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  Our Lewy Body Dementia and Parkinson disease journey....stages We had such a fun time in Nampa at our daughters home....4 youngest grandchildren running and playing....we were so busy....we also had hubbies appointment with the neurologist....wasn't a bad appointment but we were made to know some things that are happening....hubby is retaining water....he has gained 15 pounds in the last 4 months and mostly the last couple weeks....has extremely high blood pressure...the problem is if they give him a blood pressure med with a water pill than the problem of his bladder is worse ...his bladder problem is getting worse daily...good news is daughter and I went shopping for supplies to take care of the issues but didn't purchase them at the appointment our doctor said she could get them covered with our insurance through Norco so we will be receiving supplies soon...problem getting hubby to wear them.....he is shutting down more all the time....not much strength and not much voca...

  Our Lewy Body Dementia and Parkinson disease journey..church Happy Sunday morning everyone....today I thought we might go to church...there is a little church across the road from our park....Faith Bible Church....it is just a walking distance away...but since the wind is blowing and cold we will drive....it's only a few minutes away so if hubby has problems or gets agitated we can be home in minutes.....he doesn't really want to go but I am encouraging him to try....hope everyone is having a great day....we had a prayer answered yesterday...nothing big but it took stress off my shoulders so I could sleep better ....looking forward to the holidays....trying to go through a lot of my tubs of decorations before it gets to cold outside to do it....but getting it done...can't believe I am still taking truck loads of items to the thrift stores....but 3 large bags of winter coats and clothes are in the truck now ready to be delivered....hubbies back hurts him a lot so he is tak...

  Our Lewy Body Dementia and Parkinson disease journey....noises Hubby has not been feeling well...he is extremely tired and kinda red in the face. Doesn't want to do anything, his back hurts, has a good appetite so I took his blood pressure and it is 145/81 not bad for him. But he has picked up a new quirk....he wants to click his tongue and make weird noises....out of the blue he will just make noises. Weird...not bad for a while but then I have to leave the room or go do something or go crazy. We are going to his neurologist in a couple weeks and I have so many questions. For those who have asked his legs are better...now it's just his back that hurts. I can't find anything to help him...he just wants to watch TV and eat. Take care friends and to the couple who have told me about your hubbies this week, hang in there, trust God he is the only one who can show us what to do.....text me if you want to just vent...I totally understand....we can go through this together...

  Our Lewy Body Dementia and Parkinson disease journey...friends So we live in a 55+ park...I was told there are 48 modular homes here....anyway we have become friends with a lot of them...the closest ones are in their 80"s she has beginning stages of dementia and Dale has cancer....but they have the most beautiful flowers...mums as big as pie pans...just beautiful and they are so proud of them....well he brings us tomatoes and cucumbers and I take them homemade bread...a few days ago he comes over and says "Helen I want to make you and Brent supper"...he says "I see you running here and there and I want to have you for dinner".....he says the best way to meet friends is breaking bread together....so last night he had us over for BBQ ribs, baked beans, homemade potato salad and huckleberry cobbler for dessert....we had such a fun relaxing time....they no longer attend church but have a great heart...he can't see very good so can't drive and can't go...

  Our Lewy Body Dementia and Parkinson disease journey...lie I was told today that I am to honest. To get help for hubby I need to learn to lie. This person is legal separated from her hubby but has never left him. They live together but she gets all kinds of government help. She works but also gets a caregiver to come in for 4 hours per day FREE...government pays. She gets her pay check and then helps for him. Mercy....others say you have to learn to play the game...if you do you get help. Well...I am not a good liar.....if I did my conscience would keep me up all night crying...so best just be honest. Yes, we have checked into getting help with hubby...so far it's a NO GO....most can not deal with his disease. So I just pray and tell the Lord..."Lord I could really use some help" and I know he will answer in his time. Also could use a few prayers that our home sells before winter. Don't want to deal with two homes through the winter months. Also...drives...

  Our Lewy Body Dementia and Parkinson disease journey...mean Well...I didn't want to post but to keep this chapter book going I must be honest and post. For several weeks now hubby has been changing...I thought I could handle it but mercy....at first he quit reading his Bible...then I would put the Bible on tape on and it was ok for a while. Then he got into talk shows...which for a while was ok. Then I noticed he was getting into not good talk shows. Now some of you might not agree but we have always held a standard in our home. No r rated movies...no cussing...no drinking alcohol...no smoking etc......always hubby and I agreed on this and we never even let our kids. But now hubby is into watching and listening to some crazy cussing shows...some weird shows.....gets real angry when I say something. So I hid the remotes. Now he can be just setting and just started yelling really angry.."SHUT UP" "DON'T TALK TO ME".....Then he settles down and then ...

  It's 12:48 pm everyone is sound asleep...house is peaceful and quiet...me I am wide awake...exhausted but can't sleep...daughter has worked her heart out for the last 2 days...organizing...downsizing me even more...baking...she even made homemade bread for my neighbor...his wife has dementia and he is always giving me tomatoes and cucumbers so she made them some bread...they were so excited to get it...took 4 kids to the fair...daughters two boys and son Jeremys two children...they had so much fun...family all met at DQ for ice cream for my birthday and to give me gifts...pushed hubby in the wheel chair at the fair so he could go and this evening his legs were swollen again...I have been so blessed with so many family and friends wishing me happy birthday....you are all such a blessing to me....I love and appreciate all of you...I guess I am still adapting to this new life...new home and hubby's issues....everyday I see him changing...my heart breaks for him....and for me...

  Hubby no longer reads...he can not read his Bible any longer. He does not do word search he mostly just sets. He can get up and help me if I ask him and show him what to do. No ideas no interest. When someone stops by he is not interested and doesn't come and join in. He just sets. Today while he was just setting I decided to see if I could get him to do something...I needed yarn rolled into a ball...so I set down beside him and showed him how to do it...He is real slow but working on rolling the yarn. At least he is moving his arms and it gives him something to concentrate on. Not sure how long he will do it but a win is a win. He is not in pain and is eating just setting. Like Comment Share

  At this stage in these diseases our neurologist says Helen get help...check into places for hubby as the disease progresses. Months ago she said start now!!!!....so I did. We researched went to everyone we could find local, as I wanted to keep hubby close. Now right now we are fine...I got this but as his body goes down it may get to where I cannot do this. So we found a place and was on the list and excited and to find out. They sold the place and now new owners....and now new rules.....and now the government makes changes that take place in January 2026. We are not looking for right away but for the future. Most of them for memory care want a spin down of $7000- $9000 per month for up to 2 years. Which means you pay out of your pocket for 2 years and then maybe...maybe a program will step into help. But more than likely not. Which will put a lot of families in harms way. Me I am working hard and making changes to accommodate hubby changing. With kids helping so far ...

  The last few weeks all I could feel was I was DONE...done with moving, done with two homes, done with messes everywhere, done with hubby's diseases, done with running to doctors....and then daughter steps in and virtually slaps me and says..."stop...get it together and get things done"...just what I needed...I went back to work...house on 10th got done and ready for pics....yard work got done....hubby ran to doctor got knees drained done....starting to concentrate on new home and instead of climbing over things I was beginning to make things work. Sold the big old stove and that made more room...took the money went to Home Depot and purchased more kitchen cupboards and got them in.....Finally some homes for things. I am beginning to feel like there is a light at the end of the tunnel. I was asked how I liked my new home and all I could do was say "I am so overwhelmed"....I am just moving and doing the things I need to do but my heart is not here. Yes, some...

  Back from doctor...when hubby fell a few days ago and nose planted on the patio....he must have hurt his knee. The doctor said it was hot, swollen and he took 3.5 tubes of reddish colored fluid from the knee. It's just something we will have to watch for and be ready to have it drained. Surgery is not an option for hubby at this time....

  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