic. But the method of getting other records was archaic and next to impossible.

Two days later? I still don't have an answer to an approval for a follow up appointment to see neuroscience. True to VA fashion, they would rather keep his treatment in house so to speak.

I see I will need to call the social worker again. She is going to hate me.
All I wanted was an answer to how the follow up appointments were to be handled.

Welcome to the VA.