therustycupboard

  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

  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...

  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...

  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....

Now what I am going to say is for our valley and for us. Do your own homework for your area and spouse. I have done my homework...visited several places and in this valley...no one wants to deal with Lewy Body Dementia. It's like a plague. When you ask they say "nope"...we can't handle that here. It's not their fault...this disease takes special people and 24/7 care....I get it. I have ones from the valley who specialize in this disease call me and talk ...ones from Boise call and talk with me. And, it comes down to "stay in place"....so for now we are being told the best for hubby is to "stay in place" and have ones come to us. It's cheaper and he is safe here. But ones can come into the home to help. This I will be checking more into to see where that goes. Thank you to the ones who have recommended homes outside of the valley but kids and grandkids want grandpa close. So that is what we will do. Actually, we are fine...I get o...

  Actually, we have been doing good. Hubby has been really mellow. Not wanting to go anywhere but is back to reading a little and doing some word searches. He loves to watch the grandkids play and they also go get him to make sure he watches. I see him changing daily. And, not for the good. So hard to watch as your hubby slowly .....Hard for me to even say it. But I am blessed he is still here for now. And, I have learned a lot about these diseases...in fact sometimes I think I know to much as I see him change, I know why and maybe it would be easier just to check it off as old age and not know what is really happening. The last couple days he has been trying to help...he gets really tired really easy...always saying "I am so exhausted"....and then goes to bed. But we have been trying to clear out anything that could cause a fall. All small stands and dressers are leaving, baskets on floor etc. Lots of things are going to our son Jeremy's house as he is in real need ...

  Been having to rethink some of my ideas and change a few things I wanted to do in the future....ONE .... yes, it is a good idea for one level ........but not for hubby finding his way around in a new environment...especially with him already getting lost a few times when at another place....so maybe have to rethink how he moves around in our current home....instead of moving him....TWO....sons and son in law (Jon, Jeremy and Nathan)....are telling me to slow down....so thankful for each of them...they keep me calm and in my place.....all of them are there for me and I love them all so much...even grandson set and told me yesterday....grandma slow down and think this through....we can make this work...thank you Brayden...hubby fell the other day trying to get up two steps to the kitchen and cut his arm....but I think I could use child gates and block that way of him going....also removing all tools and extra gas etc out of all backyard sheds....going to child proof all of them for...

  Hubby 5 years ago ...strong and healthy...today I asked him how old he was, and he is so proud looks at me and says "I am 78 and will be soon 79: .......nope...he is 73 and will soon be 74 on the 19th of this month....but at least he is happy today no matter what his age is ...counting our blessings...  

  Cleaning out a couple sheds and found Brents three wheel bike....When Brent's dad was in his late 80's early 90's he had a three wheel bicycle that he would ride from Weippe to Pierce and back which is 11 miles up hill...he would go to the pharmacy there and get his meds....he wouldn't let anyone take him he would say "I have all day to do this" and off he would go...many of you remember seeing him and he even made the newspapers.....our son Jon came up with a three wheel bike for his dad for Father's day. in 2018.....he saw a vintage one online and bought it.... hubby was so excited ...reminded him of his dad......yes, I tried it but I forgot the hand brakes and ran into the neighbor's fence......we just love this, and it was so thoughtful of Jon and Sue to get this for their dad...it has brought some good memories back for Brent....no hubby didn't ride it...was hard just getting him on it....

  It's so hard. I know that by now I should be able to handle the emotions of this disease. But it's so hard. We were sound asleep, and I hear these yelling crazy words...then he begins crying saying "please stop". I lay and ask the Lord please help him. It gets quiet and I think it's over then he gets up and walks through the house. I lay and pray, and he goes back to bed. He is asleep now and I am stressed. I am a girl who believes in prayer. But still hubby suffers. I know God can heal but still hubby suffers. I walk the floor asking the Lord already to help us...I know some of you have gone through worse and I am trying not to complain. It's just that it's so hard to watch your hubby change...daily. And you have to just sit and watch. Yes, he lost his temper today. He just yelled at me was all. And yes he was sorry after. I am a hard person to live with I know. But after 51 years you would think we got this. All is quiet here now so I guess I...

  Just an update...will all the prayers and his new meds hubby is doing good. Even back to reading and enjoying some books. Which is a good step. So I am just counting my blessings.

  The hardest part about these diseases is the caregiver never knows when or where the loved one will have a meltdown. Hubby has been real good helping me as much as he can while I have been sick. Things have been going ok and working. Until today...youngest son stops by to bring the kids for school and us to watch until he gets off work. He asked me to go outside and help him so he could talk to me. We stepped outside and I forgot to tell hubby....he comes out all upset....we say we are just checking the fluids in the pickup and you can help out. That's when he exploded....started yelling...the neighbors come out on their deck to see what is going on. Hubby is yelling and almost crying that no one will listen to him. Son says "Dad it's ok...we are done just go inside". Hubby is crying and takes off for the house. Mercy....meltdown...big time....first one of these since he was put on the meds. Son came in and talked to Dad and grandson Gabe sets down and just s...