If I want to get to heaven

I have to walk away from hell
FEBRUARY 16, 2012 12:03AM

Pain meds, giggling, and serenading babies

Rate: 23 Flag

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. 

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My mother in law was like this but she still lives on at 86. Still yells at everyone and calls everyone every name under the sun in Italian,.
I swear they will out live us all Doris.

Last summer I just could not deal with her anymore.. Your daughter and mother are beautiful. Kamal looks so sweet and knows nothing about what goes on.

Patience of the Gods is what is needed and I send you love and prayers..
HUGGGGGGG

Ps.. I have what is called lumpy breasts hahaha
Linda, you're as warm and constant as the sun. NO! They will not outlive us, we will have our freedom yet. I love my dad and it's painful watching him suffer. That doesn't change who he is. Umpteen books about how to go through the slow death of someone wonderful. Where is the book to help us through this experience where I feel so torn? I'm spent tonight, I wish I could just curl up with that sweet little girl.
I'm so sorry about your father and what's ahead for him and your family, but it seems you're all handling things with grace. On a happier note, I'm glad your test result was a relief. Sending positive wishes your way, Bleue.
Myriad, thanks.

Daisy Jane, as far as a relationship, all I could do was ask. I do believe in Heaven and I think the only emotion we have there is Love as all the others are attached to the body and survival/pleasure needs. I have to believe God will send him to Heaven, we are all weak in our own ways. I have to believe that much or every person I know is going to Hell. Sometimes a crazy belief system is the one that makes life bearable.

Candace, hahaha! Graceful while secretly flipping out is my forte. Where do the people go who don't have a place to come dump all these terrible feelings while they're walking around "handling" everything? I think they're in the looney bin. I'm so grateful for my good news, very grateful for the things I don't have.
I couldn't sleep so I got up and I just finished reading every word of this. I know you must exhausted but I just want to say you seem to being doing other people a world of good. Hang in there. And by the way, your family is full of lovely women. Your daughter comes by her beauty quite naturally via you.
Hospice care wakes us up to many realities...and we are delivered into a world of hyper-awareness of the status quo. Sometimes (under every day circumstances) that status quo is easy to ignore. When you see someone up-close dying you re-evaluate a lot of things...including your own life. I am so glad the lump was a cyst. What a terrible ootz at the end of your story!! xoxox
Grateful. An attitude of gratitude. You are a wonderful writer. You get it all out and then some. I am right there with you as you go thru this with your family. It is team work at the most basic level. So important and you are obeying the one and only rule. Take care of yourself first. I am proud of you!!!
Scarlett, I'm tired enough to be too wired to sleep yet. It's really a blessing to have my daughter there too, it's nice that we have each other to lean on. At the same time it's hard to see her losing her grandfather in an awful way, he's the closest thing she has to a real father. It's hard enough for mom and I to see him suffer, my poor little girl. What a bad trip we're all on.

Brazen Princess, you said it! Everything I was able to ignore is being held right up in front of my face non-stop. I'm having one insight after another and re-evaluating everything. I may not know what works for me but I have a clear picture of what doesn't.

Zanelle, no more holding in toxins or letting others hand me their bag-o-shit. Thanks for being here with me and for the last sentence. I'm really doing it! I need a gold star like in kindergarten, I'm taking care of me.
[r] Bleue, so powerfully said. thank you. i wish i were as brave as you putting your reality out there. sometimes i have tried but not so much in a forum like this. your commentary always resonates so much. and you write amidst the irl chaos, willing to write and sort it out by the actual writing, instead of having it all outlined out for yourself and reader beforehand in your head and heart. it makes it quite impactful to us readers, such brave vulnerability and spontaneity.

i have been through several "death watches" of loved ones. the intense stress and sometimes beautiful "time seeming to stop" moments of spontaneity, realization and/or communion with others (like hanging off that zen cliff tasting a strawberry or like laughing with your mom cited above) can be off the charts.

I also have been the child at the end of abuse and seeing an eldster who was so childlike and recklessly abusive in their prime while I was growing up so vulnerable to them and this person becoming even more childlike and dependent and vulnerable but still at times recklessly verbally abusive or just plain thoughtless still or again -- it is hard to take especially with all the hopefully hard-won healthy development of boundaries in our maturation. But then AGAIN there is the pity that we had and still have and even more perhaps now at the end of their life and also the obligation and family role stuff and the obligation we carry to support fellow supporting family members.

Beautiful looking family, all the "girls" are radiant! :) best, libby
The women in your family are strong and beautiful. I hope you are enjoying this lovely, mild winter.

What you said about other people telling you to forgive? Ignore them. You'll do what you need to do in your own time. You know that, so this is just a reminder for when you feel pressured.

Take care.
A sad story. But I get the feeling that you are stuck in the past with all of this. I sense that there could be a breakthrough with him IN THE NOW. If you want to pursue it. Thanks for your honesty.
Witnessing and assisting a parent as they die is an experience we have no training for. We do it as students, and learn how on a moment to moment basis. What matters is just your willingness to show up and allow your father to teach you this one last thing.

And YAY! about the benign cysts :-)
Our fathers were a lot alike and it sucks but you are amazing to do what you are doing, even though you do it for your mom, it will help you so much when it really is time to say good by to your dad.
Do find time for you in all that is circling around you and love that gorgeous grandaughter!
I'm so sorry, Le Heure. I know how it feels to be a caretaker to a very selfish person. My mom was that person- selfish, narcissistic, mentally ill my whole life and was diagnosed with Alzheimer's in November 2010. I have been her caregiver for awhile and had to put her in a nursing home last May. I am her only visitor - my brother only saw her once last year. I wish you strength and send prayers and love. You have a gorgeous daughter!
Your daughter and granddaughter AND mom are all beautiful!!! Great genes in your family! I'm sorry about your Dad. I liked this line of yours, "I didn't make him sick so he doesn't get to make me suffer for it." You have so much strength!
Your granddaughter, your mom and you are beautiful too!
Doris, I love reading what you write and your family is truly beautiful. Everything in my family is either comedy or black comedy. I wish we could be one bit earnest, for once.
The concept of how we should feel, and what we really feel, is always so interesting to me. I think you are wise and kind so I'm not going to worry about you being too hard now, and having regrets later. Part of me wants to scream, " Just be sugar to him and feel no guilt or regrets. " But, I imagine you have good reasons for your anger and resentment.

You are indeed a cyst factory, dear!
Libby, it's a choice between facing reality or ignoring it and letting myself spiral out of control. There's much wisdom and insight here and the responses offer more than my own narrow view. It's not bravery it's my vulnerability that scares me. I can't let myself backslide.

People like my dad are hard to endure under the best circumstances. It's hard not to hope that this would somehow make him change his behavior. Instead it's a chance for me to change, and still do the right things.

Thank you for sharing your experience and insight so generously. I keep thinking I can't do this but reading comments I remind myself if others can do this, so can I.
Bleue so glad to see these photos. Your lovely mom, gorgeous daughter and granddaughter. I know what you have been through (well through your writing here) to get to this place, and although there is pain, I am happy for you to have comfort in your women.
Take care. Hand across the miles.
Phyllis, cat people learn well from their kitties. First to ignore chattering and if that doesn't work a swat and hissing reminds others they're messing with your wounds. Thank you for reminding me.

Patrick, nope, but thanks. I'm stuck with this in the now. I've pursued it to his death, he still doesn't care who gets hurt, right down to dropping pills that would kill the baby. I'm not foolish enough to not learn from history. It's incredibly sad that my mom and I have to deal with his behavior even now. It is what it is.

greenheron, if only we weren't such complex creatures. So many painful lessons, Sigh. Yay for my good news!

Lunchlady, early programming for us. If only I could grab my mom and just save us. It's never simple. Thank goodness I have that little angel. She's been giving me the "stank eye" when displeased and it just cracks me up.

Erica, I'm so very sorry, I truly understand what it's like and what you're going through. There are so many mixed emotions tied up in year after year of grief. I wish you strength and peace.

I Love Life, "it's not my fault" is the silent mantra that runs through my head. I'm really grateful I don't have guilt to deal with right now.

fernsy, I'm treating him very well, getting whatever he needs, singing with him and keeping him comfortable. What I'm not doing is allowing him to abuse my mother or myself just because he's dying. Thank goodness I can vent here.

Everyone has suffering, everyone comes to the end of their life. It's not a license to injure others or be cruel.

Rita, the photos at the end are like the sugar after bitter medicine. For many of us there's no way around it, there's only through it. It's horrible to watch someone suffer day after day. Grateful for the hand.
“Right now I have to take care of my mom and myself first,
then my kids.
Others are allowed to grieve their loss,
have my own losses to grieve and can't be bound by their needs.”
…………………………………………………….
Well put, for you are descending into what you well describe as “bizarre black comedy.”
This is how it was when my parents died.
Mom had liver failure, which clouded her mind.
Dad had Dementia , which somehow made a taciturn strict by the book Boy scout into a charming childman ready , after 80 yrs, to kiss his kids..
And complain about the woman in the kitchen. (his rehab place)
She was over there, watching him.
He wanted me to tell the Desk of this hotel ,which was also somehow his house,
about this intrusive old woman, (across the hall in her room).



Drugs are interesting, they make you not feel physical and mental pain. They also make you …

Accessible…

The soul is hidden under layers of conditioning. And pain.
Why not go to town on Dad? Have some fun. See what comes up.
It is NOT nonsense. It is gonna be metaphorical…but worth it…….trust me…………….


ps your daughter is delightful. Her eyes tell me she=a good girl.
James, you are kind and so understanding of nuttiness that many haven't experienced. I'm grateful he and I have the singing. Unfortunately my father wasn't strict he was just mean, he was lax raising me, he's lazy so screaming was easier for him. Everything is about him in his head and heart.

He's has been refusing to wear his hearing aids for two decades and English is his third language. Sometimes I tell him dinner is ready ten times and finally I'm shouting one word at a time "DINNER... IS... READY" When he finally hears, I'm gasping and ready to scream in frustration and he ends it with an angry "you don't have to shout." This insanity seemed endurable for the first 15 years but the last 5 have pissed my mom and I off. It was great when he was ambulatory because we could avoid conversing with him.

The only conversation he wants with me is to lecture me or tell me my failings or brag about himself which are mostly delusions of grandeur I'm bored with hearing again and again. The singing is fun for me. He can talk with my girls if they want to listen to him, they haven't put up with what my mom and I have. Selfish people are just a drain and now he has all these extra needs so we have to jump through all these hoops. The technical term is that he's a spoiled brat.

I'm willing to help him physically and treat him with kindness as much as possible, anything that's damaging for me I'm not going to do. If he is lonely, that's a result of his behavior and choices in life. If I choose to stand around and let him hurt me, that's my own fault. He's not exempt from the results of his choices, just like the rest of us.

I'm dreading each new day that presents new challenges. It's hard to know what to do, he weighs 220 and won't listen though over the years many professionals have tried to teach him how to transfer to a bed or get out of his chair. If we're trying to help him up and he falls I can't afford to try to catch him and get injured myself. We live in constant fear that he'll fall every time he wants to go anywhere. I'm grateful the pain killers and anti-anxiety meds make him less aggressive.

Now I'm just venting again but it's okay, I'm heading over there and not wanting to carry any of this crap with me. My youngest called to say she and her sister are both there and I should stay home all morning and just rest.

I have this awful fear that I'm really not going to miss him or feel bad when he's gone. I wonder if it will just be a relief like when I divorced the bad husbands? I guess I'll find out.
I am glad you and your daughter have reconciled. And what a beautiful baby!
I am so sorry that you're having to go through this. Families are complicated creations but it sounds as if you are looking for, and finding, the rare bright spots in this situation. Much love to you. By the way, your family is gorgeous.
He sounds like a handful, and you sound very wise and centered with respect to this family crisis. I had never thought about how it was dealing with the imminent death of a truly selfish relative, but recently a friend of mine went through the same thing. It was an eye-opener, how much more difficult it is to care for a self-centered person who's reflexive selfishness doesn't change, and who actually now has more leverage to manipulate people. I'm glad you don't feel the need to excuse his behavior because he's dying. I guess we die as we live. I'm sorry for this workload on you and I hope you're holding up ok.
Oh my I do not know what to say except that celebrating life is better and more rewarding than not.
❤.•*`*•(¯`••´¯)
(¯`••´¯)°•.¸.•°❤•(¯`´¯)
.°•.¸.•°❤ PEACE ❤°•.¸.•° •.¸¸.•*`*•❤
I'm so sorry that you are going through so much right now. You do have a beautiful family though. Sending happy positive thoughts your way.
I sent you a PM today. It probably went to SPAM, as all of the PMs I initiate seem to do. Hope you're having a good day.