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Have you ever felt that the hand of God was moving just one step ahead of you....that as you make decisions and plans and go to check them out how things are just falling in place....well, I have...and then I step back and say "you know that was the hand of God"....timing just doesn't always work out so perfect without the Lord moving things in place right before you. This has been a crazy week where sometimes I have felt my brain was short circuiting....but sons, daughter and son in law all stepped up and said "ok, this is how this goes" and they just took control and wasn't stressed or nervous just worked things out in order. Me, I have held onto things in my life for years. Most I don't' even need I thought it would be hard to let go but it really hasn't been. Actually, kinda nice. But when you are ready you are ready. Changes are coming and I will let you all know as they progress but right now it's to early. But I could never have m...

  Daughter and her boys are on their way home...we have several appointments that need daughter and son to go with us to...changes coming....what would I do without my grown children... we also have DIL's and SIL that are ready to help and are involved with what we need to do....we are blessed ...I want to know the heart of God concerning some of the things we are looking into...so I walk the floor, I soul search, I repent, I talk with God, I talk with children and then I will know. Hubby is to the point where he doesn't understand what is really going on...as long as he is fed, cool and relaxed he is just fine anywhere. Our doctors say it is going to be harder on me than it will be on him. No.....hubby isn't leaving....at least not yet...I still got this...but changes are coming so I have to be ready. A funny disease...God gives a person time to get things in order but with the time the person has no idea what is going on. Crazy disease. But then I have to also look...

  Our Lewy Body Dementia and Parkinson disease journey Always a curve ball being thrown at you. These disease never give you a break. Doctor says yes walk your hubby. Neurologist says walk your hubby. So I take all the steps and walk him once a week. That's all and mercy. He walked on Tuesday and he has had problems ever since. His legs and feet are swelling. Everyday more. Contacting the doctors now to see what can be done. Mercy...He hasn't had problems with his legs, feet or hands swelling ever since he had hernia surgery but here we are back at it. He doesn't feel good he says just tired and kinda ach all over....so???? will let you know what we find out....he is having a hard time walking at all ..his toes are even swollen...sorry kinda gross pic...but need it for the journey...

  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...

 I am feeling pretty low.  I got hubby to walk a mile this morning and now all afternoon he has been in bed.  I hurts all over.  I feel terrible. He is sleeping so will let him sleep but I feel so guilty.

  Hurray!!!!! I got hubby up and ready to go by 7:30 am. We started off on our walk. Hubby with rollator and pushing it. He starts out real good. But starts slowing down. My phone goes off and says half mile completed and he says "lets go home". So we turn and start back hubby is sliding his feet now but still walking, then he begins to fall. He hangs onto the rollator and I grab his arm and we get him back and settled. Now according to our doctors it is not considered a fall unless he hits the ground. We will take this as a stumble. But he is dragging his feet. I say "do you want me to push you the rest of the way" He says "no". So I say "well, then pick up your feet before you stumble again". Now he is walking like a tin soldier. Marching it off which lasted a few steps. He is walking slower and dragging his feet.... But all in all he made it back home. He walked 1.12 miles 2753 steps and took 25 minutes....not bad for someone who wants to just...

  Today hubby stayed with son and grandkids as it was sons day off. So he went with the kids to swimming lessons and then son brought him back home. I was gone 3.5 hours painting a contracted house. When I got home hubby has been real confused. Walking from room to room looking for that thing. What thing, I ask? He has no idea. But he looks and gets upset because he can't find it. So I go get the remote and tell him it needs new batteries....it didn't but maybe that is what is bothering him. Guess it worked. Mercy ..always a guessing game. but the good news the remote has new batteries. Tomorrow I will be taking him...he gets to confused for me to leave him.

  I think I have found a small job that hubby likes and keeps him busy. We have underground sprinklers but some areas my flowers are not getting enough water. So I have hubby resting out back on the patio doing word search and I tell him every 10 minutes change the water from the sprinkler to a different flower. Seems to be working...flowers getting watered and hubby seems happy...a win win for me.

  Well I went for my walk...came home got hubby up and wanted to go get groceries from WinCo before time for grandkids swimming lessons. We get to WinCo all happy and having a nice time...filled the cart and got up to pay. I put all the groceries on the ramp and a lady in front of me asked me a question. So I stopped and talked to her...when I turned around hubby and the empty cart are gone. But it's our turn for the cashier. I see through the people hubby leaving the store...all smiling with a empty cart. I turn to the lady behind me and I said "My hubby has dementia he is leaving the store I have to go"...she puffs out ..... "welllllllll" like she was really irritated....I tell the cashier I have to run get him...cashier says" that's fine, go"....the lady behind me is so irritated and complains to the cashier...as I go running between people to get Brent. When I get to him outside...he is real confused....but he can't run due to Parkinso...

  Update on hubby...tired...all day and night...pretty quiet just sets and sighs...no pain...just tired. Received the following from a friend.. As care partners and caregivers, we each face our own unique storms. It’s fascinating how one moment everything can feel calm and then suddenly, chaos erupts. It makes me wonder if those quiet days are just the calm before the storm, especially with O’l Lewy lurking in the background, ready to make its presence known. We don’t have lifeguards or life jackets, and there’s no safety net waiting for us. We’re navigating uncharted waters, doing our best to stay afloat while caring for our loved ones. It can feel overwhelming; we often worry about our own safety while trying to ensure that they are okay too. This storm may pass quickly or linger for days, and it’s exhausting. We’ve poured all our energy into supporting our loved ones, and sometimes we forget that we need care too. In the midst of all this chaos, we have to find ways to be the c...

  Hubbies father's day gifts from son Jon and Jon's fathers day shirt from Sue

  Emotional Divorce....I was asked if I feel like I am in an emotional divorce. Well for one I hate the word divorce. But I had to stop and think about this. Yes, things are really different now. Hubby is like a roommate who doesn't talk except to grand kids where he grunts mostly or to visitors. Son took him out yesterday and said dad was pretty good and talked to him. But to me...mostly just sets no conversation....or he can't hear or comprehend the words I say. But then there are days that it is better. Mostly he does just set and I do other things and entertain myself. Never even thought of it as a divorce. Yes...I get upset sometimes but I am fortunate to have grown kids I turn to. They help...understand and care about both of us. But as far as an emotional divorce or any other word about it....not in this home. We are together until death do us part....I am not trying to be a saint or anything ...we just took our vows seriously and our kids love us both an...

  Been a while for hubby to have a bad night. Not sure if it's because of being so busy the last few days. I know he hasn't been feeling well but nothing big. But last night I was asleep and he was in his room and began yelling...more just yelling than screaming...I was told by the neurologist to let him be so I did. As long as he doesn't hurt himself. He yelled and yelled and then settled down and then again...this went on three times. Then he got up and started walking the house. I stayed in bed and just listened. He then went back to bed. Now I am wide awake...I try and try to figure out what triggers these episodes....was it something he watched on TV so acting it out, was it because he didn't feel good, was it because we were so busy the last few days. Not sure. I was planning on leaving him for 2-3 hours tonight while I take the grand kids to the circus. But now I think I might need to have someone come set with him. Will see if grandson c...

  Most of us learned to draw a clock in about the second grade...but today our doctor said Medicare needs us to draw a clock...we were both given a time ...I was given 10:45 and brent was given 11:15. I drew mine and gave it to them and they took it...hubby spent about 5-8 minutes working on his and finally finished I got to take a pic of his while we waited for them to come back. I guess drawing a clock tells them a lot about a persons mind. Doctor appointment went good. blood work, tests, and exam for our yearly Medicare physical but with added extra tests...will know in a few days...but glad it's all over and now done for a few months. here is hubby's clock

 

  Several have asked what else needed to be done for our financial with an attorney. We have already done everything but take hubbies name off everything. This will be done soon as he could be facing... palliative care,...or hospice care. Which could come at any time.....but to do this we need to get things where they can't be touched. It's a process that an attorney must handle. And if at any time Medicaid needs to come on board we are ready and have all our ducks in a row. I know most of you are already set in this but this is something we let slide and now trying to get it all done. Right now hubby is holding his own and we don't need the extra care but down the road...yes it will be necessary. Our neurologist says out of all her patients only one tried to keep the loved one home and it turned out not good. So the Lord knows when, where and how this will all work out. We have always had insurance and etc through hubby's jobs but now we do what has to be don...

  Our journey home was pretty pleasant. Just beautiful out but hot. We stopped 4-5 times to let hubby get something cold to drink and move around for his legs. He didn't say much of anything until we got outside of Winchester. Hubby are you taking us home. I said "yes". He says, "well it should be almost dark when we get there". This was at 2 this afternoon. I said, "no we are just a few miles from home." He says "we have to go up the river yet" ...I said "no we are going up Webb road to Tammany then to the house"..He sets up in his seat and says "no, I want to go home to Weippe"...I said 'what we live in Lewiston we left Weippe in 1984"...He says "take me home"....finally I say "ok, I will take you home to Weippe in a couple weeks but right now I am tired and we are going up Webb road to tammany to a house to shower and rest...He says "ok, then take me home to Weippe"...ok hubby wi...

Been a crazy weekend...we left Lewiston at 6:30 pm and made it to Nampa at 1 in the morning. Went to see the neurologist on Friday and she was very helpful. Hubby has gained weight and is doing pretty good. She wants me to get everything out of his name and prepare for the future. So kids and I will finish all the legal stuff and get things all set up for future. But no one knows really what the future holds....the old song goes "I don't know about tomorrow I just live from day to day" such a good song. All the way down I listened to Joel Osteen on book on tape reading about his book "Break Out"...I got so much from listening to him. So actually, I am good this time...nothing hit me hard. So the rest of the time down here we have just been having fun, ran to daughter's neighborhood yard sales...was so fun. Shopping, out to dinner, playing with grandkids, changing daughters' shades and drapes and just a nice time. I was super tired the first day but ...