Music and Birdsong

So again today too many folks showed up. Tammy the respite worker was scheduled and she talked briefly with Rich to find out if he wanted Peanut butter cookies or a cooked lunch.

He couldn't exactly tell her what she wanted, he got stuck with the words which happened often after his stroke but was really exaggerated now. We asked Peanut Butter and he nodded.

She started to get things ready and we chatted while I cleaned up some dishes and gave her an idea of what was supposed to happen. Hubby's daughter and her husband showed up at the same time as life long friend Steve.

I'd already pulled the mattress off the double bed I'd been using and taken everything apart and tossed stuff in the wash. I'd washed the windows in the corner of the living room so he'd have nice clean windows to watch the outside world with. I moved bird feeders close in so the activity would be evident even if he wasn't watching for it.

We had decided to move his hospital bed to the best view in the house and he didn't want it at first. But the little bedroom is pretty boring. During the move of 'stuff' he got pretty agitated. I'd told everyone they had to stay outside while the nurse and I got things moved around.

Friend Steve took Charlie for a ride in his car [Charlie was over the moon]. The other two waited on the porch. [It was cold!]

Tammy understood what was going on and stayed out of everyone's hair. 

I'll make it short. Once everyone was gone, hubby settled down and took a good nap. 

He is moving into Terminal Delirium language. Fidgeting [Terminal Restlessness], making motions, and stopping mid speech. It is much worse in the afternoon to evening. 

Terminal Delirium is a physiological sign that the body and the mind are slowly shutting down. He can be perfectly lucid one moment and nonsensical the next. 

I've learned to just seem to understand and let it go. I never ask him to explain or elaborate. It passes.

I have noticed though that with his buddy Steve he is more animated and laughs a lot. Steve just waits when hubby shuts his eyes and when Rich is ready, he chats again telling him stories. 

He was so happy to see his daughter but she kept asking too many questions. Finally he just waved his hands at her to go away. Questions are bothersome, soft chatting is better. 

Too many folks at once irritate him. My bad--> Duh on my part.

He may be happy to say hello for a second or two, but two people is too many. This is something the Chaplain and one of the other nurses had warned us of. 

One of the Home Health Aides suggested that I play some music that he likes softly in the background.

I did that this afternoon and watched as hubby tapped his hands against his legs in time to some of the songs. I'm beginning to recognize the beat of the music that effects him. 

Things I am learning:

Music is a universal language.

All at once [visitors] is bad and distressing.

Quiet is good. 

Bird watching is good.

Last note. He refused the peanut butter cookies and most anything I'm offering to eat now.

Shhhh...let's listen to the music and the bird song.

It's enough for me today.

 

Progressing

I'm there, I finally made it.

Made it where?

He smiles at me and flutters one hand as if directing someone. It is 3AM, what a magical time.

Later, he stares intently at the the bedroom wall.

Hey. The chair moved. Who moved it. It moved.

I look and the chair is there where I left it earlier. I just nod because no answer is needed, he is just talking about random things. 

Charlie slips into the room quietly and asks to get up on the bed. He lays next to Rich's feet quietly for hours. 

Don't lose the keys.

Ok.

Later.

Wait until things hard up. He nods. I nod back.

We attempt some coffee and some cereal. Then he insists on getting up and I tell him he can't and explain why. It crashes his 02 and rockets his heart rate.

He thinks a while then says.

When CAN I get out of bed?

I'm not sure how to answer this as we've been through it for the past 3 days. He starts to try and get up and I have to tell him.

Not now.

Then when? He gives me a hard stare. When can I go fishing again. What day is it? I want to go fishing tomorrow. When can I go fishing again?

I'm not one to lie so I say.  You may not be able to.

I'm stuck in bed now?

Yes.

Then I may as well be dead. 

I don't know what to say.

Am I dying?

Yes.

Good, then lets get it over with.

We'd had this conversation yesterday about Hospice about dying and how they were making sure this part was not painful. I'd asked him if he was okay with it. He was. I asked if he was afraid. He wasn't. We talked about it for a while because no one else was around to bother us. 

Things changed rapidly from Monday to Tuesday morning. The signs were there. The vacant stares and looks, the non-responses. Yet guess what, we still could eat ice cream or a few bites of it for breakfast. Because. 

Why not? Because ice cream is his weakness. He loves his sweets.

Steve spent the most time with him after the nurse and social worker left. The two old coots chatted and laughed and life seemed almost as if it were normal if Rich hadn't been stuck in a hospital bed. Since the guys loved hunting together for years, Steve brought Rich an unusual pistol with a 16 inch barrel for him to admire.

By Tuesday night he didn't know who I was at times but still let me give him his liquid meds. Lucidity comes and goes. Sometimes he knows who I am and other times not. At least he still lets me attend him.

Alli who has seen him twice a week since he started Hospice came out 'off duty' last night to see Rich and to just give me some company and support. Some people go way above and beyond.

The progression continues with something like a wave of up and down. Good, a little less good, a little more good, a little less good, and eventually ending.

His daughter did show up late in the afternoon with a chiffon cake which made Rich bright eyed. She handed me a piece that she cut and put on a plate and I told her to take it and help her dad eat it. She gave me a side look when I handed the plate back to her. 

Rich loved it and made a right mess of things while eating it. I handed his daughter some paper towels while I went back to washing dishes and folding clothes.

Her husband sat at the kitchen table most of the day at the kitchen table and stared at his phone. His daughter joined him while I tended to things. They had to leave early so they could go out to eat. [meow...never asked if I'd like something...😼]

I'm pretty sure I had some sort of expectations of them other than them parking themselves in my kitchen for the day.

So it goes. Family Dynamics can be strange at times.

The Progression continues. It could be a couple of days or a couple of hours. But I am here and that is what is important to me.

And then

 I woke up early Saturday morning to some coughing. Rich was sitting up and couldn't seem to catch his breath.

I took his 02 reading and nearly fell backwards with shock. How could he still be alive with a reading of 66? I turned up the oxygen concentrator to 3.5L and grabbed the liquid morphine I was directed by the nurses to use in case of what they call Panic Breathing. It is a term which identifies a cycle of rapid shallow breathing.

I administered the morphine under the tongue and gave him his rescue inhaler and set up his nebulizer on the hospital bed table that we had. I was able to bring him up to the mid 80's. 

I called the Hospice hotline and got the NP we'd seen last week. I gave her the low down and she said I'd done exactly what they'd wanted me to do. They also arranged for Tim [Hospice on call nurse] to come and do an evaluation.

Rich tried to eat breakfast. He was able to eat some cereal but gave up as it was too hard for him to eat and breath. He insisted on getting up then and having a cup of coffee in the kitchen. That didn't work out so well and I got him back into his bed after some bathroom mishaps.

He was so apologetic and I just shrugged. Things happen and by now it was just a thing, and nothing to get upset about. 

I'd called Rich's daughter and told her the situation. She responded that they were thinking of coming to visit on Monday. I responded with a curt reply. "Sooner is better." 

I got the "well we have to..."

I said, "Sooner the better. I have to go help your dad now."

I got texts from both grandkids that they were on their way in their own cars. His daughter called back and said she and her hubby would come.

Rich's buddy Steve also was on the way. 

Dennis showed up first and came in to see Grandpa. The poor kid was totally shocked. 

How do I even write this so it makes sense. Rich's daughter and hubby obviously thought that Hospice did not mean really mean....Hospice.

They figured Rich was just going to keep on going on like normal. Probably because Steve and I had been going to extraordinary efforts to take Rich fishing or out once a week as it was his fondest wish.

In Hospice, they encourage you to do the things that you really wish to do. We all pitch in to make Rich's 4 or 5 hours out on Wednesdays enjoyable for him. We do it to see the smiles and hear the laughter. Because we know that time is limited

and do what you wish with the time that is left.

When Tim arrived I sent Dennis outside and while Tim was checking in with the Hospice Doctor I went out to give orders. Rich's daughter and hubby showed up along with Ariel and Steve. I put Steve in charge and told him to keep everyone outside while the nurse and I did the assessment and the catheter.

Steve picked up Charlie and directed traffic and kept the family at bay while I worked with Tim.

The discussion with the doctor revealed that this was either an exacerbation of COPD or it was a progression. Progression = Functional decline. Rich had been in a slow decline but the recent 24 hrs felt like a drop off a cliff.

24 hrs would give us a better idea of what to expect.

After Tim left, I addressed the family in the yard with my rules. "You can visit Rich for 5 minutes or less if he is awake. One person at a time, no more." I'm sure I sounded bossy and stern. And I meant to be.

I had to get to the pharmacy and pick up a med 'stat'. So I left them standing with their mouths agape with Steve and Charlie in charge.

Much later I went to move our little pony to graze in another spot. Ariel walked with me. She commented, "Mom and Dad are so shocked and like, freaked out. They can't believe that Grandpa is this bad off." She huffed and rolled her eyes. 

"I told them that they could have visited him more often and then they would, you know, figure it out. Duh, no surprise for me. I've visited and talked with you. I'm sad to see Grandpa like this, but so glad I came out twice this summer to be with him."

I shrugged. She was right. "Well, they are here now," I sighed. 

His daughter and hubby got a room at the local motel to stay over night. Again I was surprised. They almost never stuck around overnight. Rich's daughter came up to me as they were leaving and said, "Gosh, how are you doing? I'm so worried about you!"

I had a couple of responses I was going to say, but kept my mouth shut. I had things to get done, like empty the catheter, set up a nebulizer, meds, and try to get my guy to eat something.

I have to give it to Dennis. He helped me sit his Grandpa up in bed and patiently sat with him holding him steady while he tried to eat a cookie. Dennis helped me set up the meds and do helped with the nebulizer, then assisted putting his Grandpa back to bed. 

Rich was confused and we had to go slowly. He asked, "Somebody was here and they did something to me? What did they do? Why? I have to pee."  

I explained the catheter again.

"Who was here? I can't...just let me sleep."

I helped him calm down and he fell asleep.

Dennis sat next to me in the kitchen his eyes welled up with tears. "I'm so...I just...I didn't...I don't..." 

I pulled Dennis into my arms and told him it was okay to cry. Real men do have emotions, real men do cry.

So now we wait and see if we are falling off a cliff or having a small progression.

Tonight feels like a Cliff Hanger.

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. 

Some days...

Every journey is one of learning and exploring. Some journeys we don't want to take and don't wish to explore.

Reactions to meds, swollen legs and feet, insomnia, crabbiness, and forgetfulness are all things to be dealt with daily. This is our second bout with profound edema in the legs and all the way up to the thighs. 

Someone hates the meds for edema and complains loudly. 

I wasn't prepared for the aged toddler to become so frustrating. 

You need to elevate your feet.

No. I don't want to. My feet hurt.

I know, nurse Jason said you needed to elevate your feet, I can help you do that on the couch or on your hospital bed.

I don't want to.

You need to eat a banana a day when on this medication as it takes potassium out of your system.

No. I don't want to. Put my compression stockings on.

Sorry I can't, your legs are too swollen for that right now. They won't fit.

Crossed arms and a look. Then.

Can you get me some cookies? 
or
Make me some popcorn...I'm hungry. I want a snack.

You just ate breakfast.

I know, but I want something.

The lights go on in the middle of the night and he sits on the edge of the bed staring at the wall. 

I get up and ask what he needs.

Nothing.

Why are you up and sitting on the bed?

I don't know.

Why don't you lay back down and get those legs up?

I can't.

I roll my eyes so he can't see and sigh. Then I say. 

Please?

I can't.

Why not?

Cuz I can't.

And that is where we leave it a 2am. I start to explain why he needs to have his feet up and why the edema is making it hard for him to breath.

I get a dirty look.

He lays down for a while and then gets up again turning on the light. 

Come and put my socks on I want to get dressed and have coffee and breakfast.

I check my cell phone. 3:30AM, and I sigh. 

This is part of the Caregiving that no one tells you about and that your family doesn't want to know about.  These are experiences that no one can imagine ever happening to them. I didn't. I thought I was a noble person taking this job on. And it IS a job.

He doesn't understand that his lack of oxygen is causing his confusion and his poor judgement.

On the days he is doing well, he can be with it and things feel almost normal. On the bad days, nothing he does makes sense.

Nothing I can do for him pleases him either. 

Yet I know that he is a presence that I will miss when he is gone. I use curse words in my head at 3:30 in the morning. My temperament is not improved with lack of sleep either. 

I have a huge list of to do's to keep up our place, to feed us, to house us, to care for the animals, pay the bills, and make the calls. I get angry...

The Toddler is only interested in himself tonight. 

My frustration takes over. I am tired, I am irritable, I am short tempered.

~~~~~~~~~~~~~~~~~~~~~~~~

Note: The days that are like this IS not an everyday occurrence. These are days when he suffers lack of sleep and a lot of aches and discomfort.

When I first wrote this we had just come of from 48 hours of poor sleep...meaning less that 4 hours of sleep for two nights in a row. Rich's swollen feet and legs started aching badly and the more he tried to get comfortable the less comfortable he was.

He didn't want me to call the nurse hotline, but....

I called Hospice at 5AM and they sent a nurse out. We devised a plan and had to use a Lorazepam to calm his frantic breathing caused by lack of sleep and his achiness due to his edema and frustration.

When you combine lack of sleep, dementia, edema, copd, confusion, medication side effects that cause lack of sleep and confusion ....
you get a mixed bag of problems that are interconnected.

This morning at 6:30 I had to wake hubby up so he could take his morning meds on time. The elevation of his legs while sleeping for 10 hours greatly reduced the swelling. He is calm, he is breathing better, and is in a much better place.

~~~~~~~~~~~~~~~~~~

I'm writing this to anyone who will go through Hospice Care with their loved one. Some days you want to pull out your hair and scream from rooftops. Other days, things go quite normally.

But just like our regular everyday lives. We need to be prepared for all the twists and turns, up and downs, of life. 

Good days and bad days happen. 

The sun still comes up in the mornings.

I figured it out...

 It isn't so much as being cranky and tired, although that will contribute to my current feelings.

I keep a paper journal. You know, one of those spiral notebooks with paper in it. The kind you have to actually pick up a pen and write with.

I use it to write down meandering thoughts and mostly the stuff I won't post anywhere on the internet. I can say what I really want to say about certain things without the danger of anyone being offended.

I can approach politics, religion, medical care, and people without any blow back. Well, I suppose if the journal is looked at after I am dead, somebody somewhere may be offended.

I finally realized the Why as to How I was Feeling.

I have run out of empathy and sympathy.

One friend who visited did nothing but talk about his 'situation' and his hardships and his struggles when he came to visit. In the past I offered empathy and listened intently.

My Respite girl who keeps showing up late has offered up her tales of woe without me asking for them. Normally I am the type of person that will listen and figure out if there is a way I can help or perhaps show verbal support. [Her tales of woe include 'excuses' for how and why she ends up being over an hour late]. 

[My thought on inconsistency is this. If I cannot depend on her to be timely, can I entrust her to care for my husband while I am not home? 

Hubby's thought is this. He is a Vietnam Veteran who fought in ground battles in country. IF a person did not have your back and did not act with responsibility, you could die. Pretty simple and direct views in my opinion.]

Here I had two people who came to 'give' me Respite and comfort [Shay's job is this] ... didn't. Instead they focused on their issues and problems and dumped them on me.

So while rambling and writing...this light bulb came on and suddenly I felt much better. I understood where my darkness was coming from and why it was bothering me. 

Here were two people over a period of days expressing all their challenges. They forgot that they were expressing their challenges, issues, problems, to someone who is caring 24/7 for a person who is dying.

They seem to forget that I am having daily emotional mountains to climb. Every day, I watch my soul mate disappear little by little. I am putting everything in my life on hold for his care. I am giving up the things I love to do and things that give me strength and emotional release for him.

My inner self has built a wall that never shows really how I feel on the outer self. 

[It's complicated--> that is how I grew up--> some day I may explain that ... just say, that is how I survived an abusive childhood with mom.]

I'm done feeling empathy and giving support right at this moment for those who need and crave it at every turn. 

Shay did show up on Tuesday and offered up some incredible 'reasons' for being late. She claims they are not excuses and said sorry sorry sorry about 100 times. 

I was chilled to the bones, I just raised one eyebrow as she dug herself deeper into a hole with me. Could she not read my face? Was she so wrapped up in her issues that she could not see how stiff I became? Did she not feel the cold air wafting off me?

She begged to let her come on the 4th where she could make Holiday pay and I reminded her that my Granddaughter would be here and that it would be family time. She asked to come another day [to make up for her loss of pay]. I stated that I'd see her Tuesday the 8th at 9:30 sharp. 

I'm giving her Tuesday because I have a car appointment that I need to get to. After she is done with her shift ...if she shows, I am calling her company and the VA to let them know that she is not living up to expectations. 

This issue changes the dynamics of trust which is a very big issue for hubby and I.