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.

Thanks for asking

"Things happen for a reason."

"I know what you are going through."

"How are you doing?" Accompanied with a sigh of sorrow and a look of extreme pity.

"You poor thing." 

People who have not been 'in my situation' don't really 'know how it feels until they themselves go through the experience'.

There are many folks who have gone through this experience. I'm going through stages of grieving for my husband while he is still alive. The grieving started years ago. In a blink of an eye, I went from being a partner in a relationship and being free to do my own thing, to a Caregiver who had to pick up all the responsibilities we used to share. 

For 10 years now, I've watched my husband diminish one small bit at a time. In 2015 I started this blog to track our journey through Stage IV throat cancer. His prognosis was pretty dim at that time. The cancer treatment process did quite a bit of damage physically and mentally. He already had mental health issues previously. But the chemo fog and the weeks of radiation [along with a TIA & anaphylactic reaction to chemo] lessened his quality of life.

The doctors were amazed at his recovery though and told him so. The stroke that followed a year later should have done him in. Twice the neurosurgeon had to go into his brain to remove blood clots. The neurosurgeon told me afterwards that he wasn't sure how much damage had been done.

Four days later, he was home. I quit work to care for him and take him to therapy 3 times a week to learn to speak again and work on his thought process that had been messed up. Again, everyone was amazed that he came through this event so well. 

Granted, he could still walk, talk [sometimes backwards -- aphasia] and help a bit with chores. But his interest in most everything stopped. He couldn't comprehend reading or browsing the internet to read about hunting, hound dogs, and other fun things he used to do. TV programs have to be simple stories, nothing complicated. 

His anger issues from his PTSD were diminished greatly. The VA appointed me as his Fiduciary [think POA of finances]. We had an inspection from the Fiduciary folks at the house and we went through our statements and finances. 

I sold our cattle and our breeding mares along with a few mules that were to be 'in training'. Rich was still able to mow the yard and run the skid steer. He even was able to work his chainsaw a bit in order to help clean up messes.

In another 14 months he woke up one morning complaining of his chest hurting along with extreme and sudden pain just before Christmas.

Once more I followed him from one hospital to another. He was once again put in ICU and the attending doctor was once more very grim. He'd had a Pulmonary Emboli. Blood clots in both lungs preventing him from breathing. The doctors at this hospital said his chances of surviving were minimal. However, he did survive. He was in so much pain afterwards. His capacity for breathing while doing anything had been taken away.

At a follow up visit to his Primary Care Physician, he complained about his shortness of breath and the pain. The VA doctor looked at him and told him not to complain, there were others worse off than him.

OH yes, she did!

I immediately requested a transfer to Palliative Care. And there we found the best care ever for someone who has had so many medical 'events'. He could leave Palliative Care at any time. They were concerned for the whole person. Not just the current medical event. His pain was addressed, his mental health was addressed, his comfort was addressed as was mine. He had a Social worker and I received a Social Worker who addressed my needs. She became the go to gal when I needed help, an answer, supplies, assistance in any way.

For the next 7 years our lives were pretty quiet. Rich could still mow with an oxygen tank on the rider. We worked with his severe depression. We--the VA and I. His COPD exacerbations took a bit more from him each time.

He could get around the house safely, he could make his own snacks and cereal. 

Then he had his next event in February. Acute hypoxic respiratory failure. Those terms mean simply: He stopped breathing. Period. 

Rich is still upset that they revived him in the ER. He turned down going on a ventilator and they took him off the BiPap. 

Fast forward now to our 5th month in Hospice. It was the best choice we could have made. There is no way I can get Rich to the multitude of appointments that he would have had to do under regular care. I cannot get him in and out of the car and to the house on my own.

His care team comes here. They keep him at a comfort level and each Hospice worker visits with him too. It isn't like an office visit that feel cold and hurried. 

They don't look at us with pity in their eyes. They have been down this road many times with many patients. But no one talks about it. Why? The thing no one wants to acknowledge is that death is a natural part of living and why not make it easier for those loved ones at the end of their lives.

So here is the funny part. 

Please be amused. I went on Tuesday to meet my friend Pat at the CrossFit gym so I could follow her out to her house.

No one at the gym other than Pat has seen hide nor hair of me since June. At the end of class so many came up to me while I was waiting for Pat to change her shoes.

Those questions bombarded me. The looks of sorry and pity, the questions. I was surrounded by well meaning and fun folks.

So how are you doing? [They dragged out the 'are' with sincerity, anguish, concern, and pity.]

I was awful.

I simply answered, "I'm terrible, thanks for asking."  [credit to Nora McInerny]

Pat covered her mouth from her giggle and looked away as the person in front of me stood shocked and speechless.

But I was being honest.  I was not going to answer, "I'm fine, thank you."

Terrible may have been too shocking. Maybe I should have just shrugged. But I didn't get the pity party of looks anymore.

I did have a lady ask if she could talk to me outside of the gym as her life was turning down my same road with her husband. I'm a good listener and sometimes that is all we need.

Now that I could deal with and I gave her my info. I can help others. When this story reaches its end I will do exactly that. I am looking into volunteering for Hospice.

And that is my answer to "How are you doing."

Sometimes I am terrible. Some days I am fine. Some days I just want the world to go away and not be a responsible adult.