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.

Hospice is ....

You know, no one really wants to talk about going into Hospice. It almost seems like a dirty word. When I mention my husband is in Hospice I get that look. 

The look in someone's eyes that conveys sadness and curiosity at the same time. People who know me well don't do that, but a casual friend in the store may ask about hubby and when I tell them...I feel the temperature change in the air between us. And the look.

And then they don't know what to say. They do say the social polite thing.

"I'm so sorry." 

Then I freak them out even more and reply. "It's okay. He is happier now than he has been in 10 years."

Their eyes say --You must be smoking weed or something! 

Maybe I am supposed to be sobbing and tearful each time I talk to someone about it. But that would freak them out more. 

The truth is. We as a society do not talk about end of life. It is a tabu subject. There is an end for all of us and I understand that. It does not in any way make it any easier to loose someone.

If I mention this to someone who has experienced going through the end of life with Home Hospice most of the experiences are recalled as bittersweet but not horrible. Home Hospice is different than say Hospital or Nursing Home Hospice. 

It is face to face. One on one.

It can be frustrating. It can be funny. It can have moments of joy and deep sorrow. Worry, anger, sadness, and even wanting to quit are all things that run through the Caregivers mind. 

I've even thought 'Just get on with it already' when I've had a few days of little sleep and too much to do. Then the guilt with a capitol G hits me. Jeeze, did I just think that? How awful am I?

At first I was slightly annoyed by all the visits per week from Hospice. Now I look forward to them as they break up our monotony of daily Caregiving. They understand where the both of us are at mentally and physically. The social worker doesn't just care how Rich is doing. The social worker and the Chaplain are concerned with how WE are doing.

Sometimes it is just friendly visit and we chat about the things that are important to us. Other times the questions are more pertinent but not uncomfortable.

The nurses and workers come to our home. I am not trying to cart a wheelchair and endless supplies of oxygen to doctor visits an hour away. I can have his meds delivered by courier or pick them up at the local pharmacy [which I do].

In fact the pharmacy folks know me be now and greet me like a good friend. No sorrow in their eyes. Lots of smiles when they check me out.

Thursday afternoon hubby felt awful, I could hear his wheezing from another room. He had me call the Hospice Hot Line. I tried his regular nurse, but his phone was off [he was not on duty]. I was transferred to nurse Ashely who decided to come from her current patient an hour away...to evaluate Rich.

She came and evaluated him and spoke with the attending doctor. Med changes were given for a possible bronchial infection. Or the other reason he was feeling so poorly was that it was a progression of his COPD [worsening]. So we adjusted.

The next morning I got a text from Jason, his regular nurse that wanted to know how Rich was doing. He apologized for not having his work phone on. Rich was doing a bit better. Then Jason gave me his personal phone number. I said I never wanted to bother him on his day off.

His text back was pretty amazing. "Val, we've been friends for years, I want you to call me/text me anytime you need me."

Did I say that I've been friends with Jason and his wife for 7 years? As luck would have it, we were assigned a person we knew as a Hospice nurse.

So what is my insight right now?

Rich is living with a life ending disease and as he deteriorates slowly, he is enjoying his life by not rushing from one doctor appointment to another. He is getting people visiting him. Mostly it is the Hospice Staff, but they have become so important to him.

His good buddy Steve calls or visits often. Our granddaughter Ariel has come 3 times this year to see her Grandpa. 

A good gym friend of mine came out yesterday just to visit and drop off some potatoes so I didn't have to run to a store and get them for the supper I'd planned.

We sat on the porch and she told me about her granddaughter and how her own daughter was a 24/7 caregiver and how she has been for 17 years for Spinal Muscular Atrophy. It puts a different perspective on what I am doing. 

Her daughter and granddaughter have to be incredible people. Just saying.

We've been involved with Hospice now since the beginning of March. It was an adjustment for us. But I have to say that the years with Palliative Care [not Hospice but a great medical program] and now time with Hospice have given us a better journey through a life ending disease. I only wish we'd have known about this for my Father in Law and my Mother in Law.

I'm glad we didn't wait too long to get in the program. It has made a world of difference to my husband and I. We feel more connected with what is going on with his health and our own well being. 

[Except for those days -- which are many -- that I feel overwhelmed]

Today. I baked a cake for him. The smile was priceless.