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  Our Lewy Body Dementia and Parkinson disease journey...walking Hubby can't walk. He rode to wallawa lake which is about 2 hours one way. We stopped once to let him walk around. He rode in the wheel chair while there and then back home that evening. He hasn't been able to walk since. Going to see a doctor about getting his knee drained again. It is swollen really big. Need to get a lot done today but hubby comes first so just getting things done one step at a time.

  We were so excited to take a day away from everything and just go have some fun. We traveled 2 hours up and down some crazy hills but made it to the lake in Oregon. We met our daughter and her family there and had a great time at her camping spot. Her family had got a new camper and had camp all set up. Hubby just set and enjoyed everything and when we walked up to the go carts and golfing son Jon pushed him in the wheel chair so hubby didn't have to walk. We rode back to the campsite later and SIL Nathan cooked everyone hamburgers and brats. Just a great time and then we left to drive home. That's when hubby started going downhill. I had to drive slow the hills are just crazy ones, it was a total dark out night and deer were everywhere in the road. Steep cliffs on the side of the road all the way so I drove real slow. We got home and hubby went straight to bed. Half hour later he got up and could not walk to the bathroom legs were swollen. I got him there and he s...

  Today I have had a hard time...the manual work is mostly over at the old house...but reality is sinking in...my old life is over...our projects of building fences, patios, laying bricks, building firepits, laying floors, removing walls etc is over....my life of small crazy projects is over...I am a sentimental old fashioned girl and now having a hard time letting go...yes I have a more modern home, a yard that is all landscaped, a carport and deck that is of the finest materials...but it is all different. Hubby wants to just go home....I say this is home. We are old....change is hard. Not saying we won't get used to it...just saying so different. No place for most of my projects so took them to the thrift store. Now I will have to find the new me....and where do I fit into this change. New friends are being made here...but am I supposed to change to a new role? So many changes hubby not knowing that this is life now...hubby not there to understand my feelings or to talk to. ...

Yesterday we worked really hard and put in a long day. We got everything inside and out gone from the house. This morning we were there by 6 am mopping, cleaning and getting ready for the next step which is the Real Estate comes in. She arrived and walked through the house and complimented me on it being empty and real clean. Just a few more days and it will be on the market...now praying that we get just the right number....to finish everything off. We want to be fair with the buyers but also know what we need so we place it in the Lords hands. We are exhausted but needed to go get groceries. Coming home is so nice as it is raining and we have a nice carport to drive into. Hubby has held up real good until today. Last load of groceries I here a loud thud and then moaning and look hubby is laid out on the deck and steps. Somehow he fell forward dropping the groceries, hitting his head on the screen door and was half on the deck and half on the steps. He never broke anything ...

today we were working hard...nothing was working right it was hot and I am tired....I got really frustrated at hubby as he was trying to figure out what I wanted done I was trying to explain and finally I had to just say. Please just go away and leave me for 10 minutes. Just walk away. He had no idea what he did wrong. Me I was a mess. Hot, sweaty, tired and frustrated. I was the one going bonkers....hubby was just trying but not trying. Anyway we got it done after 10 minutes I went to find him and we worked together and got it done. Yes sometimes I am the mess.....now he is exhausted and just wanting to set and rest....I think we need a few days off....so planning a road trip for next week....time for some fun.

  Our lewy body dementia and parkinson disease journey We have been working real hard to empty one house and set up another we start at 5 am and work until 7 pm. So much after 23 years in one home. Today we are trying to move a small freezer into our new home. Grandkids are sick so can't get much done. Laptop not working so I hen peck my phone. Hubby came inside with blood all over him he doesn't know what happened when I got him cleaned up he had a big cut on his arm. Well back to work want to get the house on the market as soon as possible

  Our lewy body dementia and parkinson disease journey So many trips. .up at 6 am and over loading truck...we try to make 5 to 6 trips a day...hubby has been a trooper in helping but yesterday I couldn't move had to take the day off but we are a team and getting it done...one load today because of doctor appointments but hope to get 3 to 4 this evening. Mercy I am old...hubby woke me up at 3 something screaming. He was dreaming he was on fire.. eventually life will settle down at least that is what I keep saying.

  Our lewy birthday dementua and parkinson disease journey...lost........ tonight i lost hubby he was to take the garbage to the truck but he decided to take it home to our garbage can...and he was gone. I am driving up and down the streets with grandkids crying my heart out...I had tried so hard to get him to except this house as home. I call the kids val had just got home in Nampa Jon and Jeremy both at work. Jon getting ready to send sue and grandkids when I find him a street over at a house he claimed we used to live in. He was going to leave the garbage there when he saw me. Thank God no one was home when my hubby showed up with his garbage claimed we lived there. Mercy.

  Our second night was crazy......we were all exhausted...hubby was in my room...he tried to help yesterday and maybe that was the problem. But he was asleep...we all were and then I hear crazy noises. I see hubby in the corner of the room he had come around the bed and was trying to find the door to go to the bathroom and was trying to move boxes to get to the dresser...I get him turned around and we went back to sleep. He wakes up yelling and throwing his arms....I am trying to get him settled....and not wake the whole house, he settles down and we go back to sleep. I hear more noises a little later and hubby had come around the bed and was now in the closet...nothing in the closet but it has mirror doors which is common for older mobile homes...he is hunched down and trying to move around I say what are you doing". He says trying to find the bathroom....good grief...tonight I will leave lots of lights on.

  Well...I did it. Signed and paid for my first house. So unreal. I have never purchased anything that cost more than a couple hundred dollars on my own. Hubby did it all. Today I signed my name and almost cried. I went to the new house and we began to make a few changes. I feel like I am in a campground and just visiting and then going back home. Grandkids are all having a hard time. Everyone of them remember crawling up the steps from the family room to the TV room. Then later as they grew they would begin to jump the steps. So many memories for everyone. We have worked so hard on this home to make it ours. I struggle with everything now because I feel I am alone in all the decisions and steps. Jon and Val and Jeremy have been here helping but hubby just can't. I know a lot of you have lost your loved ones and are struggling. I understand. Hubby says about 15 words all day. No ideas, no comments, no interest. It's so hard. I want to turn to him for answers ...

  Well, we are doing pretty good here. Hubby has been real mellow and sleeping a lot. But real quiet. I have been working a lot and from early morning until late evening...lots to do. Daughter is almost here and will take over on the packing and moving. We have a couple meetings while she is here to go to, two birthday parties, and working on both homes. But we will get it done. Hubby helped me fold a tarp and then went in and went to bed. Not much strength anymore....he used to be so strong. Anyway will try to post but for the next 4 days we will be super busy. God bless stay cool and healthy everyone...

  Please say a prayer for hubby today...his feet are swelling bad again. Doctors think it is his amlodipine for blood pressure causing it. So they had us take him off for a few days his blood pressure went crazy even though his other meds are supposed to help lower his pressure. So they say put him back on and make an appointment and the earliest they can see him is in 20 days...mercy. So he isn't feeling good ..thanks for the prayers...

  Took hubby to breakfast at taco time loaded biscuits and gravy and tater tots grande pretty good All reactions: 32 Susan Hoyt, Helen Craig and 30 others

Here is a topic no one wants to talk about but it's one of the things with these diseases. Our journey is taking a turn...I keep going into hubbies room and it smells. I have had to wash his sheets and bedding everyday. Things are not real bad but they are getting worse. No one wants to talk about bowels not being able to be controlled. But it happens. Several times now so I was talking with daughter and she found these at Target and I think they would be something hubby would wear for the nights. It's not his fault ...in fact he has no idea it is even happening until it does. So I need to prepare him so it won't ruin the bed or make a lot more work for me. He has been pretty quiet since his out rage. Mostly just setting...doesn't want to leave the house and is confused when I ask him anything. I am working on some plans for him...it is hard for me to do but if the Lord allows I will do it. Will let you know our next step as soon as I can. For now I get the key...

  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