Extraordinary Mundane

I’ll say one thing for family stress… it’s great for my house. When I feel like I don’t have control and something is upsetting me… I tend to focus on something I can control. Like the mess in my house. Organizing something gives me the illusion of control. It soothes my spirit and makes everything ok.

Today I cleaned my garage.

Which means there must be something really big bothering me.

Gee.. I wonder what it could be.

The key word there was big. Big almost always can be linked to my mother.

My dad is really confused as he is recovering from his surgery. He won’t follow instructions, he’s argumentative with my mother, and he’s in an “altered” state and is in danger of hurting himself. This really is no surprise to me. What is surprising to me is that this is surprising to my mother. And the retired ER nurse is making piss-poor medical choices. She keeps vacillating between martyr and victim and it’s about to send me over the edge!

I am finding it hard to be supportive of my mom when she calls me on the phone. . I’m finding that I can’t maintain a calm composure because I’m so frustrated by her inability to deal effectively with the situation. She is flat out making stupid choices – and she’s not a stupid woman. So what gives? She KNOWS the correct choice, but she refuses to medically advocate for my father and instead laments how difficult this all is. She gets in her head something she can fix and she focuses on that. Like making my dad eat. He literally is forgetting to pick up a fork time after time to eat. He forgets midstream. But in the grand scheme of things to focus on … this is not that important. I mean he’s getting some nourishment… let the guy not eat!!! (My dad is overweight he’s not going to fade away!)

He’s getting up in the middle of the night and yet needs assistance to walk. So my mom is not getting any sleep. When he was in the hospital, he would crawl over the bed rails to get out. And they couldn’t restrain him due to some sort of laws…. So every 15 mins… my mom would have to get up with him. Thing is… my brother in law was there the first night and told my mom that my dad was doing this. So I told my mom to make sure they ordered a strong sleeping pill for my dad. She didn’t do that. And then the next day she’s complaining about how bad it was. Why didn’t she order the sleeping pill? She said she did ask… but I don’t think she did because I’m sure it was a standing order. And I asked then why she didn’t ask the nurse to call the doctor on call. My mom said “I didn’t want to bother them”. Mom… this is what being a medical advocate is… you have to stand up for dad! She also took him off of pain pills too early. She has this fear he’s going to get “addicted”. It’s like mom… let him have the pain pills!!! He’s going to die in the next ten years… if he’s addicted to pain pills who cares?

And that is what feels so horrible. I can’t get her to really see her role with my father. She now admits this surgery was a bad idea. When she was here, I tried to talk her out of it. I flat out told her I thought that this surgery stood a 50/50 shot of putting dad in a nursing home. Well.. her response was “It’s for his quality of life and/or He wants the surgery”. Gah. She’s still letting a mentally demented person make healthcare decisions! Just like she was letting him dose his own insulin. It’s like… she thinks if she lets him make his own decisions he really wont have Alzhiemers.

So I am frustrated. And now my garage is clean.

I know that personally, the growth is for me to sit with this discomfort. I’m finding it hard to not rush in and rescue them. I want to go there and fix it all. And yet… I know that really wouldn’t change anything either. What I really want is for my mom to be the type of caregiver I would aspire to. And it’s creating a waterfall of emotional baggage that is crashing around me because she’s not rising to the occasion. Again.

But hey… at least my garage is clean.

I’m here.

My parents didn’t evacuate even though they are under a mandatory evacuation. I pleaded with them to at least go stay with my sister since my mom just had surgery, has a PIC line and dad has dementia. They are still at home. I’m a bit hurt by it all… I’m waiting for my pain to turn to anger so I can just use it to detach. They did this during Charley to me… and I thought we had an “agreement”. And it angers me that they are just so reckless my feelings. I mean going to my sisters is not like asking them to stay at hotel. My sister lives in a beautiful home. It’s just they are like real old people and don’t want to leave their place. They know how I feel about this… and would it have been so freaking hard to just go to my sisters? No it wouldn’t. And this is the crap that family feuds are made of…

So we wait. And I stew in the worry and anger of their inertia and stuborness.

Good news is that my rentors evacuated. At least *they* had brains. And now I dont have to worry about that liability.

There are not many things my family can do that cause me to feel blinding white hot rage. But the one sure fire way to bring me to the brink, is to deny all logic and put yourself in harms way. Again and again my mom and dad do this to me. I don’t view their lack of inaction to prepare for potential catastrophe as simply inertia… Logically I guess I do grasp that truth. But on the deepest level – forged somewhere in the bond between parent and childhood, when they make decisions like not getting out of the way of a hurricane or not preparing well in advance… it feel like they don’t care enough about ME to do so. Their apathy stings me. It makes me feel helpless and I hate that! It feels like they are abandoning me – leaving me to twist in the wind with the love I feel for them. A love that is so powerful yet inadequate to persuade them to take action. The love does me no good… it simply tightens like a noose around my neck – threatening to suck the very breath out of me and leaving my to feel like a deep vacuum cavern.

I’m not being melodramatic ya know. Remember? Here we go again.

I said to my mom last night… please… just call and make a hotel reservation. If the storm turns or you decide not to go, then you can cancel it. But at least make the reservation. She dismissed me.

This morning, I called again at 8am when I woke up to the headlines of this being the strongest storm on record. She paid a bit more attention this time… but again, she was complacent. Told me that I worry too much. They did go get gasoline and some water. We made some half hearted joke about making sure they take an axe and some neon spray paint into the attic.

Then just awhile ago I’m talking to her and I guess I feel a bit better- knowing that not everything is falling on deaf ears. They did finally make a hotel reservation. So then I brought up her medicine. She just got out of the hospital from the amputation. She’s got a PIC line with a med that is only delivered every two days. My concern is that with a cat five storm, they will run out of the medicine. She might not even be able to drive to go get it. So I suggested she ASK about it. Maybe get a week or so of the powder to mix up herself just in case. And then she acts all insulted I would even THINK she doesn’t have this covered. (She doesn’t of course, but she wants me to think she does!) She informs me that of course the hospital is going to have at least a month of this in stock. Says it like she’s all knowledgeable and authortaive. Of course she’s not getting it from the hospital she’s getting it from an IV infusion company. And really… this is all academic. Because my question? How do you know mom? Did you ask? Are you going to ask? Just please ASK!

At some point, you have to come up with ways to cope with your family in times of crisis. I need to push away this feeling of abandonment I feel when they do not try to take care of themselves. I am not the parent. I can not force them to do anything. Part of me, wants to go to the “cut them off” method. Ok… you guys are adults and you just figure out everything on your own and give me a call when you can. But then the responsible side of me thinks that I need to be a grown up and try to work through this with them. That perhaps, something will sink in. And I guess I should feel happy at least the hotel reservation was made.

My life is just one big bowl of stress lately.

Of course the buyer for the house isn’t going to sign the contract till after the hurricane. I haven’t heard from him either. And I don’t expect to. I figure if the hurricane goes through and we are lucky enough to have no damage, then perhaps I might as well go down there and try to sell it. I’ll figure that out later.

Last night my sister called to tell me that my brother in law was going to have to go back into the hospital. He went on Monday, they gave him drugs but it’s not getting better. From what they describe, it sounds like he has an infection brewing and perhaps a few seromas. Anyway… the pathology on his tumor came back and they have no idea what it is. They are going to write him up in journals. But it’s so invasive; they don’t think they can remove it. So even though it isn’t cancer, they might have to treat it like cancer. They don’t know anything yet, but needless to say it’s very stressful. And he’s feeling like crap. And it looks like his mother’s breast cancer has metastasized. And his sister just got fired from her job because she was taking off so much time to help care for her mom. Life is just a bowl of cherries for them right now. I feel helpless to ease their suffering.

So my sister calls last night to tell me that they are going to have to take him back to Tampa and perhaps open him back up tomorrow (today). She can not take off anymore time from work and the trip to Tampa is 2 ½ hours. She can not lose her job at this point. So my mom had agreed to take him.

But of course NOTHING from my mom is ever just “given” because you have a need. There is always a price to be paid. Always. It’s like fucking clockwork.

So my mom calls my sister last night 20 minutes before she’s going to bed to basically “vent” about how she’s going to have to take my dad with her to Tampa because of his problems. (another long story) She goes on and on about my father and how his blood pressure out of control, his sugar is out of control, and he needs surgery.

How does this make my sister feel? Not good. Guilty. Needy. Sad. It sounds like my mom really doesn’t want to make the trip and she sure as hell doesn’t want to help. And it stresses my sister out.

My mom has a history of being what I can only call “an emotionally negligent mother”. She was not a good caregiver – especially in the emotional arena. We were taught early and often that if you needed something, you better do it yourself. Mom just was never there for us. In our family, my mom tells a story with pride about how she told her kids to stay outside; not to come in the house unless they were dripping blood. And there’s this story about how I sat on the front stoop squeezing my knee till blood dripped so I could come in. Mom, tells this story with amusement of course… I don’t tell her how empty that story makes me feel. How it feels like she is squeezing my heart like playdoh between her fingers. It never occurs to her that her job was to nurture us and soothe our booboos. *sigh*

My mom did not attend a single chorus performance, first day of school or a single school play. The message really was that I wasn’t valued and I was alone. I really felt emotionally abandoned. I am sure, that is why I resorted to food to fill me up where I felt so empty. Food was always there for me. Food would soothe me when mom would not – or could not — as the case may be.

So my sister and I commiserated last night. She lamented through tears her anger at feeling “dependent” on my mom and how she should know better. She was angry that she was needy. She was not only angry about the actual “trip” but more about my mom being so freaking wreckless with her emotional state to lay all this “dad stuff” on her lap when she’s already feeling overwhelmed. My mom just has no idea how what she says and does effects her children. She just can’t be there for us and it still, even as adults, angers us to the point of wanting to scream at her to catch an emotional clue.

What was really sad was that my brother in law, seeing how upset my sister was by mom’s phone call — called his sister to take him. He too is learning to not be dependent EVER on my parents. She who just got laid off, is caring for their dying mom, and has no resources… is going to drive 3 hours to his house then 2 ½ hours to Tampa just so they don’t have to depend on my parents. Because it just feels so “icky” to take from people who obviously don’t have the capacity to give.

To say I’m angry? It’s an understatement. Sometimes I wish I could choose family like I choose my friends.

There is something I try to do occasionally. Slow down time. If you don’t measure time in minutes but rather in moments, you really can learn to slow it down. And then there are the times you want to speed it up. Like my sister did yesterday.

My poor sister. . I really feel like the resources at my disposal are inadequate to ease her pain and suffering. And I hate feeling inadequate. But wait.. this isn’t about me.

The doctor told my sister that if my BIL’s tumor was cancerous, they would do the surgery all at once. They would remove the tumor from his butt cheek, lower back and thigh and then flip him and remove it from the pelvis. However, the doctor was hopeful they would only have to do the backside and it would take no longer then 4 hours.

Well so now we get to the surgery yesterday. After five hours, and being told that the surgeon would send out the nurse to let her know how it was going… there was no word. At 5 ½ hours, my sister was in a full on panic. The OR nurse said that “they would be out to talk to her soon” but she could get no additional information. She pleaded with the OR nurse to just tell her “is he on his back or his stomach?” Figuring if she heard he was now on his back, that cancer was probably found.

Finally, the doctor came out. He told her that the initial path report was that this wasn’t cancer but the final report would come back in a week. He called it “sticky” and said the tumor was really hard to remove. He thought it started in thigh and since BIL is so muscular, that it was “compressed” and went up higher in the leg searching for room to grow. His butt is muscular too, so then it moved to the pelvis. And that’s where it found room to grow. They were only able to remove the tumor from his butt and leg. The pelvis will wait for another surgery.

Pain control is an issue since they had to cut through so much muscle and dig out the tumor. The morphine drip isn’t cutting it. I suspect that if he has another bad night to tonight, they will consider an epidural.

He might have beat the cancer rap, but his mom has not been so lucky. The week his father died he found out she had late stage III, stage IV breast cancer. That is another long story but she has been through a handful of rounds of chemo and is not doing well. Her immune system is just nonresistant and she’s suffering with infection after infection. She’s back in the hospital with what they think is pneumonia. But I heard this morning that they did a “Thoracotomy-something-or-other” and they took a whole liter of fluid off her lungs. They called her pneumonia mild. Either that fluid is cancer metasis or the pneumonia isn’t mild. Either way, doesn’t look good. She’s very young too, only in her late fifties. And Jim’s father who was 57 died only months ago. He doesn’t know about his mom yet. He knows she’s back in the hospital but he doesn’t know that it’s looking like cancer metasis.

They are focusing on the immediate crisises. Like how to get BIL home in a car when he can’t sit for that long. How much time my sister will have to take off of work. She is working per diem and doesn’t have benefits. So when she’s out of work, she doesn’t get paid. And they just bought a house. And they are worried about his job. He works 32 hours for FedEx and so he doesn’t qualify for FMLA since he’s not at 40 hours. Funny how that all works.

So prayers continue. We hope. We are very happy it doesn’t look like cancer for BIL. We are praying for his mom. We are praying for his next surgery and we are taking one day and one crisis at a time. I say this “we” because I want to be involved and make it better in some way, right? Perhaps make choices easier, perhaps speed up time, perhaps simply be a listener. Again it all seems inadequate. I just know that I want to take a steam roller to their rocky road and smooth out all the bumps on this road less traveled.

I had an interesting conversation this morning with my mother. We were discussing how her sister was moving down to help with her mom and how Grandma is a bit stressed by it. Of course it’s a big change and my mom does things for my grandmother that her sister probably won’t do. Things like doing her hair and cooking nice meals. Her sister just doesn’t have the same skill set.

As the conversation progressed, I made mention that even though her sister was going to be here, it didn’t mean that she wouldn’t be around to help Grandma. I mentioned that perhaps Grandma was worried that things would be like they were before, before she was dependant. That perhaps, Grandma thought that mom was viewing her sister coming down as a “get out of service free card” cause my mom never visited my Grandma to maintain the relationship before. My mom got all huffy and chimed in that she visited at least once a week. I suppose she got a bit more upset when I used the words like “delusional”. I don’t know why I picked this to go into now… really I don’t. I regretted it as soon as the words were out of my mouth. (more…)

Quick post because my husband is watching my kids so I can work on PTSA stuff. I can’t believe the end of the summer is here already. I don’t feel like I ever got a break from the PTSA. Can I just say… I’m sick of the PTSA?

Anyway… life is marching along. Stuff with my family isn’t great. It’s really a long story but my BIL has an aggressive Lipoma that is huge. Covers from the small of his back through his buttocks and down his thigh. Huge. It’s impacting organ systems and wrapped around his pelvis. They don’t really know how much internal damage it has done and he is going to have surgery on the 19th. At that point, we’ll find out if it’s just a Lipoma or a Sarcoma. They are hoping that there won’t be too much muscle damage or nerve damage so he won’t be crippled. He’s only 32.

Then yesterday my mom tells me that her other foot is bothering her more then the foot that’s going to have the toe amputated. This is not good. It’s so obvious to me that she is heading down a road of decreased mobility and possible further amputation. She sees it, I see it, and it is a dark sad road.

Anyway, this throws a wrench in our plans on going to Hawaii in Novemember. Now we need to wait and make sure my mom will not have to have more surgery. She was going to fly out and watch the kids. Maui is calling to me… but perhaps it’s just not meant to be.

Good news is that her sister is moving down so at least she will be able to help take care of my Grandmom. That task has fallen completely on my mom’s shoulders and now this will hopefully free her up from the excuses of not taking adequate care of my dad or herself. Yeah. I know. But hope does spring eternal. Anyway, my mom’s sister moving down was the reason mom was going to be able to come watch the kids. Because she was going to be free from Gramma watching duty.

In other news, my father’s blood sugar seems to be coming under better control now that they are testing it 4 times a day. What a surprise. I spent an hour yesterday talking to my dad about his health. Let’s just say that you can’t use logic with someone with dementia. I love him, but he’s so hard to deal with sometimes.

Gotta run. John is watching the kids so I can have a free block of time to work on PTSA stuff. And I need to stop procrastinating and just do what needs to be done. Push through the pain. Stay focused.

If you don’t like family dysfunction stories… don’t click the link

(more…)

How do I spell dysfunction?

M-Y - F-A-M-I-L-Y!

Dial back a week. My grandma had her son and their kids visit. Her son, a chef, took the rack out of the oven and put it up against the wall. My grandmother, who bruises easily and is in her late 80’s, hit up against it and it fell on her leg.

Fast forward to a few days ago. Cellulitius has set in. She has a huge hematoma. Gramma can’t walk on it.

Last night (few nights ago now, this post was written earlier), my mom called me to tell me that her mom, my grandmother, is in the hospital. Infection set in and they had to operate. Gramma now has a big gaping wound to her bone that will have to heal from the outside in. Long slow process. And let’s face it; this isn’t the kind of thing a person in their late 80’s bounces back from. I’m very concerned. There is a chance she might not make it.

And my mom goes on to tell me that her sister has flown down from NJ. And that she’s been at the hospital for more then 48 hours. I give her the appropriate validation on what a good daughter she is and how we all appreciate how she’s helping Grandma. She loves being in the middle of a medical drama. I can’t describe it. It’s like some scaled version of Munchausen by proxy …but that’s another post.

And then I ask if they have told Robert. Robert is the one who left the thing out of the oven. Nope. Not going to tell Robert. In their view, why burden him? Why make him feel guilty? My view: What if she dies?!! Mom rationalized it all away by telling me they will tell him if “it gets that bad”.

It all comes down to that they don’t want to tell him because they do not want to deal with the emotional fallout that telling him will bring on. Avoid emotion at all costs. That is my family.

I can’t stay quiet about this. All I said was “Mom, you guys should not withhold medical information from the other children. He has a right to know!” And she sighs and tells me how tired she is and how she doesn’t want to go into it and how she didn’t call me for a lecture. She said, “Grandma doesn’t want him to know”. Well… too freakin’ bad! They are making the decisions now… Gramma is on Dilaudid. Just tell him!

My family pulls this crap all the time. They use information like power. They distribute the information based on how they think it will be perceived and how difficult it will make their life for others to have it. If it’s information that is going to illicit an emotional response, they opt to not share it. The emotional response can then be avoided. They don’t think of the long-term consequences of their “dole it out as you see fit” mentality. They don’t think about how their choices make other’s feel. They don’t think. They don’t feel.

My grandmother is close to being septic. She has periods of lucidity right now. Maybe if something happens, and my mom told her brother now…he would have time to make sure to talk to Gram before she isn’t able to tell him “it’s ok, I don’t blame you”. Time is the gift here and it’s the gift that my mom and her sister are taking from their brother.

I’m trying to not “be involved”. I count my blessing everyday that being 3000 miles away makes it all the easier to detach. But it’s still not easy.

It’s during times of great trial that you see people’s true colors. And when the times of great trial are with your family, the true colors are usually in the form of a glaring white bright light. Coming from a big mirror. And the reflection glares right in your eyes and travels deep down to your soul sometimes. And oh let me tell you. It burns.

My family is not good at the whole support thing. Everyone’s MO is to never appear needy. Never actually be vulnerable. Just retreat into your quiet space and when you come out of your funk, pretend everything is ok. We are all so good at it. Masters.

We all learned this very early. It’s been passed on for generations. I know as a mom, I am trying to break the cycle with my own children, but let me tell you… it’s not easy. It requires that you believe that a person will be there for you no matter one. Not “detach” when the going gets tough. It’s very hard to break the cycle of detachment. Detachment works so well. But those around me pay such a high price for this coping skill…

Anyway….

One would think at times of death that my family would reach out. I mean we do all love each other. We do. It’s just that some of us have trouble showing that. And others of us have trouble accepting demonstrations of that. So it’s really a dysfunctional dynamic in which to try to support someone. Then you add to that all the years of emotional baggage and people’s idiosyncrasies. And God. Hey, I’d like to go ahead and use my “Get out Hell jail free” card.

Of course I like to think that I have evolved past them. That I, can accept help better then they can. But in truth I don’t. I mean I can accept it better from other people. But from my family? Oh no. I practice detachment from them with a capital D. I mean hell, I live 3000 miles away from them all so I can be in full retreat mode all the time. But I am better at giving… but I just need one of them to be better at receiving.

Anyway, in talking with a friend today, they asked me what I would want from my family if I was sad and suffering. What could my family do to make me want to accept their support during a difficult emotional time?

I’m not sure of the answer. How does one overcome 30 years of baggage? Well I have a quick answer. I’d want them to leave me the hell alone and let me be. But that isn’t the right answer now is it? The right answer, the healthy answer has something to do with unconditional support, being non-judgmental, reaching out, and actually showing emotion.

*sigh*

(makes notes to self)

My sister just called me. The sister who’s doing cancer research. The poor one. Doing her post-doctorate. The youngest. The one that got married last April in Vegas. The one that drives a Neon with more then 100K miles and is on it’s last leg. She just won a car in a raffle. Not just “any” car either. Are you ready?

A Mercedes Benz C Class 240 Luxury Sedan. Wow. Yay her!

She has to go to RI to pick it up… and I think she’s going to keep it. She’s figuring out the tax implications and cost of ownership. Yes yes yes. I kept my big mouth shut about the practicalities of it all. I just let her beam and gush. I gushed with her. I know how to do it. She just wanted me to be happy for her. And I am. I did not point out that her insurance is going to triple, this will add to her income tax basis (almost doubling it) and it’s not really a great car for hauling around two huge Great Danes. Yes, I know when to keep my mouth shut.

Ok I usually do.
I did this time.
Shut.Up.

Dear Mom,

I’m so sorry. I know that you really had high hopes that this medicine was going to take care of the MRSA infection in your bone. I know that you must be really reeling from the news that you need to make some decisions on the amputation of your foot. I know you are weary of this whole process and in some way this might even be a relief. Until you stop and think about what life is going to be like without a foot.

It’s going to be ok mom. We’ll get through this.

It sucks doesn’t it? That after going through the weightloss surgery DS, getting rid of your diabetes, losing over 90 lbs and having your life back that you still have to deal with the repercussions of what obesity did to your body. Diabetes sucks. I’m so sorry for the neuropathy. I’m so sorry that diabetes screwed up the microcirculation in your bones so bad that there just aren’t enough capillaries in your marrow to even deliver the antibiotics to fight off this infection. It doesn’t seem fair.

But it’s time to make a plan. I know that you must feel incredibly overwhelmed right now with Dad’s Alzheimer’s diagnosis being confirmed last week. I know you are worried that you will lose your mobility and you will have no one there to help you. You are taking care of your mom, and daddy and who will be there to take care of you? It’s ok to not be strong all the time mom. I love you and I can be strong for you. Give up some of the control and let your children help you through this time. This is what family is for. You don’t have to be the strong one. We can help you. If you need me, I am on a plane tomorrow. And if you just need a shoulder, I am here for that too.

I just wanted you to know I’m thinking of you today. That I am so sorry that you are facing this surgery and medical decisions you hoped you wouldn’t have to face. But you’ll get through this. We’ll get through this. And the important thing is that you will still be around to live life and be part of your grandchildren’s lives.

I love you mom. I’m sorry life sucks right now. I am here.

Love,

–Kym

As I reflect on the loss of Christopher Reeve, I can’t help taking the information of how he died to heart. He had an infection from a pressure sore, he went into cardiac arrest, then into a coma and died. He was 52.

My mom is battling an infection in her foot. Although I do believe it’s important to try to fight the infection, one has to wonder what information helps you make a difficult vs. balanced choice about amputation vs. trying to save the foot. How much risk is this infection to her system? If her sediment rate is dropping (showing the infection and inflammation is going down) is that all we need to worry about? Were there signs of impending doom that Reeve’s doctor’s missed? I mean in this day and age… its scary to think you can die so fast from infection STILL.

I dunno. Seems every doctor has a different suggestion for my mom. How do you know who’s right? And how do you know who’s competent and really has her best interests at heart? The surgeons want to cut. The medical doctors want to give her drugs. Who’s right?

And the tradeoff seems pretty scary if we pick the wrong route. And this is why I can’t not research about medical decisions. There just seems to be too many variables to trust a person or a couple of people to know the answer and do what is in my family’s best interest. Yes, I know that makes me a control freak. But seriously… who else is going to advocate? What’s in the doctor’s best interest is to find the “easiest” way to fix it… and sometimes the easiest isn’t the best.

Two weeks ago, when my mom realized that a bone was pushing through the bottom of her foot, she went to her doctor who happens to be an Orthopedic Surgeon. This bone had already been removed in her other foot, it’s “genetically” an extra bone our family has and it has caused her problems in the past. Anyway, there was fluid built up around where the bone was pushing through. The body’s way of trying to cushion the spot, I suppose. When the blister opened, the fluid was clear.

The after the weekend, my mom went to the doctor. He decided to operate to remove this bone. He didn’t put anything on it. He didn’t give her antibiotic. He knew previously he took out this bone on the other foot and so he assumed this was the same course of action he would take on this foot.

Two days later, the fluid was not as clear. Mom asked the doctor if she should be on antibiotics. He said no he’d just clean it out when he operated. My sister told the doctor she thought this was a mistake. Since my mom has had infection issues in the past, the fluid had changed color, the area was red… she felt he should start her on antibiotics 3 days before the surgery. If the culture came back she needed a different antibiotic, fine… but at least get her on something. He disagreed. My sister told him “I don’t agree with you, but you are the doctor”.

She had surgery. Didn’t look infected. He irrigated the wound with antibiotics while she was under. They cultured the fluid. Still no antibiotic.

Three days later they find out it’s MRSA.

Doctor put mom on an ORAL antibiotic and tells her they probably need to amputate. Tells her to go see an infection disease doctor.

Mom calls back and tells them that she thinks she should be putting something “on the wound” since the blood supply is crappy there until she can get into the Infectious Disease Doctor. I mean… antibiotics are only going to work if the blood supply can deliver them to the infection. He says no. I suggest to her to ask him for IV antibiotics. Since my mom has had weight loss surgery…who even knows if the antibiotics are being absorbed the same way they would in a normal person. I did a whole bunch of Internet research and I really felt like she needed to be on an IV. He declined that too.

Now I think this doctor is a complete asshat.

This morning my mom went to the Infection Diseases Doctor. (First available appointment). He put her on an IV IMMEDIATELY. He’s treating AGGRESSIVELY. He’s listening to the family and to the patient and seems to at least be trying to save her foot.

The point is… we should have told this other doctor to go jump in a lake many moons ago. All the warning flags were there. Truth is, we didn’t because we all tend to think “they are doctors they have the knowledge”. But they don’t . They aren’t a God. They make mistakes. This guy is a surgeon and his solution to every problem is always to “cut it out”. You have to keep in mind what type of doctor you are dealing with when you are seeking treatment. Where is their mindset?

It’s so hard though when you are in the midst of a medical emergency to think about who all you need to consult with, what you need to research, what stones need to be turned over to find the most effective care possible.

It’s like when I was considering weight loss surgery. Any doctor I talked to about weight loss surgery just told me about the stupid Carnie Wilson Surgery. Well… if I had simply “taken the doctors advice” I’d be stuck with a 2 oz pouch and not able to eat chocolate for the rest of my life. What kind of quality of life is that? Because doctors when you consult with them only tell you about what types of surgery “They do”. They aren’t telling you necessarily what is best for you. Thank God my control freakish nature caused me to research different options.

It’s sad to think about, you really have to think about buying medical care like you buy a car. You wouldn’t expect to go to a KIA dealership, tell them what you need, and have them recommend you a Lexus SUV. They are only going to try to meet your needs with the options THEY have available, even if they know something else might work better for you. You yourself have to be KNOWLEDGEABLE about what your options are and not be dependent thinking someone else is going to spell it all out for you just because they hold the knowledge. If you aren’t knowledgeable or do the work to become knowledgeable about your different options … then you have to be happy with the substandard.

And substandard isn’t bad until you find out it’s substandard. I guess ignorance really is bliss.

My house is really clean when I am under stress. I have a compulsive need for order and neatness when my life is in utter chaos. I wonder if that means I have mild OCD?

Last night, I spoke with my mom’s sister. She told me that she has a mass on her adrenal gland. So let’s recap yesterday:

1. Sister failed the Dental Licensure Exam
2. Mom found out she has MRSA
3. Dad lost another 2 lbs.
4. My grandmother needs to be moved to an Assisted Living Facility, yet no one can actually “do it”.
5. Aunt told me she has a mass on her adrenal gland.

All in all… it was a pretty shitty day.

I thought a lot about everything last night. I researched all the different types of amputations. I then started trying to figure out what is going on with my father. I found plane fares are reasonable if I have to fly there at the last minute.

I called my sister this morning and we set up a plan for dealing with my father. To try to start figuring out what is going on. She’s going to get a list of all his medications because I am wondering if he’s simply out of balance now that he’s lost so much weight. That could be what is making him nauseated and lethargic. Metformin can make you feel like crap if you are taking too much (especially on top of insulin). He might not need as much blood pressure meds. My sister and mom are going to start keeping track of how he feels and his blood sugar. His blood pressure should be taken regularly. We need to monitor his caloric intake and see how many calories a day he’s consuming. It is possible that his dementia is causing him to become a bit anorexic. This “not eating” could be in some way his way of controlling what little he can in his life. I’m sure my sister just loved me dumping this huge to-do list on her on top of everything else she’s having to deal with.

My mom has started on an antibiotic. We are hoping the MRSA is responsive to it. It shows as sensitive to it, but the problem is that any meds that get into the blood stream need to be delivered to the site where the infection is and her microcirculation is so bad… we aren’t sure it will be effective. But I think this time she’s going to try to fight to keep her foot. Previously, she just let them amputate… now I think she’s going to try to “slow down her surgeon” a bit. I’m not sure this is the right course of action… but saving her foot seems like a noble goal to me.

My father called his brother and told him to get his mother OUT. They think she can handle an apartment, but she can’t. So that is stressful. I think they think my parents are like big whiners. They have no idea how bad its been. They simply see my grandmom up and walking around and assume she can take care of herself. But she can’t. She can’t even use the microwave. I guess they’ll figure it out right? Least things are moving forward. Looks like progress, quacks like a duck, so we’ll call it progress.

So we are making small baby steps. We have the illusion of control. It’s really hard to be so far away and not be able to be there “doing things”. The control freak in me just wants to swoop in and handle it all myself so it’s all done “right”. Heh.

My mom has MRSA in her foot again. MRSA is a Staph infection resistant to most penicillin’s. This means she will most likely face some, or all, of her foot being amputated. This is devastating news. She’s only 57.

Perfectly crappy news to end a perfectly crappy day.

Contain your excitement kids… Cause I’m HOME!

Nothing like traveling to Florida and being surrounded by family to reaffirm for me why I live on the other side of the country.

Don’t get me wrong, I love my family. They are a great group of people… But they are very different from me. Being around them can be somewhat exhausting. And I have to admit, that several times a year it enters my brain that I should leave this beautiful Pacific NW and move to Florida. The cost of living is so much less expensive there… But I know now, I could not do it.

I am bone tired and have no less then 15 loads of laundry to do, spent $300 grocery shopping and have 5 lbs of mail to sort through… but I’m so glad to be here. From the depths of my soul the title of this post (and a well known cliche) hold so true: There really is no place like home.