4 weeks...and 1 day

4 weeks. 4 weeks and 1 day since I last lay my head on your chest. 4 weeks and 1 day since I heard your heart beating strong in your chest. 4 weeks and 1 day since I soaked your chest in tears as I said I love you. 4 weeks and 1 day since I held your hand tight, comforted when you squeezed it back. 4 weeks and 1 day since I felt your hot breath across my hair as I sat by you, my head on your chest. 4 weeks and 1 day since I last massaged your hands with lavender lotion. 4 weeks and 1 day since I caressed your hot face with a cool wet cloth trying to bring your temp down a little and make you more comfortable. 4 weeks and 1 day since I sat there counting each breath, timing the long pauses between, wondering if it was your last.
4 weeks since I said good bye. Hoping, praying that you really weren't gone.
4 weeks of nights I lay in bed crying, hugging your blanket wishing it was you.
2 weeks of nights since I could bear to turn off the light, most nights at least, and see our stars on the ceiling and walls. The stars we slept under every night. The stars we talked under every night. The stars we shared our hopes, dreams, frustrations, fears, and love.
10 years my heart was yours.
10 years I held your heart close to mine.
5 years your wife.
5 years your caregiver.
10 years of happiness and love.
4 weeks of heart break.
4 weeks of heart ache.
4 weeks of missing you and wishing you were back at my side.
4 weeks wishing I could hear you call me Jenny one more time.

It's really not poison

Oh good God.
I left two pain pills out for Lee to take in case the kidney stones hurt him while in an at work.
I get home tonight, he's in bed. I go in to talk to him and he says "I didn't take that poison" . After several minutes of me asking him questions he finally says "those two poison pills you left me, you said they were poison so I didn't take them".
I just want to cry for him. I wish I could get through to him all the time.  My heart breaks when he's like this because I can't help him, I can't fix him, I can't make him all better and as a nurse I should be able to.
But I can't fix this. I can't make him better. Instead I climb into bed next to him, after getting his bed time pills together and convincing him they aren't poison. I give him a kiss and I lay here silently crying as he drifts off to sleep and I listen to his slow, even breathing, my heart full of love, but breaking at the hopelessness I feel.
I am a caregiver. I am a wife. I am a nurse.

Life With A Terminal Disease-or how we wait for death

Today a friend and her husband have been married 23 years.
I love seeing things like that. It used to make my heart ache every time I saw something like that. While happy for my friends and family, it still made me realize how short my ever after really will be. Life with terminal diseases sucks, but at the same time is a blessing.
 I know my forever after won't be as long as yours, my parents, my grandparents, and at the worst moments I ask myself "is this it, has my ever after ended today"? Will there be another day for us? Will he remember who I am tomorrow?(there have been recent days that no, he doesn't know me).
 I just take it day by day, and I try to make the most out of every minute  we will have together.
I was talking with my mom this morning about something I want to do, but know I can't until Lee is gone.  Mom  said "well that won't be for another 10-15 years".  Reality is, lewy body dementia prognosis is 5-7 years. The Parkinson's disease and leukemia are an issue, and there's a timer running out on those also. I take it Month to month, day to day, hour to hour, minute to minute, second to second, and count myself as lucky. We know it will end sooner rather than later. We can plan for it, I can plan for my future without him, and we can let ourselves live like today is our last day together.
I encourage everyone to live that way. Its not sick or morbid, its living for now instead of tomorrow because you never know what tomorrow will bring. Live, love, laugh, and make the most out of today.

Strong for Life, Or how do you do what you do

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.

The Ugly Side of Me

Once upon a time I had dreams. I had aspirations. I knew what I wanted with life.
Real life got in the way.
I became a single mom.
I did what I had to.
I went to school. I became a nurse. I grew up and learned how to support my family. I didn't always do things the best, but we made it through everything.
I got married. I love this man with all my heart, by this isn't the life i pictured or wanted.
I work a low paying job(for my career), but the benefits are good,the hours are good, and if I'm needed at home I have the ability to do that.
I hate being a nurse. I didn't want to be a nurse, yet certain people, when I try to talk about my feelings, will turn things around and say "you always wanted to be a nurse as a kid". Reality is that no I didn't. A woman important to me is a nurse. I wanted to be like her. It wasn't me though. I had bigger dreams and aspirations. I was afraid to be me, to say what I wanted to be, I was always pushed in the direction others saw for me. I always had the need, the drive, to be what others wanted for me. I regret it.
I'm not me. I'm a nurse, a mom, a wife. I regret the first. They second filled my life with love and hope and taught me so much, how to love others at the most basic, the most complete level. The third I am madly in love with, despite the complications of life. He completes me at the deepest level. He is the reason I needed to be a nurse. I needed to do it for him, despite not knowing him until 9 years ago. It's what he needed, and now I have the skills to care for him, to discuss things with his doctors and therapists at a clinical level with emotional detachment.
As a child I REALLY wanted to be a marine biologist. My oldest child now carries that dream, and I hope and pray she doesn't give it up.
My real dream, now that I'm a grown up is research. I'm still not 100% certain, but that's not bad. I want to be a microbiologist with a minor in virology. I also want to study neurobiology, but I think majority of that is because of Lee. I dream of finding a real, legit, honest to God it works cure for Parkinsons disease.
My dream is dead. I wont ever do any of that. I can't get financial aide, and I certainly can't afford to pay for a doctorate level education, or even a Masters, let alone a bachelors. And if I could...I still would have to work full time. We couldn't live without me working. How could i fit school, work, caring for Lee in and have time to study? I don't have a time turner.
I really doubt anyone would support a gofundme for a 41 year old burnt out woman.
So my dreams are now dead.
I have to live the rest of my life knowing I really did fail at me.

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.

My cynical life

I hate doctors. Each time I take Lee to one they point out something I should have seen. Something that shows a progression of the Parkinsons. I live with him. I'm with him every day. I see what's happening. Yet I don't really see it.
It took a doctor today, a urologist at that, to point out how Lee is standing up from a chair. How he is leaning far forward, which is a high risk for a fall. He's already a high fall risk, and knock on wood... It's been a couple months since he has fallen.
I hate that I have to work, I wish I could stay home with him. If I could then we could have our own place. But he can't be alone 9+ hours a day, so we live with my parents.
I am really in need of a little vacation. Bekah and I want to plan a no plan drive east vacation. Just get in the car and drive until we get where we are going, which is to say... Nowhere. No plans, just pack and go.
I'm now realizing I probably won't be able to do that. We talked about trying to reserve the fire look out again and just me and her going. I don't know if that will happen either.
Parkinson's sucks. Bad.

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.

This next one was last month.

life happens

And boy did life happen to us.
On November 3rd things fell apart.
0900 home from work talking to Lee, normal conversation, bed.
1700 awake, things seem fine, Lee's Parkinson's is bad
1730 have Lee amantadine to help the dyskinesia. Pretty normal conversation, occasional weird random comment.
1930 Lee asked for help getting in bed and getting his cpap mask on(because the dyskinesia was so bad). He kept getting angry at me, telling I want doing it right. 2000 dad stepped in and helped, I packed my lunch and left for work at 2030.
2200 mom texts "call me immediately" I call, they are at the VA hospital with Lee, the doctor thinks he had a severe reaction to a medication and I need to get there as soon as possible.
I was there close to 2230.
Dad had gone in to check on Lee about 2130. He was really confused, not making much sense and hallucinating.
When I got back to the room with him he was sitting on the end of the bed, unable to be still and occasionally yelling involuntarily. There were several staff members standing around him, partly to make sure he didn't fall and partly because he was rather wild and they were concerned about everyone's safety. They attempted to sedate him with ativan. It didn't help. At all. He finally called enough they were able to get labs drawn and take him for an xray and CT scan.
Labs came back and his white count was 23000(normal is 8-10000), his creatinine was 2.9(I think normal is under 2, it was high), and his lactic acid was 5.5(2.9 and under is normal). Immediately they started transfer arrangements to sacred heart medical center ICU. He was in acute renal failure and metabolic acidosis.
I went home, packed a bag and headed to the hospital to meet him, and I beat him there. I let the staff know who I was and they showed me the waiting room. Before he got there the doctor talked to me a little too get an idea of what to expect. He got there finally and the work started. They put a catheter in him and a central line, drew more labs and started consults with other doctors. After a few hours I went home, he was calm and in good hands. During the day he stabilized and they moved him to the Neuro floor around 6pm.
Over the week he declined. Became fairly unresponsive, didn't know who we were when he was awake, had to be restrained all the time , went oriented at all. He also want eating or drinking or taking his meds.
Friday, just 5 days after this all started, they called in a specialist from another hospital. What they failed to tell me is that it was a palliative care doctor, hospice, to talk to me about what I wanted and what Lee would want. I knew what he wanted and didn't want done, and it was hard for me to say no feeding tube, no life support. She left and I talked to his kids and his sister in law. With their support I made the decision to put him on hospice care. I told his nurse so she could let his doctor know, and I went home to get ready for work. I left the hospital knowing that probably within a couple weeks I would be a widow. I was angry. I finally found the one person who made me feel complete, whom I had married just 2 years ago...and now I was going to lose him.
I called my mom and told her, I didn't want to have to say those words to anyone's face.
I cried and l let it all out for the night, determined that I wouldn't cry again that night.
An hour later my phone rings. It's his daughter, she was with him at the hospital. Jen, dads awake and wants to talk to you. I wanted to ask what kind of sick joke was she playing, but I didn't, and I talked to him. Besides being a little confused and having no memory of that week he was normal... he knew who I was, where he was, and he was eating and drinking. I was so afraid to get my hopes up, knowing that sometimes before a person dies they will rally and seem to be getting better.
For the next week he worked with physical therapy and got his strength up, and after 12 days he came home, NOT on hospice care.
Final diagnoses- renal failure, acidosis, encephalopathy. The cause is unknown. It may have been dehydration from a recent bout of vomiting(damn chemo), but we don't know for sure.
They did put him on a few new drugs. One for psychosis, and two for dementia. He doesn't have a diagnosis for either of those, they were symptoms he had while there, but we are being cautious and he is staying on them for now.

Life as We know it

This ones harder to write, and encompasses a lot of feelings and emotions.
It's about my husband Lee.
We met about 7 years ago. Our first date we arranged to meet at Hammers coffee in the mall.
We sat and talked for hours. Before we knew it they were closing up and telling us it was time to go.  It felt so right. I felt like I had known him forever. I was in love, but because of my past history I wouldn't accept it.
We started dating and grew closer and closer.
After about five years we moved in together.
We had so much fun. Hiking, camping, vacations, day trips, hockey games, watching movies, and just being together.
Then Thanksgiving happened. Lee got a really bad cold. He got up at 4 am, got dizzy, fell and hit his head pretty hard. I kept an eye on him and in the morning took him to urgent care.  He had a sinus infection pretty bad, and they did a CT scan just to make sure everything was ok.
They told us there was something there but they weren't quite sure what but it was probably just an artifact and to follow up with his doctor.
We did a week later. He ordered an MRI, and discovered this thing, probably an artifact was a brain aneurysm.
Thus started a whole string of events , doctors, surgeries and hospital stays.
The first surgery was a full craniotomy, where they opened up his skull and proceeded from there. The aneurysm was sitting on the optic nerve. He was slowly losing vision in that eye and we hadn't noticed.
Once in they discovered the aneurysm was to close to the sinus cavity to safely clip it, however, they were able to move it which left him a candidate for a 2nd type of procedure called a coiling, where they insert a wire, break it off and the body forms a clot around it sealing it off so it will never rupture. The 2nd procedure was a success.
The first surgery though, it left him in a wheelchair, unable to walk more than a couple steps without falling.
It left him dependent on me and the multitude of therapists and nurses that were in and out of our home every day.
He learned to walk with a cane and now manages that pretty well, though on occasion needs his wheelchair.

A few weeks after the second procedure he was diagnosed with Parkinsons disease. We suspected this so it really wasn't much of a shock. He got on meds, the tremors stabilized, and life goes on right?
We decided to get married a couple months later. July we got married in a simple, sweet ceremony with all our family around. It was wonderful and life felt perfect.
Just a few short months after our perfect day we get a call from Lees internist. His white blood count was up and could he come in for a repeat tomorrow as well as some other tests. I remember that day. His WBC was 12,000. Normal is 4-10000. Only a little up, but they wanted to make sure there was no infection. He had a urinalysis done as well as a chest xray and blood cultures.
A week later the tests were back, and all negative. No sign of infection anywhere, and a WBC that was now in the 20s.
 Off to a hemotologist/oncologist for a consult.
One bone marrow biopsy and a few weeks later we got the results. the big C. Cancer. that evil and most unholy word ever. He is Philadelphia  and BRCA1 positive, both considered positive results for chronic myelogenous leukemia.  All I heard was leukemia.
we went back to the waiting room for some more tests they wanted to do. While waiting I stepped out into the hallway and called work to take the night off. I needed a night because I was ready to have a break down in a bad way.
 That is how we got to where we are today.

I know thats long for background, but it's important.
It hit me bad. Yes Lee is a lot older than me, that's never been an issue. I knew the odds are that I would outlive him, simply because he is 29 yrs older than me. Then in one year he was given two terminal diagnoses.
The world slammed to a screaming stop for me, but I could still see it going on around me.
I wanted to get mad. I wanted to scream and yell and tell everyone to stop because it was over.

I couldn't though, because as life has taught us Life MUST go on.

I'm a nurse. I take care of kids that shouldn't have been alive. Kids that were given a few months, maybe a couple years to survive. I take care of kids that gave their doctors a big FU and lived. Not just survived, but LIVED.
Going to work while all this was going on with Lee gave me a little hope.
A little sunshine in a dark world.
Kids who don't know the meaning of "you aren't supposed to be able to do that" showing me that no matter what happens it's ok somehow.
The few hours a day I spend with these families have taught me that doctors don't always know it all, and to never give up looking, hoping, and praying.
The families that inspire me for the simple reason that they never gave up.
So many times in life it's so easy to sit back and look at the big bad broad picture. It's so easy to get wrapped up in the why us mood. Its so easy to be selfish and forget that there are others out there with problems....but then when you sit and play with a toddler it's all in perspective... the big picture becomes small and you learn quickly that if you have the wrong teddy bear at bedtime the world will end.
And you eventually realize that yes, Life will go on.