Travelers

The book I ordered and started reading:

This book explores what it is like to be a Caregiver and what they face when caring for those with some form of dementia...or the new and improved terms: Cognitive Decline or Neurologically Impaired.
Like any Caregiver, we want to fix our charge. 

We develop behavior that in its own way is problematic. Then the Caregiver feels guilty and struggles with feelings of regret, joy, and frustration all at the same time.

My husband's stroke in 2017 was pretty significant. I won't go into the details, however, he did have to go through months of speech therapy to try and help his aphasia. I learned quickly to understand what he wanted to say when he said something quite opposite. Soon after, he was also diagnosed with Mild Cognitive Impairment Frontotemporal Dementia.

It is easier to say his Brain is Hurt.

When I am frustrated with him, I correct his backwards speech or even repeat it back to him. The surprise on his face when he hears that reminds me that he KNEW he said She instead of He, or In instead of Out. When I am particularly feeling like a turd, I pretend just not to understand him.

Yes, I said feeling like a turd. 

So many moments we have are normal and he catches his 'mistakes'. So I sometimes think ---> he is doing it on purpose.

His stroke also changed his personality. Once he was quick to anger and he could be rather difficult when he was in a mood. He had rages when something went wrong and usually I'd just step back and let him calm down. He wasn't a bad husband at all, just quick with a temper. Most of the time it was directed at inanimate objects. 
I watched him try to beat up his truck one time when it wouldn't start.

After his stroke, this different person emerged. Slow to temper, quicker to smile, and almost unemotional. He stopped taking interest in most things around him. He was always the person that had to be in control of everything. Bam, that ended abruptly.

He even stopped driving. He had no interest in operating a vehicle. 

[He still gives me helpful backseat driving hints when we travel together.]

Sure we have since had some arguments and disagreements. Once I got really angry and pulled a card out of my mother's deck of dirty tricks.

I decided to give him the Silent Treatment, at least until he realized it and asked me 'What's wrong?'

True to his apathy for life and most all things, he never noticed the silent treatment. The only one that suffered was me. I was angry. He forgot what we had argued about.

Truly, I felt like a terrible Turd. My behavior was reprehensible. 

Now I use that behavior and forgetfulness wisely. If we argue about something and he gets upset, or I get upset, I wait. I let the issue drop. Within hours, all is forgotten and we go on about our way.

Well, indeed. 

Our journey will take us as Travelers to places we could not have imagined.

CareGiver

 

"A hug is always the right size." ~~ Winnie the Pooh

I was asked by a VA Social Worker how CareGiving changed my life. I didn't get philosophical like I could have IF I'd had time to think about it.
So I answered honestly.

It isn't how I saw myself spending my time as I aged. Pre Caregiving was a life full of trips and adventures with a lot of camping and riding mules. I worked a pretty good job that drove me nuts with the odd hours I worked.

I became a CareGiver because it was the only way hubby could come back home. That was 5 years ago. It just felt right. I couldn't leave him 14 hrs a day on his own after nearly losing him twice  in the early morning hours. 

The Social worker asked if I had experience in this. I chuckled and said that it was on the job experience. She smiled and said most folks who have raised children have extensive experience. 

I agree. I was a mom, but being a caring person for a once able person is much more different than caring for a child. At least I could send my kids to their rooms or ground them for misbehaving. 

I looked up quotes and inspirational 'stuff' on the internet. All of them sing wonderful praises about being a Caregiver. How enlightening it is, how courageous it is, how fulfilling it is.

No one quotes or discusses the arguments that cannot be won. The discussions that go no where. The memories that are flawed yet have to be glossed over in order to keep the peace. 

CareGiving did change our lives. In a sweet way, it has allowed us to stay together. In a hard way because of his frailty it has isolated us socially. You can draw your own conclusions regarding that. 

Caregiving pushed me to be an Advocate and a mom to my husband. Yet we still find those magical little moments where both of us forget all the medical issues and frailties. We laugh and make like we are going to beat each other up with slippers. There is a spark in his eye and laughter.

A hug goes a long long way. 

Compassion and empathy is not in everyone's make up. I'm not special.

To Quote Winnie the Pooh [my hero]:

"Some people care too much. I think it's called love." ~ Winnie the Pooh

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?

Meanwhile...

I should be doing some riding now. Really I should.

So I am going to take out that trusty bicycle and do some riding today. 

Being a Caregiver is a stressful job. Okay, maybe I don't have the stress of some folks, but 'frustrating' might be a better way of explaining it.

Working with my husband's moods and slightly off kilter thought processes can be interesting.

The dehumidifier in the basement quit working. It was a cheapy and lasted about as long as expected. It would run and run and run but the humidity wouldn't change a bit.

I brought it upstairs to see if it would work in a warmer temperature. Some dehumidifiers don't work in cooler places as well.

It was a no go. It ran and ran and collected no water.

Conversation:

Me: It isn't working and the basement is smelling musty.

Him: It isn't summer.

Me [I kind of let that roll around in my head a bit]: Well, it is humid and very musty in the basement. All the clothes stored there will be moldy and smelly if we don't control the moisture.

Him: You just want to buy a new one.

Me: No, I just want to keep things in the basement from getting nasty.

Him: You aren't giving it enough time.

Me: I've given it a week or so. 

Him: Oh go ahead, you are just going to do what you want to anyway.

I returned from the hardware store with a 'cold' room specific basement dehumidifier. He walked into the kitchen where I set it. 

Him: [snarky nasty voice] Oh, I SEE you got one anyway.

Me: [I ignore him and put the groceries away. He feels if I spend any money at all it is a waste somehow.] Well, I'm going to take the old one apart and if I can make it work, I'll take this one back.

Him: [Look of disgust and stomps away] Whatever.

At this point I want to laugh. We'd argued last year about me getting the truck's brakes fixed. He accused me of wasting money. That is until the truck came back fixed of course. Then it was okay.

I think...I know, that part of my husband's reluctance in any sort of change is that he was very OCD'ish in controlling things, fixing things, being the boss. His brain won't let him let me get things fixed without major resistance.

[I'd spoken to the VA CareGiver support just a few days ago and we talked about this very same thing on the phone.]

Pretty soon he is back.

Him: What are you making me for lunch?

Me: Fried Bologna Sandwhich? 

Soon he stomps off to take his midday nap.

I'm curious and take apart the old dehumidifier. I use my Smart Phone to follow instructions as to diagnose the issue. Charlie walks over and looks at all the screws and plastic parts laying on the floor. I identify the compressor, it is still hot. I find the coils and it reminds me of a radiator. Everything is clean and looks okay. I leave it torn apart for when Rich awakens.

Him: Oh look! [He is bending over and looking at the guts of the old dehumidifier] This is not right...he points to the parts that look like a car radiator [the cooling thingies]...this doesn't look right, no wonder it wasn't working!

Me: Oh really?

Him: Let's unpack the one you bought. He gets busy and pulls the new one out of the box and hands me the instructions to read out loud.

He admires the new unit and tells me how nice it is.

Me: Shall I set it up?

Him: Yes! Sure!

And there you have it. Working with a complicated mind...is

well...

sometimes complicated.

But hey, I love the old fart dearly. 

And so it goes.

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.

Unplanned

Sometimes things just don't go as planned.

I had a feeling that yesterday was going to be one of those days. Of course I've been spending my time running Rich to appointments, visiting my MIL, and working in the shed.

I've gotten pretty far in doing what I have wanted to do. I have a huge pile of broken boxes and old shopping newspapers piled in a corner to sort through. Most of it will have to be added to the brush pile as it is too busted up and dirty to be added to recycling.

I decided to take matters into my own hands and got the skid steer. I'll be taking the metal tracks off from it as soon as I can get a 'date' with my neighbor to do it. It will make using the skid steer easier and the tracks won't tear huge chunks out of the yard everywhere I turn. The tracks were for when Rich took large bales in through the soupy pastures. Since I have no need to drive through mud and muck, I have no need for the tracks. They hamper turning in tight places.

That said. I have found the confidence somewhere to be able to back this monstrous machine into the shed. I've always been afraid to do it. I figured I just had to try and see what happened. With no one to spot me. I backed it down the narrow corridor of 'stuff' to where I could fill it with old hay that was piled on the floor.

I'm standing and taking the photo from about 20 feet inside the large door. Everything to my right is not being re-organized much. Everything on the left to the 'dead' tractor is being re-organized and cleaned up.
I was able to fill the bucket with nasty old dusty hay and hay chafe. Yes, I wore a mask.

I then drove the skid steer between the buildings and dumped it in an area where no animals will eat off from it.

I backed that sucker back in and filled it with metal chunks of a cabinet that Rich was 'going' to put together some day. I have no idea where it would've fit, but it isn't for me to know what was on his mind. All I know is that he agreed to let me take it out of there and stack it on that flat bed trailer he bought years ago and has decorated the side yard for a long time.
I know eventually I'll sell all the scrap metal or as I said, it will go in an auction.

It was noon, so I quit. I wanted to go hiking at Wild Cat, but Rich wanted me to stick around while he napped. His stomach had been bothering him and I am pretty sure it is the change in meds.

So I decided to go retrieve my SD card from my trail camera.

I've been watching this doe and her yearlings for a while...in fact I was able to take a few shots of them yesterday while I was in the meadow.

Neither one of them were very afraid of me.
I then spent a while just watching the squirrels run around in the trees and the chipmunks scold each other.

I took the time to sit quietly and just enjoy the fall colors and the light falling through the golden leaves.
What I really wanted was a day to myself.

A day to hike and not worry about time or meals or tummies...

I need an unplanned day. I don't think I see one on my schedule for a few days ... unless I can escape for a while this afternoon.

I can get cranky and short tempered. Yep. I can.
I miss those
unplanned
days
where I can wander and not have to carry all
the responsibilities
on my
shoulders.

Nature calls.

...and I want to answer....


~~~~~~~~~~~~~~~~~~~~
Edit: More unplanned. Heading to the ER with hubby today instead of anything else.
See?

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.

Almost Done

It is that time of year again when the garden bursts forth with all the vegetables I'd planted.

The sweet corn is done. I picked the last of it and started to chop down the stalks to toss to the cattle or the mules. The mules make sort work of it and the cattle seem to be a bit pickier about it.

Since my freezer is now stuffed with beef from the 'old' bull, I thought I'd dehydrate beans, carrots, and corn. I have a device that hooks up to my vacuum sealer that allows me to seal the goodies in pint jars.

The jar on the upper right has a mix of carrots and corn in it. In the winter I pop a pint of mixed veggies open and drop it into broth in the crock pot. By the end of the day, the vegetables have re-hydrated and taste wonderful.

The old bull. I think we made a mistake there. His meat is very lean which is good, but then it is more difficult to cook with flavor. I should have just shipped him to market and bought some farm raised beef.
Well, we will see how the roasts do in the crock pot. I had a TBone steak that was slightly okay. I need to see if there is anything I can do to make it more tender.
It is like eating lean venison.

Well hey, I'll deal with it!

The small garden really got ignored this year. Usually I pride myself with being able to demolish weeds with my handy hoe. I guess all the drives for appointments and picking up all the other farm jobs for me, put the garden on the back burner.

So. Rich has been home for about a week. He caught a nasty head cold and ... well, his mood is better. However last night was the first time I got him outside of the house.

His new routine of late has been to sit in front of the laptop and browse endlessly through programs. If he finds something, he sits and watches and doesn't seem to hear or see anything else going on around him.

He went to turn on the laptop to watch Netflix. I had unplugged everything and pulled the old laptop off the desk to work on it.

He looked confused and asked me to take care of it. I said "No, not until we are done with chores and supper."

I handed him his chore boots and he sat a long time on the porch bench before he put them on.
I waited.
He followed me to the shed reluctantly and I grabbed the little garden cart to carry hay to the last bull that we were shipping soon. I pointed over to the hay stack and told him the donkeys needed feeding.
He looked lost.
He stared at me.
I pointed again and he grimaced.
I walked away with the cart.

He did feed the donkeys and when I got back he was standing there quietly staring down at Little Richard's tie out rope that I'd asked him to help me fix. It seemed as though it was too much for him to think about and he murmured that he was heading to the porch.

I checked the donkeys. They were fed, but not watered.
So the infusion treatments had worked for the depression I am happy to say, but the other issues are there and well, frankly, ... I guess I am prepared for that. The old Rich would have noticed the near empty tubs of water.
This new Rich didn't. Or it didn't matter to him.

So last night while Netflix played in the other room, I made and canned beet pickles.

The man I used to know is still fading away bit by bit. It is odd to see him so disconnected with anything outside the house.
He says he has more energy and motivation.

In his head he does. But the doctors had told me, they could perhaps help the severe depression [they did] but not the damage from the strokes.

So the garden work is done except for collecting seeds.
The rest of the cattle will be shipped next week.

The donkeys will leave by the end of September.
It could be an interesting Winter.

Summer is almost done.

Ariel is coming to stay and spend some time on the farm this coming Monday. It will be nice and we are both looking forward to it.

Brawn and Brains

The picnic table will get the chainsaw treatment...safely by my neighbor. This was project #2. The ancient glider that was rusted through.

Hubby bought this in 1998 and it was aged then. I painted it a few times and finally just gave up on it. For several years it has just been moved from spot to spot to mow around. No adults really sat in it ever. The kids love it and after the last time kids nearly tipped it over, I figured it needed to be dismantled.

I got out the handy dandy 7/16 inch wrench and 3 got bolts off. None of the other nut thingys would budge. With quiet determination and lots of rolling sweat, I began to saw and rip the old wood away from the bolts.
Charlie supervised.
Again.
No cuss words.

Now to bend the metal at it's stress points and make it smaller so I can toss it away.

Next on my agenda was fencing in the forest. I need/want to stay busy and productive.

The 4 wheeler loaded with fencing supplies and a partial bucket full of pasture grass seed. I'm seeding the 'ridge road' that was re-dozed by my farmer friend.

I want to get the mules into the forest to browse on the undergrowth. I used to have donkeys, mules, and horses in the forest but after 2007, the repairs were just too overwhelming for my husband.

My idea is to do a bit at a time. I'm using electric braid fencing which is easy to manipulate and string. The hard part is pounding the t-posts and carrying the post pounder along with all the posts into the woods.
Hah! I now know how the 4 wheeler operates so I can use the trailer to transport the items I need instead of hiking back and forth, I can use my time more wisely.

Bless the person who invented these little pound in posts. That means a lot less pounding of the T-posts and less pain to those arthritic hand joints. I must laugh though. Yes it hurts sometimes a lot. But my OT person said "Use it ... or Lose it."
I'm using those hands.

I had a round about discussion with my neighbor regarding fencing and straight lines. I argued that yes...he could saw down a tree if it was in his way. However, I'll use that tree with a temporary nail in insulator and make my fence according to ease of use and the lay of the land.

My idea was to use my brains to make things easier for me. He wanted [as my husband used to do...] perfect straight lines. I argued straight lines are for line fences and not 'sections'.

He promised to help.
Yep.
I got this too.

I'll take a photo of this area after the mules have been in for a week or two and see if you can spot the difference.
Tomorrow, if it isn't pouring cats and dogs, I will string the soft wire.

I must be getting much stronger. A year ago, I couldn't squeeze the hand break on the 4 wheeler, I'd given up all thought of ever operating it. My Occupational Therapist told me to work my hands. I did. Out of necessity I've worked my hands, elbow, and shoulders. I'm stronger now than I've been in a few years.

Yesterday I unloaded 50 bales of hay and stacked it in the shed. I felt fine after that. However I did take breaks often.

Tonight was another story. I couldn't for the life of me, sit inside the house after supper and let daylight fade away.
I went out to the garden and picked.

I tossed weeds over the fence to the mules. They liked it.

I picked an ice cream pail of green beans and set them on the porch.

I asked Rich to come out and see the beans. He hesitated, I told him the temperature was fantastic on the porch. He and Charlie came out.
I started to snap the ends off. I have time tomorrow afternoon to blanch the green beans and freeze them.

Rich surprised me by sitting on the bench that my Kenosha Gang made for us...he asked if he could help with the green beans.

We spent an hour in silence. Listening to the birds, the cattle, and the mules all make their evening noises as we silently snapped beans together.

And it was good.

This is a plus in my book. He is taking interest, he is participating. He doesn't see it as a big deal, but I do.

Charlie observed.

So I count this day as a good one.

It started with a gorgeous sunrise....


And ended with a warm and loving sunset...

No act of kindness no matter how small is ever wasted.
~~Aesop

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"

This and That

What a welcome surprise. Nice unusual weather.
Dry and warm.
The National Weather Service has issued advisories however that this warm dry spell has increased our fire danger.

However we are taking full advantage of it.

Last minute fence repairs before mother nature blasts us with subzero temperatures and snow.

Moving the round bale feeders.
I do love a guy who can operate a skid steer!

Morris supervised from the porch. He had been sleeping on the blanket I gave him but decided to start barking at everything. I brought out his crate and he went in it.
His imagined monsters can't get him in the crate.
He settled down and napped when he wasn't watching.

Rich and I pulled fencing from the Merry Meadow. The work to maintain the fencing is now too large of a job. Mowing the meadow wasn't done this year and since it isn't our land I'm willing to just let it grow wild again.
It served a good purpose for years, however the more things stay...the same, the more they change.

We met with Rich's speech therapist again yesterday. She gave us some insights to the 'new' Normal. I do not like that phrase Your New Normal, but it is appropriate.
COPD affects so many things. She enlightened us to the fact that the brain uses 20% of the oxygen in the body. When short of breath from exertion, the brain is getting shorted also. An already damaged brain from a stroke is fighting harder to get its oxygen.
Confusion and memory issues immediately arise.
If left short of that wonderful 02, more brain damage can result.

It helps me understand what is happening to Rich when he is trying so hard to do chores. He is not a quitter. But it helps me understand why he feels lost when he is out of breath.
COPD is an insidious disease that forgives no one. You cannot escape it and as it slowly eats away at your health.

Our new thoughts to take home from Speech Therapy are these two things:
I am Rich, I am "As Is."
The more things stay the same, the more they change.
[Yes that is the exact opposite of the saying, but this fits better in our case.]

So.
It seems that some or most of the work will fall into my hands for getting everything ready for winter.
I'm up to most of the task.

The Dexters we are keeping will move into the paddock just south of the house where they can share a 300 gallon heated stock tank of water with the equine who will be in their winter pasture also.
One heated tank. One hose to fill it. The chores will become much more manageable through the cold.

Mr. Morris seems to be doing fair. Yesterday the neighbor and her son came to let him out for a potty break and drink of water. Morris apparently didn't 'see' the porch post until he ran into it. He has done this off and on lately. I don't know if he really has doggy dementia or what. I do know that his hearing is negligible and that his eyesight seems at times to be a bit questionable.

However, all of this and that aside, we are having an incredible end to November.
The skies have delighted us with morning and evening surprises of brilliant colors.

And thus, another month ends.
Tomorrow is December.