Saving Steven

Steven? Steven. You need to move! Steven, you need to move!

I couldn’t stop my heart from aching as I watched this older man speak to his son in the waiting room. He rocked back and forth and shifted impatiently and uncomfortably in the wheelchair that was made for someone half his size. His right leg dragged across the ground thanks to his mangled foot rest as he eagerly tried to save his son from falling out the window.

The despair and longing in this man’s voice went through me like a bolt of lightning. I wanted to do everything in my power to help him.

I wanted to save Steven.

Only thing is, there was no Steven. There wasn’t even a window.

Instead, there was a blank, beige wall that bordered the sterile, hot, doctor’s office.

There was also a woman.

A woman whose head was buried in her iPhone.

Because I’ve worked in health care for so long in many different areas, doing many different things, I could tell this woman was a companion, hired by an agency to escort this cognitively impaired man to his appointments. This woman’s job was to care for this man while they are on outings together.

Her job was to make him feel safe and secure. To redirect him in positive and meaningful ways when he needed it.

This woman was NOT hired to do the following:

Man: *looking directly at the blank wall in front of him* Steven? Steven! You need to move! Steven, you need to move!

Companion: *staring at her phone, clearly annoyed* There’s no one there! Who is Steven?!

Man: My son. I’m talking to my son.

Companion: There’s no one over there!

Man: *perturbed, getting restless. Wants to stand up NOW* Yes, there is. He’s standing over there by the window. Steven, get down! You’re going to fall!

Companion: There isn’t even a window over there!

Man: *points to wall, even more agitated* Yes there is. It’s right next to the refrigerator.

Companion: There’s no one over there!

This negative interaction caused this man so much angst that he began to rock back and forth in his wheelchair. He attempted to stand up and save his son three more times as he was scolded by his companion some more.

“Don’t you dare get up!”

It was clear that this man’s short-term memory was extremely impaired but also clear that he knew his companion’s face was the only familiar face in the room.

How he must have felt when every time he looked to that familiar face for some solace, he was met with cold, rude, remarks that left him feeling anxious, alone and helpless.

The thing is…

When it comes to reality, it doesn’t matter if you suffer from a cognitive impairment or not. Everyone’s reality is THEIR reality. Just because no one else could see Steven doesn’t mean he wasn’t there. To this man, Steven was there. And he needed help before he fell out the window and plunged to his death.

You telling me the sky isn’t blue is exactly the same as this man’s companion telling him that Steven and the window did not exist. I KNOW the sky is blue and there’s nothing you can say to me to convince me otherwise. If you keep telling me it’s not blue, I’m going to feel uncomfortable, anxious, and frustrated.

The last thing someone with cognitive impairment needs is someone to tell them that what they’re seeing and experiencing is wrong, ridiculous, and non-existent. As a caregiver or anyone who has a loved one with cognitive impairment, this will NEVER end in your favor. You will always be creating more work and frustration for yourself by not doing this one little thing…

Going on the journey.

This is a term we love to use in healthcare, mainly with people who have been diagnosed with Alzheimer’s and other forms of Dementia.

So, what does it mean to “go on the journey?”

Going on the journey with a cognitively impaired individual is no different than playing pretend with a child and I don’t mean this in a demeaning way whatsoever.

 If your child thinks there is a castle made of candy, protected by a fire breathing dragon in your backyard, what do you do?

You grab the rake and trash can lid and use them as the most gallant sword and shield because THAT is what is in your child’s best interest.

I am not suggesting you treat adults with cognitive impairment as if they are children. I am suggesting that you either “play along” or redirect them, depending on the situation.

Take the story of Teddy for example…

Teddy (name has been changed), 40 years old, diagnosed with a traumatic brain injury and schizophrenia at the age of 15. Lives with his sister who is his primary caretaker. Every single morning, Teddy waits outside for Lebron James to pick him up.

Of course, King James never shows but this does not stop Teddy from waiting for him day after day after day.

Teddy wakes up every single morning, excited as ever and greets his sister.

“I’ll be outside. Lebron is coming to get me in his Lamborghini.”

Now, Teddy’s sister could very well respond to Teddy the way the companion responded to her client in the waiting room.

Luckily, Teddy’s sister learned early on that not going on the journey with Teddy is a colossal mistake.

INEFFECTIVE INTERACTION BETWEEN TEDDY AND SISTER

Teddy: Good morning, sis. I’m gonna go smoke on the steps and wait for Lebron. He’s coming to pick me up today so we can go to a basketball game.

Sister: What are you talking about? Lebron is not coming here.

Teddy: *grows extremely agitated* Yes he is! He just called me and told me to wait outside!

Sister: No, he didn’t. Lebron James doesn’t even have your phone number. Why would he even know who you are? You’re not going outside.

Teddy: *EXTREMELY ANGRY* YES I AM! He’s coming in his Lamborghini and we’re going to a game!

Sister: Teddy! Get back in your room! Lebron is not coming here! He’s never coming here! It’s all in your head.

Teddy: *slams the door, runs outside, disappears*

Sister: *on the phone with the police and his case-worker* Teddy ran away again. I need help.

EFFECTIVE INTERACTION BETWEEN TEDDY AND SISTER

Teddy: Good morning, sis. I’m gonna go smoke on the steps and wait for Lebron. He’s coming to pick me up today so we can go to a basketball game.

Sister: Wow, that sounds like fun. I talked to Lebron earlier and he said to make sure you have some breakfast before you go so why don’t you sit at the table and I’ll make you some waffles?

Teddy: *willingly sits at table but eats as fast as he can* Ok, I’m all done. I’m going outside to wait for Lebron now.

Sister: Ok, I’ll be here if you need anything.

Teddy: *sits outside on front steps, smoking his cigarettes, waiting for Lebron to pull up in his Lamborghini. After an hour, comes inside, looking a bit sad.*

Sister: What’s wrong?

Teddy: I have to call Lebron. He must have gotten lost on his way here.

Sister: Oh, he actually just called before you walked in and said he had to go to an autograph signing and he couldn’t make it today. He said he’s sorry and he will call you again when he has a chance. Shannon is coming to pick you up to bring you to therapy so go brush your teeth, please.

Teddy: Okay.

See how much easier it was when Teddy’s sister went on the journey with him?

I have witnessed hundreds of different interactions where a caregiver did and did not go on the journey and it is clear that going on the journey is almost always the best choice.

As I said earlier, you cannot and should not try to convince someone that their reality is not reality.

It is important to note that going on the journey with folks who have cognitive impairment will not make their impairment worse and it will not make their condition progress faster. Effectively going on the journey and/or redirecting will fill this person’s body, mind and heart with feelings of ease, safety, security and love.

In situations where going on the journey is not the best option, the second best option is to redirect.

In the case of the man and his companion in the waiting room, the companion was not able to play pretend and act like she was physically stopping this man’s son from falling out of a window. In fact, there’s no need to go to great measures like that.

But, there are ways she could have “saved Steven.”

Here are a few things this man’s companion could have done differently:

1. First of all, she could have tried her best to get to know this man before even meeting him for the first time. She could have attempted to find out about his background and life story if this information was readily available within his files at the agency. Where did he grow up? What did he do for work? Does he actually have children? What are/were his interests and hobbies? What exactly are his diagnoses and what do they mean?

2. Secondly, she could have used this information to her advantage when he was trying to get out of his wheelchair to save his son. Instead of telling him that no one was there, she could have changed the subject. If he was a baseball lover, she could have started talking about baseball. If he was a painter in a past life, she could have pretended she needed her house painted and asked him for some advice –  ANYTHING other than fighting him and trying to convince him that his reality was not reality.

3. Thirdly, she could have tried saying something like, “Don’t worry about Steven. He’s perfectly fine. The window is closed and he’s in the other room.” And then she could have changed the subject.

4. Lastly, if she was unable to obtain any information about this man and his life, the simplest thing she could have done was to just be kind, present, patient, and try to engage him in conversation about happy things.

**Side note: I know all too well what these companions and agency caregivers get paid, how high their caseload can be, how disorganized their agency probably is, how burnt out they most likely are, and how little training they receive around the diagnoses of their clients. **

However,

This doesn’t give anyone the excuse to not treat someone with cognitive impairment like the human being that they are. This does not give anyone the right to not be kind, respectful, patient and loving when that is what matters the most.

I’ve been a companion before. I’ve been a home health aide. I’ve been a certified nursing assistant. My maternal grandfather and paternal grandmother died from Alzheimer’s. I’ve worked with countless patients, clients, and residents who have been diagnosed with Dementia, Alzheimer’s, Schizophrenia, Traumatic Brain Injuries, and many other chronic health conditions.

I’ve also worked with family caregivers and family members who care for their loved ones out of the kindness of their own hearts.

Going on the journey is something every single caretaker and family member has to learn. This comes easy to some folks and for others, this can be a huge learning curve. Especially if mom was a Harvard Professor who always knew everything about everything and now she’s saying she doesn’t own a dog while Sparky is sitting at her feet, licking his paws.

Trained or not trained, managing your reactions and interactions with these individuals in an effective way can be challenging but all it takes is practice.

I can promise you that it will be even more challenging if you are reluctant to go on the journey.

Does this post remind you of someone in your life who needs you to go on the journey with them?

If so, I challenge you to go on the journey the next time you find yourself wanting to correct this person or prove them wrong. If going on the journey doesn’t work or doesn’t feel comfortable, try to redirect by changing the subject and engaging this person in conversation about something that is of interest to them.

Take a leap and see what happens.

Take a leap and save Steven.

Check out this 3 minute clip of Teepa Snow (Dementia Expert…she’s AMAZING!) sharing some great tips and tricks around redirecting:

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30 Comments

    • Angie, SO MUCH TRUTH. If more caregivers understood this fully, they would be able to communicate in more effective, meaningful ways and it would work a lot better for all parties involved.

  • If I’d be in your shoes, I would be pretty emotional too! I admire your courage and your passion. This post will surely bring awareness to everyone on how to take care of cognitively impaired patients

    • Hey Krizzia, thanks for the compliments! My true passion has always been with the older and more vulnerable population. It just really hurts me when I see someone who is not receiving the best care possible. I hope this post does bring awareness! Thanks again for taking the time to read my post and leave a comment. Always appreciated!

  • I can’t stand those who go into the profession of helping others then treat their patients, clients, etc. like they are a burden. They chose that profession for a reason. The patient didn’t choose whatever impairment they might have. I know the professional is human and sometimes has a bad day but This type of profession is supposed to be for those with compassion and empathy, not cold and distant. Thanks for sharing this!

    • Hey Michelle, I feel the same way you do. Although those with the utmost compassion and empathy can STILL have bad days, it does not give them the right to treat their client/patient the way the companion did in my post. Thanks for taking the time to read it and leave a comment. I appreciate it!

  • Very eloquently written and informative. Thank you for sharing – as a humanitarian aid worker this resonates in a very different way for me.

  • It’s so tough watching anyone go through things like this. It’s even harder to not intervene! This post is so well written. I agree that going “through the journey” with them helps keep the situation as calm as possible. Thanks for sharing.

    • Hey Megan, thanks for the compliment! Yes, it is SO hard not to intervene when it doesn’t feel appropriate. Thanks for taking the time to read my post and leave a comment!

    • Thank you Carrie! That means so much. I have spent a good amount of time on your page and I thoroughly enjoy it! As a personal trainer and health nut, it’s super intriguing and informative to me. Thanks again for taking the time to read this post and leave a comment. I am very appreciative!

    • Thanks for the compliment, Kasey! And thanks for taking the time to read this. I’m just looking to inform others out there so this vulnerable population can begin to receive all the love and care they deserve.

    • Yes, you are so right. As difficult and emotional as it may be, these individuals still need patience, love and kindness. Thanks so much for taking the time to read this post!

  • I cant imagine how hard it is to care for someone who is diagnosed with Alzheimer’s and other forms of Dementia. It is obviously hard for those who suffer these diseases but those loved ones who take it upon themselves to tend to them truly suffer too.
    However, with that said, I would have lost my mind if I saw a lazy or unattentive PAID caretaker farting around with her phone while their patient was truly struggling through a fit of dementia. I mean they do get paid. That is like an emergency doctor playing on their phone while a patient is bleeding to death on the table!
    I would never wish this diagnosis on my worst enemy. I can only pray for Characters like Steven.

    • Eric, it’s absolutely one of the most challenging things in the world – especially for family caregivers who have committed to caring for their loved ones. It can be just as challenging for home health aides, nurses, and companions who work with individuals with these diagnoses on a daily basis. This is why it is so important for the caregiver (formal or informal) to enter into this realm with a caring, understanding, patient heart and to also enter into it with the proper knowledge of the disease process. A lack of understanding when it comes to the symptoms and progression of the disease usually results in an unfortunate situation like the one I posted about. It was very hard for me to sit there and keep my mouth shut but I also did not have all the facts and didn’t want to assert myself into a situation that had the potential to escalate even further. Alzheimer’s is absolutely one of the saddest and most challenging diagnoses out there which is why it is so important to spread knowledge and awareness so these people can be loved and cared for every single day. Thanks for reading my post and leaving a comment. I truly appreciate it.

    • Crystal, isn’t it so hard sometimes? I have also been in healthcare for many many years simply because it is one of the most rewarding things I have experienced. However, it is situations like these that make me realize how many vulnerable individuals just need someone to truly love and understand them. I so wish I could personally help every one of them which is why I am trying to spread education and awareness. Thanks a lot for checking out my post. I truly appreciate it!

    • Michael, I was just on your site. I will go check out your post too! Isn’t this such an emotional topic? This is why I want to bring it to attention. Thanks for reading it!

  • Wow! This is a beautiful and heartfelt post AND very informative. As parents age this issue will most likely come into sharp focus and I feel better prepared to deal with it in a compassionate and loving way. Thank-you!

    • Eimar, thanks so much for taking the time to read it. It’s all about compassion and love! I hope you are also able to share this information with anyone else who might need it at this time. Have a great day.

  • I cannot imagine how hard the caregiver’s job is, but more compassion was definitely needed. These individuals deserve kindness and the utmost respect, and their caregivers shouldn’t give them any less regardless of how busy they are or how little they are paid.

    • Hi Perri, I completely agree. I think lack of training has a lot to do with it when paid caregivers are not more empathetic and skilled. This ends up falling on the agency for not providing adequate learning opportunities and or continuing education credits. But at the end of the day, it all comes down to kindness and love. Even if you do not have the proper training around a specific disease, you can still approach the situation with a kind and understanding heart. Much unlike the caregiver in this situation who just did not appear to be a kind person in general. Thanks for taking the time to read my post and leave a comment!

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