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.