helping the hurting

Mom and me on Mother's Day, 2016. She has Dementia

Do you ever find yourself clueless and at a loss for words when someone expresses their emotions? Or do you find that too many words gush out of your mouth at once in an attempt to fix their problem? I have found myself at both ends of this spectrum and have worked hard to learn to listen so that my response can be one that is truly helpful, instead of one that leaves the person wishing they had never said a word at all.  

Facebook group pages offer some of the most perfect opportunities to totally miss the point of a post. Posts are often vague, there is no face across the table from you. You can't see the tears the poster is shedding. True empathy and compassion can seem hard to find when there is not a warm body to hug. But Facebook groups also offer great opportunities to help the hurting. Those who share common struggles are all here in one place and often people will find the courage to write what they would never say. Sadly, people will also write what they would never say to you in person, if you get my point about that two way street.

There are some basic guidelines to follow, and there are also some subtle hints to be found in the words expressed by those we are trying to help, that can guide us if we know what to look for.

~Feelings are not right or wrong, they just are. They also may be different than what you feel even if the situation is exactly the same. No one should ever be made to feel bad or guilty about what they feel. No one should ever be told to feel something different than what they feel. No one should be told not to feel what they feel.  No one should be told not to worry or care about what other people think. Let's face it, we all kinda care, at least a little, what others think about us.

~Our goal should be to acknowledge the feelings of others without necessarily expressing our feelings or similar experience. When someone has been brave enough to put their feelings out there, they deserve the limelight. There is nothing more disheartening, that leaves you feeling totally unheard, than to make yourself vulnerable by sharing, only to have someone toss out a quick, 'I'm sorry" and then spend the next 2 paragraphs telling you about their experience. Talk about making it all about you and not about them... Sometimes, we just want it to be all about us and that is perfectly okay when it's your post. In the life of a caregiver, it is rarely ever all about us. Give us our moment. If you need your moment, write your own post so we can all love on you.

~ If your sentence includes the words "but", "you should" or "at least", you probably shouldn't write the sentence. For example, if I said: "My mom has had dementia for a long time and it's so hard to watch her slowly disappear.", and your response is, "Well at least you still have your mom, my mom died.", or, "You should be grateful you still have your mom.", those kind of responses will only serve to make the one grieving feel guilty, and that they are ungrateful. A better response might be something like this, "I know, the missing is so hard.", or "You love your mom so much, I can't imagine how hard it must be to watch her fade away." These responses acknowledge the persons feelings without adding guilt or judgement. They know you understand they are missing who their loved one used to be. Dementia is the slowest death there is yet so often we don't expect people to be grieving over it. Ambiguous loss, here but gone...

~When someone dies, one of the worst things you can say is, "Well at least they aren't suffering anymore.", or, "But they're in a better place now." While those things might be true, particularly if the deceased person had dementia or was ill and suffering, they are not usually comforting words to those who are left behind. They make the unspoken statement that the person should be relieved their loved one has died, not sad.  A grieving person may indeed be relieved that their loved one is no longer suffering, but they most likely are not glad they are gone. The knowledge that they aren't suffering does not really make the loss any easier. It is best to acknowledge death by simply saying "I'm sorry." If you knew their loved one, a quick happy memory of them might be appropriate if the setting is right. Funerals are not usually the best place for this as they have so many people to greet and are so grief stricken they probably won't remember half the good things people said anyway. Send a note or save your story for later. They will need those stories after the rush is over and everyone has expected them to get back to "normal" life. We rush our grief so...

~When to give advice and when to give encouragement. This can be a tough one for many people, particularly those with a strong, "fix it" personality. I am guilty of that personality and have to check myself often to be sure I'm not advising when I should just be listening, acknowledging and comforting. The key to this is always in their words. Statements of emotion or fatigue, like, "I can't stand this anymore, today was horrible!" are not usually looking for advice. They are looking for acknowledgement, understanding, empathy and encouragement. 

If someone says, "I'm so worn out.", and you respond with, "Well get some rest." or "You must take care of yourself.", you have just dismissed their hidden message with a pat answer. They may be talking about sleep, but they may not be. They know they should get some rest, they know they should take care of themselves. To tell them to do so is to tell them that you assume they don't know. Being a caregiver is draining and often, sadly, rest just isn't as readily available as we might like it to be. However, encouraging words like, "I'm so sorry you are worn, I hope you can get some rest.", or "I'm praying for you. I know just how draining this is.", can be words that put wind in weary sails. Their statement was made in hopes that someone would understand exactly how they feel and tell them it's going to be okay. It wasn't made so that someone would tell them to rest, they already know they need rest. 

On the other hand, if they had said, "Does anyone have suggestions for how to get some more rest?" They are asking for advice and you should feel free to give them all the tips and tricks that have worked for you. 

The difference between the two statements is obvious but often we're more interested in what we have to say about our experiences with a particular situation and we forget the post is not really about us.

If someone says, "My dad is driving me crazy, I'm so annoyed with him!", and you respond with, "You should enjoy every moment you have with him, one day he won't be here to drive you crazy." Ouch, tons of guilt added onto the guilt this person already feels for having those feelings. Let's be honest, as dementia caregivers, we all have felt, or will feel this way at some point or points. If we don't, we either got really, really lucky or we're lying. A better response might be, "I know exactly what you mean, I've felt the same way. I'm sorry you're there right now."  By saying this, we've acknowledge their feelings and we haven't added any guilt to the guilt they already have. We've also told them we understand how it feels.  If you have never experienced this feeling but you want to encourage them, a simple, "I'm sorry, I hope things calm down soon." is always good. 

Now, if they had said, "My dad is really driving me crazy! He's reading every sign we drive past. Any suggestions for how to distract him?" That's open season on advice, go for it.

Unsolicited advice, when given to someone who didn't ask for it, particularly if they are already feeling down and low, can be interpreted as criticism and can make them feel as if you think they are not intelligent enough to think of that themselves. It also totally misses the point of what they did need in the first place which is compassion, empathy and understanding. They are left feeling like they got a double whammy instead of a shoulder to lean on and a listening ear.  

Listen to what they are saying. If they haven't asked for advice, don't offer it. The last thing a venting person wants, or needs, is advice, and a person who truly wants or needs advice, will ask for it. Take the time to truly hear what was said and honor the poster's feelings by giving them what they need to the best of your ability. If you can't do that for them, for whatever reason, honor them by scrolling on by without commenting.

~Give grace, and then give some more grace. Emotionally charged people say things they probably would not say under normal circumstances. Some posts may be shocking to you. See past the shock to the pain that might cause them to say such a thing. I have said at times that I wish my mom would die. People, particularly people in the early stages of this rotten game can not comprehend that. People who are where we are now might understand it, they might not. I love my mom beyond words. She is miserable, she is tired of being miserable and I'm so sad and so tired of seeing her be miserable.  It's bad when death seems like a blessing. Give people who are at the bottom of the pit the grace they need. If you can't, just scroll on by. If you want to understand, then start by saying you are sorry they feel this way, and ask them if they would like to talk about it? If they do, don't criticize their answers, just try to understand. Remember that you only know how you think you will feel about a situation. The test comes when you are really there. I have changed my stance on so many things over the last 8 years.

~Know that none of us will ever get it all right and give yourself that same grace. Use that delete button. I think keyboards should come with a I'm sorry button too but until they do, type out the words when you're wrong or when you've hurt someone, even when you didn't mean to hurt them. It's never too late to say I'm sorry when you said the wrong thing. Strive for peace. Strive for understanding.

~Remember how you want to be treated. When you say, "Oh man, life just sucks!", do you really want someone telling you what to do so that your life doesn't suck? As if they know anything about your life anyway.

~Remember just that, we don't really know each other, about each other's lives, personal character, or struggles. Don't judge what you don't know. Be kind.

~Starting your sentence, or making the statement in your sentence, "I don't mean to be rude but", is never a good choice and clearly indicates you're about to be rude.

~Sometimes less really is more.

~I know there are others, but these are what's on my heart right now. As a side note, these things work in the real world too, not just the facebook world.

~And finally, in the words of the ever famous Thumper...

Blessings, 

Chris Anthony