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.

It's okay not to know...

 

...what to say.

No one really knows the proper words to say when someone we love approaches death. It may be harder if that passing was unexpected.

It's okay to say whatever comes to your mind because that is how we humans work.

At this time, all I am is tired and wishing that I had a huge family that would come and take over for a wee bit. I'm not knocking anyone, just realizing I'm not a super nurse. 

My grandson Dennis stayed with me over the weekend and he was pretty helpful in a couple of instances. The poor young man was shook to his core by what was going on but he helped as asked.

I woke Dennis up much later and took him outside to sit on the porch. We marveled at the stars and the Milky Way. He kept commenting on how many stars he could see. I could hear the awe in his voice even though I couldn't see his face. 

It was a gift I could give him for helping so much.

In the morning, I got him up early so he could see the deer wandering through the meadow in front of the house. Then I had him watch the old oak tree so he could see the magical light in the fog .

Dennis asked me why I wasn't crying. I told him I saved it for later right now I had a very important job to get done.  That did not mean I wasn't sad. I was, but I needed to save it for a bit and hold it all together.

I needed to make sure that his Grandpa had what he wanted and needed. Plus, this was what his Grandfather wanted. 

To be home, not to be surrounded by beeping machines and nurses.

And of course, his silly little dog.

Monday morning while hubby was sleeping, I took Dennis to the  edge of the meadow where he could witness one more amazing thing that Mother Nature did.

Orb Weavers.

Thousands of them.

He was fascinated. Thankfully not fearful of an insect that gets such a bad rap. 

We watched four does walk across the back of our meadow and then went back inside for coffee.

For now, we'll see someone from Hospice each day as his meds will change with each day. There is a lot to keep straight and do for him. 

Dennis learned to appreciate what love and care really meant. He got to appreciate nature too.

As a bonus Steve stopped by to check in. While the nurse was with me, Steve and Dennis talked about fishing and hunting. Rods, Reels, Bait, Rifles, Ammo, and methods. 

I saw Dennis really take to Steve as Dennis's own father has no interest in anything of the sort.

I sort of wondered if Dennis had found a mentor and how ironic that it had been that Rich had been a mentor to Steve's son around the same age.

I nodded to myself that in the midst of chaos of an upcoming death that two people generations apart found a common ground. And I thought. This is good. This was meant to happen like this.

And I am okay with it.

And then

 I woke up early Saturday morning to some coughing. Rich was sitting up and couldn't seem to catch his breath.

I took his 02 reading and nearly fell backwards with shock. How could he still be alive with a reading of 66? I turned up the oxygen concentrator to 3.5L and grabbed the liquid morphine I was directed by the nurses to use in case of what they call Panic Breathing. It is a term which identifies a cycle of rapid shallow breathing.

I administered the morphine under the tongue and gave him his rescue inhaler and set up his nebulizer on the hospital bed table that we had. I was able to bring him up to the mid 80's. 

I called the Hospice hotline and got the NP we'd seen last week. I gave her the low down and she said I'd done exactly what they'd wanted me to do. They also arranged for Tim [Hospice on call nurse] to come and do an evaluation.

Rich tried to eat breakfast. He was able to eat some cereal but gave up as it was too hard for him to eat and breath. He insisted on getting up then and having a cup of coffee in the kitchen. That didn't work out so well and I got him back into his bed after some bathroom mishaps.

He was so apologetic and I just shrugged. Things happen and by now it was just a thing, and nothing to get upset about. 

I'd called Rich's daughter and told her the situation. She responded that they were thinking of coming to visit on Monday. I responded with a curt reply. "Sooner is better." 

I got the "well we have to..."

I said, "Sooner the better. I have to go help your dad now."

I got texts from both grandkids that they were on their way in their own cars. His daughter called back and said she and her hubby would come.

Rich's buddy Steve also was on the way. 

Dennis showed up first and came in to see Grandpa. The poor kid was totally shocked. 

How do I even write this so it makes sense. Rich's daughter and hubby obviously thought that Hospice did not mean really mean....Hospice.

They figured Rich was just going to keep on going on like normal. Probably because Steve and I had been going to extraordinary efforts to take Rich fishing or out once a week as it was his fondest wish.

In Hospice, they encourage you to do the things that you really wish to do. We all pitch in to make Rich's 4 or 5 hours out on Wednesdays enjoyable for him. We do it to see the smiles and hear the laughter. Because we know that time is limited

and do what you wish with the time that is left.

When Tim arrived I sent Dennis outside and while Tim was checking in with the Hospice Doctor I went out to give orders. Rich's daughter and hubby showed up along with Ariel and Steve. I put Steve in charge and told him to keep everyone outside while the nurse and I did the assessment and the catheter.

Steve picked up Charlie and directed traffic and kept the family at bay while I worked with Tim.

The discussion with the doctor revealed that this was either an exacerbation of COPD or it was a progression. Progression = Functional decline. Rich had been in a slow decline but the recent 24 hrs felt like a drop off a cliff.

24 hrs would give us a better idea of what to expect.

After Tim left, I addressed the family in the yard with my rules. "You can visit Rich for 5 minutes or less if he is awake. One person at a time, no more." I'm sure I sounded bossy and stern. And I meant to be.

I had to get to the pharmacy and pick up a med 'stat'. So I left them standing with their mouths agape with Steve and Charlie in charge.

Much later I went to move our little pony to graze in another spot. Ariel walked with me. She commented, "Mom and Dad are so shocked and like, freaked out. They can't believe that Grandpa is this bad off." She huffed and rolled her eyes. 

"I told them that they could have visited him more often and then they would, you know, figure it out. Duh, no surprise for me. I've visited and talked with you. I'm sad to see Grandpa like this, but so glad I came out twice this summer to be with him."

I shrugged. She was right. "Well, they are here now," I sighed. 

His daughter and hubby got a room at the local motel to stay over night. Again I was surprised. They almost never stuck around overnight. Rich's daughter came up to me as they were leaving and said, "Gosh, how are you doing? I'm so worried about you!"

I had a couple of responses I was going to say, but kept my mouth shut. I had things to get done, like empty the catheter, set up a nebulizer, meds, and try to get my guy to eat something.

I have to give it to Dennis. He helped me sit his Grandpa up in bed and patiently sat with him holding him steady while he tried to eat a cookie. Dennis helped me set up the meds and do helped with the nebulizer, then assisted putting his Grandpa back to bed. 

Rich was confused and we had to go slowly. He asked, "Somebody was here and they did something to me? What did they do? Why? I have to pee."  

I explained the catheter again.

"Who was here? I can't...just let me sleep."

I helped him calm down and he fell asleep.

Dennis sat next to me in the kitchen his eyes welled up with tears. "I'm so...I just...I didn't...I don't..." 

I pulled Dennis into my arms and told him it was okay to cry. Real men do have emotions, real men do cry.

So now we wait and see if we are falling off a cliff or having a small progression.

Tonight feels like a Cliff Hanger.

Active Listening...

 I think I will complain.

Or at least talk about it.

Are you a good listener? Can you sit quietly while someone tells you what is going on in their lives? Can you not pipe up with a story of your own to interject? 

Can you really tell when the other person really really...really just needs to get things off their chest?

Can you be an active listener?

It is hard, really quite hard in this day and age. I learned Active Listening or Mindful Listening or whatever the key word is today?

It is listening without interrupting. Listening with attention.

I learned to listen without adding anything to the conversation during the years I was a medical secretary/receptionist. Often a patient would tell me about their aches, their pains, their troubles, and often I'd hear things I'd never want to repeat. [Pre HIPPA] I was a captive audience  as they waited in our waiting room without anyone else around.

I learned about relationships, arguments, problems, and I gave them my full attention as I had nothing else I could do.

I learned to be a good listener. I didn't give an opinion but listened with empathy and knew that I was hearing a story/or version of events that they needed to tell me. I was the captive audience. 

I kept quiet and acknowledged what they said. Once I had a patient tell me that is WHY she came to our office. She knew she could talk to me and Doc and it didn't end up on the gossip lines. Mind you, this was way before Facebook and a lot of social media. I listened and learned, I learned to empathize with our patients [mostly Chiropractic patients -- many had some serious health issues and Doc John was so good with them].

One patient who was most interesting would tell me that he liked coming to see Doc because I was the first secretary that didn't judge him by his looks and clothes. Dang. The guy couldn't read, couldn't write, but if you let him chat...he had the coolest stories to tell. I didn't mind  that he was dressed in rags and often smelled because he didn't have real running water. His conversations were always interesting.

Why the heck am I telling you this?

Well I called my youngest son to give him an update on 'our' situation with Rich. I love my youngest boy even if I can say that he has not found his way to maturity by the age of 43. He is THE Drama Queen [should be all caps!]. 

As soon as I started the update he interrupted with stories of a friend of friend who had some medical issues [I'll spare you all the details]. He told me how Devastated he was by this friend of a friend who was dying. He told me how it effected him and how he was managing it.

He didn't quite get it. All I wanted was for him to listen for a few minutes. He interrupted our conversation several times to talk to someone else. He put me on speaker phone to say hello to whoever was walking past and then explained that he had a friend of someone's boss that he had to take care of  and....

We finally got around to my reason for the call. I stated that I'd like him to come and see Rich while Rich was still able to recognize people and interact with them.

To which he replied, "Well mom, you know I want to be by your side holding your hand ... who else would you want there aside from your favorite son??? ... to hold your hand and console you as...."

I nearly tossed my cellphone across the lawn.

Still. Still.
It was all about him and no one else. He could not hear what I was saying. He couldn't listen or even hear what I was saying. He had a vision of swooping in and ... and what? 

Saving the day?

Nah. I've been with 2 others while they were actively dying and it is a very personal thing. It isn't something you want to share with a group. Hell, I don't want anyone else around when I sit with my soulmate as he finds his way to another place.

I don't need someone with me at that moment. I need it to be just the two of us. 
Period.

Period.

Yet my son kept insisting that HE and HE alone had to be there. I sighed. The conversation did not go according  to how I thought it should.

Rich is a stepdad to my sons and didn't enter their lives until they were in their late teens.

He was sort of an influence in their lives as the kids saw that I was happy with the rascal of a Muleman who taught me to hunt and be a better mule 'whisper-er' or shouter [think Dammit Sunshine!]. He taught me to hunt, to ride better, to learn the language of equine that included donkeys, mules, and horses.

He taught me to become confident and independent.

What I seemed to hear from my youngest was that it was HE who wanted to grieve and to feel cheated that his stepdad was failing.

My oldest boy is more reserved and seems to understand what I need. He will listen on his weekly phone calls. He listens. Period. 

Active Listening is just listening. Be quiet and hear what the other person is saying.

That's all. 

It really is simple.

Listen to others. It just is the best thing to practice.

Just go back to sleep!

 This was one of my favorite books when my boys were very little. Somewhere there may even be a dog eared and chewed up copy in a box.

Both boys would take turns fighting bed time. As a young mom I thought it was funny.

Now? Hubby is tired and he wants to go to bed to nap a lot. However, now it seems if he awakens in the middle of the night to use the commode, he can't or doesn't want to go back to sleep. I am no longer that young mom who could power through fatigue. In fact I want to yell at him those famous words by Mercer Mayer. "Just go to Bed!"

Of course I don't. Some nights I can convince him to lay back down and I'll turn out the lights once more. Some nights/early morning I can't convince him to lay back down. 

He gets dressed. Slowly. There is a lot of rest between each part of getting dressed. He doesn't want my help, so I watch.

More nights with a 3AM or earlier rise has happened this week. There have been more signs of what the Hospice Team calls Progression. The leg and foot edema is getting much worse along with bloody urine. Gross. Who would ever think of discussing that subject? We did see it. It was alarming.

The blood thinners were discontinued. Rich was actually quite happy about that. Less pills to take! And so far this helped control the issue. No tests are done to find out why it happened, but there are reasons for it. If he'd had a UTI, he would have gotten antibiotics so he'd be comfortable. But he had no pain.

We progress onward. Oddly enough, even though he is very tired all of the time, Rich is actually happier now than he has been in years. 

His short term memory is quite bad. I have a new way of answering his repeat questions. I don't tell him that I've already told him the answer more than once. I just answer the question as if it was asked the first time.

I don't care now so much that I may get asked the same question 4 or 5 times a day. One day he won't ask. So there is that.

This past week has been a bit tougher. Three nights of 'short' sleep and long days has been my reward for being a Caregiver. Thank goodness the Chaplain and the NP who came to see us did discuss how to make nights better for Rich ...

and how I could get my sleep too.

He knows that his wakeful nights are hard on me now. He'll sit in his wheelchair and fight the sleepiness and his fatigue. He expressed to the Chaplain that he was afraid if he took naps during the day, he'd keep me awake at night. 

What a conundrum. His shortness of breath makes him forgetful and fatigued. But he is afraid of waking up and keeping me awake.

Except when he forgets and nothing matters but getting up for some reason.

~~ Again, I've not written this to complain or ask for folks to feel sorry for me. I want others to know that they are not alone when giving care to a person in Hospice at home. I feel lucky enough to provide the care. 

Some days...

Every journey is one of learning and exploring. Some journeys we don't want to take and don't wish to explore.

Reactions to meds, swollen legs and feet, insomnia, crabbiness, and forgetfulness are all things to be dealt with daily. This is our second bout with profound edema in the legs and all the way up to the thighs. 

Someone hates the meds for edema and complains loudly. 

I wasn't prepared for the aged toddler to become so frustrating. 

You need to elevate your feet.

No. I don't want to. My feet hurt.

I know, nurse Jason said you needed to elevate your feet, I can help you do that on the couch or on your hospital bed.

I don't want to.

You need to eat a banana a day when on this medication as it takes potassium out of your system.

No. I don't want to. Put my compression stockings on.

Sorry I can't, your legs are too swollen for that right now. They won't fit.

Crossed arms and a look. Then.

Can you get me some cookies? 
or
Make me some popcorn...I'm hungry. I want a snack.

You just ate breakfast.

I know, but I want something.

The lights go on in the middle of the night and he sits on the edge of the bed staring at the wall. 

I get up and ask what he needs.

Nothing.

Why are you up and sitting on the bed?

I don't know.

Why don't you lay back down and get those legs up?

I can't.

I roll my eyes so he can't see and sigh. Then I say. 

Please?

I can't.

Why not?

Cuz I can't.

And that is where we leave it a 2am. I start to explain why he needs to have his feet up and why the edema is making it hard for him to breath.

I get a dirty look.

He lays down for a while and then gets up again turning on the light. 

Come and put my socks on I want to get dressed and have coffee and breakfast.

I check my cell phone. 3:30AM, and I sigh. 

This is part of the Caregiving that no one tells you about and that your family doesn't want to know about.  These are experiences that no one can imagine ever happening to them. I didn't. I thought I was a noble person taking this job on. And it IS a job.

He doesn't understand that his lack of oxygen is causing his confusion and his poor judgement.

On the days he is doing well, he can be with it and things feel almost normal. On the bad days, nothing he does makes sense.

Nothing I can do for him pleases him either. 

Yet I know that he is a presence that I will miss when he is gone. I use curse words in my head at 3:30 in the morning. My temperament is not improved with lack of sleep either. 

I have a huge list of to do's to keep up our place, to feed us, to house us, to care for the animals, pay the bills, and make the calls. I get angry...

The Toddler is only interested in himself tonight. 

My frustration takes over. I am tired, I am irritable, I am short tempered.

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

Note: The days that are like this IS not an everyday occurrence. These are days when he suffers lack of sleep and a lot of aches and discomfort.

When I first wrote this we had just come of from 48 hours of poor sleep...meaning less that 4 hours of sleep for two nights in a row. Rich's swollen feet and legs started aching badly and the more he tried to get comfortable the less comfortable he was.

He didn't want me to call the nurse hotline, but....

I called Hospice at 5AM and they sent a nurse out. We devised a plan and had to use a Lorazepam to calm his frantic breathing caused by lack of sleep and his achiness due to his edema and frustration.

When you combine lack of sleep, dementia, edema, copd, confusion, medication side effects that cause lack of sleep and confusion ....
you get a mixed bag of problems that are interconnected.

This morning at 6:30 I had to wake hubby up so he could take his morning meds on time. The elevation of his legs while sleeping for 10 hours greatly reduced the swelling. He is calm, he is breathing better, and is in a much better place.

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

I'm writing this to anyone who will go through Hospice Care with their loved one. Some days you want to pull out your hair and scream from rooftops. Other days, things go quite normally.

But just like our regular everyday lives. We need to be prepared for all the twists and turns, up and downs, of life. 

Good days and bad days happen. 

The sun still comes up in the mornings.

Thanks for asking

"Things happen for a reason."

"I know what you are going through."

"How are you doing?" Accompanied with a sigh of sorrow and a look of extreme pity.

"You poor thing." 

People who have not been 'in my situation' don't really 'know how it feels until they themselves go through the experience'.

There are many folks who have gone through this experience. I'm going through stages of grieving for my husband while he is still alive. The grieving started years ago. In a blink of an eye, I went from being a partner in a relationship and being free to do my own thing, to a Caregiver who had to pick up all the responsibilities we used to share. 

For 10 years now, I've watched my husband diminish one small bit at a time. In 2015 I started this blog to track our journey through Stage IV throat cancer. His prognosis was pretty dim at that time. The cancer treatment process did quite a bit of damage physically and mentally. He already had mental health issues previously. But the chemo fog and the weeks of radiation [along with a TIA & anaphylactic reaction to chemo] lessened his quality of life.

The doctors were amazed at his recovery though and told him so. The stroke that followed a year later should have done him in. Twice the neurosurgeon had to go into his brain to remove blood clots. The neurosurgeon told me afterwards that he wasn't sure how much damage had been done.

Four days later, he was home. I quit work to care for him and take him to therapy 3 times a week to learn to speak again and work on his thought process that had been messed up. Again, everyone was amazed that he came through this event so well. 

Granted, he could still walk, talk [sometimes backwards -- aphasia] and help a bit with chores. But his interest in most everything stopped. He couldn't comprehend reading or browsing the internet to read about hunting, hound dogs, and other fun things he used to do. TV programs have to be simple stories, nothing complicated. 

His anger issues from his PTSD were diminished greatly. The VA appointed me as his Fiduciary [think POA of finances]. We had an inspection from the Fiduciary folks at the house and we went through our statements and finances. 

I sold our cattle and our breeding mares along with a few mules that were to be 'in training'. Rich was still able to mow the yard and run the skid steer. He even was able to work his chainsaw a bit in order to help clean up messes.

In another 14 months he woke up one morning complaining of his chest hurting along with extreme and sudden pain just before Christmas.

Once more I followed him from one hospital to another. He was once again put in ICU and the attending doctor was once more very grim. He'd had a Pulmonary Emboli. Blood clots in both lungs preventing him from breathing. The doctors at this hospital said his chances of surviving were minimal. However, he did survive. He was in so much pain afterwards. His capacity for breathing while doing anything had been taken away.

At a follow up visit to his Primary Care Physician, he complained about his shortness of breath and the pain. The VA doctor looked at him and told him not to complain, there were others worse off than him.

OH yes, she did!

I immediately requested a transfer to Palliative Care. And there we found the best care ever for someone who has had so many medical 'events'. He could leave Palliative Care at any time. They were concerned for the whole person. Not just the current medical event. His pain was addressed, his mental health was addressed, his comfort was addressed as was mine. He had a Social worker and I received a Social Worker who addressed my needs. She became the go to gal when I needed help, an answer, supplies, assistance in any way.

For the next 7 years our lives were pretty quiet. Rich could still mow with an oxygen tank on the rider. We worked with his severe depression. We--the VA and I. His COPD exacerbations took a bit more from him each time.

He could get around the house safely, he could make his own snacks and cereal. 

Then he had his next event in February. Acute hypoxic respiratory failure. Those terms mean simply: He stopped breathing. Period. 

Rich is still upset that they revived him in the ER. He turned down going on a ventilator and they took him off the BiPap. 

Fast forward now to our 5th month in Hospice. It was the best choice we could have made. There is no way I can get Rich to the multitude of appointments that he would have had to do under regular care. I cannot get him in and out of the car and to the house on my own.

His care team comes here. They keep him at a comfort level and each Hospice worker visits with him too. It isn't like an office visit that feel cold and hurried. 

They don't look at us with pity in their eyes. They have been down this road many times with many patients. But no one talks about it. Why? The thing no one wants to acknowledge is that death is a natural part of living and why not make it easier for those loved ones at the end of their lives.

So here is the funny part. 

Please be amused. I went on Tuesday to meet my friend Pat at the CrossFit gym so I could follow her out to her house.

No one at the gym other than Pat has seen hide nor hair of me since June. At the end of class so many came up to me while I was waiting for Pat to change her shoes.

Those questions bombarded me. The looks of sorry and pity, the questions. I was surrounded by well meaning and fun folks.

So how are you doing? [They dragged out the 'are' with sincerity, anguish, concern, and pity.]

I was awful.

I simply answered, "I'm terrible, thanks for asking."  [credit to Nora McInerny]

Pat covered her mouth from her giggle and looked away as the person in front of me stood shocked and speechless.

But I was being honest.  I was not going to answer, "I'm fine, thank you."

Terrible may have been too shocking. Maybe I should have just shrugged. But I didn't get the pity party of looks anymore.

I did have a lady ask if she could talk to me outside of the gym as her life was turning down my same road with her husband. I'm a good listener and sometimes that is all we need.

Now that I could deal with and I gave her my info. I can help others. When this story reaches its end I will do exactly that. I am looking into volunteering for Hospice.

And that is my answer to "How are you doing."

Sometimes I am terrible. Some days I am fine. Some days I just want the world to go away and not be a responsible adult.