therustycupboard

Kenny Chesney - While He Still Knows Who I Am (Lyrics) (youtube.com) Drive a Chevy 'cause he drove Chevy's Like him I'm a baseball fan I'm going back to see him While he still knows who I am Mama says he can't remember Daddy thinks he still can I'm going back to see him While he still knows who I am This time I'm gonna hug him Instead of just shaking hands Gonna tell him that I love him While he still knows who I am I only knew him as my father I'm gonna get to know the man I'm going back to see him While he still knows who I am This time I'm gonna kiss him Instead of just shaking hands Gonna tell him that I love him While he still knows who I am Songwriters: Tom Douglas, David Allen Berg, Georgia Middleman For non-commercial use only. Data from: Musixmatch

  Our Lewy body dementia and Parkinson disease journey.....well this is a new one....we are both exhausted so I go to bed at 9...hubby was taking a shower...next thing I know....hubby is in bed..let's out a loud yell...at the same time he jerks real hard...the bed goes toward our feet and falls to the floor and the headboard lands on our heads...mercy...going to be a long night....

 

.....well the solitaire game did not work...hubby would get confused..did not want to learn it...would get angry ....could not remember any directions....but I enjoyed it...he has been stumbling a lot..almost falling but then will catch himself....I really miss conversations with him...nothing...he sets and watches TV....but has nothing to say...if I try he says..I have no idea what you are saying I can't follow you.... well thanks for listening...off to find something to do until he gets tired

 

  Hubby and I were both raised that you didn't play cards....and now the neurologist says give him a puzzle or cards....well he is not going to do a puzzle so we are learning how to play solitaire....blind leading the blind....I call daughter every few minutes ........now what do we do...mercy

  Our Lewy Body Dementia and Parkinson Disease journey.... Long night last night...hubby was up 7 times....could not sleep ...when he did sleep he would dream something was after him and he would wake me up yelling.......mercy......today he is sleeping ...

  Hubby has a blue walker with a seat attached. We picked this up one day at the thrift store when hubby was having a bad time so dizzy he couldn't walk...so I turned and said "oh set down on this"...well we ended up buying it and it has worked out pretty well. But my dilemma is.... I drive a 2012 jeep liberty...the hatch comes up and we put the walked folded down in it. But as the disease goes on hubby's strength is leaving. He struggles to get it out of the back. So I try and it is hard...it doesn't fold clear down so the wheels catch, or the handlebars catch......sure not like the old strollers that folder clear down. So what I have the kids looking for is something that we can both man handle with this walker. Yes, my jeep has top racks on the roof but too high for me. So not sure if we need a hitch rack but one that I can still use the back for groceries or what.....also what I buy I need it to be able to have attached a fold down wheelchair. Any idea...

  Every day it amazes me how much this disease steals from us....I hate it. Today I was to ask hubby several questions....one name the 12 grandkids...this is one he practices all the time...over and over but when I asked him ...he names one son and 5 grandkids and was so frustrated he could not remember the others....this is a man who could tell you the license plate numbers of the people who lived in Weippe in the 70"s..........he still knew them up until this disease.......a man truck drivers would call and ask what was some of the best truck stops in the states.....he knew them by name and address.........now he takes the garbage out and never can remember to put a bag back in....he vacuums be goes over and over in one spot......he puts dishes back in not the cupboards but the oven, refrigerator, dressers anywhere......but also a guy who if you ask him about semi's will talk for hours ...gotta love him and just follow behind him and fix what needs done....yes, it drives me...

  LBD.........One of the hardest things to process is the slow change in the one you love. Becoming a completely different person. Everything changes. Just so you know. It's called the long goodbye. A rapidly shrinking brain is how a doctor described it. As the patient's brain slowly dies, they change physically and eventually forget who their loved ones are and become less themselves. Patients can eventually become bedridden, unable to move, and unable to eat or drink or talk to their loved ones. This is what we have been told.......but not what we except.....our lives are held in the palm of the Masters hands.....

  Our Lewy body dementia and Parkinson Disease journey Today has just been a weird day. Last night hubby could not sleep his leg hurt and he was restless. Then we always get up around 4-6 am. This morning, I got up and hubby said I want to sleep some more. So ok go ahead and rest. About 9 am I go in and say "Brent, I need you to wake up I need to run to town and take care of some things and get groceries".... he rolls over and says "ok, go ahead and go"...what???? ...hubby never says that.....he never likes me to go alone even if he has to set in the truck while I am in the store.....but today he says "go ahead"......I get back around 11 am...and finally get him to get up....he says his leg is ok....but he is just resting...no energy...doesn't want to do anything.........so if you are not to busy......just whisper a prayer for him....he ate good but just not Brent.........

  Today has been a long day....we started at 8 am working on a wraparound deck....3 sides of the home...we had to repair, reinforce and paint it....took us until 5 pm tonight to finish....looks great but was working hard and in this heat I forgot to take pics....hubby had to stay home on this job....he woke up with his knee not bending...so he couldn't walk much at all ...in fact he hardly made it down the two steps to his chair and TV room......so had him keep his cell phone and watch handy so we could call and check on him......which we did but he never did answer he never heard either of them ring..............but all is well ...we also had a dear friend stop by last night and pray for both of us....I was pretty down in my spirit last night and it was so good to just listen to him talk about his love for the Lord.......we are blessed to call him friend....his words meant a lot to the both of us....so thank you Pastor Phil.....you have such a encouraging ministry...and always a...

  Today has been a hard day.....total meltdown.....youngest son helped settle him down....he thought we were leaving today not on Sunday......mercy..........so hard....I try to guide but things get taken different so easy....without me realizing there is an issue.....until it's a meltdown.........

  I find so many things are so different. I know some of you who have lost your loved one understand what I am saying. It is so different. But my hubby is still here but not here. So sometimes I forget. Like we are going camping...hubby always took care of the outside things like firewood, axes, shovels etc...man stuff....now I have to remember NO AXES.. ..so I try to get kindling before we go. Firewood has to be split by sons before we can go. Because neither of us can use an axe. Trying to remember the stabilizers, fire poker, etc...Hubby is trying but I am finding something being put into the Jeep some are being put in the sheds...and finally some in the truck ......etc....hard to get on the same page. Not complaining just recognizing a new world for us. But we will go and have fun.... memories can be made over some of the silliest things....and we intend to do just that....

  We had our yearly physical today....for hubby not much change. With this disease...there isn't a magic pill...no quick fix...nothing...so the main thing they did was just record progress in the direction that it is going. He is a little depressed so trying to make him happy and enjoy the day....We are fine.... Hubby joined a new group today.....the ones with the green and white card.....hubby uses a walker due to dizziness and will be in a wheelchair in time....his doctor filled out the papers and.. he has joined the club of the handicapped....listen we know this is serious but sometimes you have to have some fun to take away the stress....we are making him proud.... His cards are in the mail....

  For those of you who are following our journey I want to just let you know how a little of our day goes...for those who are not following please just move on to a different post..... Our morning....me...let's go out and check the antifreeze in the pickup hubby...ok....so he goes out and raises the hood...and stands there me....now take the cap off the radiator and let's see hubby takes cap off and stands there just looking...finally I say what are you doing... hubby...I have this lid and can't find what to do with it me...it's for the radiator.. check the fluids hubby....just looking at the motor and standing there me....how is the fluids now....all of a sudden he is him and he says "oh it's good we don't need any....and we talk a little about the truck then he stares off to the back of the truck I say what you doing..... hubby...I don't know me. Well let's close the hood now...he is angry and says "it's all your fault. You never let me d...

  Hubby is knowing that his disease will not get better....unless a miracle from the Lord....he talks about it....but as the days go by. He is so confused....tired ...dizzy and just sad. We go to our primary doctor on Monday and maybe he will have some good answers....but for now hubby is resting on the back patio trying to do word search and watching the grandkids play. He eats good and everything is still working good. No pain. Just his mind is slowly fading away. What a journey....We never know why we go down the roads we go but the Lord has his hands on us and He knows our journey. We trust Him completely to guide us...give us peace...and me strength and patience....we can do this if this is what he wants for us. thanks for listening....God bless...