Family caregivers are under constant scrutiny from people living in the margins or completely disconnected from their daily reality.
People judge us for how we spend our loved ones’ money.
They criticize us for how we manage our loved ones’ healthcare and affairs.
They accuse us of neglect when we are only trying to honor their independence and dignity of risk.
There are few things worse than being accused of trying to kill your loved one faster or involuntarily drugging them.
If you have been advised to administer comfort meds and your loved one is not able to consent-especially when they have a cognitive impairment like dementia-it can feel scary and/or even wrong to give them these medicines.
Our whole lives we are taught that drugs are bad. People are criminalized for using them.
As we inched ever closer to the end, I found myself constantly questioning myself, wavering and hesitating to give my grandma medication to help alleviate her pain or calm her anxiety. I wasted so much time wondering if it was right to give this or that. It took some time, but eventually I figured out that if the notion she needed them had even crossed my mind, she probably did.
Here’s what I did to help me feel comfortable with comfort meds:
- First, I educated myself on the medications my grandma was provided, including their side effects. The more information I had and the better I understood the effects they had on the body, the better I felt about giving them.
- When I documented giving them to my grandma, I began writing down the indication (why I gave it- as specific as possible – to slow breathing, anxiety, moaning, furrowed brow). That way, I had what I believed was a valid reason for giving it to her.
- Then, I gave her the benefit of the doubt in case she was in there somewhere and told her why I was giving it to her (just like they do in the hospital): “Grandma, I’m not sure if you can hear me right now, but it looks like you are very uncomfortable. I’m going to give you this medicine to help you relax.”
If you are in a situation where you have been given and advised to administer comfort medicines to your loved one to ease pain or distress from the fact that they are DYING, I hope this post will give you some comfort and talking points if you should come under the gun of your close family and friends.
1. Repeat after me: Comfort meds are not roofies.
My grandma had Alzheimer’s. Her brain was not functioning properly.
My grandma was 100% without a doubt not able to consent to receiving comfort medicine.
She was not truly able to tell us whether or not she was in pain or distress. Beyond that, she was not always willing to tell you if that was the case.
Don’t let anyone second guess your judgment: you know your loved one and their needs best.
2. Repeat after me: Comfort meds are providing comfort.
My grandma’s comfort was my top priority. If she was hurting, super anxious, upset and/or confused she was *not* comfortable. Assuming we had done everything we could non-medically to help her, she needed something to help her relax.
She was at the end of her life with Alzheimer’s. That means that her brain had been slowly dying for quite a while. It was impossible to truly understand her experience. She often didn’t or couldn’t or can’t communicate her experience, so we had to let go of any hangups we may have had regarding administering the comfort meds.
The kind, humane thing to do was to give her comfort meds. It would have been cruel to withhold them, simply because we had some internal conflict or miseducation regarding pharmaceuticals.
3. Repeat after me: This tiny dose of comfort medicine will not kill my loved one now, or any faster.
Comfort medications are often prescribed in very small amounts with limits to how much can be administered in a 24-hour period.
If you are giving your loved one the comfort medicine as it has been prescribed, YOU HAVE NOTHING TO WORRY ABOUT. Death has its own timeline and process, and these medicines have little impact on that. They are simply provided to help your loved one feel better as they near the end of their life.
4. Repeat after me: YOUR comfort is the priority of your true friends and family.
People who truly love you and understand the TREMENDOUS AND UNIQUE DIFFICULTY of your experience will not make insensitive comments like this, or at least try not to.
If someone makes a comment that rubs you the wrong way, confront them. Whether or not it was in jest, they need some education.
Feel free to use the script below, improvising as you see fit:
I wanted to let you know that the comment you made about “drugging my loved one” really hurt me. I’m not sure if you were kidding, or what, but your comment came off as super judgmental.
I am doing the best I can in a difficult situation. My loved one’s healthcare providers made the medicine available to us and advised me to use them when I need to.
If your mom, or anyone else you loved was dying (or consider yourself, for that matter) and they were:
- losing the ability to speak and read
- losing the ability to interpret what you see and hear
- losing control of their body
- unable to feed themself
- having frequent and frightening visual and auditory hallucinations
- not sleeping regularly or at all
- not able to breathe
- unable to recognize their surroundings or the people around them
- having trouble doing most of the things that gave them joy in life
- feeling uncomfortable and not able to say so
- never knew what time it is or the day, or what will happen next….
Would you be at ease?
Don’t you think you would be okay with receiving or giving medicine to help feel more relaxed or ease their pain?
I’ve had a hard enough time becoming comfortable with using them myself, and I don’t need comments from people who do not have much insight to my daily life causing me to second guess myself, least of which a friend (or my own flesh and blood).
If something like this has happened to you, I am so sorry. This can be a huge mental mountain to climb.
(BTB, If you are reading this and you are a friend or close family to someone who has accepted the mission of caring for a loved one at their end of their life, just try not to be an asshole, okay? Chances are, they have enough to worry about without you adding extra guilt to the weigh they are carrying on their shoulders.)