I remember when our first child, Jonathan, was born. Everything was new, there was much to learn and we were over a thousand miles away from the nearest family. But there were books and manuals that gave us guidelines on how to care for a newborn. After thirty-five years of practicing medicine and taking care of many patients who have suffered with confusion, I realized there was a need for something similar for caregivers of confused patients — that is the reason for this informational sheet.
Whether your loved one’s confusion is temporary (say, due to medications) or permanent, here are ten important guidelines to consider.
I. Routines – Try to keep to routines such as eating breakfast at a certain time, taking a walk, eating familiar foods, and watching favorite television shows. The body responds to rhythms that are familiar and these will keep your loved one calmer and help make them more predictable.
II. Reminders – Patients who are confused often need reminders about the date and time. Consider having a calendar and clock prominently displayed in your house.
III. Reasonable expectations – Don’t expect loved ones to do tasks beyond their capabilities. I remember a man who asked his wife to let the dog into the house because the dog was barking at the door. Instead, his wife let the dog loose from the yard; “Lassie” was found days later. Although familiar tasks need not be ruled out, most confused patients will no longer be able to perform tasks previously done. Use tact and wisdom to assist them while avoiding condescension and embarrassment.
IV. Respect – Try to respond respectfully to questions and comments – even when the talk is nonsensical. It is hard to believe that the intelligent person you once knew is so “out of touch.” Consequently, it is hard to avoid becoming impatient and frustrated but keep in mind that such behavior will usually make the person worse.
V. Regular sleep patterns – Try to maintain regular sleep patterns. Getting a good night’s sleep is important for your loved one and for you. Have regular rituals before bedtime. Getting into one’s pajamas an hour before bedtime, dimming the lights at a certain time and having a glass of milk are common examples.
VI. Resist taking things personally – Don’t try to dwell on or psychoanalyze wild thoughts and paranoid behavior. Simply do your best to change the topic. Your loved one may even say hurtful things. Don’t take it personal — always remember that it is a diseased and confused mind that is talking.
VII. Record medications, complaints, or problems – Keep records of all of the medications (past and present) that your loved one has taken. Be sure and write down any adverse reactions. Also keep a list of medical complaints and problems so you can tell the doctor about these as your loved one may forget.
VIII. Ride with them to the doctor’s office – Because of the confusion, your loved one will need help presenting their medical history to their physician. Ride along with them; talk to the physician separately — if needed. One of my patients with dementia would forget about his chest pain moments after it subsided. Wisely, his wife told me and we easily controlled the pain with a simple medication. (During the entire office visit, the patient vehemently denied any such pain and accused his wife of making it up!)
IX. Respites for you – Being a caregiver for a confused loved one can be physically, emotionally, and spiritually draining; it is a stressful undertaking. Someone coming in for a few hours can give you the time away you need to do chores and simply get some time for yourself. And one day the time may come when you will be no longer able to care for your loved one. Be realistic about this possibility.
X. Remain loving – No matter how confused, patients will sense an uncaring tone or atmosphere. Just like newborn babies, human beings can somehow feel whether someone is being loving or harsh. I am always uncomfortable holding newborn babies – I can never seem to get their head in the right spot and I worry that I might drop them. Babies sense this and often cry when I hold them. But when my wife holds them, they can sense the love and assurance and they immediately calm down. Don’t forget that despite their confusion, your loved one will sense your attitude — just like a newborn.
Your AseraCare Hospice team is always ready to help you during this challenging time – please don’t hesitate to ask. Finally, here are three things I want you to always remember:
I. Remember to ask for help – Don’t hesitate to ask others and God for help. Share the care with others — it will help you and be a blessing to them.
II. Remember to be kind to yourself – The days and hours can be very long when one is taking care of a confused and disoriented loved one. On bad days you will become impatient and frustrated. Be kind to yourself and be thankful that your loved one won’t remember your anger or frustration.
III. Remember that you are blessed – You are blessed to have someone you love and your loved one is blessed to have you. “And now these three remain: faith, hope, and love. But the greatest of these is love.”