I often get told I am one strong woman. I don't see myself as such. Here is my response to that statement.
Strong... Depends on the day :) I have many days I close myself in the bathroom and cry and feel sorry for myself and my life, then put on a happy face and go back to life. I'm in a facebook group for spousal caregivers and it's been a lifesaver. I can say things there I can't elsewhere for fear that people will think I'm a horrible person or say negative things about it when I just need to vent. I can talk about anything, kids, hubby, me.... Someone there has been there done that thought that. I think half my friends would drop me fast if I said something like how much easier it would have been if he had never woken from the coma 2 1/2 years ago, half of the rest would say things along the lines of how can you think something like that. The remaining 25% would vary between texting, messaging or calling to ask what's up and why are you thinking that, and saying I understand, what can I do to help.
Usually those feelings happen when I have to cancel something I'm looking forward to because he needs me. I married him knowing he had parkinsons (triggered by surgery to repair a brain aneurysm), and a probable stroke during the surgery(he had underlying parkinsons, the brain trauma kicked it into high gear).
I'm an RN and I know better than most what will happen with the parkinsons, that only makes it easier from a clinical standpoint, not as a wife. They discovered the leukemia after we were married. It wouldn't have changed the outcome, I still would have married him.
The kid...she's a lot easier to face, mental illness is a lifelong illness. It could get worse at any time, and I am thankful she's as stable as she is. When she was a teen it was harder emotionally for me. All the what ifs, how will she be able to do anything, live her dreams, what will happen if something happens to me, will she have to live at home forever (I wouldn't mind, but it would mean that she's not likely living her dream of becoming a marine biologist). Its also not a terminal disease and new medications and treatments come out fairly often and are much better at managing the disease. For her there is hope and always will be. She is currently unmedicated by her choice. She's managing it with learned techniques, She's outspoken about mental illness and doesn't hide it, so all her friends and professors know.
It's life, you do what you have to. You fall down, you have a tantrum, you pick yourself up and step back up to the plate for the next inning.
Life goes on.
Life in and of itself is a terminal disease.
Life has a way of going on.
You find the small victories and hold to them tightly, because when there are setbacks you need a victory to remind of the good in life.
Showing posts with label hospitals. Show all posts
Showing posts with label hospitals. Show all posts
Wednesday, April 6, 2016
Thursday, December 31, 2015
Life, Death, and how to decide.
Lee told me today he hates taking all these pills and he wants to talk to the doctor about stopping some of them.
I took out each of his pills and told him what each one is for. I also told him that if he does stop the leukemia medication he would probably die within a few months, and as much as I really do love him and want him around I would support his decision.
We discussed the parkinsons, and he understands that one really is only helping the tremor be not so bad, and he knows its not a cure and it will get worse eventually. He knows that carbidopa/levodopa doesn't even slow the progression of parkinsons, it just makes it easier to live with the symptoms. He may decide to stop it, I won't make that decision for him.
The Prozac helps with his anger control, supposedly, I know that the dementia is affecting his moods more and more and Prozac isn't likely doing much.
The rest he's on... Pantaprazole( think that's it) for reflux, vitamin D, Iron(the leukemia causes anemia, his iron was pretty bad) a multivitamin, seroquel(because the iron doesn't play well with sinimet so he can't take that at bedtime he's on the seroquel to knock him out despite the tremors trying to keep him awake), and hydrocodone(he generally only takes one in the morning when he wakes up, that's when the arthritis in his lower back is the worst), but he can take it up to 4 times a day, tamsulosin for an enlarged prostate,i Gleevec for the CML, and Claritin or zyrtec for year round allergies.
It looks like a lot in his pill box but I know realistically it's not that much.
I am very realistic in the outcome, I know he will die sooner rather than later. I know his meds aren't cures and his diseases are terminal. He knows that also. I've never kept the truth from him or downplayed the situation at all. He would make the decision knowing the outcome, and I would be ok with whatever decision he makes. We have actually discussed assisted suicide and he knows there is that option(he's catholic so he has said from the start that's not an option). He and I both don't see stopping his meds as suicide, we see it as allowing nature to take its course.
As much as I love my husband I can't fix him. I wish I could wrap my arms around him a
or wave a magic wand and cure him. I can't though, and I am most certainly aware that he is dying and I will lose my knight in shining armor. I will take every minute I am given though, and cherish every bit of it. Of he does decide to stop the medications we will then discuss hospice.
I have known for many years that my happily ever after won't be forever after.
I took out each of his pills and told him what each one is for. I also told him that if he does stop the leukemia medication he would probably die within a few months, and as much as I really do love him and want him around I would support his decision.
We discussed the parkinsons, and he understands that one really is only helping the tremor be not so bad, and he knows its not a cure and it will get worse eventually. He knows that carbidopa/levodopa doesn't even slow the progression of parkinsons, it just makes it easier to live with the symptoms. He may decide to stop it, I won't make that decision for him.
The Prozac helps with his anger control, supposedly, I know that the dementia is affecting his moods more and more and Prozac isn't likely doing much.
The rest he's on... Pantaprazole( think that's it) for reflux, vitamin D, Iron(the leukemia causes anemia, his iron was pretty bad) a multivitamin, seroquel(because the iron doesn't play well with sinimet so he can't take that at bedtime he's on the seroquel to knock him out despite the tremors trying to keep him awake), and hydrocodone(he generally only takes one in the morning when he wakes up, that's when the arthritis in his lower back is the worst), but he can take it up to 4 times a day, tamsulosin for an enlarged prostate,i Gleevec for the CML, and Claritin or zyrtec for year round allergies.
It looks like a lot in his pill box but I know realistically it's not that much.
I am very realistic in the outcome, I know he will die sooner rather than later. I know his meds aren't cures and his diseases are terminal. He knows that also. I've never kept the truth from him or downplayed the situation at all. He would make the decision knowing the outcome, and I would be ok with whatever decision he makes. We have actually discussed assisted suicide and he knows there is that option(he's catholic so he has said from the start that's not an option). He and I both don't see stopping his meds as suicide, we see it as allowing nature to take its course.
As much as I love my husband I can't fix him. I wish I could wrap my arms around him a
or wave a magic wand and cure him. I can't though, and I am most certainly aware that he is dying and I will lose my knight in shining armor. I will take every minute I am given though, and cherish every bit of it. Of he does decide to stop the medications we will then discuss hospice.
I have known for many years that my happily ever after won't be forever after.
Thursday, October 1, 2015
The state of Life and things to be
8 years ago I met my soul mate. Our first date we sat in a coffee shop for 3 hours, until they closed and kicked us out. We knew from the start we were meant to be.
After three years of dating we decided to move in together and life was wonderful.
November 2010 that changed forever. He woke up at 4 am to use the restroom, got dizzy, fell, hit his head on the wall and passed out. He had a cold and he thought it was just from the congestion. I don't know the order of things, he may have passed out then hit his head, things happened and he doesn't remember it all. Being a nurse I kept an eye on him and when he was up and functioning I took him to urgent care. They did a CT scan and told us there was "something", probably an artifact, but we needed to follow up with his GP. At the GP they did an MRI and promptly sent us to a neurosurgeon. They had discovered a berry aneurysm. The aneurysm was sitting on his optic nerve and he was losing vision in that eye.
We made the decision to have it repaired and not risk it rupturing. That was the worst decision we made.
In Feb 2011 he went into a 12 hour surgery. They were unable to repair the aneurysm but were able to move it off the optic nerve so he was a candidate for a coiling procedure.
He spent almost a week on the neurology floor. They had PT, OT, and ST working with him. He was unable to walk. After 6 days they sent him home in a wheelchair with a cane. He fell the next day trying to walk. Back to the hospital, he bent the titanium plate in his skull, but was fine they told me.
Over the next few days he got worse and worse. He started hallucinating badly. I took him back to the ER and fought with the doctor. He saw nothing wrong. Every time he was in the room Lee was ok, oriented kind of. Then a nurse was in there when he started in again. He convinced the doctor Lee needed to stay and that it was not a psych issue but it was a medical issue. They figured out he was having a reaction to the steroids they gave him to prevent brain swelling. He was there another week and came home stable.
Months of therapy and he was then able to use just a cane 100% of the time.
I need to back up a little and talk about the tremors. He has an essential tremor. They aren't a big deal and don't cause death. He's had it 30+ years and his daughter also has it.
After his surgery, during a follow up his surgeon said the magic words "have you ever been checked for Parkinson's disease(PD)". Off to another doc, on to a new diagnosis and medication.
Life went on and we decided to get married. On July 24 2011 I married the man of my heart. Despite the complications life had thrown us we were very much in love. He is 29 years older than me, a Vietnam vet, but when we met he was much younger. I never would have thought he was his age if I had just met him on the street. Before the aneurysm we traveled, camped and hiked. We were active and lived life. PD changed that, slowly but surely.
Fall comes, it's almost a year since they discovered the aneurysm. Lee goes in for a routine physical.
It ended up not so routine.
It ended up a journey of more lab tests, more doctors, New words added to our medical vocabulary like bone marrow biopsy, chronic myelogenous leukemia(CML), and a doctor telling us it's incurable, but slow progressing. "Something else is likely to kill him before the leukemia".
I can live with that. I have him for a long time still right?
2013 November. I am at work and my parents call me. I hear words I don't want to. We are at the VA ER with your husband and they doctor said you need to get here immediately.
I got there within 30 mins. He was having severe dyskinesia and was very confused. They did labs, scans and I don't remember what else, but we weren't there long when they told us an ambulance is on its way and they are taking him to sacred heart for a direct admit to the ICU. He was in acute renal failure, metabolic acidosis and his white count was very high. When he got to the hospital he was unresponsive except to painful stimuli.
They kept him in icu only one night before moving him to the Neuro floor. During that time he was still unresponsive except for a grimace to painful stimuli, never woke up, never talked to me. After a week they sent a palliative care doctor to speak with me. His daughter was there and we discussed it with his son and the rest of his family, even those not local, despite them being far they are family and mean a lot to my husband. With their consent I made the very hard decision to place him on hospice care. 30 mins later I left, his daughter stayed with him. I had been gone 30 mins when I got a call "Jen, dad's awake and wants to talk to you".
He was fine. Weak but fine.
He spent another week in for therapy. We left with a diagnosis of Lewy body dementia, as well as the acute renal failure and acidosis.
We have had another incident similar to that, not near as serious though.
He keeps getting weaker and more confused.
I don't believe it's Lewy body dementia and neither does his PT. It's something we will address at his next Neuro appointment.
This first pic was early in our dating years. We were at the lake and had been boating and tubing. It was awesome and one of my favorite memories of us that I'm sharing with you.
After three years of dating we decided to move in together and life was wonderful.
November 2010 that changed forever. He woke up at 4 am to use the restroom, got dizzy, fell, hit his head on the wall and passed out. He had a cold and he thought it was just from the congestion. I don't know the order of things, he may have passed out then hit his head, things happened and he doesn't remember it all. Being a nurse I kept an eye on him and when he was up and functioning I took him to urgent care. They did a CT scan and told us there was "something", probably an artifact, but we needed to follow up with his GP. At the GP they did an MRI and promptly sent us to a neurosurgeon. They had discovered a berry aneurysm. The aneurysm was sitting on his optic nerve and he was losing vision in that eye.
We made the decision to have it repaired and not risk it rupturing. That was the worst decision we made.
In Feb 2011 he went into a 12 hour surgery. They were unable to repair the aneurysm but were able to move it off the optic nerve so he was a candidate for a coiling procedure.
He spent almost a week on the neurology floor. They had PT, OT, and ST working with him. He was unable to walk. After 6 days they sent him home in a wheelchair with a cane. He fell the next day trying to walk. Back to the hospital, he bent the titanium plate in his skull, but was fine they told me.
Over the next few days he got worse and worse. He started hallucinating badly. I took him back to the ER and fought with the doctor. He saw nothing wrong. Every time he was in the room Lee was ok, oriented kind of. Then a nurse was in there when he started in again. He convinced the doctor Lee needed to stay and that it was not a psych issue but it was a medical issue. They figured out he was having a reaction to the steroids they gave him to prevent brain swelling. He was there another week and came home stable.
Months of therapy and he was then able to use just a cane 100% of the time.
I need to back up a little and talk about the tremors. He has an essential tremor. They aren't a big deal and don't cause death. He's had it 30+ years and his daughter also has it.
After his surgery, during a follow up his surgeon said the magic words "have you ever been checked for Parkinson's disease(PD)". Off to another doc, on to a new diagnosis and medication.
Life went on and we decided to get married. On July 24 2011 I married the man of my heart. Despite the complications life had thrown us we were very much in love. He is 29 years older than me, a Vietnam vet, but when we met he was much younger. I never would have thought he was his age if I had just met him on the street. Before the aneurysm we traveled, camped and hiked. We were active and lived life. PD changed that, slowly but surely.
Fall comes, it's almost a year since they discovered the aneurysm. Lee goes in for a routine physical.
It ended up not so routine.
It ended up a journey of more lab tests, more doctors, New words added to our medical vocabulary like bone marrow biopsy, chronic myelogenous leukemia(CML), and a doctor telling us it's incurable, but slow progressing. "Something else is likely to kill him before the leukemia".
I can live with that. I have him for a long time still right?
2013 November. I am at work and my parents call me. I hear words I don't want to. We are at the VA ER with your husband and they doctor said you need to get here immediately.
I got there within 30 mins. He was having severe dyskinesia and was very confused. They did labs, scans and I don't remember what else, but we weren't there long when they told us an ambulance is on its way and they are taking him to sacred heart for a direct admit to the ICU. He was in acute renal failure, metabolic acidosis and his white count was very high. When he got to the hospital he was unresponsive except to painful stimuli.
They kept him in icu only one night before moving him to the Neuro floor. During that time he was still unresponsive except for a grimace to painful stimuli, never woke up, never talked to me. After a week they sent a palliative care doctor to speak with me. His daughter was there and we discussed it with his son and the rest of his family, even those not local, despite them being far they are family and mean a lot to my husband. With their consent I made the very hard decision to place him on hospice care. 30 mins later I left, his daughter stayed with him. I had been gone 30 mins when I got a call "Jen, dad's awake and wants to talk to you".
He was fine. Weak but fine.
He spent another week in for therapy. We left with a diagnosis of Lewy body dementia, as well as the acute renal failure and acidosis.
We have had another incident similar to that, not near as serious though.
He keeps getting weaker and more confused.
I don't believe it's Lewy body dementia and neither does his PT. It's something we will address at his next Neuro appointment.
This first pic was early in our dating years. We were at the lake and had been boating and tubing. It was awesome and one of my favorite memories of us that I'm sharing with you.
This next one was last month.
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