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.

 

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.

Preconceived notions true angels...

I was pleased when his daughter called to 'see' how dad was doing. I gave her the run down and said I was a bit swamped still with catching up with spending the last week in hospital with her dad and processing all of the changes with Hospice Care.

I told her that I had an aide coming out today to help sponge bathe her dad. She commented in a very odd way that she was happy about that and looked forward to him being able to do his showers and toilet things all on his own again.

What part of me doing most of that work for the past 4 years has evaded her?

She thought is that since he was released, he is OK. Meaning healed? Meaning all better? Perhaps. Cured. 

He was released because he wanted to go home and didn't care if he got better. He just wanted to be home with with Charlie, the birds, and his mules.

Today was another flurry of Hospice help. Rich got a 'bed' bath. Amazing what a home aide can do! He felt so good after that was done but also tired.

Jesse, a social worker, came out and sat with Charlie and I on the couch. We went over the paperwork again along with the slight change in medications.

It sounds like the nurse who will be in charge is visiting tomorrow.

I know it sounds like too much going on in this situation, but this is the way to get things started.

Since nothing much more is needed here right now, I'll probably be getting back to my regular blog for a while. 

"In this life we cannot

do great things.

We can only do

small things with 

great love."

~~~ Mother Teresa

This is how I feel all of the Hospice Team is treating us.

Updated

Monday's Update.

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

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

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

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

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

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

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

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

By 2:30 we had a plan. 

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

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

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

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

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

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

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

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

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

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

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

So now we enter our next phase of life.

It sure has been a Long Journey....

 

Weekends in hospital

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

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

This is pretty good information to know.

Her opinion was 'wait and see'. 

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

That drama has not happened. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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