2 months down and a lifetime to go

It's hard to believe two months have gone by. I have a rare day once in awhile that I don't cry, but they are rare. The depression, anxiety, insomnia etc are worse than ever. I've started an antidepressant as well as meds for what has into chronic migraines.
my brain is so disorganized I don't know how I manage to function on a day to day basis.
I've started a project for the grandkids, something they can have and hold to remind them of their poppa.
I received his ashes exactly 6 weeks after he died.
I got some silicone heart molds and makers mix crafting concrete.
I am mixing some of his ashes into the makers mix and pouring it into the molds. In the formed heart there is a heart shape depression. I am going to put some ashes in there and seal them in with some modpodge stuff I got. When that's all hard and dried I will be spraying the entire thing with clear shellac.
Then I get to give each of the grandkids one, so they can have their poppa with them all the time.
I will make some extras, just in case of breakage or loss, and I will tell them, or at less their parents, that I have extras just in case, and no one will need to panic if disaster strikes.
for his kids I got each one an urn necklace to wear. Tomorrow I plan to fill them, and hopefully will get all the hearts done, so I can get them all mailed or hand delivered.
I'm planning a vacation, and taking my girls and a friend with us. We are going to Costa Rica. I planned it during their rainy season, in July. I picked then specifically because Lee and I always did something special for our birthdays and anniversary, and I suspect I will need to be occupied then. My birthday is 7/16, his 7/21, and our anniversary is 7/24.
valentines day made the two month mark, and a very emotional day for me. The day after though I got a very special package in the mail, a card and cookies from Utah, my uncle Mel and aunt Catherine. 21 years ago they experienced the loss of their son in an accident. My aunt said it was the things that happened later that helped them keep going, the calls and cards they got weeks and months later, just something to say "we're thinking of you".
It really did mean a lot to get that card and package that day. They knew how much I needed it.
I'm hoping this spring I can get a week off and make the drive to see them with my mom.

Life on hold

This is one of several posts I made when everything was happening, when he got really sick, and I put them all on hold and didn't publish them. I wrote them for me, to chronicle everything, but I realized that they need to be shared, that the world according to Jennifer in the life of a caregiver needs to be spoken.
welcome to the beginning of the end.






Life as a mom to littles was great. Ups and downs, full of heartache, tears, and entertainment. Sometimes I would just scratch my head at things they said and go along with the game.
They are college kids now and amazing young adults. I couldn't be more proud of them.
Having married a man older than me and with chronic health conditions I knew life was heading in a different direction.
Things have hit a wall I think.
Sept. 12 Lee had a cystoscopy. He had been dealing with a kidney stone and they wanted to check things out. Per protocol he was on 2 antibiotics for 3 days afterward to prevent possible infection. For those three days he was fine, relatively speaking. Day 4 he started to decompensate. Sept. 20th he woke up with a low grade temp and vomiting. At that point I made the connection, with those symptoms, plus increased confusion, maybe he still managed to get a UTI. Into urgent care at the VA hospital. He saw a great doctor(that I happened to work with in the past when he was the medical director of a facility I worked at) who also thought UTI, did labs, gave him fluids for slight dehydration(an ongoing battle withe Parkinsons patients), and ordered a week course of a stronger broad spectrum antibiotic. I took him home, content with that course of action, and for a few days he almost seemed like he was improving. It didn't last though.
The night of Sept 24th into the morning of Sept 25th saw him fall 6 times. He was not cooperating with me and dad trying to get him up. He was yelling and combative. Pushing me, and even hitting me a few times. We finally got him back to bed the last time and he stayed, but didn't sleep. A very restless night and I got very little sleep also. I decided laying in bed listening to him making no sense that when morning came we would be heading back to the urgent care. Dad helped me get him dressed, upstairs, in to the truck and off we went.
Different doc, same routine. Its an easy assumption to make when an elderly person with dementia has a sudden worsening of symptoms, and 90% of the time they are correct. But when the UA says there is absolutely no indication of an infection it leaves you scratching your head thinking "now what". More labs, a CT and everything normal.
lots of talking with the doc when he says " I don't know but he does at the very least need a couple weeks of inpatient rehab".
I was left to "discuss" it with Lee and make the decision, doctor speak for we know he's not here mentally but decisions need made, I'm going to give you time to think about it.
I was given two options. Take him home and call his social worker/case manager the next morning and work on admit from home to the CLC(community living center, an inpatient place for veteran's to get rehab or respite care), which could take a couple weeks, or we could admit him to the hospital and start the next day on transfer to the CLC, which would be a lot faster. I didn't want to say admit him. Medically he was stable with no real reason to admit him. I had a hard time taking a bed from someone else that might need it more. The sweet doctor said the right thing though. In just a few words he alleviated my concerns and hesitation... "I have no problems admitting him if you are unable to keep him at home safely". All concerns gone, replaced with relief and sorrow. You see, a few days before this all happened I got home from work to find Lee upset. He was scared I was going to send him away, to lock him up, to put him in a home. Stupid me told him no, he wasn't bad enough for that, but one day he would be. That day would come when I could no long care for him at home, for his safety, mine, and I would not be able to meet his physical needs.
I didn't know that I would be going back on my word, that day had come sooner than expected.

End of an Era part 2

I requested they take him to Sacred Heart. They discovered he had pneumonia. It was mild, but they used that and the decline in mental status to admit him. He went to the oncology floor.
It was a disaster in so many ways. Despite me having gone over his meds and his med routine with the reasons we did it the way we did. They were still wrong. They also immediately gave him haldol for agitation and anxiety. He was combative and resistant. I had to go in after work to give his meds because he fought them. I even spent the night to help out. He is still there.
.I requested palliative care. They came in and assessed him, and made the suggestion we go with hospice. I agreed to that.
They have diagnosed him with delirium and an EEG showed changes consistent with metabolic encephalopathy. The doctors have told me he will likely never come out of it, that he will likely stay how he is right now..
He's not the man I met. I miss him, and my heart is slowly breaking.
I have to decide between palliative care and hospice.              

End Of An Era paelrt 1.

I wrote this within days of it happening, but I held off sharing it because it was so hard at the time. I felt horrible guilt for screaming at him, and I still do. I was angry, I was hurt, I was scared, and I knew then that my world was about to change and I would have some very hard decisions to make.
it's time to share it now though.
this is life of a caregiver.
originally written 10/24/2016, and published 02/20/2017.




My amazing husband has been in the hospital 20 days of the last 30. First it was a night filled with falling, and my dads help to get him up He was admitted to get him to the inpatient rehab hospital faster, a few days vs a couple weeks if I had taken him home and worked on placement with the social worker. He spent 12 days between the two.
It started with a cystoscopy. He had a kidney stone and had been having a lot of abdominal pain. After the procedure he was on 2 antibiotics for 3 days. Over the next week he started having a little more confusion, but over all he was doing ok. He was still taking care of himself 6 days after the test he woke up vomiting and with a low grade temp. I took him to the VA urgent care/ER. They decided that he likely had a urinary tract infection brought on by the cystoscopy. That sounded reasonable to me. Hey, I am a nurse after all, and I had worked in geriatrics. I know a UTI can cause an increase in confusion. I took him home.
Over the next few days he got worse and worse. He quit going upstairs for breakfast, he was only taking meds when prompted, he spent all day in bed. The Saturday night/sunday morning after he started the meds he got immensely worse. He fell 6 times over the night and I had to have dads help getting him up. I decided in the morning I would be going back to the VA. They immediately got him to a room and on an IV for fluids as he was severely dehydrated. We also checked labs from the previous visit and discovered he did not have a UTI.
The doctor told me that he wanted him at the community living center, the VA's short stay rehab hospital that also houses their hospice and they do respite care, which we used a few months ago. The staff knew him and they were shocked at the huge decline in such a short time. The doctor gave us the option of taking him home as he was medically stable, or admitting him to get him into the CLC faster. I knew I was unable to keep him safe at home and I requested admit that day. He was at the main hospital 3 days then at the CLC for 9 days.
During his time there he declined further. He became psychotic and was hallucinating badly. He was convinced the staff was all aliens and were taking people away to kill them, and a lot more. PT/OT/ST all worked with him. They told me he was stable on his feet and was doing excellent, yet every time I visited he was in a wheel hai with an alarm to prevent him from walking. They made some med changes, including adding one to raise his blood pressure. He suffers from horrible orthostatic hypotension, his blood pressure will drop 30-50points when he goes from sitting to standing. It has helped awesomely and he wasn't having many dizzy episodes. After 9 days at the CLC and 3 days in the main hospital they sent him home. He was medically stable and had met all the therapy goals. I took him home still hallucinating, though he wasn't talking about them much.
He was home 9 days. In those 9 days he declined more. He wasn't taking his meds regularly, he wasn't eating or drinking much at all, and he was staying in bed almost all day.
I worked and mom and dad had Lee duty during the day. On my next day off I decided I needed to do some shopping. I got him up, got meds into him, and took him to the bathroom for a shower, he hadn't showered all week. On the way to the bathroom he fell. Twice. I got him up each time and eventually made it to the shower got him naked and in the shower. It took an hour to get him in the shower and washed. Dressed his top half in the shower then took him out to dress the bottom. He panicked. He started grabbing everything, anything to hold on top, even things not stable. He would grab the towel bar but not the hand bar that was strong enough to hold. I tried to get him to hold me in a hug so I could pivot him and set him on his walkers seat. He wrapped his arms around me and immediately grabbed a handful of hair and the towel bar. I was screaming to let go right now, but he pulled harder, shook the towel bar yanking it off the wall and the momentum stopped at the back of my head. I set him down on the floor and walked away until I calmed down.
I calmed down, went back in and managed to get him off the floor to sit on the toilet seat. Finished dressing him, got him seated on his walker, and pushed him to the bottom of the stairs to sit and wait while I packed a bag and loaded things in the truck to take him back to the hospital. While I was loading things in the truck he decided he could walk, and did, About 20 ft to the doorway to the living room where he fell. Again I managed to get him up and on to his walker and back to the stairs. At that point he couldn't walk anymore. I tried and tried to get him up the stairs and I couldn't he fell again and I managed to get him sitting on the stairs. I was home alone except for him and my oldest daughter, and I was in tears. I couldn't help my husband and I didn't know what to do. I called 911 to request lift assist.
They sent a fire truck with a paramedic. They came in and immediately started assessing him, and he started vomiting. The paramedic made the decision to call for ambulance transport. They got him up the stairs and into the ambulance, told me the VA wouldn't take him like this and asked which hospital.
to be continued....

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.

A New Hobby is at hand.

I'm learning a new art. Ice dying. Basically you bunch up the fabric, cover it in ice, sprinkle powdered dye over it and let the ice melt.
I used an old cream color flat sheet for my first attempt. After 12 hours the ice was melted, ad being curious I took a peek. I wasn't overly impressed, there was to much of the original color showing. So I bunched it back up with the bare patches on top, covered in ice, added dye, and left it alone.
I love how it looks.
unfortunately right now blogspot isn't letting me upload pics right now. I will keep working on it and hopefully it will let me eventually.
after a trip to the park yesterday with Lee we stopped at goodwill to look for a rack I can use in the dying(last time I used the oven rack). I found some fence stuff that will work great. I also went looking at sheets and blankets for me to practice on. I found a couple curtains and a baby blanket to try. I wanted different fabric types and I think these will be fun. One is lace, I'm not sure it will work real well, by I'm going to try.

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.

Journey to Health, or why I torture myself

Let's talk gymlife for a minute.
For some people, including me, going to the gym isn't as simple as putting on workas out clothes, grabbing a bottle of water and walking in the building.
It's almost a ritual for me, a fine line balancing act, and I nearly have it down to a science.
I try to check my blood sugar about an hour before I go. If it's 175 our less I need to jack up my carbs.  30-45 minutes on the elliptical will drop me 100-150 pts, which would be dangerous if to low. I try to take a cup of vanilla Greek yogurt with fruit mixed in, and granola to sprinkle on top to work with me for a pre work out snack. I will drink a soda with it, if my sugar is to low. Sugary drinks will raise blood sugar fast, but will result in a fast crash also. Protein at the same time will balance that out a little and help to stabilize blood sugar(yogurt has decent protein).
Then I have to keep glucose tablets at hand, just in case I didn't estimate my sugar need high enough. I can't easily have them on me while working out, so I keep them in a locker, so then have a lock I need to try to remember the combo for as my brain is slowly shutting down. I often write the combo on my wrist so I can show someone if I need to ask for help.
Pain is the next issue. Sometimes walking from the car to the building is difficult, the elliptical would be impossible except for my pain meds.
I try to medicate about an hour before I go, so they will be at their peak. If everything is perfect at work it will work out. Sometimes its not and I can't even guess when I will be leaving. So I medicate just as I leave work. That means I sit in my rig and wait for the meds to kick in, burning precious sugar that I already jacked up. Even sitting you burn carbs from breathing and your heart beating, as well as your brain thinking. It's not much but when you try to keep your carb intake up just enough to handle the workout it can throw things out of whack.
Then you finally get in the building, lock your stuff up and head to the elliptical. Step up and start moving. And then you realize that it still hurts, badly. You try to push through it, knowing that though it hurts, it's not doing any damage. You end up stopping every 5 minutes or so, and after 20 minutes of that song and dance you just give up, especially since it really doesn't feel like much of a work out with all those stops.
Grab your stuff and head home, knowing now your blood sugar is to high and you will have to take insulin to counteract the carb loading.
The guilt hits later. You know you need the exercise and you really did try, but that effort that was all for nothing has now taken 2 hours out of an evening you could have spent with your husband. So you decide to take the next day off to spend with your partner and family, but feel guilty because you know you really need to work out. The circular thinking sucks.


Don't judge. That person going slow, stopping often, and quitting after just a few minutes may have a chronic condition that makes it difficult. They may want to do more, but it's physically impossible.


























RSA

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.

The night I tried to kill my husband, or, why i had to talk with poison control

I have hesitated to share this story, but I need to so others are aware.
You will see this number mentioned several times. Write it down please.
1-800-222-1222.
Keep the number of poison control handy. They have a medication nurse on staff and they can help regarding medications and overdoses, as well as poisons.

My husband is an old man(71) and has parkinsons(with a little dementia) and leukemia. I get his meds ready for him, every night I set up his bedtime and meds for the next morning, and do mine at the same time. I set mine down, place his morning ones down next to the coffee maker, turn and give him
his bedtime ones.
 That night, July 30, 2016, I set up his meds, set them down, set up my meds, turned around and gave him mine to take, and he swallowed them just as I realized my mistake and said STOP.

Before you say something like that can never happen to me... I'm a nurse. An RN. I was also exhausted from work and being his caregiver, and planning a little vacation we were taking the next day.
He received 2 narcotics, a muscle relaxant, and a med for nerve pain, all of those can cause drowsiness and dizziness.
 I never thought I would ever in a million lifetimes make this kind of mistake. I was torn up big time.
Poison control isn't just for chemicals/poisons/kid incidents. I called the VA nurses help line first. She kept me on the line while she called poison control 1-800-222-1222.. She didn't disconnect until I was talking to the medication nurse.
Even with their reassurances he would be ok, I was still a mess, still fighting tears, and barely holding off a panic attack.
The poison control nurse called me back 3 hours later to check on him, and me, and had given me her direct line if I needed to call before that, even if it was just to be reassured. When you call poison control it automatically routes to the closest regional center. 1-800-222-1222.


Always know what meds everyone in the household is on, keep a list on the fridge. They will ask when they took them, what meds they took, dosage, and what, if anything, they normally take.

I have all meds in a 3 drawer plastic shelf thing. One has his meds, one has mine, and one has all the back up stuff and my diabetes supplies. I didn't have a list on hand, but because I have them organized like that I was able to go right to the drawer and look at each bottle to tell her what they were. On a normal day I can name off each of our meds, dose, and when it's normally taken. In my panic I couldn't remember anything. I still kept a cool head, despite how I felt inside, but it wasn't enough. I couldn't think of the names, let alone dosage or times.


1) keep the number of poison control handy. Hang it by the phone. Program it into your cell. Write it on the fridge with a sharpie. 1-800-222-1222.
2) keep a list of medication names, dosage, and time it's normally taken.
3) keep all meds separate(many look nearly identical) and in a locked box if you have tiny minions around.
4) never hesitate to call/ask someone for help, you may not have the mindset to call 911 or poison control. 1-800-222-1222.


We are VERY fortunate nothing bad happened with this. I know we had luck and God on our side, it could have turned out so horribly different, I could have killed my husband accidentally. I am thankful nothing more than him sleeping 14 hours came from it.
 I am not ready to lose him.

Thank you patients

I'm a nurse and though I've had many nurses I've worked with and loved that I respected and looked up to, it's the kids I cared for when I did pediatric home care that made the biggest impact on me.


 The babies that weren't supposed to live, but are now 6, 12, 22 yrs old. The trust they gave me to keep them alive with an ambu bag for hours when a vent malfunctioned, the look in their eyes when I walked in to parents doing what they could while their child turned gray in front of them, the panic on their faces, in her eyes, as they tried to remain calm while an ambulance was called, all the while fighting not to show their child their fear that she was dying.
 The child slowly dying from an incurable brain tumor I sat with all night so his parents could get some much needed sleep, trusting me to keep him out of pain.
The mom who didn't speak English who sent me home after 2 hours night after night because she trusted no one to care for her son except her, to gain her trust and become part of their family, celebrating holy days, birthdays, American holidays, and mourning with them when bad news was received from home
The young man who at 18 gained the strength to tell his parents no more, that he was done with hospitals and doctors, and that he was ready to accept the consequences of his decision, knowing he would die.
The preschooler I watched, and helped, wean off the vent, and meds, and said good bye to as she was now healthy enough she no longer needed nursing care, and I learned Viagra has many uses, even in 2 year old girls.
The baby we were told was blind and deaf, that couldn't sit unassisted or roll over at a year old...to see her now running, playing, eating, smiling at her favorite video and signing more over and over when it ended.
Each child, each family, each family member made an impact on me. Each one lives in my heart. Each one stole a piece of my heart. Each one I loved and cared for like they were my own.


Patients often don't realize the impact they have on their nurses. They don't realize how much they teach us. Christian, your family, have touched many lives, each of them better for it.
For us it's not a matter of "what did I learn from my nurse" it's more "what did my patient teach me today"60










































































































































 The mom who didn't speak English who sent me home after 2 hours night after night because she trusted no one to care for her son except her, to gain her trust and become part of their family, celebrating holy days, birthdays, American holidays, and mourning with them when bad news was received from home.
The young man who at 18 gained the strength to tell his parents no more, that he was done with hospitals and doctors, and that he was ready to accept the consequences of his decision, knowing he would die.
The preschooler I watched, and helped wean off the vent, and meds, and said good bye to as she was now healthy enough she no longer needed nursing care.
The baby we were told was blind and deaf, that couldn't sit unassisted or roll over at a year old...to see her now running, playing, eating, smiling at her favorite video and signing more over and over when it ended.
Each child, each family, each family member made an impact on me. Each one lives in my heart. Each one stole a piece of my heart. Each one I loved and cared for like they were my own.
Patients often don't realize the impact they have on their nurses. They don't realize how much they teach us.

Life as a caregiver

I got a message the other day that really made me smile, and cry. It warmed my heart. I really needed to hear it after a really bad day.
I want to talk about being a caregiver to a spouse that's terminally ill.
It's hard. It sucks. Its even worse when you have to work full time also.
There's no other way to put it.
We don't do it for the praise, we know our spouse appreciates it, we know how they feel.
We sure as hell don't do it for money, there is no pay.
We don't do it to make ourselves feel better, its physically and mentally exhausting.
We do it out of love.
We do it out of compassion.
We do it because our heart says to.
We don't do it to impress people, there are days we go unshowered, teeth not brushed, hair pulled back in a ponytail because we were so busy getting our partner ready for an appointment we forgot to brush our hair.
I often get asked "how do you do it?"
There is no answer to that really. It's hard as all get out sometimes. It's not easy some days.
It's day in and day out, sleepless nights, tears in the shower worried about the one we love.
Its worrying about forgetting appointments, or being late because our spouse is having a bad day.
Its trying to focus just on our partners needs, physical and mental and not worrying about what others think, family or friends.
It's worrying that the next fall will result in bad injury, someone calling adult protective services, or even death.
Its worrying about sleeping through that fall and our partner laying there in pain, calling out to you but you are so exhausted you don't wake up.
It's guilt when you forget one their pills, or forget to take them with you when you get brave enough to take them on an all day outing.
It's love.

We don't do dogs

I used to work at a nursing home. We had a resident who's dying wish was to have his dog cremated and their ashes mixed. So GH died. T was an old dog and had a lot of health problems so none of us had an issue with his wish. We made the arrangements well before G died. The day came and I stopped to pick T's ashes up on my way to work. Get to work and called the funeral home, as arranged with the director weeks before.


I sit down and call... "hello, I'm calling to arrange pick up of GH's dog T."


Funeral home1(FH)- " Ma'am, we don't do dogs"


 Me-"yes, I understand that but we made these arrangements weeks ago and we were told to call after the dog was cremated"


FH-"yes, well, there are places that dispose of animal remains, if you call the shelter they can direct you to one"


Me-"thank you, but can I speak to your supervisor"


FH-"yes ma'am but they will also tell you we don't do dogs."(then transfers me)


FH2- "hello ma'am, I understand you have a dog for us to pick up"


Me-"yes, he's ready to be picked up, you already have his owner GH"


H2-"but ma'am, we don't do dogs"


Me-"I understand you don't do dogs, the dog is already done, he just needs picked up, can I please talk to your supervisor"


FH2-"yes, but they will tell you the same thing"(transfers me again)


FH3- "good evening, I understand there is some confusion regarding animal remains, we don't do dogs but if you call this number..."


Me-(very short and irritated by this point) explains again and tells him to call the director the arrangements were made with.


FH3- agrees to call director who isn't on call that weekend but will have him call me.


FH4(director)-" I'm sorry for the confusion, apparently the message didn't get passed to the weekend on call, we will send someone out within the hour"


Me- thanks him and hangs up to wait for the pick up.


Almost exactly one hour later... In walks a dude looking at an index card, pushing a gurney with a body bag on top...stops by the desk.


Him -"I'm here to pick up T Hambert*"


Me-stands up picks, the box up, walks around the nurses station, sets the box on top of the body bag on the gurney "here is Mr. Hamberts* dog T"


 Him-"but ma'am, we don't do dogs"


Me-(as I'm sitting to start paperwork) "well today you do do dogs, have a nice night"


(He called the funeral home who had been notified of the irregular situation by this time, and was advised to return with the dogs remains immediately so they could get the dog done)


*name changed

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.

I'm often asked how I can function, how I am able to work while taking pain medication. It sucks. It really does. I don't get high, I don't get that euphoria addicts speak of. I don't get high. I get relief. I get decreased pain. I'm never pain free, but with it being decreased i am able to still function.
Don't be mistaken, after years taking narcotics your body does have some sort of dependency, but it's different than an addicts dependency. When my meds wear off, if I'm not in bad pain, I don't take them. I only take them when I hurt. Sometimes that means I have symptoms of opiod withdrawal. They aren't pleasant, but they wont kill me. I yawn, horribly and almost nonstop. My nose runs, my eyes water, and I look like I have severe allergies or a cold. That's the start of withdrawals. I tolerate it, because I have the mindset that if I take them when I don't need them for what they were prescribed for, I'm an addict.

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.

Respect comes in all shapes and sizes

Life takes us on adventures. Some we plan, some we fall into, some that find us.


Last month an adventure found us. Six days with no power. A wind storm with gusts of 71 mph slaughtered trees that had been standing for hundreds of years. It took out power lines, busted cement, broke open roofs, and took a couple lives.


We were very fortunate and we were prepared. We always have enough food on hand to last us a couple of months.
 We have some stored water , not enough for anything long term, but we have a couple filters on hand. We are still seriously under prepared for anything real long term.
we are prepared for a minor to moderate urban disaster, to shelter in place.


That's not what I want to discuss though. My mantra, "life will go on", has again shown us the meaning of life. That meaning of life comes in the form of two very sweet young adults who, despite it all, got married.
The world spins, day changes to night, summer to fall. It has never failed us, but our own hearts have been known to fail us. How do we prevent that from happening?
Respect. Respect for us, our partner, our children, our time.
I have learned that if I let respect for my spouse start to slide my heart starts to harden. When I let myself feel something he did was only done to irritate me my words start to bite.
When I start to get mad at his disease it reflects onto him as a person and makes him feel he is the disease.
When he asks for my time I have to remind myself he doesn't ask for much, and he's not doing it out of a lack of respect for me and my free time, he's doing it because he loves me and wants to spend time with me. I need to prioritize my plans and remember what lifes priorities are now, terminal diseases change the entire game plan.

The many faces of Parkinson's disease

You can see the progression in pictures. They aren't in any order except the first one, that's a couple years before Parkinson's began taking him away.

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.