This is not a happy post. If you didn't read my post two weeks ago, my father has congestive heart failure and has home hospice care. What that means is that he's dying, it's horrible for him to feel, and for us to see, and we're all crazy (more than before). Thank God for the pains meds and ativan.
Drugs are interesting, they make you not feel physical and mental pain. They also make you disinhibited, and funny as can be.
So... mom and I are trying to convince my dad to stop wearing an undershirt because he has a burning rash. As usual we lie to him and tell him the nurse said he needs to try it to see if it will work. We have a new topical spray to try and he's sitting at the table shirtless (which he never does in front of me) and quite stoned. Suddenly he looks up at us and says "the nurse wants to make me a guinea pig." Then come the sound effects; "Squeak! Squeak! Squeak!" And he goes into a fit of laughter, and so do we. Then he pulled himself up to the walker and started wandering around the kitchen shirtless. It's like we're living in some bizarre black comedy.
I've been there almost every morning to help with the little things and am staying to make dinner, do the dishes and walk out knowing my mom won't wind up collapsing, ususally I'm home by 8. My youngest has been coming to help as well as meet with the nurse, social worker and other workers. Mom and I have become forgetful so it's a huge help to have her there to remember the details. There's a stream of deliveries and this week we've had more drugs and a couple of wheelchairs until we found one that fit him and went through the doorways. Of course she brings the baby and I am in heaven having them both around.
The only good childhood memories I have are from when I was very young. My dad used to tell me bedtime stories and sing to me, he also used to hold me in his arms and dance with me while serenading me. Some part of his brain has remembered all the songs from the 40's & 50's he used to sing. He and I have been serenading baby Kamal with Bessame, Celito Lindo, I Only Have Eyes For You, Laughing on the Outside. The funny thing is that Kamal keeps putting both hands over her mouth, shaking her head no, and screaming, because dad and I suck at it.
He remembers the very old songs you don't hear here anymore. Sometimes he forgets the words so I lean over him and keep singing to prompt him again. It's strange that I remember songs I haven't heard in almost 50 years. Yesterday I walked into the living room, and though he has never sung on a stage, he was holding the phone like a microphone. He was singing "you put your right foot in, you put your right foot out, you do the Honky Donkey and you shake it all about." Bad karaoke compliments of pharma.
It's all very strange and I'm not sure how I'm supposed to feel. In a sense I lost my dad 50 years ago and I've been mourning him ever since. He was replaced by someone incredibly selfish, probably from the inner wounds of being an immigrant in a heartless place. Always knowing you're worth less than others by virtue of your skin. Still, it's hard to love someone who doesn't care about anyone but themself. He never cared if someone else hurt me, he didn't care if he hurt me, he only cared how others treated him. He only cared about himself and other people thinking he was wonderful. He tells me he loves me all the time, aside from feeding me (because he loves food), I never experienced loving actions, just words saying he cared. It took me 50 years to love food, my mom still hates food. New insights about old behaviors come with his latest illness.
There was an incident where he dropped 3 ativans into his recliner. They're as small as slices of a tic tac. After I finished putting a rail on his hospital bed mom and I started digging through the chair so little Kamal wouldn't find them. We spent about an hour digging around in it and I upended and shook it three times. We dug out another unknown pill, multiple toothpics, nuts, paper clips, tissues, and such. At one point I was laying under the leg part with a flashlight and a mirror and mom started laughing a bit hysterically and said I should blog about it as this has been our normal for a lifetime. I asked her again "what continent did we slaughter in a former life to have him?" We laugh so we don't scream. Does any of this make sense? It makes no sense to me. I'm supposed to make this funny but I only feel like crying.
He nagged at us endlessly to move the toy crate so Kamal wouldn't stumble and fall against it, yet I had two arguments with him because I told him we didn't want him to take pills in the recliner anymore and he didn't want to comply. This is our exhausting normal life with him. He has Renaud's Disease and his fingers don't work, he needs to take his pills at the table so if one falls we can find it. I reminded him again that it was a nightmare finding the pills and I hurt my back. I reminded him that the pills could kill the baby. He didn't care, he wants to say he cares and do no more than look good. The following day I heard him yelling at my mom in Arabic that I wasn't letting him do what he wanted. He forgets that even though I no longer speak it I remember a lot of Arabic, especially what a bad girl I am.
I know he's doing the best he can, it's a shame that he's capable of so little. I can no longer pretend he's wonderful. Many expect me to pretend the same thing but I no longer have the energy to put up with selfish people and pretend they're wonderful. Now I'm doing the best I can just to tolerate them when I can't escape, it's one or the other, I'm out of energy. I'm trying to make sure he's not suffering, I wish he'd be more careful that he didn't get hurt. I'm also there guarding my mom, so he won't yell at her. I hate that I'm waiting for him to run out of breath because his misery will be our relief. Today I got an ass chewing about being thrifty, this from a man who has no clue how to manage or save money, I told him no more and walked away. I'm grateful I can walk away, others may think I should feel guilty but I have nothing to be guilty for. I didn't make him sick so he doesn't get to make me suffer for it.
There have been family members over the years that my dad has treated well and they will miss him, but they aren't here doing the work and I can't make things harder for myself to help them feel better. They were beneficiaries of his caring, I was not. Right now I have to take care of my mom and myself first, then my kids. Others are allowed to grieve their loss, I have my own losses to grieve and can't be bound by their needs. I used to do an elegant dance with all the insanity to make it good for everyone else, now I take the steps that make it good for me. I'm going to keep living and don't want to have to put myself together yet again. I'm tired of putting myself together after others create storms. I keep hearing I have to forgive him, I'll have plenty of time to forgive him when he's not hurting us anymore. That's how it goes for me, everyone else can shove it.
I feel very lost in all this, the only person who really understands is my mom. I love my father but what's the point? He tells me he loves me, but what's the benefit of being loved by someone who doesn't care what they do to you or how you feel? How am I supposed to feel sorrow about the loss of someone so selfish and lacking in basic human empathy toward their own family? I'm facing the death of someone who uses me and makes me feel terrible in return for it. I'm grieving for me.
I have been enjoying seeing my daughter and her baby, taking my joy where I can get it. I saw them Monday, Tuesday and saw her without the baby today. It scares me that I'm suddenly seeing much of me in her and I'm worried that she'll get run down but remind myself she's an adult and knows her limits. I'm also really grateful for her help and support, it's been really hard on my mom and I. She loves him a lot and is give my dad warmth and love that mom and I struggle with.
Monday I took a photo of her and the baby standing behind my dad in the recliner. My dad looked at the camera and said "this is goodbye." I wish I'd had a dad who treated me different but that's the person he chose to be. I'm going to keep going there to help my mom as long as it's not harming me. New lessons about setting boundaries and taking care of myself are coming to me. I get to be the person I choose to be and I get to decide what happens to me.
My mom, daughter and little Kamal in pink for Valentines Day.
Mom, coming home from her volunteer work. Still as beautiful as ever.
I lifted the camera and he said "this is goodbye." Yeah, I got a tear in my eye.
Oh, and I realized if my head was on fire I wouldn't panic. The day after he got put in hospice care, I found a large lump in my breast. For Valentines day I got some major groping and had a mammogram and diagnostic ultrasound. It's a huge relief to know I'm still just a crazy flippin' cyst factory with a clean bill of boob health. Well, I'm not so crazy anymore. The truth is I'm really worn out but it's okay, I'm going to be just fine. And I miss everyone here very much. If it wasn't for my friends on OS, I wouldn't be able to do this, and I wouldn't have learned to care about me.