clickmom

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+

So far I hate the hospice care provider

I am so tired I don't even know where to begin. I signed the papers for hospice care on Friday. Today is Monday. I have only wanted to sleep the whole weekend away. The decision was agonizing. Truly. I am struggling to change my approach from SAVE HIM to allow nature to take its course. It's a mind fuck. I went with this particular hospice mostly because the hospice doctor we have been consulting with highly recommended them and because they have an actual freestanding hospice and I am hoping that they can accommodate the husband while I drive Josh to grad school at the end of August. Caregivers are entitled to respite care. But that is kind of the only reason why I have signed on with this hospice because 

OH

MY

GOD

have they said some weird fucked up things to me! So, here we go....

From the very beginning they keep telling me that the husband should never be alone but they  aren't sending people over here to watch him, they want to know how I am set financially so I can pay a stranger to do what I am already doing.  Thanks for nothing! Also, in my particular case, I already struggle with guilt. This is not a helpful and is probably a detrimental thing to say to caregivers who are already leaning towards the guilty side. Good thing I preemptively put myself back in therapy. Also, the thought of someone sitting awake in my house waiting for him to get up in the middle of the night would 100% render me incapable of sleeping. The end. It sends the creeps right up my spine. Not gonna happen.

And, last but not least, after telling me that I have to take care of myself, that I should never leave the house but should pay for strangers in here to watch him sleep they actually sat at my dining room table while we were signing the papers and told me I wouldn't believe how many caregivers die before the patients because they are so stressed out and have neglected their own care.  This was the straw that broke the camel's back so I turned to her and said That is the equivalent of telling a pregnant woman stories about still births. Why would you say that to me?

Then when standing on the porch as they were leaving I had the cluelessly not so brilliant idea of telling the social worker that I understand that they have to tell me for liability reasons that the husband needs 24/7 supervision. I told her how upsetting that was to hear since I am doing my very best here but that they have to understand that I might have to leave the house and will do it when it feels safest. You know what she did? Sit down for this one. I can not believe I am typing this in regards to someone in my general age group. She PUT HER FINGERS IN HER EARS AND SAID LALALALA.

Speechless. Completely speechless. So, for anyone who didn't take notes, here we have a big fat dose of "this is not helping me deal or cope" served up steaming hot ... here we go.....

1. Making me feel like shit for leaving the house and for sleeping.
2. Tells me, the caregiver, that caregivers are dropping dead from the neglect and stress of caregiving before the patients on hospice die.
3. Shoved her fingers in her ears and LALALA-ed while I was speaking.

And that is why, so far I THINK HOSPICE SUCKS. I feel a bit ashamed to admit that a big part of the reason why I ultimately decided to take this leap was because people giving telling me without specifics how helpful and supportive hospice was to her whole family. I keep hearing how hospice nurses are angels, no one seems to know how they can do what they do. I would like to return what I have already received and order one of those angelic hospice workers please!! 

Well, the other reason I decided to sign up now is just in case his situation changes rapidly I won't have to start from ground zero, I will have already gone through the paperwork. 

So far, the hospice experience has only served to heighten any stress and anxiety and guilt, and the guilt part might be the worst part of this. The last thing I need on the face of this earth is more guilt than I already have. I actually told them that 3 separate of my friends were begging me to leave the house during the lockdown. They were ready to hold interventions for me because I had gotten so depressed. So, I am feeling like the under appreciated and underpaid health care worker right now. But this place might give me respite care in their facility when I want to take Josh to school so they're gonna be our people for the near future. Things better get better.

 

Also, they told me that the nurse who will be assigned to his case will be calling today and she hasn't called. It's after 5:30.

 

Not the first impression you wanna give a girl! 

TISMF dictated and unedited

OK, I’m standing outside doing that thing where I just take the same picture over and over again until the sun moves a certain distance but I’m having all these deep thoughts and I’m going to share them with you so that I don’t forget them and I can write them down when I go back inside so here we go. Oh, by the way, I’m kind of writing in my head some ideas for the artist statement that I’m going to use for this body of work that I’m making right right now.

I decided to start watching the way the light moves across the lawn in the backyard and come outside and photograph it and then I realized that it kind of moves across the backyard pretty much the same every day so I’m going to look for different things to focus on as I photographed the light moving across the backyard. I told you that one night I watched the light move across the wall for about an hour and a half, and I just realized that I am standing out here with my camera in perfect timing to watch the sun move across the tree that’s in the middle of the back half of my backyard. Which is definitely the tree that was planted to be on the corner of the original house that was back here and I think about this tree all the time and I feel like oh you know the tree probably has stories because the people lived right next to it for so long but I wonder what the stories are. And I’m thinking about this and how it didn’t feel good to me the way that our first house in stepford did. And we bought that house from this lovely older couple who I’m quite sure we’re in the mob and he was just so sweet and he really loved his house and I felt like the whole house came with a good vibe. And then when we bought our utopia house, I just felt like I had found my forever home. I felt so connected to that little spot of land. I would literally get out of the car whenever we came back after a while and wanted to lie down on the ground and just smelled the Pineneedles.

And then when we came here, I didn’t have that feeling about this place. I don’t know why maybe it’s because the house is so awkwardly set on this land and the house that we live in now which is not the original house. Or maybe it’s just because I didn’t realize how hard it was to pick up and move and start over and I made the decision to not get involved in this community because I only thought we were staying here for eight years and I just let my heart live up at utopia because, that was the only place I ever wanted to be. However, because of the husband’s illness and now the pandemic I am forced to have this relationship with my Back Yard and I think I’m finally decided to just calm the bleep down and really capture the things that I watch back here, I mean I’ve been doing that since the lockdown in 2020 but I think that by looking at the birds, I was looking out of the yard and not really at the yard.

So when I’m inside Washing this little slice of light traveling across the yard at the end of the day and I call it the slice and it feels like that light has almost taken on a personality of its own. Kind of like it’s a it’s a tangible thing as opposed to just light. So I when I’m inside I will get out the back windows and think oh it’s the slice. It must be clear to the west and I take note of where it is and how far it is from passing certain landmarks and how it lights up different parts of the yard Path across diagonally across the yard so anyway I’m out here photographing it and it’s kind of weird cause I’m thinking it took me 13 years that we’ve been living here too really connect with this place visually which is how I connect with the place and you know my days here are numbered so wow what a Interesting time to finally appreciate the beauty that I’ve been surrounded with this whole time and by appreciate I mean photograph because that’s my jam

Also, I believe Siri for any and all spelling and grammatical errors. I will take claim of the run-on sentences.

OK, the slice is gone and I am just sitting outside right now because husband is already in bed and I don’t have to go inside. But you know I’m reflecting on how long it took me to really be able to point my camera and look at this space with the appreciation that I have for, other places and I feel like I’m having this weirdly spiritual moment here. I think we need some drums and fire and somebody wearing a lot of brightly colored robes.

Sometimes when I make jokes, it’s really because I’m covering for wanting to say something that sounds very flaky and Looney Tunes

THEN SHE REPLIED: I do that too! I was thinking you could find some drum circle pieces on the net and enjoy the drum and chanting

SO I SENT BACK SOME LAUGHING EMOJIS AND SAID: I knew I was sending these texts to the right person!

She said “You know it”

And I said: Love ya

fair

I find myself thinking about whether or not life is fair pretty often. I’m sitting outside in the middle of this heat wave because I really should be mowing the lawn, but I don’t wanna go in the sun and in all honestly I’m in a strange frozen place where making a phone call is … a lot. I’m not okay. I’m far from okay. I’m thinking about the husband being eligible for hospice right now and what that is going to look like. I just thought to myself “it’s just not fair because for over four years now I barely made a plan and all I wanna do is take Josh to graduate school at the end of August and be able to enjoy a couple of days with my kid and now everything is up in the air, and I don’t know what to do about it.” The truth of the matter is that I don’t wanna take Josh on this trip from my own benefit. I want to take him on this trip for his benefit. I want to set him up in the nicest way possible so he has the greatest chance of success. I’m not actually worried about him being successful at school because he is such a successful student, but I want him to be happy and I feel like if we can go and have fun for two days before he moves Into his new apartment then he’ll just get off on the right foot.

In the world of life not being fair , I do feel like my life is one road block after another, more so than some lives. Would have been nice to be born into an emotionally healthy family. Every time I try to get up WHAM something else is pushing me back down. Why? Why did I get such a raw deal here on earth? I don’t like it here at all.

But mostly I do not ever want to be responsible for anyone other than myself again. I don’t even think I’m ever going to have another dog.

TISMF brutal truth

OK, I think this sounds a little bit ugly, but I want to share this anyway because that’s how I process things.

I’m sitting outside watching a Netflix movie. I’m totally stressed out over the husband‘s condition and I’m really pissed because something got into my garden last night and ate a bunch of stuff and, I’m in some kind of bad mood. But I’m watching this Netflix show about a couple that went to Costa Rica for the weekend on their third date and ended getting stuck in Costa Rica because all of the flights got canceled because of Covid. Right now I’m at the part of the show where they’ve been together for a whole month and I’m watching their relationship evolve and the woman is talking about how the guy is really good at planning things and how she really appreciates that in a person and I was thinking “oh yeah, my husband used to be like that too and that’s why we made such good travel partners because he would make all these plans and I would just say “That sounds great.Let’s go!””And then I realize that if we had never had kids (which would have been fine with him) I probably would’ve been completely content with a so-so husband because I would’ve just filled his void with lovely women, friends and girl activities and that really my biggest disappointment in him is not that he’s a shitty husband because I would have settled, but it’s because he was a shitty father. You know about this… I would do anything for my kids and that is what I would have liked from him too.

I’ll have to read this text to my therapist.

SG wound care edition

New heading here Saying Goodbye.

Since so many things are going to start changing around here I’m going to SG the heading when that’s what I’m talking about. Saying Goodbye.

So, I don’t know what happens to our wound care visits with hospice and I have some very surprising mixed feelings about potentially saying goodbye to the lovely medical professionals and staff of wound care. Even the secretary down there makes me smile. She is a lovely person.

I’m having trouble picking up the phone and calling the two hospice services that the doctor recommended. I think a lot of it has to do with the uncertainty of everything. Also, let’s be 100% honest: I do not want more stress and difficulty in my life. I’m already maxed out. I’m so afraid of him having a massive stroke and being paralyzed or even just bedridden and pooping himself and being so tragic and sad. It seems incomprehensible that I could feel worse when I look at him than I already do. I’ve been crying a lot. Like, A LOT.

So, at wound care today I followed the doctor out of the exam room to talk to the doctor privately and we ended up stepping into the storage closet for privacy and it felt like a tv show to be standing there amongst all of the bandages and medicines and having this serious conversation. She said that sometimes hospice patients continue to come in for treatment. Why don’t I want to let them go? I think it might be because they are the one place where I really feel like I am working in partnership with someone to take care of me. At wound care I am treated with respect and my observations are not dismissed. After all, I am the one who knew of his two infections so they were able to treat them. I think that’s what it must be. They’re probably the only medical situation where I feel listened to and respected.

The wound care doctor has the most beautiful shiny healthy looking hair. I really wanted to stroke her head.

TISMF

Over the past few days but not in any particular order. I have thought about posting but the reality is that I am so overwhelmed with the husband’s situation and potentially officially putting him on hospice care and all the decisions that come with that decision that I am barely functioning.

So. Right now I have GF brownies baking in the oven. I was thinking of making chili for dinner. This combination makes me feel like I’m in my 20’s again. Feels like something I did when I was still myself and not a mother/caretaker

In the mean time, I’m riding around out there on my tractor mower with only my own thoughts to keep me company and I finally figured out why this summer it’s taking me so much longer to mow the lawn- and I’m using more gas too. It’s because 1.every time I go through a thicker section I slow down in hopes that this will enable the mower to mulch it more thoroughly and also because the grass is growing so freaking fast this summer I have to go over some patches where I’ve left long thick strips of mulch that needs to be mulched again.

Also, I wondered why the grass next to the stone wall is only browning out on the west side of the wall. It’s the heat! The stones absorb the heat all morning and when the sun reaches them it’s peak sun radiation time and they are just heat killing the grass on that side of the wall.

I feel so scientific

All right, I take that back. I am handling this thing like a paid professional. I am taking excellent care of him and nobody knows how agonizingly painful this is for me to do. It would make it easier on me if I knew what his end date was. Would just be able to stop obsessing about that in my head

So, the husband just woke up. I was passed out on the couch after a poor night’s sleep followed by 90 minutes slogging through today’s high humidity with the dogs. So I woke up completely dazed hearing maniacal chihuahua barking with sweet pea barking back up. I popped up right thinking I had ordered something that was being delivered. Anyways… He made his way down the hallway tortoise slow, walker creaking…. by the time I realized it was not a stranger on the porch that the dogs were barking at he was about to cross the threshold into the family room. And he has a scrape/bruise right in the middle of his forehead. If he had a widow’s peak it would be spot on. Also he has a scrape on his left eye.

I asked him if he knew what happened as he took his place in the recliner. He nodded and told me that he fell off of the toilet in the middle of the night. Then I noticed his shirt was on inside out, which is weird since it’s the same shirt he wore yesterday right side out and I asked him if he knew why his shirt was inside out. He said “Oh yeah, it’s the shirt that made me fall off the toilet.”

How? (I took the bait)

He said that his shirt, which he’s had for a long time and is roomy on him now that he has shrunk too much to wear his old clothes, except for pajamas, when he sat on the toilet somehow wrapped under his butt which prevented him from standing fully upright and caused him to fall forward into the wall and onto his face. I’m thinking of putting the trail camera in his bathroom tonight.

But the Chihuahua got picked up by her uncle. We are tag team taking care of the dog while my friend is down south of the border somewhere scuba diving. I don’t care. I am so jealous of anyone who’s on the carefree vacation having fun that I can’t even listen to them talk about it.

I’m in that weird position right now. He is sleeping. Do I make a big dinner or not? Honestly, I always enjoy my own food/cooking but if he is not getting out of bed I just want a big salad for this hot day. If he wakes up it’s meat, potatoes and veggie as a side. Yuck