More changes... and adjustments.

 Well, things are changing again which is how life goes, right?

The Dexamethasone has helped with the breathing and with the appetite [none at one point] and wakefulness. In some ways the wakefulness is overbearing. Often hubby is experiencing being awake most of the night and not having any day time fatigue. 

He has asked for breakfast at 3:30 am. Uffdah. It gives a whole new meaning to making coffee while bleary eyed. After exactly 2.5 cups, the oatmeal must be made in an exact prescribed manner. Each day I am given the specifics, even though I've memorized it.

At first I get peeved, then I remind myself that the DXM disturbs his sleep cycle and he has dementia. This is how he lives day to day. Our new ab-normal of sorts.

It seems that every other day he actually sleeps the night through and I have trouble waking him. I imagine his poor ol' body is just exhausted after a 20 hour marathon the day before. This effect is from the DXM interrupting the cortisol in his body so his brain isn't on the same clock as mine.

Meals. Every two hours.

"Can I ask you something?" I hear. 

Sure.

"Can I have an apple/popcorn/cereal/toast/chips/cheese and crackers."..name something that is eatable and that is what he wants. Or "I have a taste for...a banana split, liver or onions, chocolate cake...", or something SO specific that I would have to go shopping for it. I usually placate him with the intention of doing exactly that.

My thought process. He wants it and it won't leave his mind. I have a 76 year old toddler. At least he doesn't stomp and throw a tantrum. I do my best to accommodate. Why not? One day I won't be able to.

I just ordered a 'camp' bed to put in the living room so I can be closer to him at night. Our only other bedrooms are up the stairs. I've always wanted one of those for sleeping on the porch on summer nights so I can watch the stars overhead.

Time to redecorate! See, I will find something positive in this. I ordered a nice 'Antique Rose' blanket and matching curtains since the camp bed will be next to the porch windows. I might as well make it my 'special spot' for the duration.

The Hospice nurses knew that Rich was having some trouble with sleep but it has gotten much worse. The up side is that I found some programs he might enjoy watching. 

Here are a couple of funnies to go along with Caregiving.

Some good news is this. The Social Worker for the VA Caregiver program and I talked last week. I inquired about Respite Care. 
Destiny called me [Yes...very cool...THAT is her name] and is now interviewing a couple of candidates for weekly respite.

YES!

and I can arrange to go to the gym and maybe even have lunch with a friend.

I qualify for 8 hrs of Respite Care a week. I feel like somehow I won the lottery. I'm not sure what my share could be yet, but the fact that someone who can be with hubby while I do the things I need to get done?

Priceless.

I'll split it between two days a week.

Fingers crossed for this.

One day at a time.

A lesson I just learned to accept:

Not a good start to a weekend...

This new territory of Hospice and medications is a new experience for me that I'd like to share with other folks so they can understand what to expect if they are to choose this path.

First off. Thursday night was one of 'those' nights. Rich had trouble sleeping and would wake up and sit on the edge of the bed for a hour or so at a time with his CPAP on. Sometimes he'd turn the light on and sometimes he wouldn't. 

I'd hear it and get up to check on him. He said. "I'm fine. Just can't sleep."

Finally at 3:30 he was up once more and called my name. I drug myself out of bed and answered the 'call'.

By 4 we were having coffee and as I was making a cup for myself. He suddenly called for a bucket as he was having the heaves. He had a bit of nausea that eventually passed and I made him his breakfast by 5ish.

By 6 he was ready to go back to bed, which he did for an hour and then was awake again. 

The new medication that replaced Prednisone was dexamethasone which helps him breath much better but has nausea and insomnia as some of the side effects. IF anyone is going to have side effects, it is my husband. 

A good side effect was getting his appetite back. 

That passed and by the time I made CrossFit and picked up a few things in town, I'd already put in an 8 hour day. 

Late Friday night, Charlie woke me up by standing on my chest. I told him to go back to sleep. Then ick. I heard the retching. The poor thing, poor me. By 3am Charlie finally settled down after being ill quite a few times.

This morning he is refusing to eat so I'm going to make some cooked rice for him. -- He has had water.

My other half got up complaining of a tummy ache and feeling off. Now hubby takes some pretty powerful opiods to ease the pain of breathing [I cannot imagine since it is no effort for me]. 

A side effect of these meds is...well. You know. Constipation. We have meds to counteract that side effect but once in a while when prunes and prune juice doesn't work.

Um. Other efforts must be done.

I won't go into detail. 

But let's just say that 'we worked things out'. 

We had a bit of a chuckle when we were all done. 

Now back to nursing Charlie. There are no small animal veterinarians available in our rural area on weekends. So I'll be working on him next and doing some cuddling with the little guy.

We never quite know where life is going to take us and I must say that my experiences with hubby, my MIL, FIL, and my father have proven invaluable. I've learned so much about elder care and caring.

Not a thing that happened to me this day was 'disgusting' or gross. As they say "Shit happens".

My one grand daughter was curious about these things. She said she wanted to learn about this process we call life and elder and end of life care so that it wouldn't be such a shock when she encounters it with her own folks.

She said her mom keeps getting shocked and surprised by the things she has to do for her great grandmother [96] and her mom [mostly blind]. 

Life is a process. I've had so many great years with my soul mate that I don't mind caring for him. It is a reflection of caring and love.

Sure, some days I feel it is a huge burden and I even get a bit tired of being 'on call' all of the time. I am going to call my social worker from the VA [if they still have jobs!] and set up a companionship day each week for hubby. 

It will give me a break one day a week for a few hours to go hiking and doing outdoor photography.

You all have a great weekend!

I see snow in our forecast for tomorrow after an 80 degree day yesterday!

Both patients seemed to be recovering. So now I am going to let my laundry fold itself while I get out a clean blanket and read a book until I fall asleep. Wait...does laundry fold itself???

Hubby and Charlie are snuggled in taking a nap. How sweet is that?

How it was...becoming Stoic & Help

Sorry this is sooo long! But, it has been on my mind for quite a while.

I was raised in a home where complaining was discouraged. 

My mother had a saying that many children might recognize: "If you're going to complain, I'll give you something to complain about."

I never thought of her as mean or terrible; that's just how things were. Complaining simply wasn't done.

That is, unless she complained. Then it seemed acceptable.

I quickly learned to dodge my mother's criticisms and adopted a Stoic demeanor.

A Stoic individual is characterized by strength and resilience, confronting life's challenges with reason and tranquility. They keep their emotions in check and often manage stress and hardship without complaining or seeking others' support.

Is being Stoic a beneficial trait? I'm uncertain. It was advantageous during my childhood. Not reacting to my mother's anger was more effective than panicking. Stay calm. Stay silent.

Once, I believed she punished me just to provoke tears.

It was a childish notion. I was just a kid, assuming she sought a reaction. So, I adapted. No reaction. It might have infuriated her more, but I felt victorious in some perverse way; I had outsmarted her. It was my super power.

She could strike me with a riding crop on the back of my legs, and I would stay mute. She couldn't make me cry. I was too tough and I just gave her the death stare.

I was 18 when she had her last attempt at swatting me out of unprovoked anger.
She raised a wooden spoon and I caught her arm in mid swing. I was stronger than her and perhaps an inch taller. 

I will never forget telling her quietly: "Never again. You will NOT touch me ever again." I held her arm and stared into her face. I must have had rage in my eyes that she could see. 

She dropped her arm and never tried to hit me again, though the verbal abuse ramped up.

My upbringing taught me to be self-reliant and resilient. I hardly ever engage in conflicts. When someone infuriates me, I might just offer a smile and adopt what my son labels as passive-aggressive behavior.

He might be right. I typically avoid arguments and steer clear of confrontation. Yet, in some way, I ensure I have the last nod.

My mother demonstrated the most effective form of punishment: the silent treatment. She executed it with such skill that it filled our home with tension. We tip toed around her, not sure when she would erupt. Living with her was sometimes like tiptoeing around a ticking bomb.

I often wonder if she employed these tactics as a means of survival during her childhood, or if there was something more sinister at play.

Despite it all, we sort of loved her. Dad loved her no matter what.

As I matured into adulthood, I evolved from a shy child to someone who could navigate murky waters with some confidence. I became a 4H leader and a teacher. I wanted to give other children what I never had.

My father was a man with a huge heart, a mild manner, and a great imagination, who worshipped the ground my mom walked on.

Neither parent grew up with parents that were loving and caring. My father's mother divorced in an era where you did NOT divorce. She remarried and shipped my dad to grandparents who did not know what to do with my dad.

Mom was raised by a brutal father who would lock her in the wood shed for real or imagined transgressions. Her mother was ruled and abused by her dad. 

~~~~~~~~~~~~~

So where did that leave me as an adult? The first time my heart actually throbbed with such incredible love was when I held my first son. I knew then, what love was. My husband was an abuser also, I'd married my "mom" -- he had a drinking problem and was a control freak.

The end of our marriage came in the barn one day when my 'ex' husband held me in a choke hold and told me that he could kill me and make it look like an accident. He was a Paramedic after all. I believed him. I ran away that night with the clothes on my back in an old truck. [I don't think the kids ever forgave me for that, but my survival instinct kicked in and I ran like hell.]

Jump forward 30 years. I am still stoic. 

I married a Vietnam veteran with his own issues, and somehow we two very broken people made a go of it with so much love and respect for each other. He broke through my iron heart.

But I have learned how important friends and being kind to others are. One thing I never learned [never was taught] was to do those beautiful little touches that my friends are always doing.

I get a card in the mail, I get a phone call from an old school friend. How are you? How are you coping?

How did I not learn how to be super kind and sensitive and thoughtful enough to send cards or do something unexpected to friends. I never learned those things, not those little touches that are so amazing.

I only know how to give my friendship and to jump in when someone needs something. I will drop everything to go help others.

How odd, I never learned the nuances and small touches that others have shown me. This really came to light when a very wonderful lady sent me a package this past week.

I'll write about that package and other fine things that have happened to me on the Mulewings blog.

But this morning I sat here wondering. 

And I still struggle with this idea today.

I have just found that asking for help may be the hardest thing I've ever done.

While meeting with a social worker who sat on my loveseat with Charlie in her lap wiggling around ... I asked for help.

I guess facing the realities of Hospice has shown me something I've never imagined. The kindness and thoughtfulness of humans is a real thing.

I'm not doing this alone anymore.

Updated test results.

Our health system uses MyChart which allows the patient to see their doctor notes and review the lab tests that are done.

If you haven't studied anything in the field of medicine lab tests can be very confusing, however there are explanations along with the fact that most doctors or a nurse will explain them to you via a phone call. The results are generally also reviewed by your attending physician.

It was helpful to read the ER doctor's notes as well as the daily notes from the doctor who saw him in the hospital.

What happened in the ER was Respiratory Failure. If all of our 'ducks' had been in a row, Rich would have refused further care. As it happened, he did survive with further heart, lung, and kidney damage. His lung capacity is rated at less than 30%. That is all alarming of course, but expected at this stage of his COPD.

It sounds like I am being clinical about the whole thing. I am in a way. We've been in a cycle of life and death brushes since his diagnosis of throat cancer on Friday the 13th, March 2015. 

He had an anaphylactic reaction to one of the chemo meds a few weeks after that. I stood by as the PA system identified a Code in our room and as people rushed in to keep him alive.

Next spring he had a severe stroke. The neurosurgeon who met me in the larger hospital grabbed me to come say a goodbye to hubby before they wheeled him into surgery to remove blood clots in the brain. He was not given much of a chance for survival. But he did.

That next winter I followed an ambulance to LaCrosse once more, the doctors in the local ER didn't expect him to make the trip alive from a Pulmonary Emboli. Blood clots in both lungs. In ICU, it was pretty touch and go, and 4 days later he came home.

By then Rich was adamant about NO more. No more brushes with death and ICU's. 

Yet we went through it once more because we didn't really understand what was going on. The Bipap was placed on him as he had a respiratory failure. He survived that and asked to be taken off the Bipap and requested not to go to a large hospital and be put on a ventilator. He made his wishes very clear.

Four days in the local hospital was enough for Rich. He did not want to be there.

With Hospice in place we will never have to call 911 again unless it is for a fall and a broken bone. Rich is pleased with this new chapter in his life and is happy to be at home.

The damage to his organs was pretty severe this time around. However, there won't be any more tests for him to endure. 

Friends and family can come and visit. He is comfortable with our new routine. He tells me what he fancies for food and I get it for him. His appetite has not recovered at all, but he isn't bothered by it.

A good friend of ours came over last night to visit a bit with Rich and she started to cry. And she felt awkward and apologized. We told her that crying was good and we didn't mind. She cared and that was all that mattered. She was sorry that she wasn't visiting more often. I did explain to her that she had 3 teens to attend with one in college and another ready to graduate and go on to college. 

Rich is content, tired, and worn out. But he is enjoying watching the birds, watching the muddy mules, and being with his dog.

1996.... the two of us....
doin' what we did best...

Preconceived notions true angels...

I was pleased when his daughter called to 'see' how dad was doing. I gave her the run down and said I was a bit swamped still with catching up with spending the last week in hospital with her dad and processing all of the changes with Hospice Care.

I told her that I had an aide coming out today to help sponge bathe her dad. She commented in a very odd way that she was happy about that and looked forward to him being able to do his showers and toilet things all on his own again.

What part of me doing most of that work for the past 4 years has evaded her?

She thought is that since he was released, he is OK. Meaning healed? Meaning all better? Perhaps. Cured. 

He was released because he wanted to go home and didn't care if he got better. He just wanted to be home with with Charlie, the birds, and his mules.

Today was another flurry of Hospice help. Rich got a 'bed' bath. Amazing what a home aide can do! He felt so good after that was done but also tired.

Jesse, a social worker, came out and sat with Charlie and I on the couch. We went over the paperwork again along with the slight change in medications.

It sounds like the nurse who will be in charge is visiting tomorrow.

I know it sounds like too much going on in this situation, but this is the way to get things started.

Since nothing much more is needed here right now, I'll probably be getting back to my regular blog for a while. 

"In this life we cannot

do great things.

We can only do

small things with 

great love."

~~~ Mother Teresa

This is how I feel all of the Hospice Team is treating us.

Midnight Musings

Sleeping on the love seat may not work out like I thought.

Being a 'nursing' assistant in the middle of the night is not so awful. But it doesn't add to the beauty sleep.

We got home as planned and lo and behold, Daniel from Hospice was right behind us. Olive's husband was also there. The guys got on each side of hubby and helped him into a transfer chair 

There was a lot of paperwork to go through and Rich was too exhausted to actually deal with it. Verbal permission was granted for me as his caregiver to handle it.

What did we possibly need? We went over the need for a commode. Hospice would replace his concentrator and deal with his oxygen needs. 

The RN went through Rich's current medications and made some adjustments.
He mentioned that his assigned nurse, Jason, would be out early next week to do what those nurses do. I asked if the Jason's last name was Jason M. and he said it was! We've known Jason and his family for a while. I knew he'd transferred to become a Hospice Nurse. What luck that we would have someone Rich was familiar with. 
I used to work out with Jason's wife at the gym when I was doing 6 AM classes. Small world.

He then went through some of the services they offer. Apparently I can also get Respite care so I could visit my son, his wife, and Rory! 

My head was swimming as we entered this new uncharted territory. I was left with stuff to read and look over. 

One of my old friends from grade school called to chat a couple of hours later. I heard a knock on the door and there was a delivery van from MN with a concentrator, tubing, oxygen tanks for back up, and a commode. 

All of the supplies I thought I would need! 

[They also take over the oxygen equipment from the company that supplied it before we went to Hospice]

How in the world could Hospice pull that off?

I'm used to a rather slow motion experience with the VA and the regular medical field.

I got a huge surprise when Rich said he was hungry. I made him one scrambled egg and some bacon. He topped it off with a piece of buttered cinnamon swirl toast and a cup of coffee.-------- This is the largest meal he has had in a week.

We are getting pretty good at the wheel chair thing and um... the urinal thing. 

I want to shout out to the Social Workers of the world. Where would I be without you?

Social Workers get things done. The VA social worker for me as a Caregiver has been so helpful along with the local hospital social worker. They set things in motion and got stuff done.

Hospice is sending out their social worker this week to meet us.

I am worn out but feeling more calm.

Rich woke up at midnight and called out. As I was helping him with the urinal he chuckled lightly and said...

"Wow, they are actually going to let me die then right?"

"Yes, isn't that what you want?"

He gave me a wide grin and said. "Yes, I, DO."

He hugged me when I finished helping him.

"Thank you so much. You are the best."

This morning I am tired. With every little noise, I was listening for Rich to call out for something. Our tiny full sized bed doesn't give me much sleeping room especially with a person whose arms and legs twitch often. So I'm going to try and figure out something better. Maybe a cot would work next to the bedroom. They are not big but I can stretch out and be close enough to help.

Some good things about being stuck at home more is that I can practice my Still Life and Indoor Toy Photography. At least until I can start to plant gazillions of flowers.

And Charlie is beside himself...

so happy to have Rich home!

Updated

Monday's Update.

When the attending doctor came in Monday morning we discussed Hospice Care, she felt as long as we both understood it, it would be an excellent choice for him.

Respiratory Therapy agreed that to be able to choose going home like this with him in control of the rest of his life was a gift. 

His decision was not weighted lightly. At this stage of his diseases, he would more than likely be making multiple visits and long stays at hospitals. We'd told his daughter of the decision the day before. 
He is tired. He wants to be home with his silly dog and watch the mules eat in the pasture.

The hospital social worker came in next and went over how Hospice care worked and she'd get started on it.

The attending doctor said it had to be in place before he was released.

He was moved to a regular cannula to see if he could tolerate it to make his move home safely.

He looks rather normal and his spirits are pretty good along with his vitals. If he'd stayed under hospital care he'd probably see another week in the hospital.

However, that is not for my husband who would rather be surrounded by his forest and his animals. 

By 2:30 we had a plan. 

I bring him home at noon thirty and meet the Hospice nurse at my house for his paperwork and going through his meds.

Interesting to note that when you enter Hospice [you can come out anytime] you get to choose your medications. So if he decides he no longer wants to take 10 meds in the morning, we can stop taking the blood thinner and other meds if he chooses not to.

He doesn't have to nebulize if it makes him uncomfortable. 

The other rules that will come into place is that I will have to be with him 24/7. So in order to get errands done or groceries, I have to have respite. The VA team is working on home health for that. I say good luck with that.

Rural home health is sparse and hard to get. 
I don't know if you all recall my Geologist Friend. The pony tail guy with two shaggy dogs. 

Last night Jason offered to come out once a week and stay with Rich so I can get things done. He and Rich get along well. 

Rich's long time friend and hunting/fishing partner has offered the same thing. He came to the hospital yesterday and brought Rich a mini Charlie to hold and hug.

Rich took his mini Charlie and made it growl at the therapists and nurses for fun. His spirit seems to be in a good place right now. 

We will be getting him home just before a huge weather event hits. Winter storm warnings and advisories with heavy rain and run off! What a way to come home!

I'm feeling a lot worn out but somehow more settled now.

This guy stole my heart 30 years ago and is my soulmate.

So now we enter our next phase of life.

It sure has been a Long Journey....