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....

 

Weekends in hospital

The weekends in a hospital are not exactly full of useful info. I mean a doctor looks in and does their thing.  

What I wish for is a heart to heart conversation, but Dr. P and I sort of had that on Friday. The Living Will and DNR papers are active for now. If he were to go home and come back, I'd have to make sure they know those papers need to be activated as every time a patient comes in, they are considered a Code patient. Meaning, they will save the life if at all possible.

This is pretty good information to know.

Her opinion was 'wait and see'. 

He did have a minor improvement in being able to breathe. Not enough to come off the High Flow Therapy. It is specialized equipment meant for those who have orders not to be put on a ventilator or a DNR order. However, according to studies, dramatic improvement happens in 24 hrs.

That drama has not happened. 

Rich and I discussed trying to find out Monday if he can somehow be put on Hospice at home to pass away. He doesn't want to fight and he doesn't want to stay in a hospital.

Saturday was pretty quiet at the hospital, I sat and read and spoke to the nurses who were all kind and very positive. Apparently Rich is a favorite patient as the nurses quibble over who gets assigned to him for the day. Steroids, antibiotics, and lots of nebulizer treatments all day, all night are what he has going on. 

Rich and I were able to have time to talk about things and his wish is to be able to get off the specialized equipment and to come home with Hospice involved. That would mean visits by a nurse at home and no re-admission with his next exacerbation of his COPD.

The goal for the weekend was to transfer him to a recliner and see if he could tolerate a reduction in the high flow therapy.

Sunday was interesting. Rich's ol' fishing buddy came to see him. While the two visited [Steve said Rich just slept part of the time], I met up with my Legend Girls for coffee for an hour. We chatted and told funny stories and talked about places we'd dreamt about visiting.

I spoke with his Resp. Therapist in the hallway and asked her if she thought he'd be able to come home with Hospice. I told her that we'd discussed it. She said that was an excellent program for him and his wishes. 

When I came back from coffee time, Rich's daughter, her hubby, Ariel, and Steve were all in the room. 

Since Steve was ready to leave, I took the advantage of that. Ariel and I went home to take Charlie for a nice long walk on our gravel road so he could do his doggy stuff. 

On the way back in...I  stopped to see the nurses. The daughter, her hubby and a surprise visit from our friends in Missouri had all visited but had gone out to lunch.

The nurses said Rich was exhausted. They put a Quiet Time sign on his door and I texted all visitors that Rich was not going to see anyone from lunch until at least 3 or 4pm, they had to see me first in the family waiting room.

So the end result of Sunday was that a lot of folks came by. He did get in the recliner. They did reduce the airflow on his High Flow pillow cannula and he did seem to have a slight improvement in breathing. 

He actually ate 3 bites of an omelet at breakfast, drank water, had a milkshake for lunch, and had half a little burger and a milkshake for his supper.

Monday. Today, I hope to get some sort of directions from a doctor as to whether our plan and goals are even doable. I will be calling the VA Social 'Miracle' Worker to see what our options are through the Veteran's Administration.

The Missouri folks will stop in shortly to see Rich this morning and then they will head home.

Tuesday afternoon we have a Winter Storm Watch with blizzard conditions possible, high winds, and either rain and snow for us or 6" of wet heavy stuff.
If I am forced to be home through the storm, I will catch up on rest, and get the laundry folded.

I have to include this in my update for this morning. People and neighbors are incredible. 

There were visits to Charlie, there was prepared food put in my frig, and groceries left on my counter. This all done just because.

911 where is your emergency?

I gave him my address which appeared on his call board as I called from our landline.

"What is the nature of your emergency?"

My husband, difficulty breathing, he has severe COPD and contracted a cold.

We went through his name, age, and a quick medical background. Then assured me that help had been dispatched and an AED was on the way.

I'd put Charlie in the bedroom upstairs, moved things around for the medics to make getting through the house with a stretcher easier.

The dispatcher asked that I put any pets in another room. Done, I told him, and I said I had to move my vehicle to make parking easier for the rig. 

Done, done, done....

The first vehicle to show up was a Sheriff's Deputy. A text from Olive on the ridge said that her husband had run out to the road to make sure they could find our address. [I'd texted her to let her know why she'd see emergency vehicles coming down the road with lights on]

Next came the the Fire Department Suburban.

I thanked my lucky stars that we didn't just have a snowstorm. 

The amazing part is that in this rural part of Wisconsin emergency services are quick, polite, and well prepared. A few times the head Paramedic asked me if his DNR bracelet was still in his wishes. I said that he stood by them and so did I. 

We drew the best ER doctor we could possible get. His father was a well loved doctor here for decades. Little Mac moved to the area several years ago to be with his father as he retired, leaving the Chicago Cook County ED. If you have ever been to Cook County ED, you know it is one of the biggest mad houses in the universe.

When Rich's fingers began to turn blue when I was talking with the ER nurse, things got hectic. Little Mac rushed in, the upped the 02 in the cannula, a respiratory therapist left to get a specialized mask. I stepped out of the way. I watched his body jerk and his eyes close as he struggled for air.

The specialized mask was put over his face and head. It is often used in ICU's and is the predecessor to being intubated and put on a ventilator. Again Little Mac asked if the DNR was indeed what Rich wished. I said yes. 

It took some time for them to get him stabilized. The respiratory therapists proved their mettle as they worked with the Nebulizers, the mask, and cared for him.

Once he was in stable but critical condition we discussed what next. Little Mac didn't feel he was stable enough to go quite yet to a larger hospital. He'd need special care with that portable ventilator.

To the doc's credit, he was able to communicate this to Rich. Rich asked to stay here locally. Little Mac said he'd have to come off the specialized mask. They spoke quietly about his wishes.

Little Mac went over it more than once. 

"Let me be perfectly clear, you want no life saving measures if you have another episode." He looked at Rich who nodded and breathed out. "Yes."

Little Mac looked at me.

"Yes, his wishes are my wishes. I stand by him."

~~~

So how does this feel? 
It makes your heart race, your chest hurt and your soul cringe.

While his daughter was still at the hospital I went to work out at the gym with my Fellow Legends.
Burning off the interior feelings of helplessness, rage, fear, and anxiety really helped. 63 burpees along with 63 dumbbell lifts, and 180 feet of lunges helped chill me down.

I was able to go back to the hospital and face the new attending doctor along with her questions. So this morning I'll bring in his Living Will along with his DNR papers so they can have it for their files.

I stayed all day and read a book while he rested and read a book. The library is providing good reading while I tend my soulmate.

I am weary but determined.

44 days out from the Prolia shot...

 Well I won't lie. I have aches and pains and I don't know if I should blame them on the constant shifting of weather or the Prolia injection. 

The hands hurt. I've had that before and did PT for the arthritis in my finger joints. Since I started going to the gym in 2018, the pain had nearly disappeared. Except for the times I've taken Osteoporosis medications.

So. What is it? Weather? Side Effects? 

The nurse had said. "Drink LOTS of water and you can take Tylenol for your aches and pains."

I did just that yesterday morning when I got up and felt once more like 💩. I swore, I was going to call the nurse and yell at her and swear off the next shot. I felt like a train had hit me figuratively.

I took 2 500 mg of Acetaminophen and went out to do chores. Hubby asked how I was doing and thought I should skip my Legends class at CrossFit. Nope. I said I had to go to see if I could get rid of the aches and pains.

Funny thing happened though. Between the Acetaminophen, the water, the workout, and the fun we had at the gym, most all the pain went away.

Us after a class this past week. 

We are in a CrossFit class fit for older adults. The tall lady next to me is one of the ladies who started the Granny Basketball league. She has had some very tough health issues this past year, but she remains positive and if SHE can remain steadfast, I can do it too. We call the class Legends. 

It is specifically for those of us who are not athletes and who are older beyond 55+ or more. We work modified workouts specific to our own abilities. We need to 'use it or lose it.'

AND...we share common support and laughter. Doing it together is so much better than trying it alone. Our class size is generally 6 to 8 people. But there were a few of our Legends that were on vacation this day.

Back to how am I doing with Prolia [denosumab].

So.

My hands ache more often. Some days my back has an ache or my shoulders ache or...well here and there I get some aches. I may be a bit more tired than normal, but that could also be related to winter days being shorter?

Right now? All of it is easily handled with Tylenol. 

I'm following the nurse's recommendations and so far so good. Fingers crossed.