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TISMF

You know I’ve been barely photographing lately, but I am doing something with light in my backyard. The last few days have been cloudy so I didn’t even have the option of a few minutes of good light, and I was just sitting here thinking about how I’m really having to push myself to feel any creativity, like 5 minutes a day, right now and I thought “I’m an empty well. “.

But then I thought NO that’s not really an accurate way to put it because I don’t think I am an empty well, I think what I am is pushing up against a dam. That dam is a manifestation made up of the terror that I feel every minute of the day as I sit here watching a baby monitor to see if he’s breathing. Or if spirit is showing itself to me in light orbs. And I listen for thumps around the house- sounds like someone stumbling. Check the monitor. Is he breathing? Orbs? Is spirit clumsy?

Once I’m in a place where I don’t have to be so scared anymore that dam is gonna burst open and 10 years of photographs and thoughts are just going to take on their own life. I want my stuff out there. I don’t even care if it’s a photo on a t shirt or a hotel bathroom poster. But I don’t wanna market it in the obvious way that we all know how to market it. I need to figure out another way. I can’t sell my soul for a slice of the pie. I just want eyes on my work.

TISMF and family

Are you available? I want to send you a video when you can see it and respond right away.

OK. Remember when you asked me if the animals in my backyard were unusual to see or acting strange? I just mowed the lawn and found this in the back corner of the yard.

INSERT VIDEO OF GRASS BESIDE THE LAWN MOWER COVERED IN FIVE PILES OF TWO LARGE ANIMAL BONES EACH ALL RELATIVELY SIMILAR IN SIZE.

I noticed sweet pea weirdly over there yesterday so I think not must have happened Monday night.

The chance of you and I being burned at the stake during the Salem witch trials: 100%

Did you not just ask me if any strange things had happened with the animals around my house?

I just spent about 10 seconds watching a bat flying circles over my house

No. But a friend of mine pointed out that they’re in pairs which feels like voodoo

Josh is doing great. I talked to all the kids last night to let them know that ….you know that he was not doing well. So I feel really bad that Josh is so far away but while at the same time, I’m so happy that he is there and doing, what he does so well - which is learning and being intellectual and fascinating like that. You know my philosophy is that it’s less important that you spend somebody’s last day with them and more important all the days that came before that. I don’t wanna make the kids rush home for a false alarm, and I don’t want them to think that they need to be here when they don’t. Rich is really not wondering where anybody is. And his last day or his last week isn’t going to change the last 31 years of being parent.

So. Dad actually is having a “good” (more awake and alert) day today. He’s been up since 8. The hospice nurse just left. Dad’s abdomen is swollen- it’s been swollen since he came back from the nursing home. But it got a bit more swollen and hard last night and now he is starting to notice and complain that he is not comfortable. So I discussed the possibility of taking him to the ER for a CT scan with the nurse to see what is happening in there. BUT dad said he did not want to go to the ER and that he did not want to go see any doctor about it. So I have to let it go.

I did speak to someone from the brain study and they have agreed to do an entire autopsy and not just his brain so if there is some other neglect/damage from his nursing home stay that would show up on the autopsy. I’m so furious because I know they are covering something up.

TISMF

So I’m not really paying attention to what is on the TV because I’m was doing a Sudoku puzzle and I found myself bopping along to the music because it was like Partridge Family David Cassidy stuff and then I think it has something to do with Medicare and now I feel really old

So I I had to get my lawnmower repaired and I didn’t mow the lawn for like 2 1/2 weeks but we’re in this little drought so the lawn wasn’t as insane as it would’ve been during the summer when I really had to mow my lawn every five days and it was like a dense forest out there And I was thinking what ever the weather conditions have been this entire summer for me it always was like the exact weather conditions that I needed on that day. I’m feeling really lucky lately.

TISMF

So this just started over the weekend. He sits up in bed for a long periods of time and he does this thing where he kinda shakes left to right this is the baby monitor. (Sent a video) I don’t know what to make of it.

I don’t know, but he’s been sitting up like this for 11 minutes now. I know he needs to sleep more so I don’t wanna go in there. I feel like he’s falling asleep sitting up, but he’s fighting it.

12 minutes

He asked me to get him Hi-C over the weekend and that is an incredibly unusual request from him. He is a diet soda maybe iced tea guy. But his dad used to drink that kind of stuff and it makes me wonder if his dad is around.
I went to the supermarket and they did not seem to have reasonably. He’s lying back down again. He stayed sitting up for 17 minutes and now he’s lying back down.

I went to the supermarket and they did not have reasonable size containers of any of that drink. Kool-Aid Hawaiian punch situation so I ended up buying a canister of powdered Kool-Aid. He didn’t like it and he asked me to go buy him the 2 gallon Hawaiian punch thing because I told him that was the only one that I saw.

I wish I could drink something like that today and be as happy as I was to be drinking it as a child, but it creeps me out as a full grown adult

I’m Gonna jump in the shower.

OMG. He is sitting up again.

I think he’s just fighting. What’s about to happen

I want him to go back to sleep, but I know if I go down the hall he’ll try to get up. I think he thinks he needs to keep me company. He’s literally falling asleep sitting up.

No. He needs more sleep. I tried going in there yesterday to get him to lie back down. He is pushing himself to be awake. Not sure why. I wheeled him out to the family room and he sat in his wheelchair for 3 hours because he was too tired to transfer. I think if I do not go in there he will go back to sleep which is the best thing he can do for himself. Dude’s heart is not working. He doesn’t have the energy

If I thought there was a safe way to get him to sleep I’d give it to him but anything increases the chance he is going to fall again. Can’t have that.
That bruise is now spreading up his back. But it’s starting to break up a bit in the lower parts.

He has not attempted to get up yet
He’s trying to get up but he can’t get off the bed. I’ll go down there.

I’m so excited because I just realized that pomegranates will soon be back in season

Seeing more orbs just now

Another one

He is so restless. He just can’t settle down. He told the hospice nurse that he felt this all over pain. I gave him some Tylenol.

The whole orb thing is really freaking me out because it just started. Nothing was floating around before last night and I watched this baby monitor like a TV at first. Now I’m just glancing at it and I keep seeing orbs. One was a blinker.

TISMF

So the nurse and the hospice social worker were supposed to come at the same time and the social worker showed up and I saw her in the driveway and I went out to talk to her, and the nurse called her to say that she had to divert her plans because someone had passed away and would be late and I accidentally ran my mouth to the social worker (could not stop. I knew what I was doing but I could not stop) and basically told her how I felt about the nurse- in an ever so slightly gentler way.

So when the nurse showed up, she was obviously trying to be pleasant. (Puking) She didn’t even take his blood pressure or look at his feet. She looked kind of halfheartedly at the top part of his bruise on his back and made some small talk with me and left. She’s such a bad nurse but now I’m gonna start to take detailed notes. So I wrote down that she didn’t take his blood pressure or his oxygen or look at his feet and left. I can’t believe what a bad nurse she is.

I would care more if I thought there was anything that she could do to help him. I also called husband’s childhood best friend. They’re two guys that care deeply about each other yet never see or speak to each other (manly) and I let him know what was going on. But he happens to be a doctor. ENT. He was able to talk to me about what’s happening with him and he made me feel much better. Because there is really truly is nothing anyone could do even if I rushed him to the hospital. It’s not about how bad the bruise/swelling/break is it’s about how compromised he already is and how he isn’t strong enough to begin with.

In my mind that doesn’t mean that he wasn’t neglected and that the nursing home/hospice were still negligent in his care and probably broke some law by not reporting what I assume has to be a second fall that happened days before I picked him up. I’m guessing it happened the Friday before and that is why they called me out of the blue to see which exact day I was going to pick him up.

Also, I was talking to a school friend that I don’t talk to all of the time and I was telling her what happened in chronological order when I realized that his bruising took a turn for the worse on the Friday when he ran that weird sudden brief high fever. I have no idea what happened inside of him but no one is going to be able to convince me that the fever and the bruise suddenly having massive swelling and discoloration is not related. If I wasn’t reserving all of my spiritual energy for coping with his day to day needs and condition I’d do a deep dive into research. Maybe I will. The stress is coming back. But this time I know I will be fine once this ordeal is over.

He was awake from about 9PM to midnight yesterday so I was up until 1. I’m kind of tired today because I still woke up at 7. It’s rare for me to sleep late. I’m just a morning person. Tonight I’ll get myself to bed early.

TISMarion, who is on vacation right now

I’m so sorry to have to give you this message. Dad started to run a fever last night. I gave him Tylenol, Covid test was negative, foot wounds seemed standard- and not infected. I was on the phone with hospice until about midnight. His fever broke sometime between midnight and 7 this morning.

Different Hospice nurse just left. She said that she sees signs in him that he is starting to shut down. But we had to wake him up to check him so I’m not sure how accurate that is.

She said that sometimes when people start shutting down they run fevers because the body is trying so hard and the systems are giving everything they’ve got. My knee-jerk reaction is to be in denial, but I really just don’t know. This is way beyond my pay grade and I promised you that I would be honest so I’m telling you what she said. I don’t know how to advise you though. I think you should enjoy your vacation because there isn’t really anything to do here. Obviously you can call or facetime and I can put Dad on the line.

He is super tired this morning. He hasn’t gotten out of bed yet even though I’ve woken him up a couple times to check his temperature and then the nurse came. So I can’t really give you a good idea of how he seems when he’s awake because he just rolls over and goes back to sleep. I actually don’t know what to think. I’m a little bit in shock because I wasn’t expecting her to say that.

Someone is coming this afternoon with a portable X-ray machine to see if there is anything broken in his back/hips. For some unknown reason the bruising is looking even worse. I don’t know what is happening to him.

TISMlawyerF

Hey. I didn't mean to bother you on a Friday night. (I realize that other people are way more interesting than I am.) However, I did want to ask you some hospice related questions because I did take two weeks off. It was glorious. I'm so glad I did it because I'm really renewed. However there was definitely neglect happening while I was gone, and I kind of realized it halfway through and made some phone calls. Absolutely nothing was done. They didn't properly attend to his wounds, they did not get him out of bed to walk a little bit every day, I don’t even think they monitored his blood sugar and worst of all he fell on the second night and they called me and told me he was OK but he's not OK. He is horrifically bruised and swollen all over his side and back, and is telling me that he is pain, and now they are not giving him an x-ray. They say someone is coming with a portable X-ray machine but then they refuse to give me specifics or tell me who to contact about it. So I was wondering if you know of a malpractice attorney in my area. I want the one that makes Doctors cry when they see his name.

Two days worth of TISMF

Picked up the patient today. He is more decompensated than I was afraid he’d be. It was some kind of miracle that I managed to get him into the house. I don’t know how I did it. Even he didn’t know how I did it. My guardian angels must still be pulling all nighters to look out for me because for a moment I thought we’d be stuck with him one small step up and leaning back on me forever. I almost had to call the fire department to come help me. But then I managed to heft his walker to the top step while supporting his full weight on my shoulder and reposition myself behind him to shove/lift his ass up the steps. I don’t think he’ll be leaving the house again.

Oh lord.
He was NEGLECTED the entire two weeks!!! His feet were wrecked, which isn’t a surprise because he steps on his own feet but I had to wash off the crusted blood when I got him back to the house to see how bad the damage was. There was a lot of new damage. A LOT. He lost a nail and is about to lose two more.blood blisters and scrapes…. But listen, I’m reasonable. Dude hurts himself. But fucking take care of him!! It was the lack of care. Also- remember me on the second night saying that they called to tell me he had fallen but assured me he was fine? I’ll send photos. He is not even close to fine.

Whoa. I just saw his behind. He is very bruised and very swollen. As far as I was informed he only fell once while in the nursing home- and that was on August 29th. It’s the swelling that has me shocked. Fuck them for not telling me the truth! They said he was fine. Dude must have gone down HARD. OMG. The swelling is awful. He says it hurts. I wanna cry. Again- it’s not as much that he got hurt as it is that they did not address the damage. They did not inform me and they did not provide after care.

Oh yeah, did I tell you they gave me a hard time about getting his records when I left? COVER UP. Not sure why they thought they could get away with it with me, I don’t think I give off “I don’t care” vibes.

Nurse came today and didn’t think anything was broken. She said because he could walk. She was rather dismissive in the same way that several doctors were dismissive to me when I asked them about his swollen ankles and everyone brushed it off but it turned out to be heart failure fluid build up. The instant someone dismisses me they are my mortal enemy. Period the end. Bitch doesn’t know that I have to focus of a high functioning AuDD adult and when I mother fucking say something is wrong then something is very fucking wrong. Bitch. I told her he was walking around with a broken back for three days before casually mentioning it. Not sure how she could be so callous. He’s not dead yet! I’m gonna call the hospice doctor myself.

Left a message for the hospice doctor. Tried to hit all the bases. I need to know for care and pain management, he is non communicative regarding pain….etc….

Also, this is America and I am starting to understand that hospice somehow makes money by denying care to hospice patients. Fuck this country and the disrespect it has for sick people.

Yep. I left a message for the doctor. I said I needed to know the extent of the damage so I could effectively take care of him because he does not accurately report pain. I also said that he had never swelled up before and this was extreme.

The weird thing is that she literally told me as an example of what gets treated that if someone broke their leg on hospice they would still get X-rays and a cast.

She better fucking arrange for an X-ray.

What’s up with my car is that I decided to whip out the credit card (the spending spree is now officially over though!) took it to my own mechanic despite it being under warranty and he checked out the wonky A/C- (Which if you recall was NOT POSSIBLE according to the thieving crooks at my local dealership) confirming everything I told him, (sweet sweet validation!) but did not know which system in the car needed fixing, however, he told me which dealer is most honest to take it to and that he would speak to their mechanic for me. You know if I was a dude this would not be necessary but, alas, I am not a dude, only have learned how to get the dudes to fight my battle in this one case.

In other news: it is more apparent by the second that the husband was completely neglected while in the nursing home. He is horrifically bruised and hospice is sending someone here to take some x rays of his lower back and hip area to make sure nothing is broken. If I find out something is broken I am preparing to release anger that hasn’t seen the light of day for over five decades.

He’ll be coming round the mountain… tomorrow.

There are just too many things I could say. I could talk forever about every aspect of the last two weeks unfolded perfectly right down to arrival times and weather patterns and how I’m sure my guardian angels all got together and said “We gotta give her this one” because I am headed into this next round with such a better outlook.

My fears that I had become one of those people who just gets old early quickly faded away as I realized that each and every day I woke feeling more refreshed and youthful (haha word choice) than the day before until right now as I sit here and type this out, afraid to go to sleep because tomorrow is pickup day, but I feel like my old self again and I like it so much better here. I remember what it feels like to be the real me. Meaning not the angry burned out resentful guilt ridden desperate and tragically so sad she feels like her spirit can’t stop weeping me. Meaning that if I can go back to being that me right now (I don’t want to but the immediate future looks pretty fucking hard right now) then I will be able to return to my authentic self afterwards, too. Yeah. I know how corny it sounds but this break and how it unfolded and how I was received with such love by the people I chose to visit during my free time…… it’s been healing in this insanely deep and spiritual way. From sweet baby Josh being happy and chatty the whole ride up to the whales of Massachusetts putting on a grand show for the boat I stood on. Every single aspect of this trip made me feel so loved. To Pal and the goddess each welcoming me into their homes and spending hours and hours talking to and engaging with me, I cherished every second. Even by nature made me feel loved.

I’m going into this next chapter with the belief that I will be okay. I can do this right now. I can find the ways to take care of me. And most of all I can go forward knowing that I will be happy again and it won’t be hard to get there.

got a vacation

All I wanted to do was to bring Josh to school. I wanted it pretty desperately and to be honest, part of the reason why I signed the husband up for hospice was because I knew that hospice was an avenue for receiving respite care so that I could bring Josh to school. Hospice respite is only four nights, but I figured I would pony up the money and extend it to a week. I have been living a pretty cheaply for so long that I could comfortably do it. The week before I left my therapist told me in no uncertain terms that a week would not be enough and that I needed two weeks. It was interesting because it wasn’t something she wanted to discuss with me. It was something she flat out told me and I really did get the message that I need a break. I felt myself getting giddy at the idea of extending his stay and my break. Naturally, I checked with sweet pea's Dog Sitter to make sure that she could extend her stay and when that came through, I checked with the hospice and when that came through, I decided to make plans.

So, here is what I’ve done so far- Josh and I dropped the husband off at the nursing home where he will be cared for and took off bright and early the next morning. I was a little jittery about how the ride was going to go because I knew that Josh has been incredibly anxious about crossing the border. He didn’t get his act together in time to apply for his student visa months ago, so we had to do it at the border and Josh imagined the border guard to be, an angry and suspicious person instead of the friendly Canadian that I was expecting. However, as soon as we got in the car and started to drive north, Josh was happy and relaxed like I haven’t seen him for a long time. We had a lovely drive. Everything was perfect. The weather was perfect, the light was perfect, there was no traffic, the rest stop we chose to stop at was this charming clean bright friendly rest stop. But most of all Josh was so happy that the conversation flowed for the entire ride. I found out more stuff about him and what he does and who he is in that six hour ride to the border then I have found out in years, and I clung to every word he said. And when we got to the border, we did get a very nice friendly border guard. Josh had all the documentation he needed (and even more) so it went smoothly and then, we were in Niagara Falls.

Our first night there we grabbed a beer and burger and then we made our way to the falls where we saw the fireworks over Niagara Falls. It was cute and charming. The fireworks lasted five minutes, which was the perfect length of fireworks as far as I’m concerned and the next day we rode on the boat that went underneath the falls. We were both in awe and we understood why religious people speak so religiously about the hand of God being involved in the creation of the falls. I want to go back and do that boat ride again! Then we took a ride on the Ferris wheel and saw the falls from above. It was all just great. I was so happy. Josh was happy. I don’t know how to describe it, but the entire time I was just filled with, relief not worrying about the husband and love for Josh and in that moment I was really thrilled and there was never a second I wanted to be anywhere else. If I had to figure out how to describe what was different I would say that this feeling of dread that I’ve been living with had disappeared kind of as soon as we hit the road.

After our not quite 24 hours at Niagara Falls, we headed for Toronto, checked into the hotel wandered around had dinner took a self directed nighttime walking tour of the campus (which is incredibly beautiful) and then the next day we were both super tired so we didn’t do much but we saw some sights, we went to a museum, ate some good food, normal touristy things. In the evening we dropped Josh’s stuff off at his dorm, found a great noodle place a couple of blocks away, slept one more night in the hotel and then I brought Josh to school and hit the road again.

Josh had been studying maps of the city and the trans system so when we got there, he kind of knew how to get around and it felt really crazy because I have no sense of direction so I was completely dependent on him and it reminded me of how the husband used to be when we were young and I love that because I always wanted my kids to get all of my and the husband’s best qualities rolled up into one person and I was so happy to see that Josh had that sense of adventure and ownership of a new place and…. I don’t know it was just so good. I walked around for three days feeling nothing but happiness, love and gratitude, along with my relief. It was perfect.

When I left Toronto, I drove to the Catskills, where my dear friend Pal has a family country home. I’ve been here a whole bunch of times when we were young in college and I wanted to spend some time with Pal on the way home so I arrived here late last night and we sat up talking for hours until I wound down after my long drive (through horrible weather) and got some of the chocolate covered espresso beans out of my blood stream. (BTW- best road trip snack!) And now I’m just sitting on a beautiful porch on a cool almost autumn morning with the sun shining on my lap typing this out and everything feels really good. After a couple of days here, I’ll head home for a night, wash my clothes, mow the lawn and then I’m going to drive over and spend a couple of days with the goddess. She’s going to take me on a whale watching boat. Hello? Am I in heaven?

I didn’t imagine feeling this wonderful because deep down inside I guess I don’t believe in the restorative ability of vacations. I don’t know why I’m not a believer because I do remember that one vacation when I was pregnant with Josh and we were renovating our house and we didn’t have any heat and I came back from a vacation as a new woman able to cope with the uncomfortable living conditions, much to my own surprise. But here I am! I am feeling fantastic. I am thrilled to be here, enjoying the benefits of a vacation. I feel like I really understand what living in the moment feels like because I’m really trying to and succeeding in living in this moment. It’s not hard to live in this moment, it’s a good one.

I also feel like this little break that I’m giving myself is showing me what life is going to be like after the bad thing happens. And I’m showing myself that after the bad thing happens I’m gonna do things that make myself happy so that’s pretty reassuring. But I’m trying not to think about the bad thing or the husband too much so I’ll discuss that here later for now. I’m going to just close my eyes listen to the birds and soaking some of that Labor Day sun.