Posts

Our Lewy Body Dementia and Parkinson Disease journey

  The hardest part about these diseases is the caregiver never knows when or where the loved one will have a meltdown. Hubby has been real good helping me as much as he can while I have been sick. Things have been going ok and working. Until today...youngest son stops by to bring the kids for school and us to watch until he gets off work. He asked me to go outside and help him so he could talk to me. We stepped outside and I forgot to tell hubby....he comes out all upset....we say we are just checking the fluids in the pickup and you can help out. That's when he exploded....started yelling...the neighbors come out on their deck to see what is going on. Hubby is yelling and almost crying that no one will listen to him. Son says "Dad it's ok...we are done just go inside". Hubby is crying and takes off for the house. Mercy....meltdown...big time....first one of these since he was put on the meds. Son came in and talked to Dad and grandson Gabe sets down and just s...

Our LBD and Parkinson disease journey

  What a crazy night. Not about hubby he slept through all of it. Me I felt like I was fighting for my life. I know sounds like a lot of drama but to me it was bad. Bad cough, lots of mucus and my lungs are sore from all the coughing. I finally fall asleep and wake up coughing and then...I could not breathe...it felt like the air was only going through a pinhole to my lungs. I walk through the house trying to breathe. Thinking they are going to find you passed out on the floor. Lord I can't breathe. Just a pin hole of air is getting through. I know waking hubby is not an option. I think cold air will help.. to many locks and alarms on the door. Will be to late. Lord if it's my time to go. Help me. Walking trying to breathe. Moving my arms and body to try to expand my lungs. As I walk and pray slowly I feel a little more air going in. I think I am going to pass out. Keep walking. I know sounds like a lot of drama but this was real. I felt like I was fighting for my life. A...

Our Lewy Body Dementia and Parkinson Disease journey

Just a heads up...yes, I am fine. I am not depressed or anxious. I am bored. I am adjusting to this new way of life, and I get bored. But all is well. And yes, our neurologist knows about everything. Those who are walking this with me knows that every 4 months appointments are more for the caregiver than the patient. The patient gets their meds adjusted but it's a terminal disease so not a lot they can do so they are there for the caregiver. They listen to our complaints and ideas and work through them with us. Also, anyone who knows me knows I am an open book...everyone everywhere knows when I hurt, when I am down, when I am up etc...I tell all.... thank you for your concerns and helps...just pray for us and we will continue to walk this journey...God bless and we appreciate all of you.

Our Lewy Body Dementia and Parkinson Disease Journey

  It's so crazy how our lives change...for 40+ years this time of year I am working on my vintage campers. I love getting it all dressed up and ready for the camping trips of the year. This year life has changed so much that I just look at things and walk on by. I would always think of a theme and then shop for items and work the insides of the camper over for that theme. Hubby has changed and I guess I have changed. For the good I am not sure. But I look at so many things with a different eye, now. Even plans for the backyard have changed. Maybe closer to Spring I will get my mojo back but for now. No interest....I do more wondering around in circles than getting things done. Well have a great day and try to smile and make someone else's day...God bless...

Our Lewy Body Dementia and Parkinson disease journey

Image
  Been so quiet here ever since we got back from the neurologist. Hubby was to start taking a double dose of one of his medications. So his body is trying to adjust to it. When at the doctors she gave him a couple tests. One had questions I don't remember all the questions but one was what year it is and hubby said 2021. One was who I was and who Val was, and he got them right. He was asked how old he was, and he said 75 he is 73. What is 4 - 3. Questions like those. Which showed her his childhood cognitive awareness is still intact. Which he should not have problems with bowel issues or hygiene as the diseases progress. Things he was taught as a child. A friend dropped off a book called "I'm Betty" so I have been reading and studying it. Today again hubby has been in bed a lot. So, getting used to the idea of being alone. I go check on him all the time to make sure he is still breathing but all is good. Just another step in this journey.
  Been a quiet 51st anniversary.... hubby has been resting most of the day...daughter purchased us dinner from El Sombrero, so I ran over and picked it up...so yummy....rest of the day I have been working on projects, watching old movies and resting...hubby is in bed again trying to rest so a quiet evening here....been a good day we are blessed to be alive and we have a safe warm home and many blessings...
  Hubby is down today...he was sick all night...so not much sleep...not sure if it was the trip...the flu or his new meds....but letting him spend the day in bed sleeping....sure quiet in here but getting things done...