5 Statements that are Decidedly Not Helpful

Even though we both wish they were. . .

Photo by Priscilla Du Preez 🇨🇦 on Unsplash

So I’ve had about a year and a half to adjust to the fact my husband has a messed up brain disease that will eventually kill him.  No treatment.  No cure.  Nothing to do but stand by and keep him safe as his brain dissolves into mush.  Independent of the medical advice, I choose to stand by and love, love, love on him, letting him do as much as he can do, and taking care of the rest.   

I appreciate in this day and age, when they can put a man on the moon, and make nylons that don’t run, that it is hard to recognize there are still some things modern medicine can’t fix.  Nonetheless, that remains the case.  So let me tell you some things that are decidedly unhelpful for you to say.

1. Don’t Tell Me There Must Be Something That Can Be Done 

Listen.  I get it that death is awkward.  That people really don’t want to talk about someone who is actually, actively dying.  People would far rather find a cure.  So would I.  I can assure you, so would I.  The problem is, there are just some things that can’t be fixed.  It took me a long time to accept this.  If you would prefer to believe that something can fix it, go ahead, but please keep it to yourself.  Although I do have to ask, “What makes you think I didn’t ask our double board certified specialist if there was anything that could be done?” 

2. Don’t Tell Me You Know Something That Can Be Done 

I can’t deal with your best friend’s cousin’s hairdresser who used a hyperbaric chamber (or a blood transfusion in Mexico, or antigravity work) to cure his psoriasis/blood cancer/sore throat and that it might work for my husband too. Really. Just keep it to yourself. If you are uncertain, check with another trusted family member, preferably the one who agrees with you the least. See if they think you should share this “news.” Even if they do think it should be shared, give it another week. Also, please be a lamb and see if you can find some actual double blind, peer reviewed studies on the issue, rather than just a 3^rd party anecdote. 

3. Don’t Give Me Platitudes 

Telling me, “Well, we all have to die of something,” while technically true, does not give me the emotional support I need.  Telling me, “God doesn’t give us more than we can handle,” just makes me laugh out loud. Prisons are full of people who got more than they could handle. (I aim to not be one of them, of course.) A simple, “I’m so sorry,” will do.  Although don’t be surprised if you find me saying, “Me, too.”  Because yes, I am really, really sorry, too.  That’s okay, you know.  For both of us to be sad about a thing we cannot control and cannot contain.  We can just sit together in the shared pain that is our grief. 

4. Prayers are Acceptable, as Long as They Are Unconditional 

If you offer to pray for Mr. J, I will welcome you, along with all other comers.  Who you pray to, as far as I’m concerned, is your business, not mine. Currently, we have people praying to the Holy Trinity, Yaweh, and Allah.  You are welcome to add your voice to the chorus! If you could round out the gods with Ganesha, or Apollo, I won’t say “no.”  But your prayers must be unconditional.  First of all, I am too over extended to keep track of who I’m making promises to “if it works.”  Second of all, if your prayers (or offerings, burning something at an alter, or fasting, etc.) are conditioned on some dramatic conversion, should they “work,” please, keep that to yourself.  If the spirit actually moves Mr. J or me to proselytize, we will do it.  Right now, I’m just trying to make sure he takes his meds twice a day.  And that I pay the light bill on time.   

5. (Most Important!) Don’t Ask Me To Tell You What You Can Do 

Seriously, don’t ask me what you can do.  Don’t announce, “Well, if there’s anything we can do. . . “ and then walk off.  Let me tell you why this is wrong.  My husband is dying and I am barely hanging on.  I can’t remember to pay the mortgage reliably. Sometimes, I can’t remember what Mr. J used to smell like in the before times.  I am overwhelmed.  I need you to offer something specific.   

There are plenty of things you can do, and if you just thought about it for five minutes, you could probably come up with something on your own, but to make it easier, here’s a list of things I would have liked (and a few that people followed through on) that have been an absolute godsend: 

• Let me buy you pizza every Thursday night 

• Let me take Mr. J to breakfast on Tuesdays 

• Here is a box of shower wipes (There is no need to tell me I smell like a dancing bear – I already know that!!  I just haven’t had time to get in the shower - or I’m too sad to care - or both) 

• Here is some dry shampoo (see above) 

• I brought you chocolate to have with your coffee 

• Want to go out to coffee?  Hubby will stay with Mr. J 

• Can I do your laundry so you can get caught up (or, if that’s too personal, Can I send out your laundry so you can get caught up?) 

• Why don’t we take the kids for the weekend? 

• Why don’t you take our cabin for the weekend? 

• You must have so many unexpected expenses.  Here’s a check to cover some of them. 

Seriously, when a dear friend of mine offered me cash to help get caught up on the bills, pride reared her ugly head and I said, “No, thank you.”  But a few weeks later, when I discovered I hadn’t paid the electric bill for six months, and they were threatening to cut off service, I called them back.  They sent a check and have not said another word. But you have to be willing to not. say. another. word.  It’s too hard, otherwise.  And things are hard enough right now.