Thursday, December 19, 2013


The bitching and moaning will be epic, but not pregnancy-related, so this post is safe.  It might get bilious.  I want to start this by saying that I logically know that all parties involved care about my dad and are trying to be helpful.   

Remember how I said last post that there's been some stuff going on with my dad and it has been stressful?  Well, just to fill in the blanks I will explain that for the last 3 or so months, Dad is on a new chemo protocol that combines pills and a biweekly infusion.  About midway through, he had started to have bad side effects - loss of appetite and fatigue.  Dad's appetite is not exactly voracious even under normal circumstances and he lost a bunch of weight (and he's already thin).  So, Dr. T lowered his dosage and that seemed to do the trick.  But a couple of weeks ago, he went back to not really eating and he just seemed.... down.  In a funk.  We had a long talk about it and that led to a long talk with his nurse practitioner, and long story short (too late), she prescribed a low dose of an anti-depressant.  It hasn't even been a full week that he's been on it and so we don't expect to see much in the way or results for a bit.  His appetite is still not great.  And then this week he got a stomach bug.  Wheeee!  Isn't this fun?  His weight is low and I am concerned. 

In the midst of all this, my sister started texting me (we primarily communicate via text, which is actually a good thing, as she's not a good listener and sometime says really ridiculous things, and texting allows me to respond in a positive, supportive way instead of yelling. "What did you just say???") about how worried she was about Dad because of his appetite loss.  I should explain that my sister is not involved in my dad's medical treatment (other than what we tell her) and it's been like that from day one.  There are many reasons for this, but they're not very important.  I asked Dad what, if anything, he had told her about his appetite loss, anti-depressants, etc.  He said he had not told her about the anti-depressants because he didn't want it winding up on Facebook (my sister is a notorious Facebook oversharer, but the "good" news is she only overshares about her own life and the life of her children).  I explained this to Dad and suggested we should tell her about the anti-depressants, so he agreed.

So, I explained what was going on, and my sister pointed out that Dad gets lonely and spends too much time alone.  I said yes, and that it was important for us to both spend as much time with him as we could.  She said one of her patently ridiculous things, and I'm just going to skip to the chase which is that the conversation quickly devolved into my sister wanting to move my dad into a senior living community down the street from her (something he would never agree to) and acting like Dad is our aunt who has dementia.  I convinced her to chill.  She chilled.  This is one of my pet peeves, not just with my sister, but with a lot of people when it comes to an elderly relative.  I think it is inappropriate to discuss plans of "what to do" about an elderly relative without that relative present when said relative is of sound mind.  To me, it infantalizes the elderly relative.  My dad is of sound mind, and other than the fact that he has cancer, he is quite able-bodied, and I will not participate in a conversation where we're talking about packing up and moving Dad unless Dad has expressed that he wants that.

So yeah, this week Dad had a stomach bug, and on Wednesday when the husband and wife who clean his house came by, Dad was in bed and explained to the husband that he was "having a bad day with his cancer" or something to that effect, which was (Dad admits) not a good way to put it.  More on that in a minute.

Fast forward to today, I came out to visit Dad.  He's still a bit under the weather, slept a lot today, and mentioned that my sister had stopped by and she had commented that he didn't look well.  At dinner, we had a long and kind of depressing conversation about the stress we both feel over his condition and what our next steps should be/what we want to talk about with his nurse next week.  I should note that this type of stress and these types of conversations are a totally normal part of the process with cancer treatment.  I have felt this way numerous times over the last 5 years, it just happens more frequently now.  And while the conversation is a downer because we are implicitly admitting that we know that Dad won't live forever, it is also a good and important conversation to have.

On the drive back to Dad's from dinner, my sister starts calling me.  Turns out the wife who cleans Dad's house had called my sister because she was so concerned with how Dad looked [Dad found this amusing, as she didn't actually see him, only her husband saw him], and noted that there was no food in the fridge.  I checked the fridge - Dad threw out a lot of old/bad stuff last week.  Is there a lot in there?  No.  Does this look like my dad's fridge has looked for the last 3 years?  Yes.  Then my sister said, "Well, did he tell you I came to visit and he was sleeping and he forgot I was coming and he looked terrible?"  I said, "Yes, yes, dear sister, I know.  He told me.  He has a stomach bug.  You know this.  He is on chemotherapy.  You know this."  Except I said it nicer.  Eventually I calmed her down, explained our plans for the appointment next week.  But man, I have to say.  I was pissed.  I realize that the cleaning lady cares about Dad and was trying to be helpful.  But it was not helpful.  I am here EVER FUCKING WEEK.  I talk to my dad EVERY FUCKING DAY.  I am my father's legal healthcare proxy.  I am fully fucking aware of every goddamn thing that happens to my father and I don't need the cleaning lady calling me up to discuss my dad's health and give me advice on what I should do.  My sister gets wound up and then she wants to wind me up, because that relaxes her.  And yes, it irks me that people call her at all.  They assume because she is the oldest that she is responsible for Dad, when nothing could be farther from the truth.

I got off the phone and said to Dad, "You need to give your cleaning lady my cell phone so she stops calling Sis when she gets worried about you."  Dad agreed.  I explained to Dad my discomfort with people calling up and my sister wanting to have long discussions about "what to do" about Dad's appetite.  It feels gossipy and infantilizing.  If the cleaning lady is concerned about Dad, she should ask Dad, "Are you okay?  I'm worried about you."  Or, here's a thought - bring him some fucking food so that I'm not the one who has to spend all damn day worrying about what he'll eat and what I can tempt him with from the bakery.  Such phone calls to my sister also feel suggestive - like she's suggesting we don't know what's going on with Dad and she somehow does, or like she's suggesting we're not doing a good enough job of taking care of him.  I know.  I KNOW.  I am being 100% unfair to this poor woman who probably thought she was doing a good deed.  I know that part of this is projection - that I feel like I am not doing a good enough job unless I either move back home or get Dad to move in with me.

I took some deep breaths after this and climbed into Dad's car so I could run to Kohls to do some Christmas shopping.  As I'm sitting in the car, checking my phone, my dad's neighbor, Mr. N, comes over to me.  Remember how I said Dad slipped on the ice on Sunday and fell?  Yeah, Mr. N was snow blowing Dad's driveway for him (which he always does, because he is so, so kind) and witnessed said fall.  "Is your dad okay?"  Mr. N asked me, concern etching his face.  Oh man, guys.  Now I'm crying.  It's not my job to make everyone feel better about Dad.  It's supposed to be everyone else's job to make ME feel better about Dad.  But that's not how it is for a primary caretaker.  "He's okay," I assured Mr. N.  I explained about the change in chemo, and how Dad is tired and has a loss of appetite, but we're working with his doctor to get it fixed.  Mr. N wanted to know if I knew Dad had fallen.  I explained that he had told me, and that Dad drives me crazy by going outside in the snow.  Mr. N said he knows, he's always telling Dad to stay inside, but he doesn't listen (sounds about right).  He asked if there was anything he could do, and I said, "You already do by plowing out his driveway in the snow.  We're so grateful."  He said it was the least he could do.  

But it was just the last straw for me today.  I'm done with this day.  This days sucks, and I want a new day.

I guess my parting words are advice.  If you know someone who is very ill, the nicest thing you can do is not call up their primary caretaker and tell them how shitty they look or how you're worried about them.  The nicest thing you can do is offer to bring some food.  Or just bring the food, don't even offer.  Or you can shovel their steps in the snow, or you can bring them a good book, or just visit and keep them company.


  1. Oh Megs I completely get how frustrating this all must be. I can't imagine being the primary caregiver for a sick parent...there is certainly not enough understanding of that role. I agree they were probably all trying to help but I would react exactly as you did and feel as frustrated. So please know your feelings are valid. I'm sending lots of hugs and good thoughts. And I must say, how lucky your dad is to have a daughter like you! If you ever need to talk just let me know! I'm a good listener :-).

  2. Uggghhhhh is right. It's so hard for people to do helpful things and so easy for them to complain and gossip and yap unhelpful things that add stress and waste everyone's time. The dynamics of your sister's role sounds very stressful and the cleaning lady, oh my, how is that helping anything?! Super frustrating. I love that you gave some straightforward advice at the end. I think it's wonderful that you take such an active role in caring for your dad.

  3. This is why people say the road to hell is paved with good intentions. Meaning well isn't enough. You need to think it through what the actual end result of your actions will be, consider how it could be harmful, and look for a way to do actually DO good, not just feel good about yourself for being so damn "caring". I hope you had a lovely Christmas (miles away better than Thanksgiving!) and are currently surrounded by delicious leftovers.