therustycupboard

  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.

  Well as women we have the right to change our minds....and I did...didn't work having Maizy belle in the back yard...hubby couldn't get in or out of it...grandkids loved playing in it but I decided to sell it. No one can see it in the backyard so hubby and I decide to move it back to the driveway so I can put for sale signs on it. Sons were busy and daughter isn't coming for a couple weeks so I get out the dolly which is a dolly to move boats around with...it works great on my camper...so we get it hooked up...I am steering and hubby is pushing with his behind and little by little we move it to the driveway....now hubby's back hurts and my shoulders hurt and a head ache but it is where I needed it....now for ibuprofen...

  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...

  If you see my camper listed on marketplace ..yes we are selling it...hubby can't get in and out now with his Parkinson...he falls ..so to keep him safe and to let someone else enjoy my camper I am selling it...I thought it would be harder to let go ..but I am ok with it...time to move on...

  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 ...

  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 thi...

  Do you remember reading and learning about the leprosy camps and islands etc...well in today's world it is Lewy Body Dementia....as soon as you tell assisted living, homes etc....oh, our loved one has Lewy Body Dementia...they make a face at you and say "oh that is a tough one"...we cannot help ....our facility is not set up for that. And you walk away thanking you are diseased....even picking up your prescriptions they ask do you understand this medicine....I say "yes my hubby has Lewy Body Dementia"....oh my goodness..."I am so sorry" that is a hard one. I know I am not the only person out there with a loved one with these diseases....but they treat you like...oh, my ..well good luck....Anyway we are good here today...picked up the meds and getting the dodge packed and ready for a few days away....heading to Meridian for the neurologist appointment ...daughter and her family are always there to help with the new appointment and the changes we need...

  I don't know if any of you facing these diseases have these problems, but I need to talk with the neurologist for some answers...mercy. Hubby has this crazy idea that he needs to search the house for things. I purchase a new vacuum because the belt broke on the old one. I got the same one but decided to keep one for downstairs and one for upstairs. So I put the old one way back in the furnace room until I can fix it and the new one up front easy to get to. Hubby is determined to climb back there and always get the old one. He moves the new one to get to the old one. I hide some shampoo that I wanted to give to daughter as it doesn't work good for hubby and I. He finds it somehow and starts using it. I hide some spray paint its the kind that will change a object into a mirror...he found it and sprayed it on lumber in the yard. Mercy...drives me crazy. Just saying....I told him we are going to Nampa on Thursday...to see the doctor. He got really mad that night at me b...

  Just a note...hubby just gave me a heart attack....he is out on the patio watching the grandkids. I step in to vacuum the floor in the living room while they are outside. Grandson Gabe is with them, and he is almost 9 so I thought ok...the windows and door is open so I can keep track. I finish... start wrapping the vac up and look outside.....mercy......I take off running ..hubby is on the 12-foot ladder trying to climb on the roof of the porch. Gabe had thrown his rubber action figure up on the roof...this crazy guy decides he will get it. Now this is a man who shakes from Parkinson...can't walk straight and tall, and can't keep his balance is now on a 12 foot ladder trying to get his foot up to get on the roof. I grab the ladder and start telling him to climb down...while I am trying to hold the ladder. He makes it down and is so upset at me. Yes, he can do this....I just won't let him....good grief....

  Well........been a crazy hard week. Hubby is on new meds. They are supposed to help but....so far???.........Hubby has been angry about everything...everything. I picked up Taco Bell for son to drop off at his job for lunch.... went to burger king to get kids meals for the grandkids...got hubby a whopper and then the two chicken sandwiches. Hubby got mad....He only had one sandwich...So I gave him the 2 chicken sandwiches, and he was fine. Just stupid things make him angry. Not violent. He just gets mad and mouthy. Real cranky. I was going to run to the gas station with youngest son...hubby got mad and wanted to come...then after we went and came home, he was mad because all we did was get gas. Mercy...nothing going right for him. Not sure what the next step is. I do know it takes time for these meds to really get into the system...but goodness...He is sleeping good at night though so that is good. I told him I am going to work tomorrow and the next day and he said you ar...

  Been thinking a lot about resting. Not just going to bed. Not just sleeping. But resting. A time where you make yourself rest. You purposely choose items, places and times that work for you to just shut down. No guilt of unfinished projects or chores. Just a time for you. This is really hard for me. I have been raised to serve. It's not about me; I am to take care of everyone else. So hard to just let go and do nothing. The Bible emphasizes the importance of rest and how it can honor God. Resting in God's love is a theme found throughout the Scriptures, offering believers peace, assurance, and spiritual renewal....He gives rest to those he loves, not just rest for our bodies. But rest for our mind, spirit and soul. He cares when we are pushed too hard. So, I am trying...trying to find my place. Trying to find a guilt free place.... trying to just let this body rest and find a perfect peace. God bless...enjoy the day.

  Well, this picture saying says it all. Things change so fast with Lewy Body. I know a lot of you have no idea the difference in dementias....but Lewy body is a fast changing one. The last couple days I have not been able to do anything right. Hubby gets angry and in my face. Just me no one else. I can see it happening...he gets red in the face then purple...I know he is mad. Then he lets go with loud angry aggressive words right in my face. He explodes and then he is fine. Mostly over real stupid things like. I can't vacuum, walk or run. I say "what"...yes you can...then he is mad. Or...son comes in and says "hey mom.... such and such"...Hubby is mad. So, I had daughter contact the neurologist this morning and we are waiting for what she thinks is our next step. It will be a med change...as that is all they can do at this point. He isn't sleeping during the day any more....gets up at about 8 and is awake until about 9. Night aren't as crazy ...

  Happy Mother's Day to all you mothers....what a wonderful day to just stop and count our blessings...blessings of family, home and friends. A day to count our blessings...and name them one by one and it will surprise you what the Lord hath done. Hubby and I are staying home ...grandson Trevin came yesterday and did our yard work and we have been enjoying our backyard. Today we were to be out camping but it did not work out so instead of being sad we will just enjoy being home. We love Mexican so I am ordering take out from El Sombrero for dinner. We went shopping a couple days ago and hubby got me a few pieces of watermelon dishes. A large pitcher and salt and pepper shakers. Of course, I liked them and suggested it, so all is fine. Please enjoy your families...take time to really enjoy them...life is short.... things happen....I know several families who are grieving this day...my heart breaks for them. Our son in law lost his mother on Mother's Day a couple years ago....

  Not much to report....just the usual. Night acting out dreams. Day very confused. Very confused. His feelings get hurt real easy over silly things. He gets angry and cries. I went outside and told him to set on the patio while I went into the shed to get something to sell. I came out he was gone. He had got into a panic and started around the house looking for me...I couldn't find him so I go around the house looking for him...so around and around we go not seeing each other. Finally, I see him through the living room window on the opposite side of the house. He was in a major panic that I was gone. I am becoming more and more his nurse. Waiting on him and supplying him everything. He never gets hungry but will eat if I put it before him. So, I have to remind myself to fix him lunch. I don't eat lunch so it's easy to forget. No conversations. He hates his earring aid that I got to work again. Just life..grandkids all help out so much. Even the 5-year-old helps....

  Here is a problem I am having issues with. Hubby hates his hearing aid and hearing loss is part of Lewy body dementia. So, my problem.....hubby refuses to wear his hearing aid. If he does, he turns it as low as possible. He HATES it. But he really does need it, or at least his doctor and I think so. Well, his hearing aid quit again. I will take it to see if they can repair it again. But I think they will push me for a new hearing test and a new device. My problem now is... .do I keep forcing him to try to wear it .get it fixed... possibly buy a new one... or just let him be and be comfortable without it. I want to do what is best. Doctor says at the stage we are in it's up to us....decisions.

  Been a busy weekend for hubby. Daughter and her family came home to help enjoy Grandpa's birthday and the Asotin Fair and Parade. We took hubby's wheelchair, and it worked out great for hubby. He got tired so son in law Nate pushed him around. We also got to see some good friends while in Asotin...Jess and Carol Hahn....was so good to visit with them. Then that evening son Jon and his family came for a bac kyard firepit BBQ and games. Such good family time...even grandson Brayden and Sarah made it home from Cancun to enjoy some time with us. We are blessed with the best family. Today hubby has spent most of the day on the front patio. He will set for hours and just watch the cars go by. Daughter and family left this morning for home. Quiet relaxing day. Hubby has had some crazy nights, and busy days so kind of nice just to relax. Otherwise, all is well, and we are just trying to make all the memories we can. I tell people we don't know how long we have together .....