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.

 

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.