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I have some of the best friends....one friend is out of town but still had hubby and I on her heart and texts me. She was praying...I really needed the prayers right then. Heart of God. Yesterday a friend texts me and says "I was driving home from Lewiston and had you really on my heart. She prayed all the way home for us. Heart of God... ......I am not sure if it's us moving and all the meetings and boxes and rearranging but hubby has been real aggressive...right in my face exploding...yelling, shaking, turning purple and just plain mad. ..bringing his arm back as if to slap me....he never....but he was about to.... All because I asked him to move to see if he had set on a letter. Mercy....off to a crazy day....my nerves are shot...I am shaking and crying. .Lord have mercy .Lord give me mercy, patience, grace and everything I need to handle this journey. Amen

  My hubby of 51 years was a big strong truck driving man. He drove over 35 years doubles, triples, haz mat semi trucks across the united States. He would be gone sometimes for a month at a time but would call every night to talk with me and the kids. He loved driving across the country....now he has lewy body dementia and parkinson disease. Yesterday I hear the truck start up and go running hubby thought someone told him to back the truck up and he was almost into the neighbors fence. He hates not getting to drive. Well, daughter has been working on a small book which will come out in sequels...mostly just the chapters that hubby and I are living. No medical helps...no professional helps....just us walking through this journey together. The book will come out in sequels and will be available on Amazon...won't cost much just enough to cover costs. We are praying these small books will help someone else that is going on this journey....what little that will be made which will ...

  Today was kinda weird...I needed to go to walmart to get hubby's meds and he wanted to go. So we walk in and he wants to set down so we go back to the pharmacy and they have a bench there. I get the meds and need to run to the lawn and garden center so he waits there for me. I come back and get him and he is pushing the cart which doesn't have a lot in it....I am just walking and I look back at hubby ..he is leaning down on the cart and white as a ghost. I said "what is going on you look like your having a heart attack"...he says "I am super tired" so I take him back to the pharmacy where he can set down and rest. I let him set for about 15 minutes and we leave the store. He comes home and goes to bed for about 1 hours and got up just fine...been just himself all afternoon....my guess is...and it's just a guess...the meds were bringing down his blood pressure a little to fast..but that is just me I took his blood pressure and it was 133 over 83.....

  When daughter Val was home and son Jon was here we all went to a lot of appointments and tried to get a few things settled. It felt like the hand of God was moving right before us each step of the way. But step #4....we took a tour of a facility that would deal with Lewy body dementia and Parkinson here in the valley. I won't say which one yet as more needs to be worked out. This is just because our neurologist told us to prepare...poor hubby with these diseases more issues will keep arising. So...I had to start dealing with the state of Idaho...mercy....what an ordeal...we even went to our elder attorney for information and backing on some issues. We have not had anything to do with the state of Idaho in over 45 years other than social security which was a breeze to get. But our Medicaid journey was to begin. Calls from the state with some not to nice of people....and me with a thousand questions was getting no where. Daughter was out camping and she does a lot of our p...

  Gave hubby his blood pressure meds and notified doctor ..waiting for response. Last night hubby had a calm night but this morning he got up and was watching TV and resting so I took his blood pressure and it was 195/107 now he has had high blood pressure before and also I know it takes a while to get the meds back into his system. But will let you know what the doc has to say and if he will change the med....(update)....doctor got back to us and we are to keep him on his blood pressure meds and make an appointment for a new med....

  Well...legs are better. But other things are worse. Hubby has had a bad time the last 3 nights...neither of us has had sleep. Bad dreams and hallucinations....also they said take him off the blood pressure meds to see if the swelling in legs and feet goes down and check him and make sure it stays below 140/90...well tonight...... he has acted zoned out all day so I just took his blood pressure and it is 181/108....mercy....just can't seem to win...contacted doctor....and yes our blood pressure machine was cinchonized to the doctors...so it should be pretty accurate...

Today has been a crazy day...hubbies leg has been red and swollen so we went to see our primary doctor...who then sent us to get an ultrasound at the hospital. The tech went over his legs for 45 minutes with the machines...then she said I need to get a second opinion....and she left....son Jon texts and says mom I am praying he is on a roof putting a new roof on and doesn't know what is happening, daughter is camping out without cell service and texts mom I am praying and a family friend Stacey texts me I am praying all while the tech was out. The new tech comes in and after 15 minutes says I don't see what you were seeing. So you can go home we don't see anything serious....yes...the hand of God had moved...yes his leg is still sore but he went out tonight and helped me hook up the camper for the last time....step #2 was selling Maizy Belle....yes I sold her she is home at her new home in Colfax getting a new name. I didn't even feel bad as they pulled her away. I...

  Yesterday hubby went and had his knee drained and a steroid shot. He seems to be feeling better...no clots...yes!!!.... Now for Step #3......taking the next month preparing and packing house up to sell. I think everyone should move every 5 years to just clean out junk. We have been in this house for 23 years...so much stuff ....and of course I am a collector of stuff. I get to take my time and go through everything to downsize from just under 2000 square feet to 943 square feet...now that is downsizing...mercy....closing on our new home on August 8th to then begin my remodel of the interior. Of course I can't leave well enough alone...I have my own ideas and change is coming to it. Hubby so far is handling everything...but would honestly just like to be left alone in his chair and stay here. But I take him over and we walk it and set there and just trying to get him acquainted to the area and yard. Plus he has already met a few of the neighbors...me it's a little hard t...

Our house is a cyclone. Boxes everywhere, furniture missing....everything on walls down...yes a cyclone. We are now closing on August 5th...could be sooner as this is a cash purchase but August 5th gives me more time. Good news is...........hubby is feeling so much better. I think it's a combination of several things..one he was taken off his blood pressure meds which he has been on for years. But his new meds also can lower the blood pressure and his amlodipine can also cause swelling in extremities so they took him off. They will evaluate it in a few weeks so will see. But they also drained fluid from his knee and gave him a steroid shot. Goodness what a change. He feels better and his personality is a lot better....a total win win...we still make trips over to the house so he can get used to the area. I have a fear when we do move and if I leave hubby may wonder off to find our old house. So will have to wait and deal with that as the days come...

In this journey we are on hubby needs a one level home and I have been looking but also don't want to share any walls with anyone else plus I need a small yard for us to enjoy...so kids came and we worked on a solution and we found one for us..., .I signed yesterday and we will be closing on this soon...so I can show you some of the pictures....don't judge ..I want something small, cute, affordable that I can just own, but I can grow old in by myself ..except grandkids coming over. Also it's vintage so that is just what I love...will show interior later but so far this is her.

  Hubby is in bed today...his knees are hurting....more of his disease problems. But what he has been doing is going through regrets. Helen he says "you have to tell so and so I am sorry". I say "about what". Well, you remember you were there. Ok, Brent I will take care of it. Later...Helen please go back to the truck stop in New Jersey and let them know I didn't know about toll roads. Ok, Brent I got this. Remember the food was awful in Oklahoma at that truck stop. I did ride with hubby through some states back East but not many as I still had 3 kids at home. So most of what he tells me I have no idea. Plus it could be 3 stories but in his mind it is one. So I just play along. He is good and going along with the flow of things here. Only time will tell how it all plays out....have a great day friends.

  With Lewy Body a person can have a few of these symptoms at any stage...so hard to pin point a actual stage...our neurologist doesn't go by this chart...she uses the 3 steps mild, moderate and severe...stages...but this is a guideline to see what really goes on...also most people with Lewy body do not make it to the 7th stage is what we are told....a person doesn't die from Lewy body dementia...they die because the body shuts down and the brain doesn't recognize they need to chew, swallow, choke etc... like weakened immune systems, swallowing difficulties , and impaired ability to clear secretions from the lungs. We are told it is mostly pneumonia but not the virus kind the aspiration pneumonia...but our neurologist also tells us steps to help the person if we see any of these things begin to happen...so always on guard watching to see what to step in to do...but remember we are always in the hands of God...he alone knows our day or hour....so we trust. Like Comment Shar...

  Something no one ever talks about and that is the bed. Hubby has his own room for quite a while now. And I can not sleep. Been together for 51 years....even had our kids when young and some grandkids share our bed. Which most of you did. But now I have this big old queen size bed and I can not get comfortable no matter what I do. I know some of you have lost your loved one and they are enjoying Heaven. My hubby is in the next room .Every night I toss and turn...can not find a good spot...I add pillows I throw pillows...I sleep with my head at the top of the bed...I sleep at the foot of the bed I have even tried to sleep cross wise across the bed. Most of the time I just prop myself up and sleep setting up. Not sure why the bed is no longer comfortable...I should be happy with all the room. And it's not like I miss hubby....it's just I can not find a good spot on the bed. So most nights no sleep. Now this morning at 3"20 hubby was again having some scary dream...

Well, we all know the stages and we all know what to expect. But mercy we as caregivers are human also. And, I am no saint. Even when I know what to expect sometimes it makes me upset. I was praying please Lord help us skip some of the things that will happen. But the Lord has other plans. I know hubby tries to do his best and things happen that he can not control. Now, the bad dreams, acting out, getting angry is under control with a few meds. He doesn't take many only 3 and one is for blood pressure. Our neurologist say some have to take handfuls of meds each day. But we are no pills if possible and it seems to be working. But in the later stage the person will not be able to handle their bowels. I know awful subject but it is a actual fact. It happens. Made me angry but it got dealt with. Middle of the night hubby wakes me up. I just pray Lord have mercy on me. But we are willing to except our chapter if this is the road you want us to take. Now don't think le...

 For Christmas we decided to have grandpa give each grandchild that was home a memory hug...since he has dementia and parkinson we don't know how long his memory will be with us.  So each grandchild was given a sweatshirt and we painted Brents hands and arms and he gave each child a hug, which put his hand print on the back of each shirt.