On Sunday morning before church I talked with a friend who was clearly overwhelmed. I learned that she had taken on the huge responsibility of caring for her mother-in-law who is the late stages of Alzheimer’s type dementia. They are waiting for an opening in a Memory Care unit and will likely be another couple of months away. This friend is covering multiple day and night shifts for her mother-in-law and is still managing to take care of an infant grandchild four days a week. She is beyond exhausted and admittedly over her head in caring for a woman who is agitated and angry and unable to remember anything but the most basic life skills.
There is nothing easy thing about this. Since elder-care is my area of expertise I tried to get a little more information so I could offer resources to help lighten her load. But she could hardly hear or receive what I was offering because she was so stuck. There were a variety of sticking points, “On days when I have both the baby and my mother-in-law the baby entertains her. A little.” “The baby? Oh no, there is no one else to take care of her for even one day, besides, I promised so I have to do it.” And then a big sticking point, “Well, God gave me all of this to do so I know I have to do it. And besides I have to take care of my mother-in-law because I promised we’d take care of her.” What an over-tired, over-promised jumble.
It took a minute to back out of the situation far enough to find some small changes that could make a big difference. Perhaps the parents of the infant could find alternate child care until grandma moves, or at least for two days a week. Maybe extra caregivers could come in at night while the mother-in-law is sleeping. Even one night a week would help. Maybe my friend could take advantage of some resources to help her understand how to calm and redirect a person with advanced dementia. There were several maybe’s and in the end she finally said that learning how to communicate with and redirect her agitated mother-in-law would be the fastest way to help the situation. The resources are on their way and I’m glad I could help. Maybe once she makes one change for herself it will be easier to ask other family members to make changes, too.
I do believe that God gives us good work to do, especially in honoring and caring for our parents but it doesn’t mean that we have to do every bit of it ourselves. It does mean that we are to make sure that they are safe and well cared for. Sometimes this means the parent lives in a facility or care home where some one who is trained in specialized care takes over the daily work. Sometimes it means caregivers coming into the home. Other times it takes a team of people, using community resources to help. And occasionally you just have to let go of other responsibilities for a while, no matter what you promised. However it all comes together, it is not necessary and not reasonable to do it all yourself.
Be careful of the emotionally loaded promises you make to your elders, and when you do make promises about the future take the time to consider what you’re really saying. Often people making the promises take them so personally that they hold themselves to an impossible standard. Try something like this instead, “I love you and I will always do everything I can to make sure you are safe and well cared for.” It’s liberating to the person making the promise and reassuring to the person hearing it. For many families this kind of promise can be the first step to talking openly about the future. Once that’s done, plan to ask for help.
I can’t begin to count how often I say, “At some point every single person will need an advocate.” This is especially true in medical situations—people are very surprised at how quickly they can be put out of commission through injury or unexpected illness.
I had the opportunity to be that advocate for a co-worker this past week when she arrived at our office disoriented, vacant, and apparently having some kind of neurological issue or event. It didn’t take long to determine that *Jackie was not in charge of herself and not capable of making good decisions on her own behalf.
At that point advocacy started. I helped Jackie to a comfortable chair, kept a reassuring hand on her shoulder and quietly asked another co-worker to call 911. When the first responders arrived we quietly and very calmly shared relevant information, as I reassured Jackie that these people were here to help her. As long as I kept my hand on her she was able to calmly deal with their talk and procedures.
It wasn’t long before the ambulance arrived and decisions were made about transport and the chosen hospital. I informed co-workers that I would be going along with Jackie and I left before the ambulance was ready to go. The benefit of arriving at the Emergency Department first was that I was able to establish contact with the registrar so everyone would be aware that this patient was not alone and it would give me access to her right away.
Based on this day-long experience I thought it would be a good idea to write some tips for being an advocate in medical situation. These points are primarily for adults, but would work for children as well.
- Be ready to help kindly, calmly, and quickly.
- If you are the designated Health Care Representative for the patient make sure to have a copy of the document with you. (I keep mine in the glove compartment of my car.)
- Introduce yourself to medical personnel, making sure to state your relationship to the patient.
- When you offer information about the patient and what brought them to the hospital try to be factual and efficient with your words. The idea is to be a liaison between the patient and the medical professionals.
- If questions are posed to the patient give them time and opportunity to answer. Many times the nurses and doctors are asking questions more to determine how able and aware a person is rather than for simply gathering information.
- The medical person will likely look to you for confirmation of information the patient offers, and I do mean look, so be waiting for them to catch your eye. Do not interrupt until you are engaged for confirmation. If the patient’s answer is clearly off base you can stand back, out of the patient’s line of sight and shake your head, indicating that there is a problem with the answer.
- You are there on the patient’s behalf. In sharing information about them do not belittle, criticize, embarrass or judge them. It is also unwise to correct them if their answers are off. There are quiet ways to share accurate information.
- Be willing to sit quietly for long periods of time. Take your cue from the patient. Do not ask too many questions. If they are confused, sick, frightened, or in pain they likely do not have the capacity to engage in small talk or questioning.
- When doctors come in feel free to ask questions calmly and respectfully. If the patient isn’t grasping what the doctor says offer a reassuring touch and explain it in another way.
- Keep an eye on the patient and try to anticipate what they might want; they may not be aware of their needs or may be unable to articulate them. Does their skin feel cool to the touch—ask for a blanket. Are they thirsty or showing signs of a dry mouth—ask if they can have liquids. Do they need to go to the bathroom—notify the nurse so the nurse can decide how to handle it.
- If pain, discomfort, bleeding, agitation, confusion, or hallucinations seem to be increasing ask for help. You are in the perfect place to notice these changes, and to act on them.
- Do not assume the patient is safe to get up out of bed even if they think they’re perfectly capable. Ask for help.
- If you are aware of the patient’s medication allergies make sure the nurses and doctors are made aware of them, too. When medications are ordered, and when they arrive do not hesitate to ask what they’re giving and why.
- Be a calm and comforting presence—be an asset to everyone.
- Remember that confidentiality is critically important. Share details only with people who have a need to know, both during and after the event.
- If you will need to share information with family members take notes if necessary. Remember to report facts only, and be careful to not engage in criticism of the patient.
- Be glad that you were able to help. If you need to talk with someone to help you process your experience find a trusted individual who will hold your conversation in confidence.
Our long day ended well in that I was excused after family members arrived, six hours after we arrived at the hospital. The patient was discharged later the same day and will be returning to work in another week. I was never given details about the final outcome and that’s perfectly alright. I did my part while I was needed. Mission accomplished.
I hope the list above will be helpful to you, and that it will encourage you to be an advocate for someone when they really need it.
*Name and details changed
A friend and I went to the State Fair yesterday. We enjoyed clouds, some sun breaks, pouring rain, clouds, hail, unbelievable rain, sun, and the most glorious sunset ever. And all of that was just from the sky.
We have a routine at the Fair, wandering through the animal barns watching the judging and grooming, and kids with their swine, goats, cows, sheep, and draft horses before heading off to all the other exhibits.
This year, because of the incredible sky shows we spent more time inside and took our time with each offer to vote for “Best of Show” or “People’s Choice”. With small pieces of paper and stubby pencils in hand we jotted exhibit numbers on our way through the various sections, carefully making our choices, and then went back to make our final decisions. This year with my renewed energy for writing I took the time to use my words, instead of just writing a number. The writing prompt on the papers said, “What did you especially enjoy about this entry, or what did it make you think about?”
It was a great opportunity to do some creative writing on a few short lines, and to consider the initial questions, but even more important was the opportunity to affirm and encourage the artisans, the growers, and the bakers. Each entrant will receive their comments and hopefully those words will be part of the fuel that helps them keep going when they’re not sure if they want to try again.
Writing about telling the truth has been a struggle for me over the last couple of weeks. I have written pages and pages of paragraphs for a blog post but I have struggled to get to the essence of what I want to say. I know I haven’t hit the mark so I’ve scrapped all the words and will try again later.
I think part of the problem is that most people can’t or won’t agree on what truth is, or what the truth is. Current definition tells us that truth is either something that people accept as truth, or something that is in accordance with fact or reality . I think there’s a big difference between the two. It’s a lot like saying a person can be sincere in their accepted belief but they can still be sincerely wrong. Effectively communicating truth can be very tricky, especially when the definition of truth itself is not rock solid.
And, there are many times when people are afraid of the truth and simply won’t hear it, and in their fear won’t allow others to hear or talk about it either. It can get very complicated, especially when generations of families get enmeshed in avoiding the truth about any given topic.
Our world needs truth tellers–people who tell the truth in a way that others can hear and consider, whether the words are written or spoken. Being a truth teller is hard work. It requires wisdom, humility, compassion, the ability to really listen, and the ability to fearlessly carry out the mission. Some readers/listeners will need to know facts before they can hear anything else, while others will respond better to a gentle pulling in, a story maybe, or signs that the truth teller genuinely cares about the person receiving the message.
I am a truth teller, I know these things to be true, but I have to re-learn how to write the words effectively. I’m heading back to the drawing board, ready to start on some new paragraphs.