The End.

September 11

He kept on going and giving the nurses fits and starts. They thought he should have been 'gone' last week, but since he has always been known as a tough ol' buzzard...he kept on keeping on.

What I mean is. He kept 'hanging' in there when they didn't think it was humanly possible.

Today was his day. 

It is an act of love to tend to a dying person. It isn't scary. It isn't awful.

I washed his face and other parts. I massaged his legs that were shaking and spoke quietly to him about how he needed to gather up Fred and Badger [mules that we nearly always rode together in years past] and have them saddled when I got back to him on the other side.

I told him how much he meant to me. How much I loved him. How he made my life more meaningful. That I wasn't letting him get away with just leaving me as I'd find him in the afterlife and we'd be together again.

Eventually the body systems shut slowly down and the breathing got very calm and then paused and then started ... and then paused. And he became so peaceful looking as I held his hand.

And there it was.

He reached the end of his Long Road.

No one likes this part...

Well, we were are still hanging on together.

This morning I realized that I didn't have a clue what I should do after the funeral home picks him up when he is gone.

We'd talked about what he wanted, we discussed things, but he basically said he didn't care for a big Gig.

Being the Stepmother, I want to get things right. No, it was not planned ahead, he didn't want that. Oddly enough, I'm the planner of most all things. This was in the back of my mind saying "Later, I'll deal with that Later." 

I decided Later Better Be Now.

First things first. I opened up the funeral home's website and started researching information.

The funeral home had very informative website.

I was stumped at the obituary. I mean, what should I even think of writing up?

His could be short and sweet truthfully. His parents are gone, his sister in Utah is alive, and he has a daughter and many grands. Simple right? Meh. 

If someone knows him, they will know all the other important stuff.

Rich's daughter had texted me yesterday evening to come out for the day. I decided to get her in on the 'action' so to speak. 

Maybe I surprised her a bit. We went over some details of what an Obit was and how to write it. Being ME, I decided to follow a suggested outline but not go into the depths that I've seen so many times.

I suggested something quite funny and she laughed a very wonderful and true laugh. I've decided to include that 'funny' in his obit.

I told her what I'd decided as far as burial vs. cremation. I also discussed having a memorial type thing at the funeral home or something like a celebration of life but very informal. I felt like I needed to give those who knew Rich a chance to gather and exchange their favorite stories about him in a comfortable setting.

I wanted her to be involved, after all, she is his daughter. So I gave her a thumb drive with photos I've collected from our time together. I asked her sort through and decided what we could put together for the funeral home. They offer a large screen that would display photos in a video format.

She asked about flowers as her dad was not a flower guy. I laughed and said he'd love two bouquets that the mules could eat. I got a quizzical look. I reminded her that the bouquet at our wedding was just that. Wildflowers with oat, barley, and straw. Fit for an equine dining experience. She laughed, she remembered it because one of the mules tried to eat the bouquet out of her hands.

I asked her if she would speak about her father and she quickly said no. It could be uncomfortable, I knew, so I didn't press.

I said I'd prepared something.

She asked about a Pastor to speak for him. 

"Your dad does not want that. He didn't want religion involved at all. No prayers, no mention of god." She looked at me quizzically.

"Your father unequivocally felt that if there was a God, he would not have let him suffer through the things he had to do in Vietnam. Many things he was ordered to do went against his moral judgement and soul."

We talked about the graveside thing. I'm not sure what it is really called. I said I'd talk to the funeral dudes [I know not the right wording?] 
I think I'll ask about playing Taps at the gravesite.

He did serve with honor even if it tore him up. 

The only thing wrong with those hospital beds is that I can't slide in next to him and hold him in my arms. If I had designed beds like this for home use. I'd make that possible.

His daughter was hesitant when she saw her father who is now unresponsive. He will grunt a bit when given a hug. That is a response.

I showed her how to lay her chest on her Dad's and softly hug him. I left her to it. 

I often go in and bend over the bed and lay my head on his chest to listen to his heart and his breathing. As a couple we always slept close to each other wrapped in each others arms. 

The nurse came to visit today and we stood with Rich for a while. He is not in pain and seems so at peace right now. He looked at me and said, "I honestly did not think I'd be making this visit today."

I nodded to him and said, "I thought so too overnight. He keeps making small rallies after dips."

He picked up Rich's hand and held it before he left. "I'll see you brother, take care."

[Nurse Jason is ex military also]

Thankfully I had Rich's daughter to myself during the day and we settled on some things that needed to be done and we didn't have to talk under the watchful eyes of her husband.

She left after a few hours and Steve came by to check on Rich. Steve said he didn't sleep much last night as he was so worried about Rich. 

Charlie kept us all grounded with his tail wagging and lap sitting.

One more day.

A very quiet Sunday and a very amazing friend.

Steve came out on Steve-time. He was the only person to visit on Sunday and I am lucky that he came.

I'd told Steve that he could stay inside while the nurse visited and we had our discussion of plans. He always went outside to be out of the way.

Ariel, Steve, and I were the last ones to exchange a conversation with Rich. With the systems shutting down gradually, the verbal communication had left him. He still would open his eyes when spoken to but rarely respond vocally to any questions.

Muscle twitches and movements were random now. It seemed that Rich was reaching and grasping for things. [This is a normal part of the body shutting down the control over muscle movements]

His breathing was comfortable. The nurse and I washed him up a bit and changed his briefs. There is a trick to changing sheets and briefs with a patient that can't assist you anymore. I had no idea. Perhaps I should have been watching YouTube for a tutorial.

The nurse decided that we were low on one medication, so we searched for an open pharmacy. I was exhausted from the long night of watching over a very animated Rich who often tried to climb out of the safety rails and pulled off his cannula.

Steve volunteered to run to town only to come back and tell me that the only open pharmacy in our little town had none of that med. The Hospice nurse at the 'hot' line searched and called pharmacies and found one an hour away that had the meds we needed for early morning.

Steve grabbed his keys and set off for a 2 hour journey to get medications for his best friend.

The rest of the afternoon was pretty quiet. My neighbors to the west [the one who brush hogged the pasture] came over with a wonderful array of chopped vegetables, crackers, and cheese. I snacked on those items most of the afternoon. The rest of the day was spent reading a book and nodding off for short naps between medication doses to keep him from having pain in the struggle to breath.

By evening I felt as though I was becoming an expert at catnapping between two hour med doses. 

I kept moving the cannula back on his face and talking quietly to him. 

I told him that Fred [his beloved mule] was waiting for him as well as his father. I retold the story of our meeting and our long distance courtship and asked if he'd greet me on the other side too so we could one day be together forever.

He settled down and finally seemed comfortable.

A good visit [s]

I got a text from Ariel that said she was coming by herself on Saturday to see her Grandpa. I made note of that. It is a 3 hour drive for her. Her mom and husband went home on Thursday after we'd moved the bed and she'd seen her father sitting in the wheelchair with the nurse.

I wasn't terribly surprised. Ariel has gotten a pretty independent streak after moving out of her parents home. I had to laugh when Ariel said she was coming by herself to see her Grandpa as she said her mom was too full of drama. Her mom has a vehicle too and she knows how to get to our house and she lives closer.

Ariel just wanted to quietly sit with her Grandpa.

 

Steve came. He is so reliable right now that Charlie waits sitting on his chair listening for the sound of Steve's car engine.

Nurse Scott and I went over our meds once more as he talked a bit with Rich. The night/evening agitation was getting stronger. The meds are looked at daily and adjusted to what is going on. 

Rich perked up when he saw Steve arrive once more. Steve chatted to him then sat quietly with him after Nurse Scott left. 

Ariel arrived and Steve headed out with the promise of coming tomorrow. I can see that this is very hard on him.

Rich grinned from ear to ear when Ariel asked if she could lean over the bed and and give him a hug.

The afternoon wore on and we had a few more restless episodes where he tried to get out of bed and pull out that annoying catheter. He didn't know what it was each of those times.

When the Chaplain Lisa arrived he was pretty quiet and was resting. Suddenly he asked for a Pepsi and I said I'd grab him one.
When I went around the corner to get one, he grabbed the mattress and struggled. The Chaplain moved quickly and supported him so he wouldn't fall.

We got him set up safely. He downed half a small bottle of Pepsi quickly and then started to go into respiratory distress.

I was aware of Ariel behind me and the Chaplain sitting and supporting Rich on the bed while I knelt in front of him and helped him do pursed lip breathing while I watched the 02 meter start climbing from some alarming numbers. I yanked out the Nebulizer and helped ease his breathing more.

Once stabilized, he was exhausted.

Above and beyond her call of duty, Chaplain Lisa stayed to help me settle him back in bed and we used a folded sheet to move him into a comfortable position.

The rest of the day and night, Rich started talking rather loudly and with animated hands. Most of the words weren't understandable, but sometimes they were. He laughed a lot. 

He was asleep while he was doing this.

I had to check every half hour as he was pulling off his 02 hose and wrapping it around his hands and fidgeting with it while he was asleep.
I finally grabbed a fresh new hose and put it in his hands to hold.
He is still holding it this morning.

Note. Side rails are such wonderful gifts on a bed.

If anyone considers Home Hospice, I would recommend it. At least consider that in the final days [at least with us] a nurse comes every day. It is not a 5 minute visit. The nurse spends time with the patient observing and asking questions. The nurse calls the attending doctor and updates them to see what can be done for more comfort or what needs have to be met. 

Rich is treated with the utmost respect and included in anything he may understand. 

Family participation is recommended to give the primary Careperson a chance to rest or perhaps even take a shower.

My personal opinion is that even though there are a lot of rough patches and angst along with times you want to just give up, it is the last loving act you can give to a loved one. I won't lie, it consumes your heart and soul, but leaving him in the hands of strangers in an ICU with cold beeping machines or in a nursing home with other strangers just doesn't feel quite right.

Home Hospice cares for the dying patient as well as trying to support the family and Caregiver[s] as much as possible.

And yes, there were several times I have wanted to throw up my hands and quit. But I cannot do that to my soulmate.

I wouldn't trade this past summer for the world. From March when he was released from the hospital until now, we've had a 'good' ride.

 

Midnights...

The night terrors visited Thursday night around 11pm. He awoke with a start and became extremely agitated asking me what that noise was. 

I turned on all the lights as he asked and listened.

Nothing.

But he heard it. And said: Something's trying to kill me. [It came out a bit garbled, but he repeated it several times sometimes missing parts of words]

He tried sitting up and couldn't. But there was no stopping him. It was awkward, but I got him up sitting safely. He took off his 02 cannula and claimed it was upside down. It took forever to have him see that the cannula was indeed okay to use.

Everything was wrong and he kept grabbing his O2 hose and tried to pull out his catheter.

Since I recognized it as hallucinating and agitation, I offered his meds to calm him down. He actually raised his voice and told me to go away. He seemed very angry.

Having lived with his severe PTSD for many years I wasn't too fazed. At least not right now. The anger hurt but I understood he was just lashing out and I was in the room to receive it.

I made sure he was safe and went into the kitchen to prep some liquid meds. 

I was quiet and calmly asked him to open up his mouth.

He did and I sat next to him and waited.

After 25 minutes passed, I could gave him  his nebulizer treatment. More silent waiting while his hands adjusted invisible things. Those hands were busy. It actually looked as if he were talking with someone and expressing the conversation points as he used to all the time.

He then reached up and brushed his facial hair as if he had a long beard. The 02 line seemed to be a lifeline for him to hold. He held it in both hands as he looked across dim lit the room.

For a while he seemed lost. With the meds and the NEB, he was back to breathing in an acceptable manner. But his mind was in and out of places only he could see. Some of this is natural to his state of being right now and some of it is aggravated by the fact he can't swallow his meds well anymore.

Because his psych meds were stopped cold, it can lead to a number of difficulties that we have to try to deal with. 

Why? In such a forlorn voice.

Oh did you? That is flat over...look.

Garbled, stop, isn't...the language turned into several grunts and many moans.

He sat up for nearly an hour with me sitting next to him. He fell asleep and woke, shut his eyes and swayed, then finally I asked quietly, "Do you want to lay down?"

Yes

Off and on for the next hour he made sounds and some words before falling back to sleep.

I fell back to sleep on the loveseat around 2AM. It seemed we'd made through one more big event.

This may seem odd, but I find this part of his 'journey' somewhat interesting. 

Yes, it feels a bit scary too. I'm that person that studies it. I suppose it keeps me from freaking out if I look at what is going on with an analytical eye.

Friday morning was startling. Rich had pulled his cannula off while I was asleep and when I checked him his 02 was a mere 66. I put it on and he pulled it off again a while later. Another hurdle overcome as I changed cannulas and got a more comfortable one for him.

Steve and his daughter showed up early and Steve sat with Rich so I could sit and enjoy some coffee and chat with Steve's daughter [she is the one who got our horse '15' now ... named Honey]. Gina told me she had to come with her dad as he was pretty upset and anxious regarding his Fishing Buddy.

I'm happy to give Steve all the time in the world with Rich. He seems to know exactly how to be quiet or to chat a bit. Rich is calm when Steve is there. 

Nurse Jason has been here every day and each day we construct a new plan to deal with his psychosis, anxiety, and end of life issues. This morning was pretty intense, but I'll talk about that later. Aside from being tired, I am doing what folks would say pretty okay.

Friends make the world go around...especially when they bring me something to eat.

Music and Birdsong

So again today too many folks showed up. Tammy the respite worker was scheduled and she talked briefly with Rich to find out if he wanted Peanut butter cookies or a cooked lunch.

He couldn't exactly tell her what she wanted, he got stuck with the words which happened often after his stroke but was really exaggerated now. We asked Peanut Butter and he nodded.

She started to get things ready and we chatted while I cleaned up some dishes and gave her an idea of what was supposed to happen. Hubby's daughter and her husband showed up at the same time as life long friend Steve.

I'd already pulled the mattress off the double bed I'd been using and taken everything apart and tossed stuff in the wash. I'd washed the windows in the corner of the living room so he'd have nice clean windows to watch the outside world with. I moved bird feeders close in so the activity would be evident even if he wasn't watching for it.

We had decided to move his hospital bed to the best view in the house and he didn't want it at first. But the little bedroom is pretty boring. During the move of 'stuff' he got pretty agitated. I'd told everyone they had to stay outside while the nurse and I got things moved around.

Friend Steve took Charlie for a ride in his car [Charlie was over the moon]. The other two waited on the porch. [It was cold!]

Tammy understood what was going on and stayed out of everyone's hair. 

I'll make it short. Once everyone was gone, hubby settled down and took a good nap. 

He is moving into Terminal Delirium language. Fidgeting [Terminal Restlessness], making motions, and stopping mid speech. It is much worse in the afternoon to evening. 

Terminal Delirium is a physiological sign that the body and the mind are slowly shutting down. He can be perfectly lucid one moment and nonsensical the next. 

I've learned to just seem to understand and let it go. I never ask him to explain or elaborate. It passes.

I have noticed though that with his buddy Steve he is more animated and laughs a lot. Steve just waits when hubby shuts his eyes and when Rich is ready, he chats again telling him stories. 

He was so happy to see his daughter but she kept asking too many questions. Finally he just waved his hands at her to go away. Questions are bothersome, soft chatting is better. 

Too many folks at once irritate him. My bad--> Duh on my part.

He may be happy to say hello for a second or two, but two people is too many. This is something the Chaplain and one of the other nurses had warned us of. 

One of the Home Health Aides suggested that I play some music that he likes softly in the background.

I did that this afternoon and watched as hubby tapped his hands against his legs in time to some of the songs. I'm beginning to recognize the beat of the music that effects him. 

Things I am learning:

Music is a universal language.

All at once [visitors] is bad and distressing.

Quiet is good. 

Bird watching is good.

Last note. He refused the peanut butter cookies and most anything I'm offering to eat now.

Shhhh...let's listen to the music and the bird song.

It's enough for me today.

 

Progressing

I'm there, I finally made it.

Made it where?

He smiles at me and flutters one hand as if directing someone. It is 3AM, what a magical time.

Later, he stares intently at the the bedroom wall.

Hey. The chair moved. Who moved it. It moved.

I look and the chair is there where I left it earlier. I just nod because no answer is needed, he is just talking about random things. 

Charlie slips into the room quietly and asks to get up on the bed. He lays next to Rich's feet quietly for hours. 

Don't lose the keys.

Ok.

Later.

Wait until things hard up. He nods. I nod back.

We attempt some coffee and some cereal. Then he insists on getting up and I tell him he can't and explain why. It crashes his 02 and rockets his heart rate.

He thinks a while then says.

When CAN I get out of bed?

I'm not sure how to answer this as we've been through it for the past 3 days. He starts to try and get up and I have to tell him.

Not now.

Then when? He gives me a hard stare. When can I go fishing again. What day is it? I want to go fishing tomorrow. When can I go fishing again?

I'm not one to lie so I say.  You may not be able to.

I'm stuck in bed now?

Yes.

Then I may as well be dead. 

I don't know what to say.

Am I dying?

Yes.

Good, then lets get it over with.

We'd had this conversation yesterday about Hospice about dying and how they were making sure this part was not painful. I'd asked him if he was okay with it. He was. I asked if he was afraid. He wasn't. We talked about it for a while because no one else was around to bother us. 

Things changed rapidly from Monday to Tuesday morning. The signs were there. The vacant stares and looks, the non-responses. Yet guess what, we still could eat ice cream or a few bites of it for breakfast. Because. 

Why not? Because ice cream is his weakness. He loves his sweets.

Steve spent the most time with him after the nurse and social worker left. The two old coots chatted and laughed and life seemed almost as if it were normal if Rich hadn't been stuck in a hospital bed. Since the guys loved hunting together for years, Steve brought Rich an unusual pistol with a 16 inch barrel for him to admire.

By Tuesday night he didn't know who I was at times but still let me give him his liquid meds. Lucidity comes and goes. Sometimes he knows who I am and other times not. At least he still lets me attend him.

Alli who has seen him twice a week since he started Hospice came out 'off duty' last night to see Rich and to just give me some company and support. Some people go way above and beyond.

The progression continues with something like a wave of up and down. Good, a little less good, a little more good, a little less good, and eventually ending.

His daughter did show up late in the afternoon with a chiffon cake which made Rich bright eyed. She handed me a piece that she cut and put on a plate and I told her to take it and help her dad eat it. She gave me a side look when I handed the plate back to her. 

Rich loved it and made a right mess of things while eating it. I handed his daughter some paper towels while I went back to washing dishes and folding clothes.

Her husband sat at the kitchen table most of the day at the kitchen table and stared at his phone. His daughter joined him while I tended to things. They had to leave early so they could go out to eat. [meow...never asked if I'd like something...😼]

I'm pretty sure I had some sort of expectations of them other than them parking themselves in my kitchen for the day.

So it goes. Family Dynamics can be strange at times.

The Progression continues. It could be a couple of days or a couple of hours. But I am here and that is what is important to me.