How things change

When one becomes a 'CareGiver' life changes. I used to work 30 hours a week and do odd shifts as a security officer.

When Rich had Throat Cancer I had to drive him 180 miles a day for his radiation treatment. My bosses re-arranged my schedule to work on the weekends. I did that until the day he had an Anaphylatic shock to the chemo treatment. 

Two days after getting out of the hospital I was getting ready for work. It was the weekend and I had an early shift.
He got up to go to the bathroom and had a TIA. 

The hits just kept coming. He had another very serious stroke in 2017 that the doctors were not sure he'd recover from.
The social worker came into the room and said that they were searching for a room at the VA hospital or the VA nursing home as he could not go home and be left alone. I made the decision to give up a job I'd had for 9 going on 10 years to stay and take care of Rich. Any career choices were now eliminated.

The Pulmonary Emboli that should have killed him the next year didn't. And my new career which had been ongoing since his cancer diagnosis was now in full throttle.
I had to care for a man who was diagnosed with dementia [not severe at this point] and a long list of other health issues. The most difficult issue to deal with was the severe depression. 

So what did I do for myself during that time? In October of  2018 pre PE, I joined CrossFit to get out of the house for an hour a day during the week and to get some social and physical time. I was falling into a trap of sitting at home and watching Rich's every move. 

My care responsibilities had increased.

Of course this was about the same time that Rich's mom had been diagnosed with dementia and that huge mess. I'll skip all of that. The end result is that for a while I was the CareGiver for two people and eventually the court appointed a guardian for his mother.

Phew.

When I look back and wonder how can 5 short years have so much change in our lives?

So what have I done for me? I eventually decided I needed an out more than just hiking. I joined a gym and began to enjoy the physical and social aspect of creating friendships that were not dependent on CareGiving. 

My doctor had been concerned on my last physical about my blood pressure. Sure, it was going up and up. Now? I average a very good reading.

Maybe I am taking the right steps to self care. But perhaps I can learn more about Care...Giving...and Self Care. That's why I signed up for the Virtual Class.

One of the more interesting things about this progression of events is that I have not become hateful or bitter or even resentful.

Sure there are days that I feel frustrated and short tempered when dealing with my loved one's apathy and disinterest or his forgetfulness. I am only human.

I still find moments with him that cause me joy and laughter. That is the important part. I don't regret leaving the workforce [well, I sort of do, I loved the job, but not the stress of all the strange hours].

I've branched out to learning new things to keep myself occupied.

Covid-19 has really managed to change the whole playing field. No more gym, no visits, and isolation from others. No long day trips. Getting groceries is an adventure in masking and avoidance of others.

I'm looking now for things to do to keep my mind occupied for the winter. [The reason I decided to do a toy story book and a photo book about 2020].

I may even start sewing stuffed toys again. 

So ... Things Change, yet they stay the Same don't they?

The CareGiving Reverse Gift List

What a wonderful idea for people who spend and expend so much energy in caring for someone in their family like a spouse or a parent.
The idea is to ask for some help to make the Holidays and winter [or even just everyday life] a bit easier.

The CareGiver gets out a piece of paper and ....makes out a Reverse Gift List.
The idea is that the caregiver asks for some things that would help them and in the future they can pay it back when their time is not fully occupied by being a CareGiver.
Most people enjoy helping.
Things that are simple like a visit.
Maybe a visit so the CareGiver can have a part of a day off.

So the idea is...


On one side of the piece of paper make a list of people you trust.

On the other side of the paper make a list of Things They Can Do.
Uh oh.
My paper is getting nowhere fast.

I need to set it aside and think about it.
First the needs of the day.
Chores
Meal prep
Visit MIL in the Nursing Home
Errands
Bills
Laundry

And dream about the days when I complained about going to work.

Possibilities

Getting close to surgery!

Mondays are usually a disaster. Between phone calls from his doctor at the VA, other calls, and getting him ready for PT,...well...Mr. Procrastinator sometimes has issues with Mondays. It is like nudging a kid who doesn't want to go to school and says...
My tummy hurts
My head hurts
I don't wanna...
No, he doesn't say those exact words, but his actions are those of 'faces' and expressions when I set things up for showers or set out a change of clothes.
He'd rather not go, he tells me. I have learned that arguing is of no use. Sometimes I win, sometimes I loose.
His doctor from the VA called at 8am, which was scheduled. That set his whole day off from track. He doesn't like to get up before 9am.
Period.
He was grouchy and well, just his ol' Grumpy Self.
He talked with the doctor for about a minute and then handed me the phone.
His PCP who was not very cooperative in helping me figure out some things needed for surgery seemed all bright and cheery.
Whatever. She suddenly wanted to be helpful. This after I bypassed her for the cooperative Psychiatrist.

The extreme humidity we are having doesn't help much. Nor does the mornings of dense fog and over cast days.

The folks at Pulmonary Therapy are Angels and helped him through his rough Mondays. It seems that Mondays for whatever reason are really tough for him.
We discussed the ever present Monster of MDD or Major Depressive Disorder and he said he had no idea why he was the way he was and why things were so hard for him.
By afternoon, he is usually more cheerful and by evening, he is more like the guy I once knew.

Anyway....

On Saturday...
In order to break up Rich's monotony of TV binging, I offered to take him for a drive out to Runge Hollow where we have fished once in a while. He said NO at first and then agreed to it.
It was a nice drive.

I had a chance to park up above the earthen dam and bring out my camera. The day was rather dull looking and very grey so I thought I'd see what happened with my IR filters.

Even with barely any sun, I was able to get some great IR reflections off the grass.

And then the black and white 850nm filter...

It changes the perspective by making the green bright and the water dark. This shot would have been dreary in color.

And lastly, some X's in the water and trees from down by the lake itself.

This always reminds me of how my Grandmother used to claim that she left X's in the water at the good fishing spots.

Rich looked around and at the fishing dock then claimed he'd have to walk too far or...it didn't look like a good fishing spot. I cheerfully pointed out that I'd seen good sunfish reports from this man made lake and that the fishing dock would be a perfect place to sit after surgery and toss worms into the water.

Grumpy vs. Hopeful.
Sometimes I think that is my role in life.
He points out the misery, I point out the possibilities.

And life goes on.

Storms inside and Out

Last week was a blur. Did we really have nearly 65 degree weather and then have a snow/ice/rain storm come in that lasted from Wednesday to Friday?

Ice bombs smacked the house with high winds in the middle of the night and Charlie and I were positive that we'd have trees or something awful falling in on top of us at any moment.
In the morning when we went outside the winds were ferocious and we still had to 'dodge' the falling chunks of ice.

I knew that after the storm settled down, I'd have a lot of work to do checking the fencing and perhaps pulling large chunks of trees off the electric fence.

The weather service had said we'd get a tenth of an inch of ice. Hmmm.

Well, no wonder we were suffering ice bombs from the trees! I reattached the fence and cleared ice off the lines after the snow/rain stopped. 

I knew the snow and ice wouldn't stick around very long and I was right. By this morning it was gone.

I spent Monday cleaning up most of the debris that was left over in the yard. 

Depression is like a storm too. It is internal and can't be seen. It can swallow a person whole and those around them in a vortex of darkness....

Yesterday we had to go see Rich's old Psychiatrist. Okay, the guy isn't old. It was a doctor he saw for a long time. Dr. S. left the VA and went to New Zealand for a while and returned.

At the last appointment with Dr. Todd, ... Dr. Todd asked Rich if he'd like to see Dr. S again. We jumped at the chance.

Dr. S 'gets' Rich and they have a good relationship. Dr. Todd is fine, but he doesn't seem to 'understand' Rich that well and how could he from just reading his file and knowing him for only a year.

Let me say that the appointment yesterday gave me a bit of hope to help Rich get out of this horrible slump of depression. 

I like to believe in... hope.

Rich is in that horrid hell hole of a black hole where there is no bottom and no top. No light, no hope.

They are doing another consult to see if another Ketamine infusion will help and this doctor feels that he should have them on a more regular basis and not just a once off.

Dr. S put it succinctly. 

"Your body has betrayed you, your mind is not letting you focus on thoughts and you are in there fighting each moment of every day trying to find something. Trapped inside with no light at all. It must be pure Hell."

And this afternoon? 

More storms of the rain/thunder/lightening kind.

The Diagnosis

A month ago we went to the VA hospital in Madison for a Neuro-psychology exam. This is a brain function test of executive functions, thinking, making decisions, planning, understanding, language, perception, and ...well, you get the idea.

It was a two hour test that we did on the 14th of last month. I should say, a two hour test that Rich did last month.
I learned in Physical Therapy-Speech last year that issues a person has pre stroke generally become worse post stroke or as the PT gal said, the issues would be greater in general.

We sat down in the room and I mentally thought I was prepared for hearing the two doctors conclusions.
I wasn't.

Cognitive Disorder, specifically Vascular Dementia -- the doctors were quick to say that Dementia means Brain Changes-- the stigma of hearing "You have Dementia" is about as horrid as hearing the word "Cancer".  Perhaps even much worse. Dementia is like saying: You are going to lose your mind.

We have gone down the Cancer Road already so I didn't think anything would actually shock me.

Rich has not just had one stroke. Last year's stroke was just a big bang compared to all the others he has had over the years. In other words, he has had a lot of insidious brain damage over the years.

I had thought perhaps that Rich had Vascular Dementia, but until the words were clearly spoken to me in that room, there was a chance that it wouldn't be that.

I looked over at my husband and wondered how he was taking the news. Hard to tell as he was just listening and watching. The doctors were very good to look us both directly in the eye.

Then they asked a few direct questions. "Val, you are not working correct?" I smiled and said that was correct, I had to quit last year to stay home and take care of Rich.
"We have a treatment plan and some things we believe will be helpful but it is a big commitment."

The question behind the question. 'Will you go running from this room screaming your head off and ditch your husband? Or are you willing to put in time and extreme effort for his therapy and care?'

I replied to them that I was there for the long haul. After all, I'd driven to the UW 5 days a week for over 6 weeks to take Rich to radiation treatments and tried to work on the weekends.

They went over the details of getting appointments with PT, OT, and seeing a Medical Psychologist too. I inquired if that would be that same as the gent we saw during cancer treatments. He was quite helpful. They thought they'd try to schedule us back with him since we had a history already of seeing him during the cancer treatments.

Social workers, OT coming to the house for inspection, testing Rich for safety, OT doing driving tests with Rich...arranging Respite Care.

Discussions of driving, not driving.

And then the bombshell.

"Do you have your POA set up?" the one doctor asks of us.
"Yes," I answer, "we did that quite a while ago."
"Financial and Medical?"
I nodded.
Rich nodded.

They turned and looked at Rich. "We may ask your wife to be your Medical Agent as we are not sure you can make your own health decisions. We will consider Financial POA also."

I could see that Rich was a bit shocked. So I piped up.
"Honey, if they do that, nothing really changes. Right now we are doing all of this together anyway. We sit and do the bills together, we go to appointments together right?"
He nodded. "I could do the checkbook," he said, "but my tremors are so bad. I can't write so Val does it."

There it was, the same thing we went through with his mother. Losing your independence officially. It didn't matter that I've already been doing most of what a Guardian or an Agent for Health/Finances would be doing already. But the 'threat' of having that taken away was downright frightening for him.

The discussion went on to talk about how Speech Therapy would help, meeting with the Med/Psych doctor would help, PT, OT, Social Workers, setting things up.

The goal was to maintain Rich on a plateau provided there wasn't another brain incident or other health incidents.

In one year they would test him again to see if he was able to maintain or...
Well.
Let's just say it out loud. This sort of brain damage doesn't reverse itself.

I'm not asking for sympathy or writing this for shock value.
I may continue writing about this on my other blog called The Long Road.
The Long Road is where I addressed our travels through Cancer.

I hope that I am prepared to travel down this new fork in the road.

What to live for

Yesterday was a busy day. We'd gone to the VA for appointments on Tuesday and it felt like we spent the whole day going from one place to another.
Actually we got in early and were seen early which is not the usual way things happen.

We have the Kenosha Gang coming this weekend. They aren't actually from Kenosha but I met them while living in that county.
So I was anxious to get the yard work started and at least do some picking up and preparing for their visit.
Rich's meds in the morning make him light headed and dizzy. Two inhalers plus a nebulizer treatment in the morning seems to make him wobbly. He feels constantly stuffed up and we asked the ENT folks Tuesday to check that out. They are following up on the Throat Cancer, fingers crossed...all looks good.

It seems one of the meds for prostrate enlargement is making his sinuses a bit swollen. It is a side effect. IF anyone can have an unusual side effect from medication, it will be my husband.

I looked up his meds and yes, they keep him going but sometimes I wonder if the meds are doing as much harm combined as they could be doing good? I think a major review of the medications are in order. So many of his meds have dizziness as a side effect.

The good news from the CT scan with contrast is that the aneurysm in his brain has not shown any change, nor are there any signs of new strokes.
The bad.
He feels lousy, he has no ambition or energy, he feels dizzy and out of breath often, he has tremors, and emotionally flat most of the time.
The grumpy Gus I used to be married to no longer oversees my fencing or corrects the way I do projects. He shrugs and watches Netflix or takes a nap.

Yesterday morning he sat with his coffee after eating breakfast and said, "I'm just slowly dying, fading away. I wish I could feel like doing something or just trying to do something."
I said nothing. What could I say? He was right. My husband was fading before my eyes.
The man who used to be the Take Charge Man, no longer shows interest in most things.

Hopefully our meeting next week with Neuro-Psychology will prove helpful. In a way Rich felt as if it would have been kinder if the doctors had not been able to remove the two clots in his brain and had just let him go.

So he went to bed for his morning nap and I told him that I was going to go outside and work. That is what I do when I am frustrated and feel helpless.

I started up the weed eater and attacked the long grasses next to the shed. Then I went after other messy places, those places that are so hard to mow.
After my hands began to hurt, I put the ''eater' down and started to trim with the little mower. I took breaks often, but got all the trimming done around the house.

After lunch Rich came out and mowed a portion of the yard and then went to lay down again. He said he'd finish the rest of the yard after a rest.

I proceeded to work on the new/old chair after I watered and rotated the Dexter cattle to a different section of the woods. I sat on the porch and took out my paints. I'd worked out my frustrations and now it was time to let my creative juices flow.

Remember that ugly chair?

Well I have been working on it a bit at a time.

I usually don't plan things out and just let it happen. I wanted bright cheery colors so I used brilliant yellow spray paint on the legs and added some aqua. I used silver on the back of the chair. I don't know why but just did.

I had some old white paint that needed to be used up so I painted the seat white. Boring old white.
While I was at it, I spruced up the wooden spool that we use as a porch table.

I finally got around to doing the edges....not shown here.

The plain white boring seat bothered me, so I did some touching up here and there and then started to experiment with some masking tape.

That was fun, so I began mixing the aqua, blue, green, and seafoam colors in a cap and creating my own colors and made more stripes.

Okay. Nice looking but not FUN!

The stripes aren't perfect, and the paints aren't perfect, but it had its charm. However it needed something else.

Now I am completely charmed by this old chair. If it lasts a season or two on the porch I will be happy. My butterfly happy colored chair.
It fits in so nicely with my spool table and funky table top...

Ready for company!

Charlie was exhausted.

All that supervising wore him out.

The day was still 'young' after supper was cleaned up.
Remember I said I had the Kenosha Gang visiting this weekend? They want to go riding. So I am saving some time and saddling each mule we will take with the saddle that will be used on them with each rider. Amanda will ride Sunsine in my Western saddle that I modified. So last night I saddled Sunshine and took her for a rather boring but peaceful ride on the gravel roads and hay fields.

Sunshine is out of my original horse, Cheyanne. She is half sister to my all time favorite mule Badger who is no longer with us.

And...
then...
my day
was complete...

Well in this life you must find something to live for
Cause when darkness comes a callin'
You'll go back to where you were before
Cause this life is as
Fragile as a dream, and
Nothing's ever really
As it seems...
~~Lily Kershaw
"As it seems"