How fast do you drive? On a scale from Mr. Magoo to Mark Martin, how far right does your speedometer go to find its happy place? I drive 1-2 MPH over the speed limit in Tempo One as I drive to work every day to accommodate for the 1-2 MPH slow my gauge says compared to the radar construction zone signs. I used to go much faster, back in the day. In the 1980’s I drove 10 MPH over most places. That is, until I got my first ticket. I was driving near Rolla, Missouri, home of the Highway Patrol headquarters when I made the mistake of driving that fast and making eye contact with a patrolman driving the opposite direction. I glanced in my rear view and noticed that he was driving through the grass median a ways back, so I thought it brilliant to turn off on an exit that led to a nothing town outside of Rolla and hope he didn’t notice. He noticed. When he stopped me he made laser beam eye contact with me and said “Level with me son…where are your heading in such a hurry?”. I stammered and lied “Uhhh…to find a gas station?”. He was gracious and said “Despite the fact that I could give you a big ticket for trying to avoid me, I will just give you a 77 in a 55.”
Sigh. This 22 MPH over ticket still cost me about $175 plus made my already high insurance go up. This was eye-opening for a teen Mark who was making $3.80/hour…and I vowed never to get a speeding ticket again. Now, 30+ years later I am still ticket-less since. At least 30 people passed me (some with anger) today in a construction zone on my commute to work. Typical day. Apparently the huge signs that say “Slow Down” in flashing lights with their radar-indicated speed below is not enough encouragement for them, or perhaps they think the speed guns are not on the level and are trying to trick them into driving slower than the speed limit.
Shifting gears, let’s talk communication a little this morning. Patients with late stage dementia, like my mom, in particular. Lots could be said about this topic. Here are a few links that I found useful:
I think a good starter discussion for communicating with late stage loved ones could revolve around the acronym LEVEL. (Before I proceed, let me level with you…every story is different. You know your loved one better than I do. These are general strategies that seem useful to me in my couple years studying and using them. Use what you can and pitch the rest.)
- L- Limit your words and your questions. You can limit words by talking slowly and enunciating clearly. Patient in this stage of the disease do not multi-task well, if at all. Sometimes silence is golden. Realize that non-verbal communication, whether by holding hands or just being there, is very important communication too. If we talk too much, we may miss the communication back in the form of a smile or squeeze. Similarly, don’t ask open-ended questions that can frustrate. Limit to simple yes and no questions and expect non-verbal answers/cues to answer better than the potential words. Rather than asking the complex sentence “Do you remember when we went fishing?”, try the simple statement “Oh, we sure used to have a fun time fishing!” This small change takes the pressure off of understanding the series of words in the sentence and emphasizes the word of importance: fishing. A word is easier to process than a string of words. Simple steps in a process that you work through one at a time are easier than trying to eat the whole elephant in one bite.
- E- Eye Contact. If you are going to level with your patient/loved one, you have to be on a level plane with him/her. As you walk into the room, announce simply that you are there in a kind tone he or she can hear. Immediately make eye contact in whatever posture you need to. With mom, she is often awake, but looking down and to the right. I get on the floor and make eye contact. face-to-face with a smile and a loving simple statement “Hi mom!”. (Some will use their parent’s name rather than his/her title because they may recognize that better…but I feel weird calling mom by her name, so I don’t.). I lovingly squeeze in my hand as a holding object and gradually get more upright. Sometimes I have to gently help her be more upright. Some, like my friend/Sweet 17’er Mrs. W who struggles with Lewy Body Dementia, have terrible posture and this is hard. You may have to sit low or make eye contact and start the conversation, then sit up and not have eye contact after he/she knows you are there. Peripheral vision, whether non-existent or just hard to process, is always a concern as you introduce yourself. Don’t surprise him/her by “sneaking up” on the side thinking/assuming they will hear you. Once you have made eye contact, it will make sense and will allow for more comfort.
- V- Voice. A calm, gentle voice works great. You don’t have to use a baby voice although the temptation is there. The calm, slow cadence is probably more importance then the pitch. Avoid the arguing voice/tone. Arguing with anyone with dementia is pointless, but with a late-stage loved one it is a complete waste of time. Keep your body language relaxed too. I expect patients can understand body language better than we think.
- E- Echo. This may just be me and it may or may not have a lot of value for you, but it sure seems helpful to me. When mom rips off a long string of sounds that only slightly resemble words, she often emphasizes a word or two. I typically be sure I have good eye contact and echo the key word or phrase back to her. She often smiles and echos it back and exhales feeling understood. Not unlike when you are traveling abroad and are the only one who speaks your language, when you feel understood by someone, perhaps at a store, repeating of a word or phrase it brings you a modicum of peace and joy. Which is more important? Them truly communicating thoughts in a dialog way they are challenged to do…or feeling peace and being understood? They may not be capable of the one, but they are the other. Take the victories where you can. 🙂 Listen closely and you can sometimes hear the differing cadence of a question compared to a statement.
- L- Limit communication of data to its simplest forms/formats. What I mean by that is avoid sensory overload. Music/TV is awesome, but keep it low in volume when you are visiting. Don’t expect “two-way” conversation during eating or during an activity. The last half of this video (from the list above) does a nice job explaining part of this. If you have new smells in the room, are holding his/her hand, there is music, there are new things to look at and other sensory experiences all at once, it may, for some, be an overload and hinder communication. (However, there is value, in my opinion, to sensory overload, if you will, in exercising his/her memory for the good ole days. Imaging a room decorated like a 1940’s diner with period music playing, perhaps pipe smells, and theme foods to taste. I bet that would, even for a little while, do interesting things as far as “bringing back old times”.)
There is so much more that could be said by people much more experienced than I am. Please comment below or email me with your suggestions. (email@example.com). I wish I could fix things in this area for you and for mom/the Sweet 17. In fact, I wish I could banish this stupid disease from our stinkin’ world…but I can’t. Until we find a cure, we fight, we advocate, we give, we serve, we love, we communicate the best we can and we pray.
Update: Mom had another great day yesterday. She was in bed when I got there but was awake. I flopped on the mat next to her bed and said “Hi Mom”, made eye contact, and sat there until her nurses came in to prep her for supper. Was a nice visit and all is well. Her doc said the powers that be were pushing for a reduction in one of her meds, but he expressed concern about “rocking the boat” when things are good like these days, so we are leaving them the same for now.