We Love Them Too

Today has been an extremely rough day for all of us at the facility. Emotions are running high; words are flying around the building like nobody’s business and the feeling in the air is bitter and cold. Why is today so out of sort? It is because Steven, a long time resident of our facility, who died last night. Every nurse, nursing assistant, housekeeper, cook, porter,van driver and office worker has an opinon on what should have been done, what should not have been done, and how everything should have been done for Steven.
You see, Steven had fallen ill a few weeks ago; running a fever, severe cough and he had stopped eating. Prior to this “episode,” he was all over the place in the facility, constantly loving on the female staff. His speech was slightly impaired, equal to a mumbled whisper. Dementia had robbed him of both long-term and short-term memories, but he knew a pretty woman when he saw one. His hugs were the best. He beamed ear to ear as the staff lovingly called him their boyfriend. He would turn his cheek, leaning in for his hourly kiss from the staff. His slow shuffle could be heard coming down the hallway at any given time day or night. When the shuffled stopped, the staff knew to go investigate what he had gotten into. He might be rummaging through another’s dresser drawers, changing clothes in the hallway, or he may be stopping to readjust the 27 items he “kleptoed”
from others prior to detection. He was easy to redirect…he would smile when he saw the staff on approach as if he were just waiting for their undivided attention.
Steven’s son called last week, sharing what the hospital doctor had told him.
” I don’t think it looks good for dad. I doubt he will come out of this. The doc wanted to put a feeding tube in, but you know dad. He wouldn’t want to live like that. I told them no. They also wanted to treat him with some different antibiotics, but I don’t see the point to that. Why give the man antibiotics when he is not going to live anyway? You see what I am saying Jessi?” He never paused in his thoughts. Cut, dry and right to the point.
It would be so easy for me to express my opinions, views, values, morals and ethics, but it is not my place to lecture. It is my duty to ensure he understands the outcome of his decisions, but not influence or sway him with my conjecture.
Three days later, Steven returned to the facility via a hospital stretcher. There was no smile, no kiss, no sound of shuffled shoes. His eyes were closed, his breathing shallow and his exhale sounded railed. The paperwork from the hospital clearly stated “nothing by mouth due to aspiration risk”, meaning no food, no water…nothing. I walked away from the stretcher on that day because I had to. I just had to.
Look, I fully understand how people think. I understand how someone who doesn’t have dementia, doesn’t understand what it is like to have dementia. We pity them, mourn them and call it a blessing when they finally pass away. Steven’s son used the words ” dad wouldn’t want to live this way”. I so badly wanted to ask him ” exactly what way would you be referring to? He is happy in the mental place he is in. It brings him joy to shuffle up and down the halls, rooting through other people’s things. He beams with pride when the girls love and kiss on him. He finds it funny as he swats the staff on their backsides as he scoots past….He cheats at bingo and devours the Reese cup bingo prize….He grins ear to ear as he swipes his table buddy’s biscuit off his plate…… but what exactly are you referring to that would make HIM not want to live this way?
See, I think many times people remember others as to who they were, not what they have become.They recall an active mother who attended church 9 times a week and arranged 40 floral centerpieces for every church service. They recall their father as a stern man who drove his truck all over town, always stopping at the same diner for a “good ole boy’s sit down lunch with a cold beer.” It is hard to see these people we answered to all of our lives, called parents, now being the ones we must answer for. From handling business affairs to choosing the best facility to the final choice of “medical directives”….the answers belong to the family….not to the facility administrator, nurse, nursing assistant…..
Here’s the catch though. We didn’t know Steven when he worked in the coal mines. We didn’t know the man who taught you how to ride both a horse and a Harley. The man that we know and love is just Steven. We know what we need to do for him and the care we must provide. We take his teeth out at night and soak them. We clean him up in the bath room after a mishap. We know he will not eat fish on Fridays, so we always make sure the kitchen sends him a grilled cheese……..so what exactly….oh never mind. I am not Steven’s daughter. I am not his decision maker…..all I know is that we loved him, and he loved us. His death has been hard on all the staff….that’s the worst part about long-term health care, loving the people we care for, and losing them soon thereafter. The beauty of what we do, and the reward we gain from it? We are given the opportunity to love and care for them….and the honor of knowing them….even if they “didn’t want to live like that”.

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10 thoughts on “We Love Them Too

  1. I think when he said “like that” he was referring to having his dad in bed, non responsive and kept alive only with tubes and drips. My mom always told me to say no to all that stuff and luckily at the end she had a chance to tell them herself. We all know how we want to make an exit and it is a lucky day when you get a chance to say yes or no to getting hooked up — before you end up in a coma and maybe in a court case to just be allowed to die.

    Anyway, that is my opinion.

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    • Thank you so much for reading and sharing your thoughts. You are so right, when those suffering from any disease, have pre-arranged their wishes and made them known to the person who will be the decision maker, it leaves no room for guess work.
      Many blessings to you, and thank you for reading.

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  2. I crying. For Steven for his son for you for the staff. The only solace on this is that God knew the end of the story and permitted it. I am so glad that he was loved for being him. You all loved him all the way. “For what you have done for the least of these you have done for me…”

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  3. I hear what you’re saying but don’t think his Son was calling it because he didn’t want his Dad to spend any longer shuffling up and down the halls. I think he decided to call it knowing that his Dad would probably never return to being the happy, mischievous chap shuffling up and down the halls. I get that entirely because I wouldn’t want Steven to end his days suffering with thirst, hunger, pain or distress / discomfort either. I’d always rather the light just went out abruptly than flicker on and off.

    What I don’t get at all is the hospital saying Steven was not to be given anything by mouth or why. Not sure what end of life care is like over your side of the pond but here (or at least on my watch) nobody is expected or allowed to end their days suffering with thirst, hunger, pain or distress.

    I find that incredibly odd and actually quite worrying. 😦

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    • Thank you for reading and sharing your thoughts. Maybe I was a bit confusing about palliative care, which is the true terminology for what the hospital suggested for Steven. We see this treatment plan often with terminally ill folks, not limited to dementia patients…..”Comfort care” means exactly what it says…comfort. No “curative” measures such as antibiotic therapy, feeding tubes, hydration IVs etc. are utilized to prolong life. In this particular circumstance with Steven, he was declared an “aspiration risk” should he consume food by mouth…hence why he returned to us “NPO”, meaning “nothing by mouth”. Family members must often weigh the risk of aspiration vs feeding tubes vs lack of nutrition…. Aspiration pneumonia is often said to be a more painful life ending event than that of not having hydration and nutrition. It really boils down to family choices at the end of life and what he/she feels is the most comfortable way to die while preserving dignity.
      Thank you again for reading and sharing your thoughts.

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  4. Hi again! My comment about it being worrying wasn’t a reflection on you or the care staff by the way – just want to make that crystal clear from the outset.

    I just found it genuinely surprising to hear what little support or input you seemed to have because it read as though you got little else in the way of advice or support other than a straightforward “Nothing by Mouth” I envisaged Steven arriving home and you / the staff just left to it without any arrangements / discussions about pain relief or other meds to help manage symptoms.

    Policies and procedures for caring and supporting someone in the last days of life tend to kick in quite quickly for most care settings in the UK and speaking generally, includes fairly decent support from hospitals and specialists.

    Anyway, just needed to make sure I hadn’t been misunderstood 🙂

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