As our parents begin to age or life settles for married couples, eventually managing medication becomes a fact of life for the caregiver. By this point, we are monitoring blood pressure, blood sugar, and fluid retention, and each ailment probably have at least one medication or supplement for maintenance. It's a routine that we become accustomed to without fail because we know the consequences. Yet, over time as our loved ones continue to decline and they begin to refuse medications our level of stress rises yet again. For many, living in stressful situations is a way of life.
Once the routine is interrupted then we can expect to see a level of aggression spike along with a decline in their health. This kind of refusal pushes the caregiver back and forth between knowing what they can and cannot control. Tami Anastasia joined me for a follow-up conversation because medication refusal is another area affected by poor communication. For those with loved ones living in memory care communities then the refusal feels more stressful being at the mercy of staff to make sure medications are taken regularly.
Author of Essential Strategies for the Dementia Caregiver, Learning to Pace Yourself, Tami Anastasia, is a Dementia consultant, educator, and speaker. She has provided counseling services, dementia guidance, emotional support, and care strategies to family and professional Dementia caregivers. I asked Tami to help shed some light on improving communication, as she shares in her book. Tami helps shed light on the potential causes along with her 4 D's to detach, document, diffuse, and distract.
Many years ago when I started to drop in on Mom for short visits, I used to be afraid to check into her medications. Managing Mom's medications seemed to be more responsible than I was ready to take on. Helping around the house seemed like old times when I was a teenager doing chores, but medications seemed so clinical. When I began to pick up Mom's medication refills eventually I could finally see her stockpile of pills because Mom was not taking her medications regularly. Back then it was partly a memory issue and partly stubbornness. Mom never wanted to need any medication so if she decided she did not need her anti-depressants because she felt fine then she did not take any of the medications.
We bought the medication boxes with the days of the weeks separated by AM & PM. Mom never knew which pill was the heart med versus the anti-depressant so she could not be discriminant. I used a handwritten index card with all medications listed by time of day to refill the daily medicine box. Aside from knowing what each one was for I was afraid of mixing the AM & PM meds up by accident. Then by the time that I stepped in full time I had the medications memorized and my new list included tips and tricks to get her to take the medications without fussing. Every time I handed Mom a small cup with meds she peeked inside to count the pills, "Wow, why so many pills?"
We have the same conversation every morning which thankfully ended with her swallowing her meds. Then as the evening rolled around, Mom says the same thing, "Didn't I already take my medicines today?" I have learned to provide the same responses in the same tone of voice each time she asks. We had these repetitive conversations throughout all of stage 5 which lasted for 3 years. By the time Mom was in late-stage 5 and beginning stage 6 the conversations with medications became more challenging. Our other conversations began to be more about the end of life so when it came time for the daily meds her questions became "why bother?" or "why prolong the inevitable?" Then we had to find sweet bribes instead of tips and tricks.
You can imagine the consequences of not taking anti-depressants for a manic-depressive bipolar disorder or heart medications for CHF. One day I could say Mom knew the consequences and did not care about them anymore. Another day I would say she does not understand anymore because she spoke about living longer. Other days did not make sense at all when she refused the morning meds but took the evening medications or vice-versa. We were beginning to see her health decline because of the irregularities in taking her medication and had no way of making her understand why she needed to continue to take her medications. I used to think Mom was trying to be clever by telling the staff different reasons because she had a secret death wish, but with closer observation, I don't think she remembered why she refused.
When the sweet bribes stop working I kept thinking Mom was not just stubborn but suicidal. The problem with what I thought was more so what I feared and it was not the cause at all. During my emotional stress responses, I forgot that Mom's brain is still deteriorating so refusing medication was not entirely an attempt to assist her death. Long before stage 6 begins we had already established the fact that Mom's ability to reason was gone with her filter. Each day her reason to refuse medication changed which created the challenge to find new tricks and fewer sweets to manage her diabetes, kidney failure, and mood swings.
Mom's refusals were a new challenge for me to understand but not new to the memory care community or Hospice. If you are facing challenges with your loved one refusing medication, then here are some alternative approaches with potential causes to consider.
1. Review the list of medications with their doctor to evaluate whether the medications are still absolutely necessary. Sometimes the list is set on refill and becomes routine without consideration of effectiveness.
2. Find out which medications can be substituted with a powder or liquid form to add to food or cold beverages. Taste may be compromised so this is where sweets come in handy to mask the flavor in cakes, pies, crème fillings, mocktails, or juices.
3. In later stages our loved ones begin to follow the leader or shadow you more. Make medication a fun activity with candy or medication look-alikes. You would not do this with children but your loved one has reverted to a younger age when candy was fun and yummy. Do this together so they recall a fond memory of candy while they shadow you. You can eat the candy while your loved one gets a few pieces mixed in with their medication.
4. It may be time for some therapeutic lies as to what the medication is for. Short-term memory is lost while long-term memory remains during stage 5 and most of 6. As your loved one progresses they remember they did not always take medications at a younger age so their refusal is age-related without a connection to their current medical status.
5. Consider how many times your loved one is being told what to do throughout the day. Remember sometimes they still want to feel in control of their life. Besides for many children, their first word learned is "no."
6. Medication often has uncomfortable side effects which cause nausea, stomach aches, or dizziness. They may not remember why they have to take the medication but do recall the feeling they get after taking them. Try to include an anti-nausea medication with their meds, an adhesive anti-nausea patch, or a swatch to smell when the wave of nausea flashes.
7. Your loved one may be experiencing difficulty swallowing or have dentures that are a hassle to remove or swallow medication while wearing.
8. Be considerate of the time the medications are given. No one wants to be awakened early and told to take medicines or disturbed during a pleasurable moment like an activity or watching a favorite show to stop and take medications. Providing medications with meals may help to associate the act of swallowing with nutrients if sweets or candy fun do not work.
9. Some forms of Dementia may cause paranoia with their personal belongings being stolen which carries over to paranoia of being poisoned. If your loved one does not recognize the med-tech on staff for the day then they may feel the stranger is trying to harm them. They may also feel their adult children are trying to kill them to gain access to their assets faster.
10. Consider your audience. As your loved one reverts back to a younger mindset they may simply not like the color or size of their medication or the pillbox color. You might find success in cutting pills in half, dipping in hard shell chocolate to hide the color, or changing the color and style of the pillbox.
Thank you for joining in and listening today. I hope this episode gave you more food for thought. Until next time, BE PROACTIVE. Take care, everybody.