It must be destiny

This summer I got a text from my good neighbor Olive. It simply said, "I'm having a really bad day, I could use a friend."

The home health aide was with Rich giving him a bath so I asked if I could run up to her house and find out what was the trouble. Olive never sends cryptic messages like that.

I did go there and found out that her husband had just been diagnosed with a rare cancer and surgery was going to happen in 5 days. She was distraught, her husband was not. 

The surgery was called a success and I helped out in their garden when I had respite visiting us. It was for emotional support and I helped keep the littles busy while Olive worked [from home].  When they were too tired, I picked their veggies and strawberries and as a reward, got to keep what I picked.

I'd have done it either way.

When Rich died, they had me over a few times to ease the quietness of our house and I got to enjoy the chaos of little ones climbing furniture and jumping off couches. The squeals and peels of laughter and cries of hurt or imagined hurt filled my heart with joy. We laughed about kids and life. Aiden, who is 4 offered to come and live with me for a bit so I wouldn't be lonely.

I got another message today while returning from a nice long hike with Charlie at Wildcat Mountain State Park. 

I rushed out the door after dropping Charlie off and walked the 1/2 mile to their house. 

That awful C word had re-entered their lives with the latest follow up scan. Another one is planned for later this week to see if IT is in the lungs. Then in a few days there will be a follow up plan.

Olive said she needed to be able to fall apart and be a Hot Mess for a bit. I took her in my arms and told her to let it go. She did and she shook and sobbed for her heart, for her husband, for her children, for the unknown, and for herself.

She talked about what might happen and choices they didn't know they'd have to make.

I said that I think I understood a little of what she was feeling. 

"When Nate told you," I said, "did if feel as if all the blood drained out of your body and fell into a pile on the floor with all of your guts? Did you want to puke, scream, and faint at the same time? Did it feel like a gut punch and you knew you were just going to melt into a puddle on the floor...BUT couldn't?"

"Almost exactly like that." We spent more time holding each other.

I walked outside and stopped to talk to Nate. He was working on a project. He told me that he would have choices once the lung scan had been done on Friday. 

It was possible he'd have to do targeted radiation. It was possible that he'd have to targeted radiation AND chemo. 

He looked at the ground and said radiation is a course of something like 6 weeks in LaCrosse which is an hour away. 5 days a week. Chemo had its own crazy schedule.

I told him that I could help. I would commit to being the transport if they wanted it. Olive works a full time job as he does. I know how hard it is to work and transport for treatments daily. The grind is hard. But I've done it. 

I also offered to take Aiden to school if needed or pick him up. I could be a babysitter for the times they needed to go to appointments without kids.

Olive's mom would have been in my place except she is still recovering from her medical monster of having a cancerous tumor in her leg. 

I told Nate, that I knew the routine. I'd drive him there and back and would not question him during treatment. I told Nate that I'd be his driver and he could rest on the way there and back. I would be happy to be the silent partner.

I told Olive that it would be good for me to feel needed and actually be able to be helpful. 

She argued that they would have to 'pay' me at least for gas. I said all of that was negotiable. For a chosen family that is not genetic, there is no price for the ability to assist.

[Especially in an area I'd been through before. Yes, I know, each person, each cancer is different. But a good support crew is what really matters. I'm all in on that.]

I was going to enroll in a volunteer Hospice program this winter, but it looks like I can be of a more immediate help to a young family.

I don't want to have another C story. Really, I don't. But this is another path that has chosen me. I will follow it with my heart.

Just like the vine I saw today while hiking with Charlie.

The Heart knows when it is needed.

What about now? An afterwards.

One month later.

I still haven't gotten to the Thank You cards. They are sitting there with all the cards written on as to who was there and if there was $$ in the card. I checked the sign in book from the Funeral Home and those who visited didn't always leave an address.

There are so many other things to deal with, that I kept putting this job off.

The paperwork surrounding the death of my husband feels endless. I think I am almost done with all of it and I only have to deal now with Social Security. The guy I talked to at the local office sounded overworked and underappreciated. He kept telling me just to go online and do it. It almost sounded as if he wished I hadn't called and asked for his assistance. I imagine if I had an IT person handy, I would have gone online and done the work.

I don't. It was such a huge mess when I applied for SS, that I am hesitant to even try doing this thing online. I figured I'd have to drive to the office in person and present the paperwork, but the SS dude said we could do it with a phone call appointment and set it up for the end of October. This, after he told me that he needed a hard copy of our wedding certificate. 

That does make sense of course, but in my head I visualized me trying to hand the paperwork to him through the telephone.

Then there are the practical things I forgot about.

Every fall Rich and I would set up our LP heater and make sure it was working properly. As the weather cooled this week, I realized that I never really got an understanding of how the cabin wall heater worked. It has a pilot light somewhere in there and we usually took the covers off so I could clean the fan and the vents.

I took one cover off and carefully cleaned things up. Then I realized that I needed a second person to do the rest of it. I called the company that had fixed this heater two years ago and asked to have the service guy come out and make sure the heater was working properly before turning it on.

To me the wall furnace is a motor - thing. I don't do motor things. 

I'm still going through things. I opened the drawer where Rich kept his 'keepsakes' and discovered all of his things from his army days. I found rings from his days when he was a pool hustler and other bits that surprised me. I wished I'd dug into those items years ago and asked him about them.

In the back of the closet in a black zip bag was two of his dress uniforms. I knew they were there, but he always told me just to leave them alone. I laid them on the spare bed and wondered what all the 'stuff' on the uniforms meant. And then I wondered what the heck I was going to do with them.

I put them back in the bacg and hung them up.

I am slowly sorting clothes. My grandson Dennis has gotten a few of Rich's vintage western shirts that I still had. I often stop and give up to go do something else as it is slightly overwhelming to know that he is not here to use them again.

I've gathered a box of new and gently used pants he had to take to a place called Bethal Buttik. It is a thrift shop and donation place for those who may be in need. So many of his clothes were old and well-worn. His work shirts have holes in them from welding and grease stains from working on equipment. 

I was always patching his shirts or pants until they literally fall apart. That was his motto wear it all the way out. It sure did save on buying new clothes. 

I still get the texts or messages. "How are you doing?"

I am fine most days. The days I'm stuck inside the house are the hardest ones. The house is too quiet. No one is asking for popcorn to be made or what's for supper? No one is tapping his coffee cup on the table with a grin on his face...to ask for more coffee.

He's not here to remind me to feed the birds. He's not here to give me his morning monologue of which birds have come to the feeder. He is not here to ask how my walk was and what I got to see.

Even in his last weeks, I would tell him what I saw and what I thought. He was my sounding board even when he couldn't be.

I have stayed busy. I'd spent days helping friends at a wedding. This past weekend I went with another friend to see her daughter dressed up for Homecoming and enjoyed sitting out on her deck chatting.

Yesterday I took a hike with Charlie. I've been hiking this trail for years. They say grief comes in waves and in strange ways. 

Charlie and I came up through the woods and saw this tree. 

I saw the fungi all over the tree and the bare branches. This tree is a maple and should have still had its leaves. It was barren, with so many of its limbs now on the ground.

This tree was shown to me in 1995 as the grand old tree by Rich on a very special ride we had taken. It was the first of many mule rides with him.

I've always stopped by this tree to recall that first ride on a mule with my future husband. When I reached the tree with Charlie, a huge wave of emotion hit me like a proverbial brick. I sat down on the limb next to the tree and was overcome.

I wanted so much for him to be home when I got there so I could tell him of the tree's final demise. 2025 got to our tree too.

I sometimes wonder if what I am going through will help anyone else. Grief and loss are funny and odd things. It can smack you at the oddest times and places without warning.

I wish there was a guide to take me through this. I know that a true guide doesn't exist. I just have to continue to go with the flow.

It doesn't quite end until...

 ...the Fat Lady Sings.

No pictures. 

But we had the not-funeral funeral-celebration of Life.

It was comforting and really quite nice. One of Rich's hunting buddies from 25 years ago came up to me and held my hand as he re-introduced himself. 

I recalled him and the hunting dog he sold Rich that ended up being my dog. Tom. Tom was the name of the hound. 

Gary held my hand and we relived our hunting days and how much we enjoyed being out at night and listening to the hounds sing their treeing songs. If you ever saw the movie Where the Red Fern Grows, that was us. Hunting and loving our hounds.

The photos that went across the big screen kept a lot of folks entranced. I took so many photos of Rich over the years, what can I say, he was a great model.

Surprising that friends from Missouri came with their kids. I nearly lost it then. A girlfriend that I'd befriended in 6th grade came too. That blew my mind too. I felt the love and friendship with Rich's pals and my friends that came. It was comforting and just what I needed. 

I knew he meant something to a lot of people even if he never thought he did.

Steve, our good pal was there too. He and Dennis [my grandson via my stepdaughter] went off to talk fishing. Steve invited Dennis to go fishing with him next weekend on a special float on the Mississippi. I'm tickled as Rich always wanted to mentor Dennis in the ways of fishing and hunting. Now Steve, who is still reeling from Rich's death has found a way to pass on his knowledge to yet another generation.

How lucky can a grandma get? Dennis will come next Friday evening and then spend time with Steve learning and fishing.

After the cemetery, Ariel and Dennis came to the farm to spend time with me. They didn't travel with their parents so thought they'd come and just hang out  with me. They helped me move some old stuff out of the house and then asked if they could take me to supper. Their treat!

How on earth did I get this lucky to have grandkids that are so thoughtful?

My life going forward, will be held up to events like these and I'll realize that yes, Rich and I had something special and we passed it on to our grands [I hope].

I'll take it, one day at a time and keep recalling all of the joy my husband has given me.

One last note on family. Rich has a daughter and a very self centered sister. One of the relatives who happens to like me very much as I used to take her out to lunch once a month came up and whispered in my ear as she hugged me.

"Watch your back. If they don't get what they want they said there will be War."

Her eyes slid over to my stepdaughter and her husband as she stepped back. 

And dearly beloved, I have no idea what that is supposed to even mean.

The story of Rich's time may have passed but it seems another story will unfold.

Hopefully, those that said that were blowing off steam or have no idea how the laws work for married couples. [Especially married couples who went to attorneys to make sure everything was in place in our estate.] One of the very reasons these days in a blended family to make future plans and write up a rock solid Estate Plan.

War, indeed. Bring it on. Apparently the step thinks I'm sitting on her husband's retirement goldmine and it should be theirs. 

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.