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.

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.

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.

Not to be a downer...

 

Finally last night the dam broke in my heart and I had a long long quiet pity party for me. I realized that the house was going to be so empty when he is gone. The concentrator which has been a part of our lives for the past 10 years will be gone and quiet....
I won't get the tapping of the coffee cup in the morning and the question...

"Coffee made yet?" It used to irritate me so much as he'd say that before he'd say Good Morning. 
or "Hey what's for supper? Did you make it yet?" each afternoon. He knew how much that would get me going.

I'd laugh and threaten to hire a real cook. Our tiny house will feel empty after 30 years of the two of us knocking about inside of it.

Then I started thinking of all the paperwork I'd need to do. I mean, why not? These are things one thinks of at 1AM. 

I did decide to start a memory book though. I've taken years of photos of him. Mentally, I started to organize them in my head. To provide a distraction, I put on my headphones and turned on some 'Chill Out Music' to relax me.
So when this song came on unexpectedly .... 

Yeah so I totally lost it...but silently ... with salty tears dripping down my cheeks. 

The first few lines just slayed me...I've heard this song before and I know how it effected me then....

I know it hurts
Its hard to breathe sometimes
These nights are long
You've lost the will to fight...

And we all know how You tube works, they find this song in a play list and the playlist just kept on beating me up with songs of love and loss. But I needed it so I felt it in my heart.

As I listened and let my heart open to the emotions, I mentally started to list what I'd need to put a book together. I started smiling through those tears in the dark. Our memories, how we met, what we did...our crazy chance meeting. The instant knowledge that I'd met my once in a lifetime soulmate.

Handsome, funny, truthful, very OCD, PTSD'd veteran, all male, all full of himself, kind, honest, trustworthy, intense, fierce, difficult, loving man. 

In truth, he was a difficult father and husband in the first years he came back from Vietnam. Demons chased him constantly.  He didn't understand what was happening to him as so many veterans suffered the same unimaginable issues.

Perhaps he wasn't the best dad in the world but he sure tried hard when the grands came along.

There was nothing he wouldn't do for all of his grandkids. He still feels that way.

So now I am concentrating on a project. A photo book. Something that I can look at and remember.

It gives me a sense of direction and distraction right now as I watch his body deteriorate. This too is a process of living. I won't ignore it, I don't want him surrounded by strangers.

He is comfortable even though his body is showing signs of organ failures. He is home with his silly dog and his nutcase wife. His edema is beginning to rage all over his body but he is concentrating on the things he loves and holds dearly. He is not afraid, he is not in much pain. And he still taps his coffee cup for me and grins like the devilish fun guy he has always been.

And that is good enough for me.

Paradox of Hospice

So our  plan is one of no pain and a lot of comfort and time spent together. 

I'm a pragmatic person. When Doris [another Hospice nurse] visited this past week she had some incredible advice and pointers. She has been a Hospice nurse for 30+ years. She is full of cheer which seems odd in her profession. 

Her advice. 
Visitors should be one at a time and only those who actually matter to you. If someone you don't really care for wants to visit...don't be polite, just say no.
If you have things you wish to do, do it if you are able. 

Watch the birds, enjoy your mules. Sit on the porch and drink coffee.

We are going to attempt--- with some help, a last fishing trip for hubby. One of Rich's lifelong friends is going to help us. He will provide the equipment, the car ride and the poles. He will even bait the hook for hubby.

We are getting a hospital bed for hubby on Tuesday. He will be able to elevate his legs to reduce the edema he is suffering from. Since he is unable to walk much fluids do build up in his legs. 
I've become and expert at putting his compression socks on.

One of the most important things we did this week was go to the cemetery where his folks and other family members are buried. It was quite the production just to get him in the Subaru for the ride, but we did it...one slow step at a time.

He wasn't able to get out at the cemetery to visit his parents' grave, but I was able to pull up close to the fence so he could watch me take care of the flowers.

He got confused as he said "No one has a flag for me out there."

I pointed out that he was still alive and he shrugged and said, "Oh yeah, I guess I am."

I put out the flowers and as is tradition, put a pouch of Grizzly Wintergreen Tobacco in the ground in his father's spot. 

Me: Do you miss your dad?
Him: Yes. A lot, every day. He was my best friend. OH no! I forgot to bring him chew!"
Me: I brought some and took care of it.
Him [he teared up]: Thanks sweetie. I just miss him so much.

We sat for a while and I pulled the car up where he could see his Great grandparents and Grandparents stones. He was pretty quiet. 
The cemetery is located on a road called Old Buzzard Lane. To get to the cemetery one has to drive through a dairy farm with cattle and round bales on both sides of the road. We waved to the farmer.

Rich had me drive the backroads to the cemetery and then gave me directions [I pretend I don't know the way so he can guide me] to drive another way home. He pointed out the different farms members of his family had on the way. 

So what is the Paradox? Before Rich entered Hospice we rarely had any visitors. Once the 'word' got around we started getting calls for visits. 

We pick and choose and set the rules. Only those who are very important visit. The looky-loos are turned away. 

Good neighbors text and drop by for a wee bit. The visits are nice. We set most visits at about an hour. But Rich enjoys them so much.

His Home Aide brings so much joy when she comes. His face lights up when she arrives. 

This week his regular nurse drove his classic muscle car on his rounds. It was a 1970's Chevy Nova SS which sparkled and growled.  Rich was beside himself. He offered to trade off our car for the Nova. 

So does this Paradox work? Rich is happier now that he is in Hospice than he has been in 10 years. He smiles more, chats more [still has aphasia which makes conversations more fun] and seems to have more light in his eyes when people come.

Hospice is often mistaken for a horrible time of life for many and eventually it is as the patient is expected to expire. 

However, being pain-free and comfortable and ... the extra care from the Social worker, Chaplain, Nurses, and Home Aides has improved his quality of life for the time he is still here.

No, it isn't a cake walk with love bubbles floating about in the air, but we are making our time together count as we have throughout our marriage and time together.

Oddly enough, his daughter has visited once in April. She called once this month to talk to him. I don't quite know how to take it. Rich just says that she is "Too Busy". I guess I'll take that as an answer. 

Anticipatory Grief part II

 I wrote a blog about Anticipatory Grief on March 2, last year. I'd never really heard about it until there was a remote class via the VA Caregiver Social Workers last year.

It wasn't exactly a 'happy' post, more of a reflection of what I thought I knew and understood about the term Anticipatory Grief. I'm glad I did the class. I also thought I'd had it all figured out. 

Insert a big laugh right here. I like to think I can handle all things tossed at me. 

Well, things have changed radically. I actually have adapted I think fairly well. I knew I could possibly enter a phase where I had to do most everything for my husband. The damage to his memory and thinking skills are now more evident from his resp. failure. 

Shay, who is a young single mom and our respite gal said she and Rich had good conversations and that he seems to be okay with what is happening to him. He seems settled and at peace with it.

She then asked me how did I feel?

I said I was good with it. After all, Rich and I set up our Estate plans and Living Wills in 2012 and we had these discussions about aging and illnesses before he had cancer in 2015. The doctors will argue that his cancer treatment gave him at least 10 more years of life.

What didn't happen is good of quality of life. Doctors would point out that he was still 'here' and that he was able to visit with family. The cascade of issues that followed in the next two years took everything he lived for away from him.

Living day to day became a struggle combined with Major Depressive Disorder. His PCP told him not to feel sorry for himself as there were others worse off than he was.

[Yes, she said that and I immediately asked to be transferred out of her care.]

That is when we transferred to Palliative Care. His issues were dealt with and no shaming for being depressed or feeling hopeless. No intrusive exams. Pain management and mental health support were vital to him.

We stayed with the Palliative Care Team for 6 years.  

So back to the question. How was I dealing with the fact that we were now in Hospice Care. My mantra was 'I'm good with it.'

I understand the implications. I understand that my soul mate is dying. I also wonder what happens after. 

Wait.
I lose half of me in a way. We've been partners for 30 years. We've been part of each others lives for that long. For the past 10 I've been his 'Care Giver'. For the past 30 my life has been helping him negotiate his daily life which included many times in and out Mental Health Admissions. 

I was once asked why I'd hang around someone like him. My reply was pretty simple. He is an honest man, he loves intensely, he has a true heart, and he doesn't play games with people's emotions. And. He is my partner.

So.

While driving to town to get some groceries two days ago, a song came on the radio.  I don't recall what the song was. But I did have to find a spot to pull over. I parked on a side road that overlooked a trout stream.

It hit me.
Yes, I am prepared. Maybe. I am prepared for what happens and the process of his dying. 

Maybe I am not prepared for the 'afterwards'. 

Updated

Monday's Update.

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

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

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

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

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

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

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

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

By 2:30 we had a plan. 

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

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

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

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

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

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

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

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

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

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

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

So now we enter our next phase of life.

It sure has been a Long Journey....