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.

A day in his life, what Quality?

My once very vibrant, contentious, fun, frustrating, funny, and bull headed husband is slowly fading away from me.

This year though, his mood is better. It all has to do with the constant photos we receive from my oldest son of our newest little grand daughter. Some mornings, Rich taps my phone to watch 20 second videos of Rory just doing normal baby things. He loves to hear her voice and her cooing as well as her antics.

He had another TIA which concerned the doctors who wanted to order a battery of tests and a slew of medications.

We reminded them that he is in Palliative Care. He wants no new tests. He wants only to be left alone by the medical people and as remain comfortable as he can be.

He commented that he'd be happy enough if he just died in his sleep.

The attending ED doctor looked at him and then me and said, "But maybe you don't really mean that. I mean, think of your wife. This may be painful for her to hear."

I pipped up and replied, "He has no quality of life doc, this is something we have discussed and thought about. No one is prepared for their life to end. But then again, he doesn't have to fight through all of his illnesses and put on a brave face for me. I am with him 24 hrs a day and see his continuous struggles. You don't. Believe me, it is okay and not painful."

A nurse came in and commented that he had gained weight and perhaps he should look into losing some weight and eating healthier... and maybe doing some exercise???

I walked out with the nurse and asked if she'd looked at his chart. I gave her the stink eye and said her comment was appreciated, but totally uncalled for. I'm sure she meant well on her 'high' horse. But I kindly took her off that and dumped her on the ground as easily as possible. Her comments, I told her would resonate better with a patient who was young and in good health, but perhaps not someone in end stage COPD.

As good as doctors, nurses, and all medical staff are, some have never lived around the clock with a person who has lost their previous lives. 

In fact not many people really REALLY know what a spouse/sister/Aunt/daughter/son Caregiver really go through at all.

It is something so many do silently and without much complaint. 

~~~~~~

My husband's day starts when he gets up at whatever time. It can be 5 am or 9 am, there is no rhyme or reason.

He has 2.5 cups of coffee...exactly. He can make his own instant oatmeal some days, some days not. I have to carry his coffee for him or he spills it because his hands shake so badly. His coffee sits on an old hand towel to catch what he spills as he sips it.
Sometimes I have to feed him. Again, the shakes. And oh the embarrassment and self loathing that follows that!

I fill bird feeders, hummingbird feeders and arrange them each morning so he can watch out the window and try to tell me which birds he sees. He has aphasia so the bird names often come out oddly, but I know what he is trying to say. He's had word finding difficulty since 2017. I'm used to it.

He can be delightful and funny still. He also gets quiet and it seems that I lose him to another world where he is shut in his mind. 

In two hours after breakfast on the dot, he is ready for the morning nap. That lasts until noon. He gives me his order for lunch. I make it. We eat together and chat about whatever. I put Lego minifigs on the table and play with them. He laughs.

At 1pm sharp, it is time for a nap unless it is dry enough for me to bring him the riding mower. If he can mow, he is happy. I help him onto the mower and situate his oxygen. He takes off wearing his cowboy hat and shades. 

I think it makes him feel free and worthy to do the big yard. He is mobile and he is good at it. Sometimes he bumps into things. 

When he comes up to the porch on the mower, his smile is huge. I help him off and it is time for a drink of water and a ... nap.

On days he can't mow because of the weather, he sits at the table and watches the birds. When that bores him he lays down again.

His schedule revolves around routine. After the 1pm nap which is short, he watches mysteries on the TV....until it is nap time again.

By then we are close to supper time and he asks me what we are having for supper. [He can never recall what I tell him about supper or other things] 

*I forgot* is his new mantra. And it is true. He talked and listened at length about things his daughter was telling him on the phone on Father's Day. His end of the conversation was ... "Oh" "Yes" "Hmmm"

When I asked about what they discussed over our supper, he looked up and shrugged. 

"I can't remember."

Long conversations on the phone are good. He likes to listen. But he cannot recall what the topics were. He can rarely recall what I planned for a meal after I've told him. Some days he can't navigate the TV. 

He has developed a rather alarming cough which is part of his COPD. He has more and more trouble breathing and his intercostal muscles surrounding his ribs hurt from coughing. If he goes without O2, when waking up and changing from his CPAP to his concentrator, his O2 levels drop below 80%.

I feel guilty, because some days I wish that his suffering would end. He once said that if he was an old hound dog, his owners would never let him suffer this way.

He wonders often why humans have to suffer when pets didn't.

What next?

It's no secret that COPD is a taker and a taker. Pictured is hubby taking his afternoon Nebulizer. He'd be angry at me for grabbing a shot through the stairs, but it is what it is.

COPD is pretty unforgiving. It takes everything from a person  and if there are other health issues, it makes it all the harder. [Generally there are always co-health issues to go along with severe COPD]

Most mornings he gets up and comes in the kitchen for coffee. I take his 02 readings right away. When he takes his CPAP off and gets dressed his 02 drops to the low 80's. Anything below 92% is dangerous. He has a hard head and won't hook himself up to his concentrator.

Below 92%, your brain starts to malfunction, as well as all of your organs. 

Then...we found a lump in his neck.

They did an ultrasound and then it was recommended that a needle biopsy be done. That needle biopsy turned up 'not enough' cells and samples to make a diagnosis.

Rich was against the ultra sound, I convinced him to do it. He was against the biopsy and he was not happy but did it.

Now the lump has swelled. It causes him no pain or difficulty in swallowing or breathing. But he is not a happy camper. He told me if we'd just left the d...ned thing alone he'd have been happy. 

The doctors recommend a removal of the 'nodule' and then send it for testing and he emphatically said....

NO.

I can't blame him, he has gone through so much in the past 8 years that it seems cruel to put him through anything more. 

In fact he is becoming more at peace with his future. Even as far as to make sure that I have what I need when he is no longer here. Odd to be making plans like that, but we are at that point. We actually set things up 12 years ago. That was 4 years before he was diagnosed with throat cancer.

The nodule could be benign but he doesn't even want to address that. 

So we meet each day as normally as we can and I take care of him and everything on the farm. Once he is done with the farm we will move off from it. Oh, I'd love to stay here in these beautiful hills forever but that won't be practical at all.

The fact is, he wants to stay here until he dies and then he wishes me to move on to live in a place where I don't have so much work to do. Our place was remodeled and it IS a solid low maintenance home. However, the remote location will make things like getting groceries, medical care, and help much harder as I age.

We've decided that I should move to an area where I have access to public transit and the ability to have groceries delivered if I needed that done. Location, location, location. Since I [we] have no relatives living in this area, I will move closer to my son. 

One of my new and younger neighbors has voiced her desire for me to stay. She said she would watch over me. In truth, I am not sure I'd want her to. She is now learning to deal with her own parents who are aging. She can't care for her parents, work full time, and raise her children...and then take on someone like me.

The plain truth of it all is that I am tired of being the adult all of the time. I once asked his daughter to give me relief. Her answer was no because she had to make sure her husband had his lunch packed for him daily.

Her children come to visit more often than she does. My grand daughter asked me last weekend if I didn't think it would be smart to leave the farm after Grandpa was gone. I would be too alone out here.

My son had voiced the very same thing. So had my other grand daughter who had come to visit a few weeks ago. 

What next? We actually have set a plan in motion. Well, at least an option.

Hubby and I agree, when he is gone, I will move back to the town where my oldest son lives. 

This is a Long Journey

In 2015 Rich went through lengthly cancer treatment for throat cancer, Stage IV. 

In 2017 Rich had a stroke, in 2018 he suffered from a PE. A double Pulmonary Emboli. Each of these medical instances could have ended his life.
He also has COPD. According to the medical notes on file, it is Stage 4.

The doctors think he is amazing as he has really beaten the medical odds. 
He also has MDD which is treatment resistant. [Major Depressive Disorder]

Rich can speak fairly well and sometimes he does lose what he wanted to say or the words evade him. We've been a close couple for years so generally I understand what he wants to say, but let him work it out unless he is too frustrated. Then I help him. His memory of things in the recent days evade him too, as well as those memories from just a few years ago.

These things are not really important. NOT to me. What is important to me is quality time together.

Our meeting with Palliative Care this week was very emotional for him. He knows that his COPD is an end game for him and he has always been rather Cavalier about it. Thursday he was not.  His breathing is a struggle for him and it limits his activity.
His MDD is a huge black wall that keeps him from finding any joy in his life -- this he tells his doctor.

Finally and tearfully, he admitted that he'd just like to go to sleep and be dead. He is not suicidal but he sees no point in continuing in a life where he loses memories, struggles to breath, and has no motivation for life. 

Can you imagine how awkward it feels for him when he ... the tough guy... breaks down and cries while on a Video Appointment with his provider? His Palliative Team sat quietly and let Rich gather himself. Of course she asked if there was any thoughts of suicide and he said emphatically NO. 

He is tired. Tired of not being the productive go get 'em guy that used to whip out the chain saw and cut up fallen trees. He is no longer that dude that had never ending strength and energy. He is tired of being tired. Tired of his words not forming and lost thoughts.

We discussed second opinions for his MDD and other more radical treatment. He just asked 'Why?'

This is the time of year that his MDD really kicks in. The days are shorter. The dark is longer, even with a SAD light, his overall mood is darker.

His Palliative Care doctor is adding a low dose of morphine twice a day to his meds. 

We are marching towards the end in a steady fashion. 

While visiting his Community Care Primary Doctor last week, he mentioned the very same thing. Wishing he could just die.

His PCP said she understood but she felt he shouldn't say it in front of his family as it would cause them pain.

I looked at her and sort of shrugged. She is a doctor that works in a clinic and doesn't live with a patient like this day to day. 

His comment is not painful to me at all. It is the truth. I listened to his mother say the same thing while she slowly died from Stage IV kidney disease.

Just let me go. 

In Palliative Care, the doctors want to make him comfortable as his disease progresses. His Palliative Doctor and others would like to see him try some of the newer treatment for his depression. Those treatments would require 3 visits per week at the average of up to 6 hrs per visit at the VA. That would create 12 hour days for us with a 90 mile drive each day. He said NO.

Regular doctors want to 'fix' things, it is in their nature. His PCP was willing to get referrals for all sorts of tests. Rich said no. He didn't care if his heart was giving out. He lifted his bracelet and reminded her that he had a standing DNR order in case of heart failure.

So we wait until next week and see how the morphine goes.

And of course, more Lego building. He seems really fascinated by it and it is an activity, oddly enough, that makes him laugh when I screw up. Last night he even put a few small pieces together.
To me? 

Priceless.