Up and Down and All Around

Sometimes our lives are funny and sometimes sad.

Sunday I'd asked Rich if he minded that I go to KVR [Kickapoo Valley Reserve] and take Charlie for a hike on the shorter trail.  
He huffed and puffed over his morning coffee, as if I'd just asked him if I could cut off one of his arms or legs. 

"How long will you be gone?"

Me: Well as long as it takes to drive there, hike, and get back.

"How long is that?"

Me: There is a sudden realization that now I have to give times for him. Just like this weekend when I walked along the north facing hillside while he was napping. I had the 20 questions. Of, How Long, Where, When, What are you looking for?

Me: Oh it takes about 25 minutes to get there and an hour or so to walk the trail, it is 1/2 mile long, straight out and back. I should be back before lunch and probably right after or at the end of your morning nap.

"I don't always take naps."

I nod, but don't answer and I wait.
He sighs and sips his coffee. 

Me: Are you afraid of me leaving the house to do things?

"Well you always get to do what you want, you are going to do it anyway." 
His tone was that of a petulant child.

Me: Well, what would you like to do? Want to come along for a drive perhaps? Would you like to drive to the river and check things out?

"No." He stares out the window and I see the blankness. He finally says to me...
"Fine. Go."

Me: Okay. 
I pack things up and head out the door. My hike is enjoyable and for a while I forget about all the things I need to do. I promise myself NOT to look at my phone to keep track of time and I hide it in my backpack. Charlie and I take our time walking the length of the trail and I pick up the pace on the way back.

On the drive home I think about Covid. I think about masks, I think about risks, and what I need to do to help keep him safe. I think about Rich's daughter and family who have decided not to keep in contact with Rich because we are adamant about safety and vaccinations. Besides, she is too busy. Too busy for a vaccination, too busy to call to talk to her father, too busy period. And I think a moment about that. 

Then I hit the button on the dash for Pandora and enjoy the rest of the drive home with the music blasting and Charlie sleeping in his 'car seat'. 

The Mind is a Curious Thing

Is it forgetfulness?

What are spatial issues? What are cognitive issues? Who decides? 
Did you know that most patients -- I assume myself one day will be included -- understand they have cognitive issues but don't let their doctor know and can hide most symptoms quite easily.

There is a Chart of 10 questions that can be asked:

However. Who follows this? Who asks? Certainly if the doctor asks the patient, the patient will rarely admit that he/she cannot complete the list.

In the past 4 weeks does the patient have any difficulty or need help with:

1. Writing checks, paying bills, or balancing a checkbook. 
Hasn't been able to in 5 years.

2. Assembling tax records, business affairs, or other papers.
Hasn't been able to do in 5 years.

3. Shopping alone for clothes, household necessities, or groceries.
Mute point, cannot drive, hasn't driven in over 5 years.

4. Playing a game of skill, working on a hobby.
Gets lost in card games or any simple game. Frustrating. Stopped working on hobbies in 2017.

5. Heating water, making coffee, turning off the stove.
Doesn't understand how to use the stove. Hands too shaky to make coffee.

6. Preparing a balanced meal.
No. Unless making microwave instant oatmeal for breakfast lunch and supper is considered balanced. It is the only meal he will prep for himself.

7. Keeping track of current events.
No, doesn't follow news or read the paper.

8. Following a TV show, book, or magazine and being able to discuss them with acquaintances.
No reading as it doesn't make sense to him. TV is sometimes confusing, but it is something he will do all day.

9. Remembering appointments, or remembering to take medications, keeping track of recent conversations, recent events and the date.
No on appointments, I often remind him to take evening meds. It is a ritual so he will eventually recall or check his pill box to see if he needs to take something. Somedays are good some are not.

10. Driving, traveling out of the neighborhood, or arranging for public transportation.
No no no on traveling. He won't leave the house. Last time he left the house was for his mom's funeral and a blood draw. He hasn't driven in 5 years and will not answer the phone or make phone calls unless it is my cell phone number.

So what is the scoring for this?

Let's see the score guide.
0 Can do this without help.
1 Have some difficulty, but can do this without help.
2 Need help with this.
3 Can't do this.
0 Never did this activity.

How do you address these issues?

What if...every question is no, but the patient feels that a balanced meal is a bagel or instant oatmeal. Since they watch programs, they must be able to follow them right? 

So if I were to answer the questions honestly for my husband there is not one item on that list that he can really do. He most definitely cannot follow most programs unless they are in a standard format. 

Would he be a perfect 30? Or does he get a partial point for remembering to take his meds when he eats breakfast [a routine of 30+ years].

Somehow the VA feels that since he can recall to take meds and says he can make meals and dress himself, he doesn't need their extra help.

New things that have changed since last year's assessment. 

He is not aware of lack of combing his hair, or personal hygiene. He feels it isn't in his time frame and doesn't want to do it. It results in a rather intense argument when I bring it up.

He can't use a knife to cut up things like apples, peaches, pears. I have to do it. He wants to go outside to do yard work, but spends about 20 minutes looking out the door and then goes for a nap.

He can dress himself.
The only way I can get him to put on clean clothes even if he won't bath, is to take away his dirty clothes while he sleeps and replace them with clean clothes.

I get very irritated and angry and have to constantly remind myself that this is not him being a jerk. But his mind is on another timeframe or some other universe.

It is like when I am waiting for my computer to make a connection and I get those little blue circles...and then an error pops up.

Weeks are not in his timeframe. Days are just days waiting for a nap or bedtime. 
The other night he sat up at the table after I told him I was walking to the ridge to take photos. 

Currently every time I get ready to go to the store or go shopping for food, he asks where and when I am going. 

I can tell him what we are eating for supper in the morning and he asks me near supper time what we might be having. I give him time to recall and then tell him.

His words are still backwards and sometimes I have to really concentrate on what he means when he talks.

So. What do I want as a CareGiver? I would like some respite if it was safe to do so with Covid still running about.

I would like someone to come in once a week to help bath him. He won't fight a nurse, doctor, CNA, or other person who will ask him to wash, change his clothes, or even mild exercise.

But for me to ask, it becomes a huge issue which leads to arguments such as ... I am stealing money, I am bossy, I am a nag. Anything out of his routine of coffee, breakfast, nap, TV, nap, lunch, nap, TV, supper...is disruptive. 

Thursday I'd had it up to ... there. I was done. All done in. 

I considered asking his daughter to give me a break but she won't as she thinks her dad is fine and is just a drama queen. 

I'm going back to the VA Caregiver program and asking for a new assessment. 

I can't fight daily any more. 

No worries, I am okay. 

But I write this for other CareGivers so they know they are not alone in all of this.

This is a hard trail/path to follow and a person has to really seek out assistance.
One of the next calls that will be made aside from calling the VA CareGiver program, will be to ADRC to have the local county nurse come out and do an assessment of hubby's needs.

This feels like we have been forgotten and since all appointments have been by phone or video, they don't really get the feel for how he is doing or not doing.

That's it. Sorry for being so long.

You Gotta Love MDD

Also known as Major Depressive Disorder.

Every single time Rich's MDD has come along [it runs in cycles, meds work for a while and then...] ... well then it creeps in slowly.

First red flag is him being extremely critical of every THING I do. I didn't feed the mules properly. I should be standing and watching the 300 gallon tank fill. The coffee tastes bad [I make coffee to his specifics each morning separately than my own coffee].

The sun is shining. The sun is not shining. 

~~~~~~~~

I went into the woods to get that very first black morel mushroom. I thought it would make him smile. 

He went off on some strange offshoot and gave me a lecture regarding mushroom hunting. He then went on to tell me about some weeds I had to go work on in the forest. I mentioned that the jewel weed was there in 2010. An argument ensued. 

The grand kids in Jewel Weed July 4th 2010. Yeah, that is the only reason I know exactly what year it was.

[He hasn't been in our woods since 2016.] 

Bam. It hit me. His time frame was different than mine. 

So.

I agreed with him. Yes, I needed to take care of the Jewel Weed. I didn't even talk about the Dexter Cattle taking care of that for us. Best to let some things just drop.

No sense in trying to correct a memory. He has his own time frame that gets mixed up a lot. I guess I am going to have a long discussion with the Caregivers Social workers next week.

Another thing he has issues with once in a while, is that he thinks he is a randy 19 year old. Full of vim and vigor. A sexual god if you catch my drift. This is awkward but I'm going to address it here or my head will explode.

He thinks I am mean when I rebuff his strange advances. He forgets that once he tries intimacy it all falls apart. He can't breath and he can't do what he wants so he gets very angry or very depressed. I am then stuck in the house with clouds of charged particles in the air.
It is like walking on nuclear egg shells.

He cannot walk to the shed without a rest. He struggles when just getting dressed or undressed. But in his head he is a sexual god and it is my fault when he isn't. There really is no win-win to this at all. His is a fantasy in some ways which lives in his head. With mild dementia it is all true. He is the god of sex. 

Well...until he gasps and asks me to set up his oxygen that is....

So instead of worrying about life with the god, I keep my head down and do the mundane things that I am supposed to do. I go for walks. Which became an issue in itself. 

He decided that since I had the vaccine I should sleep or sit on the couch. I shouldn't go...go ... go. 

His depression. It is insidious and creeps up getting worse and worse until the black hole swallows him. His latest med change was a last ditch effort and it worked for a pretty long time. Just over a year. 

I'm his caregiver. There are days when I want to close the door and walk away and keep walking never looking back. 
But I am not that kind of person.

He struggles with his mind. He knows that he used to be young strong and invincible and somedays he still thinks he is. Then he is angry with the betrayal of his health and mind.

I am the only other living soul here on our farm. So I get to be the Fall Guy. 

I miss my friend. 

I miss my sense of adventure and doing my own thing whatever that was.
I've bowed over and over to the goddess of MDD.

It makes me exhausted.

Sorting it out

Over all Rich's health physically since the knee surgery to remove the nasty patella bursa, he has regained mobility and some strength in that knee. We have been seeing PT twice to three times a week and it is obvious to me that he needs to be going back to Pulmonary Therapy.

I try to bribe him into moving about and doing things. But he is focused more on either sitting at the kitchen table and staring out the window [when I inquire as to what he is looking at he seems to come back into the present world and blink...his answer? "Nothing."]

Part of this is the damage done to his brain from the stroke in 2017.

One of the very hard things to separate out with all of Rich's past history of PTSD and MDD is the lack of motivation which was there pre stroke but is now much worse.
In fact the medical field studies Apathy and Hypersomnia. Both of these neurological issues can happen after a stroke in the front part of the brain. Let's toss in some other medical issues and the patient becomes very 'complicated' as the doctor who did the knee surgery said to us.

Is it depression? Is it PTSD? Is it neurological? Bradycardia? COPD? Is it the Pulmonary Emboli? Painful bursa? Is it imagined? Is it real? What is it?

Hypersomnia is just a fancy word for being tired all of the time. Rich had this during his last bought of severe depression. He keeps telling Dr. Schiffman that he wants to feel energetic and motivated yet he just feels tired and can't seem to get out and do anything.

Since I live with Rich daily, I see little bits and pieces that the doctors don't see.

Going to Culvers last week, I handed him an empty soda cup so he could get his Pepsi. I paid and then walked over to where he was at. He stood in front of the soda machine and held the cup.
"I should know this," he said. There were people waiting so I said, "Let me."
I took the cup and filled it and handed it to him.  He shook his head.

When we sat down to eat he mentioned the soda incident and told me that it really bothered him.

There are small things that happen and finally we got into a discussion one morning.
He said he was 'Dizzy'. He'd said that often to Dr. Schiffman and to his therapists who took B/P, 02 readings and came up with normal. It flummoxed most of the doctors.

So I asked Rich.
"Tell me about Dizzy. Is the room spinning?"
No.
"Do you feel like you are going to barf?"
No.
"Does it feel like you did when you had Brain Fog from chemotherapy?"
He glanced at me.
Yes! It feels like I am not connecting! I don't like it.
"Your brain suffered a pretty bad injury in 2017. So it has troubles on some days making sense of everything."
I don't like it.

I feel like I am watching a slow motion crash happening one very infinitesimal step at a time. However. At least I am here for that journey right now. I can be a part of it with him.


There will be days of heartache and frustration,
anger and resentment...

laughter and love
joy and sorrow.

One day at a time.

Revisit Angry Depression

My husband now has a list of medical conditions that could make any physician scratch their heads. His PCP last week had to deal with his newer condition of Depressive Anger.

The least little thing will set him off now.

It was a pretty bizarre evening last night. I had made a cake and a pretty decent supper. I know eating supper together has always been pleasant for us. Well not last night.

MDD, Major Depression Disorder has come back something fierce. At first I thought it was acceptable because of his issues with the Pulmonary Emboli in both lungs and the hospital stay and the pain in the knee from the bursitis that was excruciatingly painful..
However he said he 'hurt all over' everything hurt. [I've learned over the years that MDD causes the body to hurt all over...it is a sign that he is going into a very bad place.]

He had a major fight with his daughter and yelled at his mother on the phone last week.

Instead of leveling off, the internal and external anger has become more pronounced.

Living with MDD is interesting. You need to have thick skin and emotional walls of concrete.
I set him off in a rage yesterday after working outside for hours, I came in to check on him and to make him something to eat.
I walked into the bedroom to see if he was okay and would like something to eat.

He blew up.
How dare did I interrupt his nap?
Why couldn't he get any sleep around here without someone bothering him?
He got up and tossed the covers aside.
I'm tired and I wanted to sleep so I could shower! And you won't let me!
I replied that I'd been outside for hours and ....how was I to know? I knew the nap for a shower wasn't really a reason for sleeping. Showering had become another new issue for us. Before I could assist him with showers while he was recovering. The last time he did a major portion of it by himself.

The fact that he did not care if he was dirty or smelly and would fight my suggestions for getting washed up was a huge indicator of his depression.

YOU just won't stop bothering me!
He came up and began to poke me with his fingers and imitated as best as he could my voice:
How are you? Do you want something to eat? Can I get you something? Why don't you take a shower? Want to wash up? NAG nag nag!

He poked and poked.
I'm going to wake you up every 30 minutes tonight, see how you like it.

I stood still and silent. No arguing with Depression Rage or whatever you want to call it.
I silently wondered if I could get him in the car and take him to the VA Emergency Department. Sundays were generally bad days for that. And the thought of a 2 hr drive with Rage in the other seat was not anything I wanted to consider.

He went on to other small inconsequential things that I have done over the week. One of the items he was furious about was that I was selling one of my older cameras. He simply went on and on.
I remained silent as One, it was my camera. Two I rarely used it anymore, and Three how did it matter in the larger scheme of things?

Silent. You can't argue with The Transformed Man. Once that ball of anger gets rolling it keeps getting larger and larger.

Last night we went to bed.
He pulled the covers off me.
Then waited until I put them back on.
20 minutes later he started poking my shoulder and asking Are you Awake? How do you like that?

It was juvenile, I admit. But I knew he'd fall sound asleep soon.
I decided to move a bit later when he fell into deep sleep.

I don't understand why his PCP didn't ask for intervention when he argued with her earlier this week.

The scary part of this? I responded with nothing. His tirade never even phased me.
After his oxygen delivery today I will risk asking him to go to the VA ED.

He Ain't Done with You Yet

Rabbit to Bear: I will always be by your side.

And the Principal Care Provider looked up at my husband from her computer and the mess of sheets from Gundersen Lutheran Hospital in front of her. She sighed and then asked how are you feeling?

"Like shit," he answered simply. Dr. Sauvery knows Rich well enough to know that means 'overall crappy in health and mood'.
"Depressed over this?" she asked.
"Well, of course."

She nodded. "That was a significant PE that you went through. Frankly I am surprised you are alive. Very few people survive what you went through so I guess you should feel lucky?" Dr. S is straightforward and she knows Rich wants to hear it that way.

"Lucky?" he asks with a glance at her and then the floor, "Lucky? Well I don't know about that. I may feel better if I was dead." His hand comes up shaking a bit from his enormous fatigue.
"To live like this? This is not being alive."

She nods, "Yep, your are right, but you survived and you need rest and you WILL feel better."
She does and exam as she talks. "You are amazing, all of these things you've been through would have,"...she shrugs, "you must have amazing genetics and you must be here for a very good reason."

Rich looks tired and worn out. So Dr. S sits next to him and puts her hand gently on his arm.

"You go home and rest, follow your meds. YOU let Christmas come to you and New Years also. You set in that easy chair and tell the kids that Grandpa is tired and needs his rest. You enjoy those kids. You enjoy them seeing you. Have family make visits but be short. This is winter and the weather is yucky, you don't have to go out and do stuff outside..."

This was the longest 'speech' Dr. S has ever made. Then when we stood to leave, she hugged Rich and then me. Her parting words were said quietly, and I don't believe they were meant for Rich to hear...or???

"Watch over him as you do. You are an Angel at his side."

We check out at the desk. Rich has known the receptionist there for many years. She asks, "Dang Rich you were in the hospital again! What happened?"
He responds, "Well I guess I am lucky to be here, most don't make it through the really bad blood clot thing I had I guess." He shrugs.
The place is quiet and the other receptionist steps over.
She has a very southern drawl.
"Sir, I think God put you on this Earth for a reason and ain't done with whatever He has intended for you."

We set up the follow up appointment, Rich comments quietly, "If I make it to spring."


I helped my exhausted sweet heart get into the Subaru and get settled. The sun was getting ready to set in a blaze of colorful glory. Rays of light blasted through holes in the clouds and went up into the sky while another set lit up the countryside.

Rich reclined in the seat and was silent for our drive home.

Rest.
See your family.
See your Grand children.

My mind went places it perhaps shouldn't have.
He had cheated death again. The Grim Reaper had knocked on the door a week ago on that frosty foggy morning.
Exactly how much more pain and discomfort could a person live with.

"Sir, God put you on this Earth for a reason and he ain't done with you yet."

I wonder. And I drive home in the quiet car and fight back all sorts of thoughts and emotions.
I reach over and lightly hold his hand while I can on the nice straight parts of the road.

We've had quite the journey together, I think.

MDD

Major Depressive Disorder sometimes doesn't respond well to medications.

My husband has battled ... or lived with depression for many years. Treatments come and go in the form of "Let's try this medication or try this medication". Sometimes the meds fail miserably.

Rich is a very unusual person in that most prescribed meds seem to have severe side effects in some way. His medications for depression seem to take the edge of for a few years and then stop working.

During his treatments for Throat Cancer he had an anaphylactic reaction to a 'safe' chemo medication.

The cycle came around again. The last time we saw Lindsey [Rich's psychologist] I told her exactly what would happen. I also met his psychiatrist in the hallway and cornered him with Rich's previous psychiatrist.
I warned the doctors of what was going to happen and what had happened over the years.

"Rich is a train wreck speeding towards a crash and burn again. And you guys need to know this, it gets worse and worse ... he speeds like a locomotive out of control and then hits the end of the tracks..." I took my hands and threw them in the air, "..and boom. I am sitting in the ER with him and I keep coming back until he is admitted for an in hospital evaluation." I pointed at the doctors and then said, "You know it. You do. Look at the records for the past 20 years. Let us prevent that train wreck."

Oh they nodded and agreed. And as before, they suggested a change in medications.
I'd made my point that day but knew I'd be making that drive to the ER soon enough, but hoped that I wouldn't have to.

Over the past week Rich's depression worsened. He did get up a few times and interacted with our company but retreated to the bed. I noticed that he didn't want to take his medications, he didn't want to drink fluids, he just wanted to be in bed and then complained that all he could do was lay down and stare at the ceiling fan.
By Monday morning he had withdrawn completely.

I called and talked to the triage nurse and I knew that we'd be heading to Madison.

He was admitted for MDD that was severe.
Different treatments were discussed and reviewed by the Mental Health team.

It seems that he will be a candidate for Ketamine Infusion.
I'd never heard of it before.

...And forever, I will support him and help in whatever way I can...

You're broken down and tired
Of living life on a merry go round
And you can't find the fighter

When the silence isn't quiet
And it feels like it's getting hard to breathe
And I know you feel like dying
But I promise we'll take the world to its feet
And move mountains
We'll take it to its feet
And move mountains

And I'll rise up
I'll rise like the day
I'll rise up
I'll rise unafraid
I'll rise up
And I'll do it a thousand times again
And I'll rise up
High like the waves
I'll rise up
In spite of the ache
I'll rise up
And I'll do it a thousands times again
For you
For you
For you
For you

[Andra Day: Rise Up]