Monday, February 20, 2017

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....

Wednesday, January 11, 2017

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.

Monday, September 5, 2016

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.

Thursday, September 1, 2016

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.