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. 

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....