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July 20, 2020

Mama is Covid+, we must Quarantine!

Mama is Covid+, we must Quarantine!

Faced with an awful trifecta, J Smiles and Zetty must quarantine for two weeks with zero additional caregivers. The stress is compounded when Zetty returns from the hospital less healthy than when she went in. J has to throw old tried and true measures out the window and learn new tricks to get her mom's recovery started. J shares examples of hard learned "what works" and "what does not work" with grueling detail. J formulates new methods galore - medicine, food and hygiene.  Be ready for a wide range of emotions. This episode's Snuggle Up is a powerful plea aimed at helping others avoid this fiasco.

J Smiles really delivers on products and services to caregivers consider:
http://purewickathome.com (noninvasive female catheter)
http://parentgiving.com (general product website)
http://prevail.com  (we use women's overnight ALL the time)
http://tracyecarter.com (Zetty's chef)
https://www.nytimes.com/wirecutter/reviews/best-bidet-toilet-seat-washlet/ (ny times bidet toilet seat article)

Let's get to a CURE - Pls donate to Alz. Assoc.'s  The Longest Day:

J Smiles:

It was a Friday afternoon, Sunny, perfect temperature. I was picking my mom up from the hospital. Finally I'm getting my mom back. She still was positive for COVID I didn't care. I'm getting my mama back on the way home. We're holding hands. She's singing Aretha Franklin temptations, the Four Tops. We're having a great time. There two steps in the garage, going into our house. At the top of the second step. She got a little winded no big deal. She's just getting out the hospital. So I put my knee up under her butt or bum as they say in Canada to let her rest a bit y'all she screams and then it looks like she's fainting a little bit and like oh my goodness is this that vasovagal thing because I hear a little bit of gas coming out and as a little bit of a stench that might be a bowel movement coming out. But anyway, my business manager Moquita with me She helps me eventually get my mom to her room. We get her in the bed, y'all. When I get my mother's clothes off, and I proceed to clean her her entire genitalia, her entire buttocks, her inner thigh, her vaginal area, raw red cut broken skin blisters. I'm speechless. We're quarantining me and Zetty. She's positive public policy. CDC guidelines say no caregivers can be with us. It's supposed to be me and Zetty, what am I going to do? Parenting Up- caregiving adventures with comedian J Smiles it's the intense journey of unexpectedly being fully responsible for the well being of my momma for almost a decade. I've been chipping away at the unknown, advocating for her and pushing Alzheimer's awareness on anyone and anything with a heartbeat. Spolier Alert - I started comedy because this stuff is heavy be ready for the jokes. Caregiver newbies, OGs, village members trying to just prop up a caregiver, you are in the right place.


Hi, this is Zetty. I hope you enjoy my daughter's podcast. Is that okay?

J Smiles:

Today's episode COVID positive, quarnatining, and caregiving. Let me be clear, and very honest, I knew that we would have to quarantine. The CDC and everybody on planet earth have told us for months that if you test positive, you got to go sit in the closet in the dark by yourself for 14 days. Got it. I knew it would be JG and Zetty no problem. And the way I run my mother's care is that she has one caregiver per 12 hour shift. So whether it is a hired caregiver, or there are times when I have a shift for 12 hours either way Zetty gets one on one care, so no problem. JG was about to have a whole bunch of 12 hour shifts. All right, cool. And the plan was I would have my groceries delivered. I had a series of friends and family members that were on deck to drop off food, Bailey's for my coffee. That's the standard. So I had a plan. What I did not plan for was my mother's genitalia to be in such bad shape. Oh, wait, let me just stop right here and say in eight plus years of my mother having Alzheimer's and in the last 18 months to two years of the incontinence becoming an issue and growing to where it is today. She's never had a blemish. Okay, I am so proud of the fact that my mama's bottom look just like a face. All right, smooth as silk Okey dokey until recently, and she's been in the hospital before. She's been in the hospital for UTI before this notion of this much breakdown in skin irritation happening between a Monday and a Friday. I didn't know that could go down. I was talking to the doctors and the nurses every day, multiple times a day. Nobody even mentioned that there was so much as one area of irritation. I was fully unprepared for what I saw once we got home. It wasn't written up in the discharge papers. There was no medication, no ointment, no powder, no cream, no nothing given to me when we came home. So I was like, Whoa, that is why that poor baby screamed out when I put her on my knee walking into the house because imagine this area of her entire genitalia, being that inflamed and raw with broken skin and then there is excrement and urine. Unfortunately, I am intensifying this discomfort by placing her over my knee on my thigh. And because of it, y'all, she wasn't able to walk. Right? The pain was so intense. She wasn't able to walk. And I do believe they just had her laying in the bed for almost a week. Right? So then she was her strength had dropped quite a bit. So then it was obvious to me even within that first hour or so at home, that she wasn't going to be very mobile. So if she's if she can't really get up and walk around, and if I can't get her to the toilet, and if I can't get her to the shower by myself, what am I supposed to do? How am I going to make it through this quarantine period and keep her safe, right? What am I gonna do? Well, you've heard about her in episodes 1,2,3 Part Four, Christine, that's who I called. Listen, by the time I was taking my gloves off from getting her clean, getting my mother cleaned up. I was like, huh, I had my business manager contact Christine. I said, listen tell Christine I know I said I wouldn't need anything but her to drop off stuff, but my mother's in much worse condition. Because Listen, y'all, my mama was walking when I took her to the hospital. I expected to get back my mother in the same physical condition as when I left dropped her off, but she wasn't. She was in much worse physical shape. She was much more frail, needed much more care, and she needed much more observation. Y'all, I had my business manager Moquita, I had her call Christie. I said you tell Christine that she, I cannot do this by myself. I know I cannot. I'm not even trying to be Superwoman. I need her to you know, take a second to pull ourselves together, gather her things. Talk to her family and her children, get all her gloves and masks and gather her things and prepare to come over. I don't know how long she needs to stay, but she got to get here tonight because I got to figure out a plan for tomorrow. But tonight, this night, she got to come help me with my mama. My mother's eating needed to be modified too. I noticed that she needed much more assistance than when I took her to the hospital. I needed to feed her pretty much every meal. When I took her to the hospital. I would say I was probably really just needing to feed her breakfast while she was in bed, but she would eat lunch and dinner on the sofa. But now because her genitalia was in such bad shape sitting on the sofa was not really an option. There were two main reasons- the first thing is that she really could no longer wear underwear. Now she doesn't wear standard panties anymore. But because there was a point when my mother was beginning to be incontinent, but she still was pretty clear with language and she didn't like calling them depends or adult diapers and out of respect for her dignity, I continue to call them panties because they are right. That's what they are, they're her panties just because they happen to have cotton in the middle of them does it change their purpose. So I still call them panties even though now she has no idea the difference between a panty and a shoe really. Anyway, I digress, but because of that area of her body her genitalia so sensitive now I can't pull anything up in that area. Any portion of elasticity around that area of her thigh between her thighs and her genitalia and her buttocks, that's too much. So what I'm having to do is pretty much I'm ripping the sides of her panties. I use Prevail, p r e v a i l and I'll put that in the show notes, prevail is a brand of adult incontinent briefs. I found them on parentgiving.com, which for me has been one of the more useful websites for kind of any and all things that have to do with caring for a parent that has an elderly person is called parent giving. I guess they don't really have to be your parent right they could just it could be an uncle or Auntie or neighbor which is someone who is older and they have needs. You need supplies that you can't really find at the grocery store or the drugstore very easily. Anyway prevail is what I use. We are way past something like depends, they just aren't absorbent enough. So I split the prevail on the ends, and I just kind of sandwich them between my mom's legs. But not all, I don't push it all the way up because then that way it catches whatever her body releases without causing too much tension on her skin. But that still is very hard for her if she's sitting down on the sofa. So she's had a lot of meals in the bed since she's got back from the hospital. She's been having a very difficult time recalling what to do with the fork or what to do with a cup or a straw. I don't know why that is, I don't know if some of those memories will come back or not. I have been told that sometimes it's just the shock in the change, that the further along the Alzheimer's goes, small shifts can make a really big difference and it can be very startling. And because my mother was in the hospital for five days, in a room by herself because of COVID there was no one in the room with her ever. I wasn't allowed to be there. As I said in Episode 11, the hospital was understaffed, so they didn't have a sitter in there, so she was left for her mind to simply wander and never be redirected to any semblance of reality or reasonableness. Who knows, but right now, when it comes to eating, I'm having to feed her every morsel of every meal. All medicines are now having to be crushed and mixed in with the food. Prior to her going to the hospital some were still being swallowed. But now I don't care if it's a vitamin or if it's her blood pressure pill, having to pulverize it and sprinkle it, okay. Everything is a sprinkling or smattering. I'm crushing stuff. I'm pinching off stuff. I feel like I'm a teenager again, in biology lab. Some of it is pink. Some of it is yellow. Some of it is white. Some of it is powdery. Some of it is chalky, as you know i have on gloves and a mask. It feels a little bit like chemistry sometimes too. And I'm like wait, am I qualified to do this? Is this legal? Am I a drug pusher? Is this going to be a chemical explosion? Can I put this yellow powder on top of these bits and pieces of spinach and sauted chicken wings? Like is this going to be okay and wait and then thank goodness. I'm like you know what a little bit though, thank goodness my momma has Alzheimer's because my regular real whole healthy mama would not consume this concoction. She would absolutely call bs on me and know that this doesn't taste right and it doesn't look right, y'all should see it okay, because I have to layer it. Okay, because first thing is I have to put it on a spoon so big it might as well be a gravy ladle it's so wide and so deep. Because, at least in my mind, I have to layer it with so many different textures and flavors of food, trying to hide the texture and taste of the medicine because some of the medicines are like gel caps and they're liquidy. Some are caplets I guess where you open it up and there's like little beady things that looks like more like dippin dots ice cream. And then other ones you crush, it's like a powder looks like sugar, but it don't taste like sugar. Or maybe like I'm a chef but not or maybe I'm a pharmacist, but Lord knows I'm not but anyway. But it really is a method to it on the spoon I have to put at the bottom, something that is slippery enough that it won't stick to the spoon, but it has to be tasty enough that she'll really want to get it off of there with her top lip. I'm telling you, I done been through this. I done been through this for some weeks now. And then the next layer has to be whatever the medicine part is and then you need another layer of something that's kind of tacky that's gonna stick to the medicine part. Okay, but be thicker than whatever the medicine is when I say thicker i don't i mean basically, I really mean opaque so she can't see it, right? She can't tell it's a different color. Or at least so much going on that it looks just like an amalgamation or land yap little this little of that. That's a little bit about creole side. My Mama's Mama was creole. Oh, and that's how I get everything down in pretty much in a gravy ladel in a big old spoon, that's how we eat our protein. So it could be salmon. Or it could be chicken wings. It could be gravy or rice or we now are doing mashed cauliflower versus we don't do potatoes anymore. And my mom's meals are made by Tracy's culinary creations, I will also put that in the show notes. She is a phenomenal chef. She's also available on the internet and she has stuff at Whole Foods. Anyway, the bottom line is the longest part of every meal is me with these potions and elixirs. Each in every spoon is a is a whole nother experiment of Okay, what did I put on the last one? Let me try to mix these things up and mix in mix up the flavors, tastes and textures, so she'll take it right because she is real fast to make her lips tight and go. And then she'd look that by one open her lips. She just won't open and what are you gonna do? What's she going do? The trick for me is oh, I can't let her not eat not only is she not getting nourished, but now the food is the medicine. Food is the medicine. Trying to keep her genitalia clean has been the most challenging part because it's a double edged sword. You need to keep her clean and dry, so that the source can heal. But every time you touch and clean, you are irritating it even though you're cleaning it you're still irritating it because you cannot be tender enough for her. Her skin is thin because she's older and her sensitivities are heightened because of the disease and the rash and discomfort. The condition was out of control and on a level 6 million thousand. You got the ointments and creams; oh, by the way, I did call back that same day. Once I got my mom settled and cleaned and I talked to the charge nurse. She was very apologetic. She said that she would talk with her team and with management. Because I let her know that I picked that hospital on purpose over and over and over again for years for my mom, because of the phenomenal care I've received with their nurses. This has never happened before. This is the first time my mom and ever been on that floor. My mother was typically on the neurology floor this time, she was not on the neurology floor. I don't know that about these people or these nurses. But that's ouf I tell you what, she will never be on that floor again. And it really hurt my feelings because she was on the fifth floor this time and five is my favorite number. Five typically doesn't let me down but this time (yuck) garbage. Anyway, I digress. back on topic. So the charge nurse was very apologetic. She called the physician at the time who was on call, who did call in some medicine that we were able to start to use for my mom to treat the her. I don't even know y'all I keep stumbling over it because I can't just call it a rash. Like it's just there are multiple things like if it's a rash, and broken skin and a cut and blisters like I don't know what you call that. I mean, you call it F'd up, that's not a medical term. Okay, really, what do you call it this lawsuit, but I'm not even trying to do that right now. This is about caring for my mother and taking care of her. That is the hardest part because she's my mom and seeing her in pain every time if she urines urine (hahaha) when she urinates, or when she has a bowel movement. As soon as any of that touches her skin soon as it exits her body, there's pain. And then as soon as I begin cleaning it off, there's more pain. And then as soon as I apply the ointment, there's pain and then when I stop touching it, there's still the ripple effect there's the reverb of the pain. You feel what I'm saying there's the throb so to speak. That is so hard to watch y'all you know what I'm saying? And then within an hour to an hour and a half that poor baby is happening all over again. So how is there even enough time for healing to be happening in what I would call an appropriate period of time it's not really, right. So yes, she is healing but man it's taking too long. Taking too long for me, taking too long for her. It's really taking too long for Chris. I think a couple times Chris wanted to fight Christine. Chris wanted to fire me not that I'm doing a poor job, but just she cares so much for my mom And another thing I want to say is that this area is so huge on my mom and it covers such a large part of her buttom, buttom (hahaha) of her bottom and buttocks, inner thigh, vaginal area, that it looks like a birthmark. Okay, it is easily 12 shades darker than she is the home health nurse that came says not gonna go back. Y'all it is a mess and when I tell you that I am proud is one of my best accomplishments that that baby had never had any kind of skin breakdown like this before. And now it will be hard to believe that all of that came from a few days at the hospital, but it did. Anyway, this area has slowed down her physical activity as well. We haven't been able to build up her strength, her endurance because walking is painful. Sitting is painful squatting, you see where I'm going with this. Kind of do like your little leg lifts or toe raises all of that hurts moving her legs hurt, any of that hurts. And then obviously if you walk a little bit, you would normally want to sit down rest for a few minutes, get back up, keep walking. We can't do any of that pretty much she needs to lay down in order to not put pressure on the area that's jacked up. Which then means we really can't have her use the toilet in two weeks. My mom has probably actually properly used the toilet three times. Why? Because cleaning her while standing up is atrocious okay because gravity is not on our side. And it's so painful for her. I mean, it's excruciating. She's screaming, and I don't want to do it. She's screaming so bad, I'm like you know what? We just walked back to the bed. We put in a bed in the night and give her some Tylenol. Y'all, what I'm telling you is my mother has been in so much pain from a normal bowel movement or elimination of urine that I've had to give her Tylenol from it touching her on the outside. Y'all know that's not right. That ain't right. That ain't right. I have give it her the Tylenol, lady calm down, and then keep cleaning. Even the wipes with the soothing aloe, soothing aloe is currently irritating my mama. Another trick that we typically used if she had an incontinent spell would be we just pop her right into the shower and just kind of, you know, rinse everything. Well, the shower is very short step that used to not really be a problem. But since we've got back from the hospital, this three and a half to four inch step up is now an issue. We are not trying to add to it. When she's had these, I'm going to call them tremendous bottom blowouts, she's in so much pain, which then enhances the confusion and the intensity of her moment of distress. Talking to her to get her to step into the shower becomes a futile exercise. Therefore, that trick is removed from my toolbox of cleaning her. So again, we are back to let's just get in the bed. Why do I keep mentioning this because my carbon footprint. Since my mother has come back from the hospital this last time, y'all it is the size of the Grand Canyon. I have used so many bed pads and gloves and wipes and tissue papers. I want to write myself a ticket for something now I'm putting everything that I can in the recycle bin. But then the recycle people that I pay for it to come to my home to pick it up them fools haven't come in the last two weeks. I sho did, put a call into them say I'm sorry, but I needed to complete this stuff. I feel like oh, em gee, I cannot believe how many products I'm going through because I'm having to do all of the major cleaning of my mom in the bed because the toilet and the shower are no longer adequate options because those nurses and bed techs allowed my mom to have such an extraordinarily negative skin bed something something something awful, expletive expletive expletive thing occur. The latest thing I'm looking into is adding a day to my mother's toilet. They have them for somewhere between $50 And $300 depending on the brand you choose, and all the bells and whistles you want. Of course there's the maserati of toilets that toto. I'm not getting that because that's just something to confuse the hell out of everybody to confuse the hell out of everyone who would be assisting my mother in using the toilet, can you imagine a hairdryer massage heated toilet seat, warm oven mitt happening on my mother's behind. Bahh absolutely not anyway, so there's no need to do all of that I just need something that when my mother has a large amount of excrement, we can sit her on the toilet, and there will be a soft and gentle rinse of everything that's exposed to the toilet bowl. And there actually are quite a few products that you can attach to a standard toilet and I will put a few links in the show notes. But I am very excited about thatbecause you can select the water temperature as well as the duration of time and that's about all that's about all we will ever need to use for my mom is to make sure that the water is not too cold and then to decide how long we need the spray to be. Zetty and JG have had an extraordinary amount of quality time these last couple of weeks. I mean, without any of the professional caregivers being around that means for the entire two weeks, I've been the only person getting her cleaned and dressed, brushing her teeth, you know, getting her hair combed things of that nature, making sure that she's not soiled and blah, blah, blah. Wow, isn't that a lot and you know what's going to be funny too is when the caregivers do return, I have some new charades things to show them, Zetty has some new faces, some new grunts, some new gestures, some new phrases. The funniest one that I can remember is apparently cream cheese repeated several times in a row, ah cream cheese, cream cheese, cream cheese. I'm probably saying it too hard. It's more like cream cheese, cream cheese, cream cheese, that's Zetty. That means a bowel movement just happened meaning there's not even an aroma yet, but you can go ahead and get your gloves ready because it has gone down and you should just go ahead and get yourself ready to go down there and get it. And the not so funny gesture is if she takes the palm of her hand and pops herself in the forehead a couple of times that means that the BM has found its way to her vagina and it is burning. Try that on for size. Try that on for guilt for JG, JG is walking around with the Scarlet Letter A. I use that fancy contact tracing figured out which caregiver was COVID positive, likely the individual who passed it to my mom that caregiver is no longer on the team. You're welcome. I've been tested, Zetty has been retested. Christine has been tested several times I think Christine must be an alien she's been tested like three or four times has remained negative each time. I think the universe decided that Christine has to be impervious to COVID in order to be able to support me. Christina has put her entire life on hold for me for like three weeks because for one week while Zetty was in the hospital she pretty much had to be my caregiver to keep me from jumping through a window. And then for the two weeks that I have been Zetty's primary caregiver, Christine has been right there as my caregiver sous chef with us every day in the house every day. Yes, Christine has on a mask and she's wearing gloves, but she stayed at the house with us every single day. Yes, she does check on her children. She calls and checks in with her family and her mom but when I tell you she's been outside each and every day putting her own health at risk. I don't even know what to say like I don't think I told her the other day i said i thought i was fully I didn't even know I had any more space in my heart to love you anymore, but I do I guess. Okay, go there you go. You found some more. Even things as simple as knowing that Christine is in my mom's room that allows me to even go answer the door for the Amazon package, you see what I'm saying. Because now that Zetty cannot have on panties, I'm nervous about her standing up getting out of the bed, because if she stands up without any panties on anything, and I do mean anything, could then start dripping down her leg, I'm not worried about replacing the carpet or cleaning the carpet, but that creates a hazard in her walking. If she jumps up in bed pads or pieces of panties that are between her legs falls down she trips, that's a nightmare, okay? Or I'm sitting with my mom and Christine goes to the door. Things as simple as that, that you don't really take into account until you are in the home by yourself and you're trying to manage your parent who is COVID positive and also has advanced Alzheimer's and FedEx rings the bell or the groceries are being delivered. So yes, it's great that the groceries are being delivered, or it's great that the food is being delivered or is great that someone has sent you some chocolate covered strawberries, but you have to go to the door to get them. And if your mother's in the bed and you're worried that she's going to get up and that is going to be a hazard for her health, that is a moment of anxiety, and all these moments of anxiety add up. And what I've noticed is for the first time in years, I've been having those tingling sensations in my fingertips. Those are the sensations that I had right before that time when I ended up walking into the window. Back in Episode Seven when my body was falling apart, moments of anxiety are popping off around here all the time. And y'all I was so freaking excited, while my mom was in hospital, I ordered this non invasive female catheter. It's called the pure wig, they have a home version. It just sits okay, the engineer product designer in me wants to take a moment to describe it, it's so freakin awesome. It looks kind of like a hot dog. Imagine a really big hot dog or more like a Polish sausage. The woman is laying down the polish sausage sits right outside the vaginal lips. Nothing painful, nothing sexual. Nothing gross about it just is right outside the virginal lips, there is a tube coming out of one side of the hot dog, it works like magic. It's connected to a suction device, so it's plugged into the wall. And literally, as soon as any liquid leaves the woman's body that this obviously only works for urine don't get too excited. As soon as any urine leaves the woman's body, it wicks it away, sucks right in and it ends up in a canister and you just empty it in the morning. I purchased that thinking wow when mom comes home from the hospital, this is going to be the way she gets rest throughout the night because with Alzheimer's well for any of us, but definitely with Alzheimer's rest becomes that much more important. And I wanted to make sure that my mom could sleep through the night and that incontinence wouldn't cost her more and more hours of sleep because we're having to clean her and change her every two hours and then she's rest broken that would make her have tough daytime hours. But y'allI got this cute fancy device sitting over in the corner, her genitalia is so fragile I'm not about to put the hot dog sausage down there in her bun. I mean, loosely speaking, you know what I mean? Like the vaginal lips bun sausage, you feel where I am going with that. I'm like, I can't even use my toy. As soon as she's healed, I'll use it. I'll put it in the show notes. If you had told me before today, that I could still be walking and talking after experiencing a month like this, I would have laughed at you and called you ridiculous. Because I'm not domestic. I don't like caring for people. I don't have kids on purpose. Don't have pets, don't have plants. But I love my mama and I guess I have learned how to care for her at least. I don't know if I enjoy caring for people but what I do enjoy is knowing that she is cared for well that I do know. These last three weeks have been pure hell. The first week was a mess because I was fully out of control and out of contact with her, the last two weeks while they have been hard on me physically, mentally and emotionally. I've been better because I could see her, I could touch her. I could tell immediately how she was doing. I had instant feedback on her well being, you know what I mean? And I will be transparent, okay? Told y'all I'm always be honest, in two weeks, I might have cleaned my body three, okay, four. Okay, maybe four times, I'm proud to say I've brushed my teeth every day. But I will admit, more than I was worried about gingivitis and dental care is because I wanted to keep my palate fresh for my coffee and Bailey's Irish cream combo. That is what is pulling your girl through palate priorities matter. The snuggle up demand that everyone near your loved one, your ello shout out to my Facebook support group, the dementia caregiver support group we are close to 35,000 strong, and we call our loved ones ello and other groups may call it but it's new to me. So I'm giving the group that introduced me to it credit. Get everyone in the same room with your ello to wear a mask, use gloves, and take the temperature. Don't let nobody give your dementia loved one COVID. You do not want your loved one subjected to the hospital, subjected to that god awful COVID test. Oh, it's another whole episode talking about Zetty experiencing that foot long cotton swab tickling the tips of her brain trying to see if she was COVID positive then obviously once you call it positive, you have to be retested to see if you're negative. So it's cycle of delusional pain and discomfort for your loved one all because somebody gave them COVID. Clearly my mama ain't the one that's out and about disobeying the laws of social distancing. It's some other human that's bringing it to her, do whatever it takes, keep everybody who refuses to wear a mask and gloves away from your loved ones; snuggle up to it. I don't care if it's another family member, if it's the spouse, if your mama has Alzheimer's and her husband, your daddy, don't want to wear a mask. I'm sorry, let's duke it out. Daddy meet me in the driveway. All right, we're gonna play a game of horse or marbles, whatever you want to do, but are you gonna wear this mask or you ain't gonna seeyour wife bro, what's up. We ain't going through this. You can do it fast or we going to do it slow. Okay, are we finished or is we done? I ain't doing this with y'all no more. That's it for now. Thank you for listening. Please subscribe for continuous caregiving tips, tricks, trends and truth. Pretty Pretty please with sugar on top share and review it too. I'm a comedian, Alzheimer's is heavy, but we ain't got to be.