I figured it out...

 It isn't so much as being cranky and tired, although that will contribute to my current feelings.

I keep a paper journal. You know, one of those spiral notebooks with paper in it. The kind you have to actually pick up a pen and write with.

I use it to write down meandering thoughts and mostly the stuff I won't post anywhere on the internet. I can say what I really want to say about certain things without the danger of anyone being offended.

I can approach politics, religion, medical care, and people without any blow back. Well, I suppose if the journal is looked at after I am dead, somebody somewhere may be offended.

I finally realized the Why as to How I was Feeling.

I have run out of empathy and sympathy.

One friend who visited did nothing but talk about his 'situation' and his hardships and his struggles when he came to visit. In the past I offered empathy and listened intently.

My Respite girl who keeps showing up late has offered up her tales of woe without me asking for them. Normally I am the type of person that will listen and figure out if there is a way I can help or perhaps show verbal support. [Her tales of woe include 'excuses' for how and why she ends up being over an hour late]. 

[My thought on inconsistency is this. If I cannot depend on her to be timely, can I entrust her to care for my husband while I am not home? 

Hubby's thought is this. He is a Vietnam Veteran who fought in ground battles in country. IF a person did not have your back and did not act with responsibility, you could die. Pretty simple and direct views in my opinion.]

Here I had two people who came to 'give' me Respite and comfort [Shay's job is this] ... didn't. Instead they focused on their issues and problems and dumped them on me.

So while rambling and writing...this light bulb came on and suddenly I felt much better. I understood where my darkness was coming from and why it was bothering me. 

Here were two people over a period of days expressing all their challenges. They forgot that they were expressing their challenges, issues, problems, to someone who is caring 24/7 for a person who is dying.

They seem to forget that I am having daily emotional mountains to climb. Every day, I watch my soul mate disappear little by little. I am putting everything in my life on hold for his care. I am giving up the things I love to do and things that give me strength and emotional release for him.

My inner self has built a wall that never shows really how I feel on the outer self. 

[It's complicated--> that is how I grew up--> some day I may explain that ... just say, that is how I survived an abusive childhood with mom.]

I'm done feeling empathy and giving support right at this moment for those who need and crave it at every turn. 

Shay did show up on Tuesday and offered up some incredible 'reasons' for being late. She claims they are not excuses and said sorry sorry sorry about 100 times. 

I was chilled to the bones, I just raised one eyebrow as she dug herself deeper into a hole with me. Could she not read my face? Was she so wrapped up in her issues that she could not see how stiff I became? Did she not feel the cold air wafting off me?

She begged to let her come on the 4th where she could make Holiday pay and I reminded her that my Granddaughter would be here and that it would be family time. She asked to come another day [to make up for her loss of pay]. I stated that I'd see her Tuesday the 8th at 9:30 sharp. 

I'm giving her Tuesday because I have a car appointment that I need to get to. After she is done with her shift ...if she shows, I am calling her company and the VA to let them know that she is not living up to expectations. 

This issue changes the dynamics of trust which is a very big issue for hubby and I.

July 1st and Exhausted

 I won't lie.

Caregiving is exhausting. It can be Caregiving as a mom to kids, a mom to a disabled child, a young child caring for a parent, or a spouse caring for a spouse or elderly parent or relative.

I watch the latest PBS program on Caregiving which is a 2 hour program. Our Chaplain suggested I watch it as she felt it was interesting. It tells the stories of a few families along with the history of Caregiving and how hard it has been fought for by advocates over the years.

Francis Perkins served in the cabinet of FDR as Secretary of Labor. She was a powerful voice for not just Caregiving but the Implementation of Labor Laws to protect children, and so much more. If you are interested you can look her up.

So, right now I am exhausted. I my insomnia this past week was well used in visiting the night skies and watching the Fireflies mating dances. It eventually catches up and Sunday night I went to bed at 8pm and did not wake up until 5am.

It isn't just sleep deprivation, it feels like my soul is being dragged through a fog. When I am tired like this, everything is ugly. I am ugly. I am short tempered and have to bite my tongue.

What has not helped at all is that the Respite person has become unpredictable. I had a car appointment. As I am waiting for her with keys in hand to leave.

Text: Sorry hon, is your appointment today? I'm running late.

Me: Yes.

Now if anyone knows me, they know my work ethic is extreme. I always showed up before my shifts, was never late, and never had excuses.

Text: I forgot my medicine I have to take twice a day and had to go back for it.

Me: Hmmm.

I was not amused at being referred to as hon. 

Other reasons for being late. Overslept. Traffic. [on rural roads? plan for it!] Can't find childcare. 

I give her the benefit of doubt but it seems more and more that poor planning is the issue. None of the 'excuses' are valid. Not if she would plan ahead.

I'm going to combine that with the stress from the long weekend stay of my friend. I like him, I enjoy his company. I don't mind his pets. But more than one overnight stay is my new limit. And I am not available to waltz around in the woods and watch out for him.

I am going to set boundaries. I need to. Granted he helped weed my gardens, however I told him not to drop the weeds in the grass I just mowed.

See? When you lose sleep and are burned out, every, little, thing, matters.
Muddy dog prints on the floor. Talking when I need silence. Oatmeal on the table. Spilled coffee. 

None of those things normally bother me. 

However I seem to have become a nit picking freak. I tolerate the messes I continue to clean up [endlessly] from my husband as he loses control over some functions. I remind myself he cannot help it.

Then someone comes and adds to the 'burden'. In reality, they aren't really. But in my mind, it is so.

Jason finally got the idea I didn't want him in my way. He left. Rich will miss his company, but right now I won't. I want silence. 

Rich went to nap, and I decided to put off everything else after scrubbing the house and the rugs...

to dive into a place of divine pleasure. Getting lost in some creative endeavors.

 

After all, what really waited for me outside was storm damage that I needed to attend to.

When Respite shows up today, I use my 4 hours to run errands and then come back and start working on the fencing damage. See, the work doesn't stop just because one is tired or angry, or frustrated...

It still is in your face when you step out the door.

I am looking forward to NOT doing anything Hospice or visit related until Ariel comes to visit on the 3rd.

I may pull out chunks of bark and branches and create a fantasy world [all while tending to my husband's needs].

A final note.
With Caregiving like mine, it can be horrible and beautiful at the same time. It is tiring, it is hard, it is worth it.

We are lucky to have support where other folks don't. So I have to count my blessings as well as my gripes. 

But the mood of the Caregiver goes up and down with stress, anxiety, and fatigue. I am human, so I will have human moods good or bad.

And then this...just minutes ago.

Text: Hey hon, I'm sorry but I overslept, these new meds make me sleepy are you okay with me coming at 10:30 and staying until 2:30?

My response...slammed the phone down on the table.
I should have said no but I didn't. 

Me: I'm not pleased at all. I had to cancel the appointment I had for 10:30 and make it for next week for my car.

I told her to come. I have to get sweet feed, fly spray, wormer, groceries, and medications, along with other errands. 

How else am I going to get these things taken care of? 

I will be reporting this to her bosses and to the VA who contracts her company.

I am done with people who do not have a work ethic.

The conundrum? Rural health aides? Few and far in between and very unreliable. Those folks should be paid good salaries and be strongly vetted.

My last thought. If she can't be trusted to show up on time.
Can she be trusted to be a caregiver for 4 hours with my precious husband?

I want a PITY Party.

 

So, after a short vacation for some free time which...WAS awesome and wonderful...and a weekend visit from a granddaughter, I was left with the Sunday afternoon blues.

I'd had a great weekend with my son, his wife, and Rory. Someone else saw to the meals and checked in with hubby. The animals had enough hay and water to cover them for the time I was gone.

For the 36 hours I was in Kenosha, I didn't worry about making sure someone took their pills on time, if he got to the bathroom on time, or what did I have to make for breakfast, lunch, supper. I had back up for that.

Then, this past weekend I'd been treated to a girls' day out by my granddaughter, good sensible conversations about books, dragons, life, and all that normal stuff.

These were things that made me feel alive and normal. I had human interaction and lots of laughter. I remembered what life was like 8 years ago. Before one medical issue after another happened.

I would be lying if I said that at this point I am pleased about always being the person in charge.

Granted, my husband is not difficult and he is rather pleasant. The man who used to fix things, get things done, and be fun and engaging is gone.

In his place is a man child of sorts. There are very few things he will or can do for himself.

Now he sits at the table and stares out the window. Sometimes he has something to say but most of the time he struggles with words so it is easier to be silent.

He refuses to wear his hearing aids, so conversations can be pretty bizarre especially when his aphasia perks up.

"Bagels are trying to get in the scrins with those flies. Better shut the door."

Translation: Bugs and flies are on the screens, shut window.

I feel guilty for being grumpy and irritable when he spills on himself and the floor.

He asks me several times a day what we are having for lunch or supper. I tell him over and over. Sometimes I just purse my lips and tell him to think about it.

And then I feel like crap because he can't recall what he was told.

On other subjects he seems sharp as a tack. 

It makes day to day communication otherworldly.

The interesting part of all of this is...

Maybe the time off and fun visits make me realize what I am missing. 

I am jealous of those who have freedom to travel and the freedom to have friendships and a social life. I'm tired of turning down all the invites to friend's houses for evening campfires and get togethers...and other events. It is tiring to explain over and over why I can't just pick up and go.

Then the invites stop. And there it is. The thing in my life. Really, some don't want to hear my struggles and I don't blame them. So I don't talk about it. 

I know he is better off here at home than anywhere else. Yet once again I feel the discomfort of wishing things were not this way. Some days I'm just so tired of being the responsible adult.

What Is Anticipatory Grief?

 Anticipatory Grief is something that can begin before the person you know has died. 

I realize now that the last nine years of my life I've assumed the role of a Caregiver. The first diagnosis of Stage IV throat cancer changed our lives. [Whoever has had cancer in a loved one or family member will know that the C word changes things forever] 

The event started a cascade of other health events that compounded on Rich's COPD. 

Now we live day to day with a routine of me doing the simple things for my husband that he cannot do. My routine has changed and his care is at the forefront of each of my days. 

At first I was frustrated and a bit angry because I never thought that I'd have to learn to do all the 'man' stuff that was always done by him. Over the years, I've taken on all of the duties around our small farm and it can be very taxing. 

Finally I've come to the realization nine years later, that I've gone nowhere and done nothing but give give and give more. Yes, it is common to feel that way as a Giver. It is also common for a Giver to feel guilty at those very same thoughts.

There are days I look outside and see myself on a camping trip I've longed for, or perhaps a Waterfalling trip...exploring the parks that my state has to offer. Wandering along wooded paths and exploring without a time clock. Reality bites and I am doing my next Giver thing. 

I'm luckier than some Givers. I can still get out for daily walks and sometimes fit in a nice hike at a park close by. 

But I daily grieve for the person I used to be married to. The energetic and sometimes pain in the butt guy. We did a lot of weekend traveling together to see other friends. We camped with our mules and rode parks. 

He fixed tires, maintained the mowers, tractors, skid steer, and did all the farm jobs. He was a force to be reckoned with.

Givers learn things. I learned to drive the skid steer, arrange for maintenance on them, fix fences and reroute them when the deer take them down or trees fall on them. I used to really go after it with gusto. But I'm growing tired of all of my extra duties.

The point is. Daily some small part of me grieves for the person I used to be married to. The one that gave out hugs all of the time. The one who was independent and vibrant. Not the person who sits quietly and stares out the window. I ask him, "What are you thinking?"  He blinks and finally looks at me and replies, "Don't know. Nothing."

I like to have a plan. I'm always thinking about the 'what if' scenario. Apparently, that is not the healthiest thing to do. However, that is the way my brain functions. 

IF this happens, what is my next step? 

Each day, I see a little less of the person I married. He moves slowly away as if he is fading. He is fading. 

Each day I grieve a bit more for the person I am losing. I know I am putting forth my best efforts but I can't change what is happening inside his body and brain. Some days I am angry that this happened and think IT is NOT fair! And then there is the guilt for thinking that terrible thought.

There is no cure for his diseases but a release of pain and suffering when the time does come.

And then I will grieve again. Not just for him, but for me who after years is suddenly out of a job. 

What will I do?

Will I feel whole or half?

And we prepare again...

I want permission from someone to write an open letter to my husband's daughter. But family is messy. So how do I handle that balance? I don't know.

What it is like living with MDD, COPD, PTSD, and the after effects of a major stroke, cancer, PE, and other health issues. 

Here is where I insert a comment that Caregivers are worth their weight in gold. All Caregiver support people insist that a Caregiver get time off or help. 

Really, let's not laugh too loudly. 

No. 

Family acts as if they ignore the issues, they will simply go away. Hiring someone is perhaps an option if you do not live in a rural area that doesn't even have enough help to keep open one of the local nursing homes.

My husband was perfectly happy being more or less isolated before the Pandemic hit. Even after his vaccinations, he remains cautious and prefers staying home to going anywhere. 

We eat out in the car while traveling to and from appointments at the VA. For nearly a year, all appointments were cancelled. Now we are going to prepare to enter another phase of care which is called Palliative Care.

He tried that once before when he had cancer and didn't really stick with it. 

Palliative Care uses comfort care with a focus on relieving suffering and controlling symptoms so that you can carry out day-to-day activities and continue to do what is most important to you. Palliative care aims to improve your quality of life – in your mind, body and spirit.

Palliative Care is provided by an interdisciplinary team consisting of a medical provider, social worker, nurse, chaplain, mental health provider and perhaps others. The team’s focus is on identifying, respecting and providing help in achieving the Veteran’s goals of care, with support and care to address: physical symptoms, family coping, emotional or spiritual distress, and access to needed resources.

However, we will make it work this time as he needs comfort care for both his health issues and mental anguish. If anyone ever tells you that depression is just something you can bounce out of, tell them to go to hell.

Depression can become so painful and so deep that it causes every pore and every fiber of your body to hurt.

Combine this painful depression with major health issues, and you have a messy cauldron of mental and physical pain.

I'm trying to spend the weekend figuring out and having a heart to heart discussion with Rich to  prepare him for meeting with the Palliative Care Team.

His main goal is pain meds which his regular doctor seems to be against. He other huge concern is NOT going to a hospital. 

Last year he was dropped into the local hospital when he had a mild urine infection and they gave him the full Covid treatment. The strong steroids caused hallucinations and the mix up in his meds caused extreme pain and confusion.

I'll never forget getting the call from him and he was frantic and crying. I had his daughter call him and later she told me that her father was a 'Drama Queen.'

Years ago, I sort of agreed with her. He did make mountains out of mole hills it seemed. 

However, I live with him day to day. I see what upsets him and what doesn't. Lies, white lies, and  deception to him are unforgivable. 

Why? In Vietnam,  he was lied to and deceived. Surviving meant learning to trust those around you. If you could not trust your comrades, it meant death.

That is probably an oversimplification, but in layperson terms, that may be the only way it can be expressed. 

I am known for being honest and straightforward with no bullcrap. 

When we talk about things, his health, our relationships, and life. I am honest.  Yes, I do try and ease things for him. But I am honest and have been since the day we met.

How many times have I seen EMT's take him away from our home? How many times have I watched him nearly die and come back? Too many. 

How many times has a medical professional sat me down in a quiet room to tell me the worst news. Too many times.

How many times have I driven him to the VA to be admitted to the mental health ward? So many times. 

What have I learned with this relationship of ours? We have a very deep love for each other. Truly we have tested 'To Honor and Cherish' from this day forward.

As far as being a Drama Queen? Perhaps if someone were to understand what exactly it is like to live in such incredible mental anguish along with incurable life ending diseases...well,

perhaps, they would have a different viewpoint.

And so we prepare for the next chapter.

I hope to have some updates after next week.

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.

Testing, testing...

Monday morning was a stress test. Working with a person who has severe depression is and can be very frustrating.

I got him up early so I could get him to take a shower.
"I can't, I have to lay down."
This is where it gets frustrating.
I put my hands on my hips and feel the anger grow. I get a bit snarky, "So why do you need to lay down? Are you dizzy, tired, out of breath..." I take his 02 levels and they are fine.
In my mind that says it is the depression talking. He needs to move, he needs to keep moving.
So I become the bad guy. "Your 02 levels are fine, your blood pressure is good. Do you need me to get the shower chair and help you? Are you dizzy, why do you need to lay down."

I can't help myself here. I am trying to get him ready for a doctor's appointment. I tried all day yesterday to get him to shower and he was too tired. Yet he could watch the streaming on the small flat screen TV for 3 hrs.

He gets angry with me, gives me the look, and goes to lay down. I stand in the bedroom door and fume. I look at the clock, he needs to shower.

That is how the mornings go with appointments at the VA. Nudge, push, push, nudge, frustration and stress at just making the appointment on time in Madison which is 89 miles away.

The stress test came back 'abnormal'. That is all the tech would say. Cardiology called yesterday morning and scheduled an echocardiogram. I wonder how abnormal is really was if the echo is scheduled nearly a month away.

As is our normal routine when not rushing to get ready for an appointment, I left hay out for Rich to feed Bob and Thor. I reminded him that I had an appointment with the manager for his mother's apartment lease.
I contacted the attorney who will be her guardian to get some guidance and told him that I'd bring him lunch back from The Corners Restaurant.

When I returned home, he had his boots on, but was sleeping. I woke him up.
I gave him his burger and fries and then asked how feeding the donkeys went.

"I was too tired," came the answer.

I was quiet for a bit while I made copies of the POA paperwork and arranged some papers for him to sign regarding his mother's paperwork for elderly housing. The lease would not have to be signed until she had the new guardian in effect. That was a huge relief.

Finally I said, "Oh. Okay. I guess that is why they brayed when I drove in. They are hungry."
I got a nasty look and he sighed. "I better go feed them since somebody wants to play psychiatrist and tell me what to do."

I stack my copies of paperwork and shrug.
He stops at the door, "Is it hot out?"
Snarky remarks want to fly past my lips...but I press them closed and then say, "Well it isn't too bad."

He feeds the donkeys and comes in with a huge sigh. "There, don't I look cured! Don't I feel awesome? Don't I want to just run up and down and be fine? Oh look I am all better!"

Picture these words with aphasia and it actually is more drawn out and difficult. But I get the jist. He is angry at being made to move against his will. He wants to just go to bed, which he does for the rest of the afternoon.

I gather up items to go to the forest and go fencing. In my back pack I throw some toys. I won't have time for it,....but you never know.

We ... he argues with me again later after I draw out a map of how I am fencing. I tell him to get on the 4 wheeler and I'll show him.
"Quit trying to be the stupid doctor, I just need meds to make my head better. If my head is better I'll be better. Just stop it."

I let him blurt it all out and listen. I want to say to him that since he has gone out to feed the donkeys daily he has improved. He has anger which is better than two weeks ago when he had no emotion. He takes it out on me of course and I sit there and want to point out the good things that are small baby steps. He won't hear any of it.

I finally tell him that I'm going out to the garden. I leave and am there until nearly dusk.
Surprisingly he does come out of the house and onto the porch. He pulls up a chair and we are friends again as we quietly snap green beans.

Oh yes.
I did have a moment or two for some silliness.
And it makes me laugh.

Toys given to me by neighbors and other kids....
why not? We all need to smile and laugh.

Testing? He tests my patience. It is a good thing I have a LOT of it.

Brain Drain

Dementia with Behavioral Disturbance, unspecified dementia type

This is the Primary Diagnosis for my Mother in Law.

What does this mean?
According to the some articles Dementia is now considered a fatal disease. That said, let's not freak out. Let's look at it logically.
Our brain is an organ that controls the rest of our body. It controls all of our organs. Think of it as our hard drive.
If a segment of the hard drive gets 'corrupted' certain functions of our computer won't work.

Rich is the Financial POA for his mom. It may be a job he is not capable of in the long run. His sister who is 'second' on the POA forms will be moving to Utah in about 8 weeks.
She spent the last two weeks with MIL, seeing how she'd fare in her apartment.

Well, MIL can do most things but her memory is a huge issue. MIL recalls that Mondays at the nursing home are days that they take baths. Her weeks are foggy to her. Certain things from the week before get lost in the memory fog.
So she may not realize that a Monday has arrived and needs that help.
Details regarding medications do stick with her, but if the pill manufacturer changes in any way, she gets rather upset and positive that her meds are incorrect.

Sometimes she has trouble telling day from night.

I signed up for an 8 hour course at ALZ.org, if nothing else, I can learn a bit of how to deal with some of the day to day issues that arise with dementia. Communication is one of the biggest challenges. I need to modify my way of thinking and communicating. The course is free.

We've contacted an attorney and are getting some social workers to her apartment to conduct a Home Evaluation. MIL is sure she will get her 'mind back' and be done with the family invading her spaces. I get that as she has been a strong willed woman who is fierce about her independence.

I've contacted Helping Hands to come out and meet with the both of use also. This way she can have another set of eyes checking on her as I cannot be in two places at once.

We will be investigating Guardianship for mom too. That would allow the family to be family and not be the 'controllers' of her everyday life. 

Chronic Kidney Disease is closely linked to issues of behavioral disturbances, dementia, depression, and sleep issues.

Chronic Kidney Disease was her primary diagnosis but she has declined to the level of having 'Dementia' along with it. 
One wouldn't think that Kidney issues would affect the brain, right?

The kidneys take out toxins in our blood and dispose of them. However, when the kidneys can't do their job, those toxins reach the brain.

No one likes to think of their parent as infirm. MIL's decline to this present state was very slow, so slow as to be imperceptible except for the past 6 months. Her lack of self care was evident, however we could not force her to seek medical care. It wasn't until she had a fall and was taken to the hospital that we were able to finally get her the medical attention she needed.

To that end, she has done very well. Five weeks of Physical Therapy and socialization, walking, and being on a schedule all improved her physical appearance and the edema in her legs while she was in Rehab.

Since she has returned to her apartment, she has closed her door to the outside world and retreated to her chair and bed. 

I do look at the bright spots though. Some days she is the 'angry' upset woman, and then there are those days were she is sunny and happy. 

I will have to lean on Social Workers for assistance as I am already the CareGiver to Rich. I'm not sure how to navigate this new issue on my own.

One step at a time, just like our journey through cancer and stroke.

Elder Care

I thought I'd toss this in here as I really don't want it on my regular blog.

On the first weekend of March my mother in law who turned 87 on the 12th fell in her apartment and couldn't get up.
Rich's daughter and son in law found her on the floor.

She didn't want to go to the hospital but the EMT's did convince her to go.

She has severe edema in her legs and feet. Since Christmas, I've been trying to get her to go to her doctor and address those issues. MIL wasn't receptive to going to her physician or any doctor. She figured that she'd be just fine.

After nearly 20 days in rehab at the local nursing home, she is walking with a walker and moving about quite well. The edema has not gone away. In stage IV of chronic kidney disease, I don't think it will. PT and OT have improved her mobility and strength. We got her some special shoes/slippers for people with swollen feet. She hasn't been able to wear regular shoes since December.

We've discovered that MIL has some memory issues. The nursing staff is attributing that as to the reason she probably fell. MIL had a system for taking her meds but the general consensus is that her memory failed her and perhaps mixed up her medications.
She hadn't been eating regular meals, picking up after herself, or bathing either. I was desperate before the fall. She needed care and refused to get it. Or..simply forgot.

Here is the twist. There is no way of forcing someone to get medical care. However once she was admitted, two doctors invoked her POA of Healthcare. That meant she was not capable of making medical decisions on her own behalf.

It also threw in another terrible twist. She had never set up a POA for her financial matters.
If Rich had not been on her checking and savings account, her bills could have gone unpaid.
There are limitations.
Since MIL had not been taking care of her debts and some odd trends in spending for months...with no POA for Finances, we are helpless to take care of those things.
Once she returns home, if she is deemed no longer in need of a POA, she can do as she wishes.
She can not go to her appointments, she can choose not to pay her bills, and she can choose not to ask for assistance.

Legally? There is very little we can do to assist her without her approval.

The laws were set up to protect the elderly and I get that. I want to afford her all the dignity she needs. But.
I am at a huge loss as...a daughter in law as to how to assist her.

The nursing home is setting up an alarmed medication box for her to take her meds properly. MIL is resisting that saying she can take them just fine.

I hope that the med box works out and we can convince MIL to use it. I hope we can convince her to continue to exercise once she gets home too.

This is my first experience with caring for an elderly parent. What an incredible maze of paperwork, forms, and legal restrictions to jump through!

The End Game

Well here we are. The last entry in this blog was 8/16/16.
Rich had just completed one of his last check ups with the oncology department.

Let's jump forward to present date.
12/17/17.
On May 6th Rich had a stroke.
I wrote about it afterwards on May 12th.

I kept up with updating things and how I resigned from work 3 days after the stroke to stay home and assist with my husband's recovery.
He is an amazing man.

Cancer was big and scary. And it still hangs over our heads like the Sword of Damocles. Will it come back? Can it come back? Will we fight with it? Well, the answer to the last question is no. The other answers are unknown. Who knows what is in the future for us right?

I am now an unemployed caregiver. That is fine, everyone says how nice it is to be 'retired'. I'm not sure retired is the proper term at all.

Caregiver: A family member or paid help that looks after a sick or disabled child or elderly person.
Retired: Ceasing work. Having finished one's active working life.

I think unemployed caregiver is the proper term. Let's add. Farm help, chore person, house keeper, chief cook, and bottle washer. Appointment maker and so on.
Actually the whole process has been fairly good. Financially things are a bit tight, but all of our years of being frugal has paid off. We owe nothing on our vehicles and the only item left is the remodel loan.

I had felt that I'd be able to return to some sort of work by now. But that isn't happening.

Rich's COPD is not getting better. I don't know if it is related to the stroke or just the insidious disease marching down its timeline of destruction.
I know that sounds gloomy, but I am being pragmatic. It has always been the 'elephant' in the room. There is no cure and the end result is death.

So what is our next Long Road?

Our next long journey will be dealing with the after effects of the stroke, the continuing task of living with COPD and how we end up dealing with our lives until the end.

One thing we are not afraid of to discuss in our little house is death. It is there and it will be the end game for all of us.

So I will continue to write things here regarding how we deal with health issues and the end of life.

They will get along

Today we met with a Social Worker, a Resident Doctor Pete, and, Dr. LaConte.
I had a bit of a laugh when the Social Worker handed me her business card.  Sarah Rogers.
Let's just say it is a family name and Rogers was my maiden name.

Dr. Faris, true to his word was there.  He took a stool and sat quietly in the corner as Sarah and the Doctor Peter talked with Rich.

It was somewhat like an interview to see what issues regarding his health he would like addressed.

Sarah was direct and asked fantastic questions of Rich about regarding faith, spirituality, and medical concerns.
She was able to get Rich to give her a lot of information.

I'm not going to repeat our 2 hours with the doctors, but I will say I used a digital recorder so I can review the meeting. 

Struggling with lingering side effects of the radiation and chemo were his main complaints.  'Finding the new normal' was a key phrase.  Rich wanted to find the old normal.  His wish is to get back to what he used to be.

I'm not sure that is ever going to occur.  But that is my unspoken opinion and I will support Rich's desire to get back to the old normal.

Another main complaint is his balance.  We spoke at length about that today.
I think I haven't realized how much the loss his ease of footing has effected his mental well being.


I know Dr. Faris expressed how interesting it was to sit back and observe and not have to be involved in the conversation.


After nearly two hours of talking we are going to work on the balance issue first as that seems to be a key to making Rich feel more comfortable.

Dr. LaConte thought that Physical Therapy may help. 

Ear/Nose/Throat will be looking to see if there was any inner ear damage from radiation therapy 'scattering', as well as a follow up to check where the tumor had been on his tonsil.

There was so much covered by everyone it will take me listening to the meeting at least one more time to make some more sense out of it.

On our way home Rich talked about how much he like Dr. LaConte and how he felt really comfortable with him.

"I think we will get along just fine."  Rich said.

4 Month Visit with Hematology Oncology

We went to see Dr. Faris first who has been a big help through out the treatment process.  He is a psychologist.

Rich was pretty insistent on getting signed up for Tai Chi, as he feels this form of exercise can help with his balance and his psychical well being.  It builds strength and balance and so much more.

With that done we saw Dr. Rahim.  He went through Rich's chart and we talked a bit about how things were looking good and Rich was now in the monitoring stage.  There would be a follow up with ENT -- Ear Nose Throat, and we'd see him again in 3 months.

We told him that we were going to meet with a Dr. Loconte who is in charge of Palliative Care and Dr. Rahim nodded, he believed this was an excellent choice for us.  Dr. Faris planned on sitting in with us on the first time we see Dr. Loconte and Dr. Rahim said he would be dropping in also.

What exactly is Palliative Care?  Well it is not end of life care, that is called Hospice.

What Is Palliative Care?

Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.

Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.

We thought about this decision and felt that is was a good fit for Rich.  Dr. Faris had brought it up a while ago and we've talked with other health professionals [nurses in particular] about it and they said it was a great program.

As Rich told Dr. Faris yesterday, "Look, we are all going to die.  I just don't want all the decisions taken out of my hands and feel lost like I was during cancer treatment."
Dr. Faris understood.

With Dr. Rahim, Rich said, "If that cancer comes back, I am not going through treatment again."
Dr. Rahim shrugged and put a hand on Rich's shoulder and nodded.

"Mr. Ewing, let's cross that bridge if it ever comes to that? Okay? I will be checking in with you with your visit with Dr. Loconte."

So onward our care goes.

One day at a time.

Finally after weeks and weeks of seemingly never ending appointments we have gotten a week of 'peace'.

I took some time to be unavailable to work.  No, I do not get vacation nor do I get paid.

This week I got the Subaru in for a oil change, tire rotation, and over all check up.  The vehicle continues to perform well for us.

I was able to take Morris to the vet to get his overdue rabies shot.  I was able to get us both in for haircuts.

Until this week our schedule is such, that I have been working or we have been driving for follow up appointments in Madison.  We simply have been overwhelmed since he was first diagnosed.

So we concentrated on some farm work and catching up on other things.

We did some tree chopping. Brush piling.

Clearing out the dead ash trees...
These were things that had needed to be done.

We will be 4 months out of treatment come October 15th.
How does it feel?

His salivary glands may never be the same.
His energy level may never be the same.  This was explained by more than one doctor.  
Yet Rich feels as if he should feel 100% again.

He has lost a lot of weight after treatment.  I bought him new 'skinnier' jeans today.  Down two inches.

But we have really good days and then days not so good.

Yesterday was partly good and partly not so great.

Is this our new norm?

We follow the motto given to us by the girls at the infusion clinic and at the radiation clinic.

One
Day
At
A
Time.

CT Scan

The phone rang in the car...well I am surely never going to get used to having a cell phone that is connected via bluetooth to my vehicle...

Anyway we answered it and Rich talked to the doctor who did the prelim of his CT scan.

The doctor said "No evidence of cancer or a tumor." Although the scan did show evidence of a stroke that had probably occurred a few months ago.

If you need a reminder you can see the blog titled 911~what is your emergency?

I'm pretty sure this is the stroke they are talking about. So there was damage to the brain but nothing that showed up right away.
Let us not look a gift horse in the mouth.  

It felt like another elephant had been removed from our shoulders.
So as of yesterday Rich is free of cancer.  He kicked it in the butt with a lot of help from the Carbone Cancer Center and the VA.

Now we look forward and not backward.
Onward.

3 Months Out/PET Scan today

Shall I say that I am up early and worrying and have been worrying for about a week now?

The dreaded and much looked forward to PET scan is today at noon.
Results will be at 3:30 PM with Dr. Witek delivering the good news.
I'm sure they knocked out the throat cancer.  We are trying to only think positive but are prepared for the other diagnoses.

Rich has said if IT isn't gone,[cancer has become an IT now in the house], he would consider a simple option but could never subject himself to the hell that he/we went through again.  We'd seek palliative care.

Radiation in high exposures do cause some radiation sickness like symptoms.  The radiation can attack your red blood cells, affect your intestinal system, and the blood cells that produce bone marrow.

Rich is still recovering from his treatments.  The Carbone Cancer center used Tomotherapy which:

"An important distinction between tomotherapy and other radiation treatments is that past methods exposed much larger areas of the body to higher levels of radiation distributed from fewer angles. Tomotherapy, with its ability to deliver lower doses from many different angles, affects very limited areas of healthy tissue and results in fewer side effects." 
From the Tomotherapy Radiation Univ of WI Madison



 So the next few hours and days will be interesting and hopefully very joyful ones.

Reach out...

The waiting room at the Carbone Cancer Center is an interesting place.  Our waiting area is familiar to me of course after weeks of visiting it each day.

We see familiar faces after a while.  Some patients are old and then there is the real shock of seeing a young person a child...

Some people visit with each other, some stay isolated and don't make eye contact.
Some discuss their cancer and others will talk about anything but their treatment or cancer.

Yesterday as I was waiting for Rich, a woman came into the area.  She'd had surgery done to her mouth and throat.  She sat down not far from me and picked up a magazine.

Rich was called and I returned to working on the 'waiting room puzzle'.
The woman stood up and paced, then began to walk around and straighten up magazines in the whole area.

She came near me and quietly said, "I'm sure they are going to think me nuts for aligning all of these magazines..."

I saw her eyes and I saw what I thought was fear and loneliness.  I put my hands in my lap and gave her my full attention.

"Nope, no one is going to think you are nuts, if you are like me the only way to deal with all of this stress is to stay busy," I replied.

She nodded and dropped into a seat next to me.  "Yes! Yes, you are so right!"

Her hands fluttered and then she looked toward the treatment room where Rich had gone.
"I'm sorry but what kind of cancer does your husband have?"  Her question didn't surprise me, we often discussed cancers with anyone that asked.

"Throat Cancer," I replied.
She nodded, dabbing the corner of her mouth with a tissue.  The surgeons would have some reconstruction to do at some point...I thought.

"Me too," she said.  "They got most of it by surgery, but this is my second week of both radiation ... and chemo."

"You are just starting," I said.  "My husband has 6 more radiations to go."

"Did he have chemo also?" she asked.
"Yes, he did," I replied.  I decided not to share my husband's medical horror stories with her, absolutely she...did not need to hear that!
"We are done with chemo and heading towards the end of treatment."

She sighed, "I'm just so tired and the nausea, and the chemo...ugh...and I lost 10 lbs in the first week alone!"

I reached over and took her hand in mine and looked her in the eyes.  The eyes were so scared, so frightened...

"I'm not going to lie to you, this is a tough treatment.  My husband lost 10 lbs his first week also and we had to deal with some nausea.  Every person's treatment is different, but we've managed to come up with some very good 'power shakes' for him and recipes that are so simple and so packed with goodies..."

Her hands clenched mine as if I'd become a life line.

"Have you gotten the recipes from Jackie?" I asked.
She nodded.
"There is some great stuff in there, start eating and making some easy carbo packed foods now and freeze small packets for the days you are too tired to cook."

I nodded towards the treatment rooms, "I've sort of come up with some easy stuff for eating and he is still eating by mouth.  It isn't easy but we are making adjustments."

"Does he have a feeding tube?" she asked.
"Yes, and so far he just flushes it and then adds water and pedialyte because the chemo messes with everything..."
Rich walked out of the treatment room and I could hear his boots on the floor.

"Oh." She replied when Rich came around the corner.  

My husband, even with a cane can be a rather striking figure. He normally wears extremely bright colored western shirts.  His silver and black hair is bright and touches his shoulders.  Most of the hair loss is under the neck so most people wouldn't notice it.

She stood up and Rich told me that we had to go see Dr. Witek.  I told him to go ahead, I'd be right there.

I turned to the lady.  "I hope we see each other again, perhaps you'd like to talk, or maybe I can give you some resources that have helped me..."

Next thing I know I was holding this woman who had wrapped her arms around me tightly and held on even tighter.  
I wrapped my arms around her and held on.  I rubbed her back and whispered comforting words like a mother does to her child.

She stepped away and the nurse called her name for treatment.
Then she turned and grabbed me for another hug.

I held her tight until she let go.  She dabbed her eyes and then turned towards the treatment room.

Rich looked at me.
"She's just starting treatment for throat cancer," I told him, "I think she needed a friend.  She seems so frightened and alone."

I put my hand in his and we walked towards the next waiting room.

Dr. Witek was happy with how Rich was coming along and full of smiles.

However I kept thinking of the woman with the lonely eyes that were so full of fear.  
I hoped we would cross paths next week, and perhaps I could help in some way.

Rich and I talked a lot on the way home, but in those moments of silence my mind kept returning to that woman in the waiting room.

Rich and I have gone through such tough times together since the March 13th diagnosis.  
No one can even imagine what it is like unless they walk a mile in the patient's shoes.
As the care giver, I can only offer support and give care.

Who was that woman's support?
I keep thinking of her.

I hope to see her again.