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  .... we have been working hard on a small house...manual labor of siding..roof..windows..paint..shutters...today was a long day...we worked hard. But it took a toll on hubby...I keep pushing. But time to back off....he physically and mentally can't do it any more.... he is done.... even to hard for him to go and watch.....makes me sad...tomorrow is our last day. The house will be.done.....but hubby will also be done. No more projects....life...sometimes hurt...Nite all...

  Before I leave for work I wanted to let you all know the funny side of this disease...they warned me that hubby will start to collect things....and to watch what he collects some could harm him....well my hubby ...has now put 16 bottles of shampoo and creme rinse in the bath/shower...3 around the toilet and 4 on the counter by the sink....I ask him why....he says..."he has no idea"...I say where did you find all of these ...he says "no idea"............I have purchased them with coupons and put into the pantry...and yes I know they have expiration dates ...I am on top of this.....and now he has to have every door in the house closed....EVERY DOOR....this drives me crazy...and he has no idea why.......but he closes them and I open them....we are a mess here...........dishes are everywhere in the house as I still try to let him put the clean dishes away.....always a hunt....but we are doing good....enjoying a few good laughs....have a great day everyone and love on ...

  This has been a fun 4 days with our daughter and son in law coming home. We got to get together as a family and enjoy our grandson's birthday. I was a little worried about hubby going and being around everyone and still keeping it together. But he actually did pretty good other than getting mad a few times and being mean. Then the family wanted to go to Fazzari's pizza. I didn't think it would be a good idea for him but we went. Things went ok. Our son in laws father came to town so he wanted to meet for dinner at Fazzari's 2 nights later. Hubby was fine and then...........pride........mercy.........I took hubby's and my water glass and moved them to the side of my plate. This made hubby mad and he began..."why are you taking my water" can't I even have water" really loud....Nate tries to explain to hubby that there was another glass of water in front of him.....more confusion..........more getting mad....more of hubbies madness ..and th...

  We have been blessed with having our daughter and her family home for the last few days. Been enjoying the grandsons and just fun being together.....but......hubby....not sure what is going on with him but the meanness and anger is back...We were told to up his meds starting Monday and not sure if that is the problem or....if he is just overwhelmed. He gets so angry that he can't do something or feels no one wants him doing something. Most of the time his anger is me.........I am limiting him....... Our son in law Nathan is so good with him. He has patience and can settle Brent down and he walks him through what he is needing. Been such a help for me. Daughter has been helping me go through things to donate or sell. We took down all the upper cabinet dishes and cleaning the shelves. Running everything through the dishwasher to donate. Taking down all the items on one wall so I can get ready to repaint the kitchen. Lots of work trying to get this house ready to sell. We w...

  A quiet evening for us....watching the grandsons from Nampa while the parents are out.....and we are enjoying the old time movie "Sandlot"....hubby had a hard day.....not sure why ...might have been to much excitement....anyway he is resting tonight and we are just enjoying the evening....God bless all and have a wonderful Memorial weekend....

  Just a quick update as I am tired tonight from working and daughter and her family are coming home for the NAIA games. Hubby is doing good on his new meds.....no melt downs, no anger, no meanness..........but he has a lot of confusion....lot of not understanding, starting to choke some while eating, all of which are part of the disease. He is still having nightmares and trying to rescue grandkids......where he is yelling and kicking. But overall considering ....we are good. We both have made it through this week and not real stressed out. I am good. I am ok in my spirit. Just keeping my head up and doing whatever needs done. Thank you for asking, and for caring. We would never make it if it wasn't for all of you and you all backing us with prayers. Have a good safe weekend. Love on your family and bless them. Life is crazy out there and we never know when it is our time. God bless........

I am a grandma of 12....youngest is 5...I love taking care of grandkids no matter the age. But with a 5 year old you can play with, make the smile, get feedback, watch them play etc......now take a 73 year old hubby with lewy body dementia and Parkinson......... He goes for most of the day with nothing to say, no smiles, no opinions, no thoughts.......no ideas........just sets....if I say lets go he gets up and goes but sets in the car..... A horrible disease.....when someone comes he tries real hard to be himself....and when they leave he is back to just setting. Our neurologist says..."Helen, it will get worse"........all I can say is "Lord help me to keep my head above water"......I work hard to not have to think about it....hubby goes with me....but not really there....... No one understands this unless they are going through it.....a strange life that I will never get used to.......and they crazy part is ...IT'S NOT HIS FAULT"...............

  Today was supposed to be a fun relaxing day. We were going for a drive back to Weippe our home town...where hubby was going to decorate his parents' graves. We have commitments the rest of the month so needed to get it done today. Hubby is on a new med for arthritis and swelling.....with Lewy Body one stage is rigidity of joints. So they put him on Etodolac ....a high dose of it....Now I am fighting a new battle ..one I don't know much about but doing my best. depression......... Hubby has been down in attitude all day....he sets and stares, so I ask what ya thinking about.......he says "my regrets.....my past...and no future".....so I say "whoa......we are not going there".....we have way to much to be blessed about then to get depressed. Youngest son comes and tries to get hubby to laugh and go shopping....he went but stayed in the car....this is a new one for me. He isn't in pain....it's more just a stage.......so I am keeping him close so I...

 

  Our Lewy Body Dementia and Parkinson Disease journey #46 The last few days I have been so stressed. But mostly it is my own fault. As I begin to see my hubby suffer with more pain it drives me crazy and I want a solution and answers. I have never been a patient person and now I am totally not patient. Hubby has had leg problems for about 3 weeks but all of a sudden the leg begins to swell and get hot. So what do I do I go into panic mode. Fix this and do it fast is my idea. Well we went to the urgent care and the place was nice and clean, receptionist were great....we get called back into the room and this elderly nurse practitioner comes in. Hubby and I are setting beside each other on chairs and the NP walks in over to the bed with paper and leans down over it and places her hands on it to support herself...I almost jumped up to see if see was needing help. Hubbies test came back all clear except he was low on vitamin D...and I got upset no something is wrong. So I go i...

  Well I now remember why I quit going to doctors in this valley.....hubby has no problems...all tests are fine...same answers they gave me for 3 years....while he was fighting dementia and Parkinson.....but they all said no problems.......mercy........so I tell hubby....your leg is fine....it's not really swollen, hot and hurting....the doctor says everything is fine.....he can't walk on his leg and its red, swollen, hot and hurts....so will have to take him out of the valley to get some answers....goodness.....my faith in doctors is very very low.....but we will get answers just have to leave this area..........thank you for prayers and we appreciate you all caring...

  We are home waiting for tests results.....thank you for prayers and will let you all know....hubby is in pain and leg is swollen

  Please say a prayer for hubby this morning....it was a rough night last night...hubby in pain....not sure if it's the new meds or the disease but he can't walk...knee is all swollen up and a few other issues....will be taking him into see the doctor when they open....thanks...

  Our LBD and P disease journey #42 Update......it has been 7 days since hubby started his new meds....mercy....sure wish someone had put him on this a year ago...it almost brings back the old brent.....no melt downs....no major confusion....no meanness.....now he still has the shakes from the Parkinson....still can only follow one direction at a time....but he is sleeping more....going from getting up 8-10 times per night to 2-3 times......no yelling or fighting his dreams.....one little tiny small pill....goodness...he stil has pain in his legs and low back....still real tired....but we go to another doctor in June so will see if he can take care of that.....but for now I will take this.....I feel I have a little bit of life back.....not so stressful for me.....for Mother's day I will take the calmness...the peace back in my home....he doesn't have to get me a gift....just be himself and I am fine.....thankful for all your prayers....without God we would be nothing....God ble...

  I don't know much about meds...we just haven't ever taken much...not sure how long it takes to make a difference in someone...but hubby has been sleeping nights...not all night but most of it...hurray....and today he seems rested and more calm...no real bad mood...hurray...so the med must be helping...thank you for your prayers...we depend on them..and when hubby sleeps I get rest...hurray

  Our LBD and Parkinson disease journey #41 This job of being a caretaker is one goofy job...sometimes so stressful and other times all I can do is laugh....now don't get excited hubby did not hurt himself.....but I did laugh as I got the problem under control....you know the Bible says "laughter is like a medicine" and it this job we need all the laughs we can get....afterwards I even had hubby laughing. So this morning I tell hubby you need to cut your toenails...so go out on the patio and cut them. A few minutes later I look out and he is setting there with bare feet looking at them. I go out and he is setting there with tin snips and pliers....I say "what are you going to do"...he says "I am trying to figure out how to cut my toenails".....mercy.... Now only the ones going through this will understand ....

  Our LBD and P disease journey #40 There's a very old song that goes "you can't see the sun with your head to the ground...tears will dim your vison and wear your heart down...but I found the answer when I learned to pray...I just lift up my head and he lifts up my heart and my burdens just all roll away"....thank God for some of the old songs.......I woke up singing this....yes we hear the doctors reports....and it takes me time to process what all is said...that is why I always take others with us...so they hear and understand it all also....but I have worked it out with the Lord and I am going back to my first journey......which we started last year..."MAKING MEMORIES"...we can't change things...we have to roll with them...hubby started his new meds last night and it will take several days so see...supposed to help with pain in his legs....night sleeping which he doesn't do much and weird dreams and acting them out.......we will see......his type...

  Our Lewy Body Dementia and Parkinson Disease Journey #39 We got to Meridian and went to the neurologist....my emotions are all over the place. The appointment was more about me than it was for brent. The neurologist was blunt and honest with us. I was told to get prepared....the lewy body that brent has is 1 in 100 patients,....the neurologist says she doesn't see it often. They did a EKG and placed him on a med...I am to watch him for 2 weeks to see how he does. I was told to start looking for a memory care facility which have about a 6 month waiting time to get in. She said to get it in order....the Lord told me a few weeks ago he was giving me a year....I did not tell the neurologist this but she looked me in the eye and said right now it looks like you will probably have a year.....yes I cried....but I also know God holds us in his hands...our son Jon heard the report and went out to mow the Lawn and he said it kept coming to him to tell his dad...."this is your Jo...