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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.

Old friends

When I was in college two friends planned a surprise weekend for me on my birthday. I got back to my room on a Friday after classes and saw that a bunch of my stuff was gone. I was interrogating anyone I could find on my dorm hallway when they showed up, with big grins on their faces and got me into a borrowed car, blind folded me and began driving. I’m turns out one friend’s grandparents had a cabin in the mountains and we were headed there for a weekend getaway. The weekend was lovely, and I had never felt so taken care of or like I mattered at all in my life. It was wonderful. One of those friends also took me on a road trip back to NYC when I woke up one morning desperately home sick after not being home for over 6 months. So, I guess he’s been on my mind because this road trip I’m on with Josh feels as perfect so far as that one did. .

I dreamed about being weighed down with things on a never ending escalator. He appeared and helped me off, storing my bag in a safe place and then disappearing into the crowd. In my dream I began searching and searching but I couldn't find him in the crowds of people and children.

I’d love to call him. I’d love to know if he had a happy life. I hope he did. He was one of three friends who ghosted me (before ghosted was a term) back when Josh was a toddler and I know that I had gotten strange for a bit there, I’m just not sure exactly how. I do know that I was quite overwhelmed with being the sole person raising three children. So, I’m sure it was me who was the cause of friendship loss, I have no malice towards the friends who jumped ship. Of the three friends the loss of this one particular friend was the saddest. I suppose that of the three he was the one I thought was most likely the lifetime friend. I’ve looked for him on social media. He isn’t there. I used to be able to find his name on the roster of the firm he works for. I’m so tempted to leave a voicemail for him during off hours just to say something friendly. I don’t have any expectations. Just wanted to say something nice. Maybe I just him to be sitting around having a happy memory about something we did while I’m doing the same. I dunno.

TISMF

Almost- Breathing a sigh of relief. Tomorrow I’m checking the husband into a nursing home for possibly 2 weeks so I can take Josh to grad school.

I can not describe to you how desperately I this break. I was talking to my therapist last week, who pushed me to leave him there for 2 weeks instead of 1 and if everything works out smoothly that is what I am going to do.

The last few weeks were pretty stressful here. He seemed to have developed another intestinal infection, which amped up significantly for the month of August, (don’t ask) and the hospice finally ordered the tests to culture his stool and gave him 3 days of antibiotics to use while waiting for the results. I got the sample on Saturday, immediately gave him the antibiotics and he hasn’t pooped since. But you know who is going to have to deal with this? The nursing home! I’m so happy.

My entire soul is weeping with gratitude that I am taking a break. Josh and I will hang out in Canada for the weekend, I’ll head out on Sunday and go directly to my friend Pal’s for a couple of days. Then if all goes well, I’ll stop by the house for a night, throw my clothes in the washer, mow the lawn, and then head up to the heart of New England to see two other good friends who I haven’t seen in forever.

I am trying to keep my happiness inside until we are on the road. But I am so fucking happy.

The husband, is just slower, weaker, more confused than ever. This morning he could not snap out of a vivid dream that he had. But the one good thing is that he always knows exactly who I am and that he can rely on me but holy hell. This is fucking HARD.

exposed

Last Wednesday I got to the woods early and wondered if I’d see a certain early walking friend there. Well I didn’t see her car in the parking lot so I shot her a quick text. She told me she had lent her car to her kid that day and wouldn’t be able to come so I offered to pick her up. She only lives a mile and a half down the street from the woods. I drove over pick her up. We had a nice hike and then I brought her home at the end. On Friday she called me to tell me that she had just tested positive for Covid.

It’s Sunday And I’m still symptom-free. I did pick up some fresh Covid tests yesterday evening and tested negative so I think I may have dodged this bullet. My friend has a very mild case it’s not bothering her at all and is easily mistaken as a light summer cold so there is a chance that she wasn’t even infectious yet when she came into my car on Wednesday. But it’s interesting to note how defensive my cautiousness makes some people. I told them I would be laying low through the weekend just in case I end up coming down with Covid. Knowing that I’ve been exposed I wouldn’t want to be responsible for infecting anybody else around me. The two people that I walk with mostly at the park , see their parents often and everybody knows that I don’t want to kill old people. The reaction from my friend (who I suspect is actually a narcissist), was very telling of how she might behave if she were in my shoes. She seemed inconvenienced over my behavior. I don’t know how long I can remain in this friendship. It’s at odds with my moral code, but knowing that she would not protect the people around, her is kind of next level awful for me.

This friend is so dependent on unloading on me every time I see her that it didn’t register to her that what I am doing by avoiding people this weekend is the most thoughtful thing that human being can do. I am attempting to protect the herd. But she doesn’t see it that way. All she knows is that now she has to find a substitute ear to listen to her. I thought about sending her a text that says something like “At some point in my life, I decided that the person I wanted to be is a really decent human being and decent human beings don’t go around spreading disease. Decent human beings take precautions even when they’re not sure if they’re contagious or not.” But I’m trying to imagine her reaction to reading such a text and I am pretty sure that there is a 100% chance that she would not understand what I’m saying, not feel a drop of gratitude, and that it would only upset her and make her defensive knowing that in some future time, not only would she show up in public, knowing that she may become ill, but she would probably show up in public without taking any precautions if she actually was ill because she couldn’t be inconvenienced into taking a few days off. I do not think she is a decent human being.

If I wake up and I’m still symptom-free on Monday, tomorrow, I’ll take a test and if it’s negative I’m just going to move forward as if everything‘s fine. I do believe I managed to dodge this bullet.

TISMF

So today I found a bright shiny Penny heads up on the sidewalk so I picked it up for a good luck and I was thinking about this thing that happened when I was probably about 15 or 16.My mom had read some book and she was just sobbing at the end and she says to me, a girl consumed in teenage repulsion of my mother, “I know this comes from a book and it’s not original , but I want you to know that after I die when you look down and see a penny on the street know that that’s me telling you that I’m watching over you.”

I thought this was the most disgusting thing she could ever say to me not because it had anything to do with death but because instinctually I knew that this woman wasn’t watching over me in life so I couldn’t understand why I would find comfort thinking about her watching over me in death But you know when I found that penny today I looked to the sky and said “mom I have a lottery ticket for tonight so hook a girl up”

pip-pip

Yesterday I binge watched a reality tv show from England. This morning I woke up half way through a dream while thinking “I can not believe I just dreamed in an English accent.”

No idea what the dream was about but the weirdness of the English accent in my dream has stuck with me all day.

nurse checks out

Hospice: I met the nurse today. She was much better than the social worker and nurse manager. I didn't specifically ask her how long she has been doing this but she alluded to doing it for 20 years. So, good, practice makes perfect. Also, at one point she mumbled "this is why I love home care" or something, and let's be honest, we all want the nurse who loves her job and not the nurse who has succumbed to the dark side of nursing. 

Also, when I worked the whole "don't leave the house" nonsense into the convo she said it was ridiculous to think that I would never leave the house. A+