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.

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.

 

Just go back to sleep!

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

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

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

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

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

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

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

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

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

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

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

and how I could get my sleep too.

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

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

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

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

Charlie. The dog knows.

There is more than one reason to have a dog.

Charlie.
He has been acting a little different lately. He chooses not to go outside with me to do chores in the morning. He insists on staying in the house near hubby. He insists on getting up into the hospital bed with him during hubby's naps.

Does he like that situation much better than going out and smelling things? Or does he know that his master is not well.

When Charlie was under a year old, my MIL entered a nursing home. Charlie was allowed to go see her on a regular basis. He'd sit on her bed quietly while she petted him. In the hallway as we'd walk in or out residences would ask to pet him. Since he is only 7 inches tall, I'd lift him up so people could pet him.

Charlie would wag his tail furiously and make little soft noises. Sometimes a resident would give Charlie a ride in their wheelchair. Charlie would sit quietly and proudly as if he was a tiny king.

Charlie's nursing home visits stopped with Covid. I asked about going once more and since my MIL was no longer a resident [she died during Covid], they wanted Charlie to be a licensed Canine Good Citizen.

Poor Charlie. Sit, stay, down, are not in his vocabulary. 

Waggy Tails, Grunting with Pleasure, Wiggling, and being absolutely Cute are his strong points. Being silent and snuggling up to people are another.

Charlie now greets the hospice people with Wiggling and Happy Grunting [his Pekinese mom grunts with pleasure].

He will sit on his chair and take in all the conversation between Hospice and hubby.

When hubby gets his sponge bath, Charlie has to sit on the bed and oversee the process. He lays on the end of the bed and watches. Still as a statue.

Lately he is spending more time watching hubby. His every move is followed. Normally Charlie will take his place on the couch or his chair in the eating area and snooze while keeping a sleepy eye on the activity in the house.

Now he follows the wheelchair everywhere. 

I'd say that he is an exceptional Emotional Support Dog. Does he know what he is doing? Probably not. 

I looked up Emotional Support Dog and was surprised at how easy it is to get an animal certified without any special training.   Hmmmm.

That aside. Charlie knows.
He knows that one of his people needs his warm little body next to his and that somehow it makes that person feel better.

Seven years ago I brought home this funky little puppy and my husband said, "Well, what is he good for?" I handed the pup to my husband and he snuggled right in and made himself at home.

Indeed, what is he good for?

Charlie, you do not need a letter or a certification. We now know your purpose. 

And it is appreciated.