Yesterday I took the day off. We had no baseball, and I decided to that I didn’t want to go to Salinas for a day. I didn’t want to face the responsibility of my sick dad laying in a hospital bed, and me being helpless to do a damn thing about it. But you honestly can’t hide from reality & it didn’t keep me from stressing about him all day… so I threw some Valor Essential Oil in my necklace, hopped in the car and drove to see my Pops.
I was pleasantly surprised when I went into the hospital today…. Pops was on another floor, and as I rounded the corner to find his room, I found him standing in the hallway (with 3 physical therapists), but still…. his balance was good & he was even able to sit himself back down in the wheelchair! But….
Walking, sitting, moving arms, hands, feet….. it is very primitively wired in our brains. So, while they are happy he is able to do those things, it isn’t really where we were hoping to see improvement.
He still isn’t communicating. He isn’t really making eye contact. He still can’t swallow. I’m not 100% sure he knew it was me there with him today. He still has a gravage tube in his nose to provide nutrition. He still needs to wear mittens to keep him from unplugging.
I spoke to the neurosurgeon today. He didn’t seem to concerned with dad’s current state – given the trauma to his brain. They keep him sedated off and on, because when he isn’t, he is agitated & aggressive….. I explained that Pops being agitated at being in the hospital is pretty much “normal”.
Early next week they will be putting a feeding tube in his stomach- remove the gravage tube. Given that he isn’t ready to swallow food (or even water), the tube in the nose & down the throat is not the most comfortable option. The speech therapist will continue to work with him to get him ready to swallow and cough….
I guess we just need to wait and see if the verbal communication kicks in *sigh*….. Although I was told he clearly told the PT that she was “full of shit”…. so there is that 🙄
I can tell he is frustrated. I’m frustrated for him. He hates not being able to talk, yell, get up and take a walk, scratch an itch, eat, drink, cough…. I need him to get stronger. I need him to be a smart ass. I need him to fight!
We need to start planning for what comes next. Where will he live? What level of care will he need? It isn’t going to be easy, but it needs to get done.
Not much change in Pop’s condition over the past few days. We aren’t quite sure what to think – time to track down some doctors and see what they say about his progress (or lack there of)…
We didn’t get to spend much time there today, but I’m not sure if he noticed. They had to put in a new gravage tube – because his “came loose”… translation – his restraints had enough slack to allow him to pull it out. He is supposed to be watched pretty closely, so I’m not sure how it happened. He has some sort of an infection, so we are asked to gown up before going in.
He seemed to be asleep, even when they were trying to put the NG tube back in place. Communication is still minimal. He still is unable to swallow an ice chip – so he is unable to eat on his own.
How much of it is a physical limitation? And how much of what we are seeing is him giving up?!? How would you feel to be 63 and lose any and all independence? How would you feelto be back in the hospital for the third time in three weeks, worse than ever before?
Before we got to the hospital today, I had a call from a rehabilitation facility. The guy told me that my dad was being discharged today… and that he needed a plan for what happens when Pops is done with his stay there. He had already called Sun Street and knew Dad had no where to live. He wanted to know what “our” plan was – even if it changes, he needs to know.
Now…. I get the need for a plan. We have asked social workers for help to come up with a plan. We know he needs care. We don’t yet know what level of care – BECAUSE HE IS NO WHERE NEAR BEING READY TO BE DISCHARGED!!!
This guy was kind of irritated with me, because I said that he was wrong. Dad could not possibly be leaving the hospital. And I would not (even for a fake discharge plan), say that he can live with me. It can’t happen. I have to think of my kids. Sorry. He said that he still needed to evaluate and meet Dad before he can accept him as a patient – I said you have to get his consent, because we do not have legal power to make his decisions…. and since he cannot communicate clearly, good luck with that. Although I hear he is pretty good about using colorful language when he is talking….
Turns out it was a misunderstanding. The hospital cleared it up, and now we know that we should only talk discharge with the hospital for now. And we aren’t there yet.
So not much change. But here is my plea to my friends and family. Especially if you have kids….
Have a plan. Share your thoughts, your wishes, your needs. Make sure it is known. Write it down. What if that plan isn’t possible? What then? If you can’t use your voice, have you prepared your kids or loved ones to speak for you? Don’t assume that you have years and years to come up with a plan. Do it now!!!
Seriously – DO IT NOW! Have the hard conversations. Your loved ones might not want to hear it, but they need to hear it. Then spend every waking moment making memories and sharing your love. ❤️
Pops is making good progress! It will still be a long road to recovery ~ but we are moving in the right direction.
They removed his breathing tube yesterday afternoon, and he has been breathing on his own. He looks a lot better! His right eye is no longer swollen shut. He recognized us as soon as we walked through the door & waved us over. He was able to communicate some things to me. He held our hands, responded when we said we love him. He even asked me for a kiss….
They have the mittens on still, he was trying to pull out the gravage tube that they are using for nutrition right now – swelling in his throats from the breathing tube makes swallowing a risk. The nurse did take off the mittens to allow us to hold his hands.
He remembered that his sister, Karen, was there to visit, and he seemed happy that she and his brother Mark will be there tomorrow to visit. He may be ready to move past old hurt and finally move forward as a family.
After our visit, we had to go clean out the apartment where he was living. They have asked that he not come back. We can’t really fault them for it. He has shown that he isn’t able to care for himself, and they aren’t equipped to care for him. He doesn’t have a lot of things…. it makes my heart hurt that his life can fit in a few totes and a couple larger items – a rocking chair, a tv, an old computer…. but hopefully he will be able to move somewhere close and we can help fill his life with more memories…. After all, the rest is just – stuff.
Now that he is healing, and close to being able to communicate, the next challenge is fast approaching. We need to convince him that he needs to be in a care facility. He has no where else to go, and whether he likes it or not, he NEEDS round the clock care, until we are sure he can take care of himself – take all medicine correctly, eat healthy meals, drink plenty of water…. he has been unable to hold up his end of the bargain when he is sent home from the hospital – so now we prepare to strongly guide him in the right direction.
Like I said – we have a long road ahead of us, but at least we have each other!
It gives you something to do, but it doesn’t get you anywhere. ~ (Van Wilder) ~
But seriously…. how can we not be worried at this point? Another day has come and gone, and there is no progress. Now, don’t get me wrong – I am so happy the doctors are pushing him along on some agenda, versus allowing time to heal – but I LOATHE waiting without answers.
It’s no ones fault. They thought by now he would be more responsive. They thought they would have his breathing tube out by now. But he just isn’t following commands enough to take the risk of removing it.
He still is moving around, a lot, but not able to follow the doctors directions. The main doctor dude in the ICU today decided they needed to do another CT today (even though the neurosurgeon had one scheduled for tomorrow), because he felt it couldn’t wait. We were unable to review the results of it with anyone, in any detail, but they fear (which is why they did one today), that there is a continued bleed.
Not sure what that means. Another surgery? Will it heal on its own? Do we expect him to get past this?!? So many questions….
My sister will be headed back down tomorrow, and she is going to track down the neurosurgeon to help answer the questions we have. Really hope to have some more information.
My Aunt Karen came to see Pops today. It’s a pretty big deal, and I hope he knows she was there & that she loves him…. His brothers are reaching out too – though I don’t think they want to see him in his current state. I’m praying they get the chance to see him “better” – but the past several years have not been kind to my dad, so even “good” is not the same. Somehow, women always seem to be better at dealing with the really tough stuff.
Here is a picture that shows where they removed part of his skull – it’s not easy to look at, but I feel like it is important to document this – for us and for him. He never seems to understand the shape he is in at the start of his hospital stays…. keep scrolling past if you don’t want to see.
Thank you to all the friends and family that have reached out. Your love & support, thoughts, prayers and kind words mean the world to us.
Not much to update today…. breathing tube is still in. They aren’t sedating him tonight, so hopefully that means some progress in the morning. Again, I would rather take another day of status quo – than regressing in any way.
I was able to get down there this evening and just sit and hold his hand for a little more than an hour. I sat and talked to him, and read a little bit – I was just there. The rhythmic sounds of the machines beeping, his ventilator “breathing”…. only occasionally disrupted by him moving around and squeezing my hand.
Shortly after I arrived, I heard a commotion in the area, a nurse calling for help in another room. One of the nurses that caught me mid-faint the other day came in laughing…. he said, “I don’t mean to be inappropriate, but I had to share. I have worked here for a while, and we rarely see visitors faint – now I’ve seen it twice in a couple days… I think you are bad luck!”
He said it completely in jest, its good to know the Russell family leaves a lasting impression. I guess I am becoming a legend among the nurses there in the ICU! 😂 I am really thankful for the staff in this area, so far they have been amazing!
Pops had an uneventful night, thankfully. They kept him sedated and kept his breathing tube in, and it was a stable evening. I am thankful for that.
This morning Michelle, Adam & I went back to see him. We were able to meet with the neurosurgeon, after he went in to check on Dad. He was able to explain to my sister and brother a little more about the surgery & progress. He was happy with how my stable dad was this morning. They were able to remove the pressure monitor from his head – and replaced it with a shiny set of staples.
They stopped the sedative a little after 8 am this morning, and he has been slowly waking up. They aren’t in any rush to wake him, and want him more responsive before they take out his breathing tube.
They did tell us he was able to follow some simple commands – squeeze fingers, move his head, open his eyes, move his legs…. he was twitchy, but that is part of waking up from the sedative. He knew we were there, was responsive to our voices and our touch.
We didn’t stay for too long. It’s hard in the ICU. He is being closely cared for and monitored. The staff is very kind and informative- and they enjoy making fun of me for fainting…. and I am thankful for good people.
So we will be there as often as we can. We will tell him we love him. We are going to encourage him to take his time, heal, and follow the directions of medical staff. This recovery is going to need his full effort and more patience than he has had in his life….
Keep those prayers for him coming. He needs all the help he can get!
But this isn’t a pity party for me and my siblings. I don’t share for you to feel sorry for US – we will get through it. I share because it helps me deal. I share because maybe it will help someone else… maybe you have some words or knowledge that will help us get through.
As mentioned before, my dad has a seizure disorder (see older post called “Groundhog Day”)…. He often is found in his apartment, basically unconscious, banged up from the fall, and confused. This time was different.
He was found outside. I don’t have the details of the state he was in. He was in bad enough shape for the emergency responders to think he may have been assulted (I think we have ruled that out)…. Usually we do the CT scan, and it comes back clean. This time, there was a bleed on the right side of his brain.
He had been put on some blood thinners last week, because they were concerned with how hard his heart was having to work. The blood thinners made the bleed more risky.
In the ER, they gave him something to reverse the effect of the thinner, and had to wait 12 hours before they would operate. I didn’t get to see him before they took him in, but from what I understand, we was able to form some words, but not coherent.
They took him in for surgery about 12:20 pm. I didn’t hear from the neurologist until about 3:30 pm.
Things did not go as planned.
They removed part of his skull to release the pressure. That was smooth sailing. But…. there was a damaged artery from the injury. It started bleeding, and it took some time to get it under control. He lost a lot of blood, and we almost lost him…..
When the brain surgeon tells you he was scared, it’s not easy to hear. Even when he immediately says – he’s stable now, but it was critical.
The work they did to stop the bleed caused some additional swelling and bruising to the brain. Nothing they are concerned with, but it means that they were not able to put the piece of his skull back in. Instead, they put the piece of the skull in his stomach to keep the tissue healthy – they will put it back in a month or two. 😳 So he had a hole in his skull, covered by skin.
They have a pressure monitor inserted on the other side of his skull to make sure there is no additional swelling or cause for concern. I asked if we should be concerned of further damage – should he fall from a seizure or general unsteadiness, and hit his head…. the doc didn’t think it was a concern. **Kind of funny side note – the doc said my dad has a thick skull, and I thought duh, you don’t know the half of it – he is stubborn as they come! But he literally meant that the seizure medicine makes the skull density thicker than average… who knew?!?**
He was intubated but they hoped to remove it this afternoon. Dad was starting to come to, but couldn’t respond to commands, so they decided to sedate him and keep things stable while they got an IV/central line in place (he is a notoriously “hard stick”).
So when I finally got to go in the ICU to see him, I think it all just caught up with me, and literally knocked me on my ass….. I stood there holding his hand, pondering how pissed off he was going to be when he woke up with all the monitors, the breathing tube, the partially shaved head (and hole in the skull), the hands restrained (so he wouldn’t rip the tube out of his throat)…. anyways – past recent experience tells me that he was not going to be happy being back in the hospital, especially in this condition.
So I was standing there, thinking…. and I started feeling overheated. I took off my sweater and stood for a minute longer. At that point, I felt I needed to excuse myself and go sit down. I said as much, but never made it. I remember holding on to the side of the bed. I remember my knees giving out on me a couple times (the nurse thought I was doing some squats to exercise while I stood there), but then she knew I was going down! The nurse named Nate grabbed me before I hit the ground, the nice female nurse got a chair under me…. next thing I know I am sitting there with cold rags on my head and chest, they are checking my pulse and giving me orange juice with ice to drink! Yep… I was that family member who passes out when they are supposed to be there being the strong one! So embarrassing….Once I was stable they walked me back out to the waiting room so they could get the IV in place.
So I waited a few more hours. Calling in often to see if they were done and I could go back in. Finally at 7:30 pm I was allowed to go back again – but not allowed to be in there without a chair to sit in….
They were giving him some blood to continue to replenish what he lost, and they plan to keep him sedated all night – let his body do some healing. I was able to tell him I love him, and trust him in the care of the great ICU team at Memorial Hospital…. it was hard to leave him.
The stress of the day, the emotional and physical toll it took on me was weighing me down. We almost lost him…. we almost lost him.
They say that time heals all wounds… I am not sure, though I want to believe it’s true.
My brother, my sister and I are very close. We may piss each other off some times, but there is nothing that I can think of that would cause me not to be a part of their lives for well over 20 years….. My dad has 4 brothers and 1 sister. He does not talk to any of them, really hasn’t for over 2 decades.
My siblings & I talk to those family members we can connect with, but have always honored dad’s stubborn wishes. We have tried over the years to bridge the gap. But we do have bigger battles to forge with that man, especially now. Literally life & death type of stuff….
Here is my advice to family members who want to mend fences…. show up. Be there and tell him you love him and want to help. It’s my instinct to try to make everything better for everyone, but I am tapped out…. I need you to take the risk and start building your own bridges, because we could use the help of our family right about now. He may reject you. He may reject help. He does both these things to us often. But I am giving you the chance, the invitation…. show up. Don’t regret that you didn’t ever take the chance to reconnect. He doesn’t know it, but he needs you.
Well…. 3 weeks and 3 trips to the hospital for Pops. It is hard to keep a positive outlook, when we seem to be living in this horrible loop. I can’t imagine how my dad feels, or if he even really understands what is happening. I missed a call from the hospital at 1:30 this morning & called to confirm my suspicion about 6 o’clock.
This time is worse? Or different…. his “fall,” which can be presumed came from another seizure – caused a head injury. He is in surgery now, to relieve some bleeding on his brain.
I am sitting in the waiting room…. waiting to see him once he is out of surgery. Waiting to see how he is doing….. waiting to make sure he is “okay”.
Something has got to change. This time, they are going to have to give us a different plan. A better plan for how Dad will be taken care of. It is beyond frustrating & I am really not sure what to do next. Two times ago he walked out of the Rehab facility, this last time we had “home care” prescribed – but they can only come a couple times per week (WTF good does that do)?!?
But however many times it takes to get it right. We will be here. Waiting for someone to help. Waiting for someone to point us to a different path, that leads us to change. We come up with plans and ideas, but still lack the control to put things in action…. he is discharged and feels like he is okay to make his own decisions. You can’t help someone who doesn’t think they need it.
And yes… for those who are wondering I went and watched my kids team with the district championship before coming to sit in the waiting room – because I need some good to balance out the bad. I’m sure some might think it selfish, but I’ve done run out of fucks to give… #SorryNotSorry
I’m not accustomed to not having an out of the home job…. With any luck, I will get some good news on that front tomorrow! But I digress…. here is a snapshot of what my days look like this summer, with kids who are pretty independent & a lack of extra funds for extravagant adventures:
1. Stayed in bed until 9. I was awake by 6, but I got to be lazy….
2. Cooked breakfast for the kids & I – eggs and linguesa.
3. Cut up and marinated the meat for dinner tonight – Grilled kabobs!
4. Cleaned up kitchen and emptied dishwasher.
5. A quick strength training work out from my EO friends… ouch
6. Showered & got dressed.
7. I watched a fun and empowering Facebook Live feed from Lindsay Teague Moreno – love her message!
8. Target run for…. wait for it – cat litter, stain remover for the baseball pants, face wash & toothbrush heads. I know, good stuff 🤣
9. Watered the flowers & plants out front…. and the trees in the back yard.
10. Vaccumed and dusted the living room – including the various Giants bobble-heads & the plantation shutters…. including getting all the dead bugs from the window sill behind the shutters.
Pretty soon I am going to go clean up the mountains of empty boxes in the garage so we can make a dump run & I can work on my next furniture refinishing project!
Exciting times people…..
Now, I know there is a lot of fun that can be had for not a lot of money – and we are swimming, going to the beach…. maybe get some hiking in soon. There is a lot of great ways to make memories while I am home with the boys right now. But, our crazy All-Star baseball schedule this week is encouraging us to embrace the quiet and chill when we can.
#CrazyAsAMother #TargetRunDaily #CleaningIsMyCardio #DomesticGoddess
I would cry. Seriously, I could lose my shit, or I can take a deep breath – relieve stress through laughter and keep being me. Not that one way is more right than the other, but given the options, I guess I would rather laugh – even when it doesn’t seem appropriate.
This is a long post – but I am going to pour my heart out here….. maybe some folks don’t want to know all the details, maybe some feel it should not be shared. I kind of feel like you never know who you can help by sharing your story.
My dad is sick. He has some sort of a seizure disorder. They don’t really know what triggers them. He is on a whole pharmaceutical regimen that baffles my mind. Sometimes we go for months and months without any major “incidents” – the various meds doing what they are intended to do, and all seems okay with the world. Then something shifts. Something changes and we find ourselves back at the hospital….
It is like a bad version of the movie Ground Hog Day
It sort of goes like this…. he has a seizure. Sometimes at home, sometimes in public. The folks that live in the building with him are typically really good about calling an ambulance, but sometimes he manages to convince them not to call. Most times they will at least call one of us kids to let us know it happened.
A seizure occurs when there is abnormal electrical activity in the brain. Seizures may go virtually unnoticed. Or, in severe cases, they may produce a change or loss of consciousness and involuntary muscle spasms or convulsions. Seizures usually come on suddenly and vary in duration and severity.
Most of the time, my dad has what would be considered a severe seizure. He doesn’t remember them happening. He doesn’t really know when they are coming on. He falls down and is injured often. He is usually completely out of it for at least the first 24 hour after we arrive at the hospital. We have driven him to the hospital ourselves (with himhaving NO IDEA who we are), he has been taken by ambulance more times than we can possibly remember. That part of the script is always a bit different and a bit more challenging – but the hospital visit pretty much goes like this (**insert inappropriate giggles here**):
Dad is understandably out of it. ER staff asks us the same questions – name, date of birth, what we think happened, has he been drinking, is he on any drugs, etc, etc….. While he may seem like he is drunk – he hasn’t had any alcohol for over nine years. The only drugs he takes are the 20 different things that are prescribed to him by the team of doctors he sees on a regular basis. MOST of the time, he takes them as prescribed, but as I mentioned, he can be confused and his thoughts muddled – it a a disorder of the brain, after all. My dad keeps a typed list of all his current meds and dosages – we hand this over to the staff. They input it. They take him for a CT. The CT comes back clear. They ask us if he has a kidney or liver disorder. We tell them they have tested that multipletimes. Ultimately, they will admit him. They will tweak his anti-seizure meds. They keep him for 24 hours to see how he tolerates the change. They hydrate him through an IV for a day or two. They tell him he is fine and send him on his way, tell him to follow up with his neurologist in a couple weeks.
The nurses sometimes get annoyed with us kids, because we seem light hearted about the whole situation, but seriously, until we can find some doctors willing to try something different to help him, we can tell you how this whole thing is going to go. We have now seen this played out too many times. It is frustrating… so we laugh sometimes.
There have been times where he doesn’t know who we are. Even after we tell him. It hurts, but it isn’t him – it is his illness. Again, I can either laugh it off, or let it break my heart. Sometimes he is extremely paranoid – one time he was convinced that he was allalone on the floor they moved him to, and they were trying to kill him. There was a poor technician trying to do an EKG on him, and he FREAKED out. He started yelling that she had killed her husband, he saw it on the news, she did it first in English, then in Spanish…. He tried to pull out his IV and leave, he was very scared. What do you do when you can’t do a damn thing to help someone you love?!? It was scary. It sucked. Mostly I was sad because I was completely helpless. I fucking hate that.
This week, my dad had a seizure and went to a hospital. He didn’t want to stay, he didn’t want to go to his home…. so my brother brought him to Hollister. I saw him that afternoon, and I could tell he didn’t feel good. He hadn’t been taking his meds – still not sure why. The next day he got worse – though my brother had him start his medications again – he became unable to respond/communicate, and my sister and brother called for an ambulance.
The ambulance took him to Salinas, because the hospital here is not equipped to deal with it – so here we go again….. I joined my brother and dad down in the ER a couple hours after he was taken down there. Pops was out of it when I walked in, but what he said tore out my heart and scared me…..
Dad: We have got to be getting near the end.
Me: The end of what dad?
Dad: The end of the end…..
He was pretty much asleep, so I tried to not make too much of it. When they finally took him to a room, I heard him tell the nurses that he thought he was getting on a ship. I laughed, because he was safe, he was being cared for, and it was completely ridiculous. My brother and I were answering the questions again for the staff that would be caring for him and my dad was getting upset…. he kept interrupting our conversation with the nurse.He was insisting that she take us outside to see the sea urchin, before it dissipates….so we said okay and left the room to see the sea urchin. Because what else can you do???
After a day or so, my dad starts making some sense. But it takes a while for him to be himself. The nurses and staff ask if he seems “normal”…. uh – no?!?! The only thing that is close to normal, is his frustration that he can’t get his thoughts out clearly. His irritation with being in the hospital is normal. Yesterday he told us that he thought we sent him off on a ship to die…. He said, “I thought I died, I swear, I thought I died.”Ugh.
Something has got to give!
The hospital is talking about discharge again, and we are trying to take a different route. We are trying to get him into a facility in Hollister. It doesn’t feel good putting him in a “home”, but he needs someone to help make sure he is taking his medications on schedule, that he is eating well, that he is getting rest and hydration. We want him in town, so that he is closer to all of us. But it is difficult. There is insurance, approvals, his limited income, his risks…. and the emotions – oye, the emotions are epic.
He doesn’t like to be a “burden” on us kids. He doesn’t like that we worry about him, or that we are constantly running to the hospital to see him when the seizures take over. But how could we not? I feel like he is too young to be in a care facility, but I am not able to take care of him myself. It is hard for me to reconcile this version of my dad, with the guy who was larger than life. I am SURE he hates this. I hate it for him. I don’t want to take away his independence, but he NEEDS HELP. We need help.
Just like there is no instruction manual for raising kids, there is no definitive source for how to care for your parents when they need you. What is happening to my dad is not anything to laugh at, but sometimes it is the only thing helping me keep it together. Adulting is hard. If you need me, I will be in my pillow fort, coloring.