They might not have a voice, but they definitely have feelings.
Forgive me for the rant you are about to receive but I find myself continuously frustrated when I see that people are not being cared for with the kind of compassion I believe they should be. I am referring to people who are no longer able to care for themselves. Sometimes I wonder, is it that the person providing the care just doesn't care? Are they over-worked or burnt out? Were they not properly trained on how to be of comfort to others in a way that is gentle, kind, and respectful? I believe that all people deserve kind care, however people at the very end of their life require a gentler, more sensitive kind of care and abrubtly turning every 2 hours, taking hourly vital signs, and forcing food and water do not fall in that category. Neither does leaving them alone in a bed with a dry mouth, crusty eyes, or a brief that has been soiled for hours.
I was with a woman who was non-verbal and had two people caring for her. I always assume if there are two caregivers, that would mean even better care, but that isn't always the case. They were about to change her, and I watched, mortified, as they turned her over without warning, and like a sack of potatoes, and began to tug at her as though she had no feeling. I placed my hand between her face and the railing in time for it not to be squeezed against it, and I cried a little inside.
I have witnessed people carrying on conversations about their weekend plans, food they want to make, or gossip about other people on staff or in the home while providing incontinent care or bathing. HELLO! They can hear you!!! I have watched as two people grabbed hold of a draw sheet, and without warning, scooted someone to the head of the bed, which first startled them because they were not warned, but they also cried out when their head hit the headboard. In my mind, none of this is acceptable.
I was a caregiver, a CNA and an HHA before I became a nurse. I was not taught the things I know now, so I can speak first hand about people not being trained how to truly respect another human being when they cannot care for themselves. The first thing I do if I am training someone is to put them in a hospital bed, and without notice I will raise/lower the bed, remove pillows, pile a heavy blanket on top of them, or move them and ask them how it feels. Unless you know, you cannot possibly understand what it must feel like. I have met a few people who are just born with that compassion and it comes natural for them... but that is not always the case.
I always assume that whether or not they have a voice, they can hear, feel and are somehow aware of everything that is happening to and around them. So, when I provide care, I always let them know when I am about to move or touch them, letting them know step-by-step the things that I am going to do for them. This is their body, and they deserve to be given the respect of a heads-up that they are going to be moved or touched.
Just because they don't have a voice, and cannot verbalize their needs to you, doesn't mean that they should be ignored or treated in any other way except for respectfully. Our role is to anticipate their needs, to assume they might need attention, whether it be changing their brief, gently repositioning them, or adding a drop or two of water to their very dry mouth. No one likes a dry mouth, why would you ever allow someone to lay there hour after hour, or worse, day after day, with a dry mouth?
This is their body and their personal space and while we are there to provide care, it absolutely must be done with kindness and respect and at the very least let them know when we are about to touch or move them. Every time someone is moved, repositioned, changed, given medication, or even when you walk into their room and turn on a light... they should be told first. They deserve that.
Imagine you are lying in a bed, and you are dying. You know that you are dying and whether you are able to verbalize your needs or you haven't said a word in days, you know what is happening around you. When someone walks into the room, turns on the bright light above you without warning, stomps around your room moving stuff and collecting supplies and then raises your bed and starts moving your pillows... without telling you first... it is startling, uncomfortable and can sometimes cause fear. No one deserves to be treated this way. Would you want to be treated that way?
While I have seen horribly dis-respective care, I have also seen kindness in ways that warms my heart. I like the feeling of knowing that when I walk out the door, the person I just visited with will be in good, and gentle hands, and that is what matters most to me. I think what we must remember is that all human beings lying in a bed, possibly nearing death, deserve kindness and compassion. They are not sacks of potatoes, they are human beings with feelings, and my hope is that we all take the time needed to honor that and them.
Announce yourself when you walk into a room, and please knock (gently) on the door before entering.
Let them know you are turning on a light, and if there is a bedside light, try that one first.
Let them know if you are going to raise or lower their bed, add or remove a blanket, add or remove a pillow, move them, touch them, clean them, or take their hand.
Check their mouth; please do not leave it caked in goop, with their tongue or lips so dry they start to crack.
Don’t leave a cool rag across a warm forehead… that just ends up becoming a warm cloth on a warm forehead.
Don’t put your personal music, tv show or sporting event on their TV/radio.
Don’t talk about them to someone else as if they cannot hear.
Don’t gossip or have personal conversations while caring for them.
Please don't be on the phone (texting, social media, etc) when you are sitting at their bedside... sometimes that translates to you being too distracted to be fully present for them.
Always honor and respect them.
In the future, if you are providing care for someone who is unable to do it for themselves, please be mindful of what you say around them, let them know when you enter the room, before you turn on a light, before you touch or move them and when you are caring for them, let them know what you are doing. Imagine if by doing this, you are not just respecting them, you are also relieving them of fear and/or the feeling that they don't matter. They do matter, and it is up to us to remind them of that.
All of us need to be more mindful of everything we say or do in someone else’s private space. Sometimes the care provider is working two jobs, raising a family, going to school, or just exhausted because they are working more hours than they can physically handle and forget to provide care for themselves… this happens often. We need to be mindful of this. I had to make changes for myself as well; we tend to save ourselves for last when it comes to care. You can’t care for someone else if you don’t care for yourself.
Whatever role you fill relative to caring for another human being, imagine that the time you are with them, is the only moment you will have with them. When you leave, can you say to yourself, "I cared for them well. I respected them. I left them knowing that they mattered?" If your answer is yes, thank you...
Sending so much love out to anyone who provides care for another human being. Your work is not easy, and it can take its toll. Take care of you, so when you are caring for someone else, they get the best version of you, as well as the care they deserve.