When The End Comes

Sorry that I’ve been absent for so long. There has been so much to juggle the past few months, and since I have a few people with whom I can verbally process my life, I guess blogging hasn’t been a top priority. I have plans to fill in some of my thoughts and experiences from the summer, but they will have to wait.

The reason for this entry, however, is that last night I received word from Stewie that The Brain finished his battle/war with ALS.

While I hate that a terrible disease has taken yet another person in such a cruel way, my emotion is not so much based on anger or depression or bitterness. I am actually relieved to know that he fought his battle in the only way he could and was able to let go. I am relieved to know that Stewie will have the opportunity to sleep through the night for the first time in over 2 years. I am relieved to know that The Brain was able to let go of this life and not give up hope.

I’m sure there will be more writings and musings of my grieving. But they will be dampened as I do not feel my life will make as much of an adjustment compared with others.

I have been struck the past few months in how complete the prayers of Orthodoxy are for the human experience. When we let go of our pride that says only extemporaneous or spontaneous prayers are best, we find a vast wealth of wisdom. So, I leave you with several of the prayers available in the Orthodox Prayer Book published by Holy Protection Monastery in Colorado (aka “The Blue Romanian Prayer Book”)

Oh good Lord, remember Your servant(s) _______ and forgive them all in which they have transgressed in their lives, for only You are without sin and can grant rest to the departed. In Your divine wisdom and love for mankind, You bestow all things and provide for all the needs of man. O Creator, rest the souls of Your servants _____ who have placed their hope in You, O Lord, the Fashioner, the Creator and our God. Amont the saints, O Christ, rest the souls of Your servants where there is neither pain nor grief nor sighing, but life everlasting.

In one of my conversations with The Brain before I left for nursing school, he expressed to me his fear of being forgotten after his death. So, I now can pray the words I reassured to him that day: Memory eternal.



When The End is Near

The past two weeks The Brain has been in rapid decline. I am thankful I was able to see him over Memorial Day when an hour-long conversation did not take all his energy for the day. Besides, since last Thanksgiving, I try to do most of the talking. He has recently consented to swapping out his usual king-sized mattress for a hospital bed and does not balk at any medication interventions to control secretions or pain. From what I read in updates, he is not uncomfortable but there is a huge battle with peripheral edema that refuses to go down. Edema, or swelling, is a sign that the kidneys are not motivated to keep filtering the extra water and usual waste products out of the body.

We talked about ALS our last day of lecture in Med-Surg 2 along with other “chronic neurological disorders.” I had to work hard to not dominate the discussion. The question was posed to the class, “What do you tell a patient who asks you if there is a cure for ALS?”

Under my breath I muttered, “You tell them to plan their last vacation.”

When going over some of the collaborative care for ALS, a group recommended Physical Therapy along with some other options. I spoke up and said that physical therapy is good, but the patient is not going to improve over time. Rather, massage therapy might be better as it had been beneficial for The Brain. Unused muscles cramp up and become rigid; if the patient will allow a massage therapist to work with the muscles early on, the later neuropathy due to muscle atrophy is greatly reduced. Having helped multiple people move or even roll in bed, those with loose muscles are MUCH easier than those with rigid and spastic muscles.

As I said earlier, hospice nursing is different. You know that your patient will not beat their disease or win the battle with their body. I knew when I first started working for The Brain and Stewie that there would be an end; I just didn’t know if I would be working for them when it came.

My prayer has not changed nor has my view of reality to the situation. Reality is merely coming into focus more clearly, along with the true reality that we are all given the gift of our lives, and we get to share those with others. I am continually thankful for Stewie and The Brain sharing theirs with me, even as ALS is sneaking around the back for its last hurrah.

Thus, as always, Lord have mercy.

Hospice Nursing

We knew the discussion was coming based on our pre-class preparation videos.

My group was having a discussion on end-of-life care and how hospice nursing is different than other kinds of nursing. We delved into the ethics of giving morphine or other comfort measures that may or may not drop our patient’s O2 saturation lower. I was of the few students who had experience with hospice care and nursing. Caring for The Brain had been most of my formative hospice experience, however, I have had other family members in hospice care and a good friend described her experience with hospice in relation to her mother’s illness.

Hospice nursing is different.

Your patient will not get better. He/She will not walk out of the facility or their home cured and on the path to wellness. “Wellness”, for a hospice patient, is more based on their comfort and whether or not there is peace at the end of life. You meet amazing people with interesting lives, yet you are usually meeting them at the end of their life’s journey.

In describing the above, and using almost the exact words, I teared and choked up in front of my colleagues. I thought of The Brain and my aunt and my grandma.

It’s easy to feel defeated on the floors as a nurse – I didn’t get patient medications on time, I failed to call the nurse or someone about the patient, the patient did not get to walk exactly when s/he called for me, the patient bathed 2 hours after s/he asked for a set up because I was held up in other patient rooms or needing to get vital signs on everyone before the next rounds.

But how does a hospice nurse not feel defeated? Every patient is choosing to stop life-prolonging measures and has, to some degree, accepted death as the resolution to their disease. It is a different form of nursing to know that you have helped your patient live well and provided them with comfort and anxiety relief. You have given the patient utmost consideration, care, dignity and security. You assure them that their body will be treated respectfully when they pass away.

And until those final moments, you share memories. You swap recipes for favorite meals. You hear about the patient’s life, passion, and wishes for care. You look at their choice for a casket or urn. You ask what they need and what the family and caregivers need. You are a nurse that stares death in the face and tells it that just because it is lingering does not mean there is fear.

Still Going, Still Waiting

I woke up Saturday morning thinking about The Brain and Stewie. It has been a while since I wrote an update on his condition and life in their house. Stewie keeps me and a few other close friends posted on their daily activities and The Brain’s downward progress. Until medical research gives the world another picture of disease progression, there’s only one way for a person with ALS to progress  – downhill.

Saturday, shortly after I woke up, I thought of The Brain and all that has changed for him and Stewie since I left them in August. And I finally did something I’ve been needing to for about a month – I cried. The Brain is such a fighter, and if it weren’t for BiPAP machines that help him breathe, I am certain he would not still be alive. The news of this last week is that The Brain is losing more control over the last of his voluntary muscular functions (I’m toning this down for those of you more squeamish). He’s also battling over-production of saliva along with less ability to swallow. The risk of him falling out of equipment to help transfer him in and out of his wheelchair grows everyday. What he can eat without choking is a dwindling list. When he sleeps, his breathing pattern changes.

Someone asked me recently what I thought his timeline was, beings that The Brain has outlived every one of my guesses. I could only respond by saying the disease is a waiting game. Lungs with less than 10% of their usual function that are hardening will eventually stop oxygenating his body. For now, only one day at a time.

I’m heavily distracted tonight. Some of it is Lent (Remember, I’m Orthodox. Easter/Pascha hasn’t happened yet). Some of it is school – Oh, the guilt of my studying doused with heavy distractions never being enough. But I know part of my mind-wandering is The Brain and wondering how he is really doing.

How odd to be in the midst of Lent with The Brain and Stewie always in the back of my mind. This is a time of spiritual refocusing that culminates in the proclamation that “CHRIST IS RISEN FROM THE DEAD TRAMPLING DOWN DEATH BY DEATH. AND UPON THOSE IN THE TOMBS BESTOWING LIFE!” So, here I am to be celebrating the Risen Christ and the Hope he gives us over death, yet, each day greets The Brain with the reality that he is closer to death. While each of us is closer everyday, how much more sobering to see a person for whom it is a present reality rather than a passing thought.

During the Paschal service, we are reminded of the power of our Hope in Christ. “O Death, where is thy sting? O Hell, where is thy victory?”

It still doesn’t mean that while The Brain is alive I don’t feel the sting of his or Stewie’s suffering.

Two Days with The Brain

The week I fainted for no good reason in nursing clinicals, I also spent a few days with The Brain. The help that he and his wife had hired to replace me in August had been hit and miss. Turns out, all of their private care givers had health issues of some sort that week. I knew Stewie* (see below) couldn’t do everything herself; I wanted to see them, I had no class those two days, and once The Brain is set up in his office – I’m not needed much. So, in my down time, I caught up on my readings for class.

The brain

Photo credit: Wikipedia

It was a good deal all around.

Of course, it didn’t help that I was informed while in town that I needed to get a release signed by my physician to return to clinicals. Running errands was NOT how I wanted to spend time.

As I reflect to that time, I think I experienced the type of grief that an out-of-town family member experiences. When I was there everyday, I saw the little things and knew how daily life was changing. We would all adjust accordingly and get on with life. Since I had a three-month gap from the last time I cared for him, well, I had a lot of fast adjusting to do.

His neck muscles are weaker, so the chair has to be tipped back a little more. He lost the ability to click his mouse buttons and now has an eye-gaze system, so the computer set up is different. He can no longer make the 30 ft trek from the kitchen to the bathroom without air support – thus the equipment now travels with him. He can still talk, swallow, and chew, but all of those functions are noticeable slower and cause him fatigue.

His abdomen is a story in and of itself.

The digestive organs still work because they are involuntary muscles. ALS only impacts voluntary muscles. However, the abdominal muscles (as in, your 6-pack er something) help support the organs; the structure and movement of the abs helps with the movement of food through the digestive tract. Because of their general weakness, the digestive organs have lost their support. Because of his BiPAP (air pressure), extra air gets into the tract, which expands the abdomen. You and I can move around to possibly get the gas out either end, take some laxatives or add bulk to our diets. Something to get more external movement that will increase the internal movement. He doesn’t have that option.

I was in Assessment at the time, so I percussed all four quadrants of his abdomen. Hyper-resonant. You want that in the lungs, you don’t want that over the liver or intestines.

There were no break-through conversations with The Brain. No amazing words of wisdom on either side.

It was a good chance for me to rest after my disastrous experience around people who knew a thing or two about stitches and staples. And I was thankful that I was available as Stewie’s been burned out since a shoulder procedure a year ago. Support groups, hair cuts, and massages only go so far to manage the stress of caring for someone with a long-term terminal illness.

I know school is my first priority, and I’m setting up a new chapter of life here in Indy. Yet, both of them are on my mind and in my prayers constantly. And even if it’s a whole sleeve of Oreo’s or finding a sweet deal on adaptive computer equipment or the ability to breathe without anxiety – I pray that God is showing them mercy.

*Stewie: sometimes it takes me a while to come up with code names for people. “Stewie” is how I will refer to “The Brain’s wife” from now on; it’s a lame reference to her favorite racing driver.

The Adventure Begins

In about 9 hours, I will have my orientation for nursing school. Yes, I’m tired right now, but I’m also strung out on everything that’s been going on and all that is left to do.

You know what I hate about moving: having to figure out where everything goes in your new house THEN having to figure out a new town. Indy has several areas that used to be shopping centers, but everything moved farther out to the suburbs. Thus, areas that should have the stores I’m looking for – don’t.


What People Don’t See

After my previous post, I hesitate to continue with that theme, but it is what is on my mind right now. Along with the concerns for my boss’s health is my own transition to nursing school. I’m excited to go to school, but it means that he and his wife have limited options for finding my replacement in the next 2-3 weeks. Especially hard is knowing that his wife’s possibilities for my replacement are not returning her phone calls.

Work has continued to be wonderful and easy, but the things making it hard are what others don’t see. Continue Reading

Days of Divine Appointment

Today was a rough day, and I knew it would be 5 minutes after I pulled into work.

There was a package waiting by the door; I puzzled for a mere moment and then remembered, it is The Brain’s custom-made urn. Somber, to say the least

Swaying Contentment

Wow! Thanks for the great response over the past few days, y’all! I just had record-breaking days of blog traffic – although in my case, that’s not too hard.

Anyway, it’s back to the grindstone on studying. And by grindstone, I mean needing to study but being plagued with apathy, internet distractions, and crying. Not necessarily in that order.

I know some of it has to do with “The Brain.” He has a visit coming soon to talk about funeral arrangements. Overall, he’s feeling good after recovering from his pneumonia, but the decline is still there. Then again, he might plateau again, which his nurse today mentioned as something for which he’s due. The good thing is that this last illness is getting him to talk about needing more help and making future arrangements.

The other part has to do with me. I realized during Lent that I was talking with my girlfriends about the same thing: my lack of contentment. This has been a recurring theme for the past, oh, 12-15 years. Continue Reading

Being Human

Thank you for your patience while my apathy towards school turned into apathy on life. One reason I could tell it was apathy and not depression was that my bad attitude was focused on specific events (i.e. upcoming tests and the end of the semester) rather than anxiety over everything in life or general sadness at transition. I guess since I know that transition is coming and I can prioritize what needs to happen, I’m not feeling mowed over by life.

[Rather than “Geek Boss” as code for my employer, I have now decided upon “The Brain.” Other than his electrical engineering background, he has been consistently messing around with computer gadgets and programs. I tease him that he’s like “Brain” from Pinky and the Brain. NARF!]
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