therustycupboard

  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 .....

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...

  Doing research on special places for hubby...for down the road....most places do not want to deal with Lewy Body Dementia....interesting...so I decide to go check out a couple places and just research them....went to one place...they were very sweet and understanding...gave me some good info...I walked out and cried all the way home....called my daughter and said "I can't do this"...I am just an evil person for even thinking of this....daughter says mom our neurologist says to start now checking for a place....neurologist gave me 6 months to a year.... a year ago to have him placed....but so emotional....I just need to go have a good cry....

  Got hubby up to go for a walk.. Taking wheel chair in case I have to push him home

  Been a hard week. But I have been able to get out and walk everyday with someone staying home with hubby. It has been fun but I feel like I am letting hubby down when I go out without him so I hurry as fast as I can to get back. He doesn't even seem to notice but I do. Hubby has been real tired. Exhausted. Doesn't want to go anywhere and if I make him go he stays in the car. He has been going through more changes. Always throwing me a curve ball. Some that just floors me...it's so not like him. He wants to go to bed all the time and sleep. I find it getting harder for me to keep up with the unknown. I know in the future we will be making some new adjustments for him...what???? I am not sure. But I am almost emotionally exhausted. Not with life but with these diseases. Please pray for me to do what is right. What to do...don't know. Most of the ways you turn to when working with these diseases...the community doesn't have to many options. Only if you hav...

  What do you do when God’s plan doesn’t look like what you expected? Palm Sunday... marks the day Jesus entered Jerusalem—riding on a donkey, greeted by crowds waving palm branches, shouting, “Hosanna! Blessed is He who comes in the name of the Lord!” (John 12:13)....... It was a moment of celebration, a glimpse of victory… but just days later, those same voices turned to shouts of “Crucify Him.” Maybe today,.... you're in a place where things don’t look like you thought they would.... Maybe you were believing for a breakthrough,.... a restored relationship,.... a healing—only to be met with silence,.... disappointment,.... or unexpected detours. But here’s what Palm Sunday reminds us: God’s plan is always bigger than our perspective...... The people wanted Jesus to overthrow Rome, but Jesus came to overthrow sin and death..... They wanted temporary relief, but Jesus came to bring eternal redemption. Even when life feels uncertain, even when it looks like hope is slipping away, G...

  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 ...

 For Christmas we decided to have grandpa give each grandchild that was home a memory hug...since he has dementia and parkinson we don't know how long his memory will be with us.  So each grandchild was given a sweatshirt and we painted Brents hands and arms and he gave each child a hug, which put his hand print on the back of each shirt.     

  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...  

  I know this sounds morbid, but I have been doing a lot of research on the Biblical views of cremation vs traditional burial....I have watched tons of videos, listened to lots of ministers.... walked through Biblical studies and I can see good points on both sides....in today's world you are pushed to do cremation as its cheaper, faster, better for environment due to not having to have so many Cemetaries....hubby and I have talked a lot about it...and we both come down to traditional burial for us....we are not against what you choose or how you go about it...but for us....we are just two ole fogies who love the traditional way to do it...simple easy no dramas, dinners, festivities...just family....just getting our priorities in place....

  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...

  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...

  What a crazy night. Not about hubby he slept through all of it. Me I felt like I was fighting for my life. I know sounds like a lot of drama but to me it was bad. Bad cough, lots of mucus and my lungs are sore from all the coughing. I finally fall asleep and wake up coughing and then...I could not breathe...it felt like the air was only going through a pinhole to my lungs. I walk through the house trying to breathe. Thinking they are going to find you passed out on the floor. Lord I can't breathe. Just a pin hole of air is getting through. I know waking hubby is not an option. I think cold air will help.. to many locks and alarms on the door. Will be to late. Lord if it's my time to go. Help me. Walking trying to breathe. Moving my arms and body to try to expand my lungs. As I walk and pray slowly I feel a little more air going in. I think I am going to pass out. Keep walking. I know sounds like a lot of drama but this was real. I felt like I was fighting for my life. A...

Just a heads up...yes, I am fine. I am not depressed or anxious. I am bored. I am adjusting to this new way of life, and I get bored. But all is well. And yes, our neurologist knows about everything. Those who are walking this with me knows that every 4 months appointments are more for the caregiver than the patient. The patient gets their meds adjusted but it's a terminal disease so not a lot they can do so they are there for the caregiver. They listen to our complaints and ideas and work through them with us. Also, anyone who knows me knows I am an open book...everyone everywhere knows when I hurt, when I am down, when I am up etc...I tell all.... thank you for your concerns and helps...just pray for us and we will continue to walk this journey...God bless and we appreciate all of you.

  It's so crazy how our lives change...for 40+ years this time of year I am working on my vintage campers. I love getting it all dressed up and ready for the camping trips of the year. This year life has changed so much that I just look at things and walk on by. I would always think of a theme and then shop for items and work the insides of the camper over for that theme. Hubby has changed and I guess I have changed. For the good I am not sure. But I look at so many things with a different eye, now. Even plans for the backyard have changed. Maybe closer to Spring I will get my mojo back but for now. No interest....I do more wondering around in circles than getting things done. Well have a great day and try to smile and make someone else's day...God bless...

  Been so quiet here ever since we got back from the neurologist. Hubby was to start taking a double dose of one of his medications. So his body is trying to adjust to it. When at the doctors she gave him a couple tests. One had questions I don't remember all the questions but one was what year it is and hubby said 2021. One was who I was and who Val was, and he got them right. He was asked how old he was, and he said 75 he is 73. What is 4 - 3. Questions like those. Which showed her his childhood cognitive awareness is still intact. Which he should not have problems with bowel issues or hygiene as the diseases progress. Things he was taught as a child. A friend dropped off a book called "I'm Betty" so I have been reading and studying it. Today again hubby has been in bed a lot. So, getting used to the idea of being alone. I go check on him all the time to make sure he is still breathing but all is good. Just another step in this journey.

  Been a quiet 51st anniversary.... hubby has been resting most of the day...daughter purchased us dinner from El Sombrero, so I ran over and picked it up...so yummy....rest of the day I have been working on projects, watching old movies and resting...hubby is in bed again trying to rest so a quiet evening here....been a good day we are blessed to be alive and we have a safe warm home and many blessings...

  Hubby is down today...he was sick all night...so not much sleep...not sure if it was the trip...the flu or his new meds....but letting him spend the day in bed sleeping....sure quiet in here but getting things done...

  We are back from the doctor appointments. Our doctor is a God send so nice, so kind, so helpful and she really cares. We found that hubby's body has adjusted to his meds which makes them not as effective. So that causes him to have issues, so she is upping the meds. She tested his cognitive awareness and found that hubby's childhood cognitive awareness is in still in effect. Which means he probably won't have the late stage issues that come with lewy body so that is good. But he is now 1-4 years left. But I have been thinking about King Hezekiah in 2 Kings 20:6 he was 38 years old when God added 15 years to his life. God holds us in his hands. So we trust and obey.

  We will be off today and on our road trip...glad I am going....but a little worried about the roads...hubby has been real confused the last week. So we will see what our dr. has to say. Yesterday he went to the basement to get something and couldn't find his way back up the stairs. But I am feeling blessed so we got this. Lots of emotions in me today lots of things happening in our life and family. The good thing is we have to depend on the hand of God and He has a perfect plan. We just have to trust and obey. Have a great week and remember to kiss and hug your family. Time is short.

Every time I give a good report about our disease something goes crazy. Last night was just weird. We still share the same bed...and before you all go crazy the reason is so I can know when hubby is struggling. If I put him in the guest room he could be all over the house and me not knowing he is even up. Since you all have been a part of our journey I have tried to be honest in everything and keep you all informed about this disease and also for the ones who are also going through this so you know you are not alone. Well, I was exhausted, so I went to bed a little before hubby. I was sound asleep when I noticed hubby struggling...like shaking, legs kicking, etc....this wakes me up and then hubby leans up and stares at me...and yells "what are you doing in my bed"...."this is my bed"...why are you here"....I say "what are you talking about"...he says "you know this is my bed"....I said "do you want to sleep in the guest room"......

  Lately it seems like hubby is in a slump...he wants to sleep all day and lay awake at night. He sets and just stares at the grandkids or me and doesn't' want to do anything. Finally, I turned around and said, "Brent do you hurt anywhere"...he says "no". I said, "then get up and move and find something to do".....I said, "you are not dead and not dying today so let's not just give up". Apparently, that is all he needed...he walked in and talked to the grandkids and then looked for his word search books and started working them. Sometimes we just need to be shaken from our thoughts and life. He is now more like the old Brent. Not sure if it was me and daughter talking about the wheelchair that has done it or not. We ordered a chair, and it will be coming but it is to get him outside not depress him. We go to the neurologist in a couple weeks and see how things are going...but until then...we are staying alive and moving these ...

  We are off on a roll....kinda driving me crazy and it's only 7:45 am....it's garbage day for us here today so we have to take our garbage bin to the side of the road. This has always been hubbies' job so I wake him up and say "don't forget the garbage man is coming today". He says "ok". I go get the house ready for the grandkids to come for homeschool. I look out the window and just have to laugh....poor hubby got confused and out along the main road is my kitchen garbage can and the bathroom wastebasket ...just setting along the road. I say "Brent no you have to take the garbage cart out the one that is outside and put it along the road:. mercy....so grandson asks hubby could I have pancakes.....I go into the kitchen and hubby who is never to use the microwave had put 3 pancakes into it and put them on for 4 minutes.....they were burned black and the plate was so hot.....this man keeps me on my toes....ready to jump ....watching at all ...

  They tell me it's because of a full moon. I don't know anything about the moon. But my hubby of 73 with LBD and Parkinson has been in some bad moods the last couple days. He wears a earing aid in one ear. he has always been able to change the battery but yesterday he put the battery in backwards and forced it closed and so it did not work he got angry and I had to take it to the clinic to get it fixed. Today he was shaving with straight razors cutting his face up...I said no use the electric razor and he got angry pulled his arm back like he was going to hit me. Yelling he will do what he wants. He broke down and cried yesterday because he said no one would listen to him. Not sure what that was about. Life has been hard the last week. And yes he is taking his meds but ...mercy...today we lost a friend and he has been crying and crying...sometimes this life is just a crazy hard mess...just saying..thank you for listening and if it's the moon...please moon just go ...

  Well, according to Facebook it has been one year since we first saw the neurologist in Meridian. We were told then that hubby had lewy body dementia and Parkinson disease. We were told that he was in middle to late stage and he had 2-5 years to live. I have cried and prayed and tried to make things as good as possible. We trusted the Lord and with all your prayers we have made it through some tough things. I can say life is far better today than it was a year ago. Hubby is on mood meds and they really do help. He is on a med to help with hallucinations, dreams and acting out the dreams. You know we are a no med family but sometimes we have to do what is best for our loved ones. These meds have really helped us out. We will see what the next year has for us. But we want to thank all of you who have walked with us through this journey. Who never cut us down, made fun of us, or passed us by. You have all cared and prayed and we fill your prayers. Now off to another year. W...

  Do you ever get to a place in your life where you feel you are in limbo? Orders for our shop are filled ....no longer working for son in construction, no longer working retail, holidays are over, housework is all caught up, decorations are all down, not planning many camping trips this summer, due to hubby's medical problems and appointments, sons apartment is now in order, I plan school lessons and research all I need for homeschooling two grandkids, and we do homeschool each day. But the rest of the time I am in limbo...like I am waiting...for what?.... not sure. Today hubby and grandkids were all asleep and I wondered around and around the house. Restless.....nothing seems interesting...so I grabbed a book and set and read the whole thing.... somethings a stir within me but not sure just what.....Hubby has been really tired...not hurting...just not wanting to read, watch TV or anything...just sleep or stare at nothing....2025 what do you have in store for us?....actually ...

  A few days ago I wrote a post/article about our journey for the Lewy Body Dementia Caregiver Support Group....later I was contacted by a lady from New Jersey asking to talk...I told them I am only a wife not a professional of anything. But ones are reaching out to talk. Someone with a ear to listen and feel the same pain we all feel. Pray I can help them with trusting the Lord. That is all I can recommend is trusting God. I myself is discouraged and failing. Today I feel so heart sick about this awful disease. I tried to get hubby to go shopping for a little bit with me. He decided to go but his leg has been swollen, his ankle and his knee. He rode with me to the store and stayed in the car. We got home and he fell asleep. I cooked dinner and watched as he gasped for air as he was sleeping. Mouth open and breathing hard. Finally he woke up and walked around and got some dinner. But choked on the dinner and spit it all over him and the chair. Went back to his chair a...

Tonight I almost have a fear to even post. Been a crazy emotional week. But hubby has been sick now for about 4 days. His leg, ankle and foot is swollen so he hobbles around the house. I am sure it is bakers knot again which they told us just to give Ibuprofen for the pain. But I am going to talk with the kids tomorrow and maybe take him to the walk in clinic to make sure we are doing what we can. So this post is for prayer. He is suffering with this and I know the diseases do strange things, but I need to know for sure. He is back to screaming and jumping in bed and hearing strange sounds he was screaming i am sliding stop stop..I was sound asleep and flew out of bed thinking i was having a heart attack. If you are tired of hearing about our journey that is ok....it's our journey and we are the ones walking in it. All we need is prayer thank you so much...appreciate all of you...and for those who have been asking ..yes I am on the mend...slowly getting my strength back......

  Lazy cold day here.... hubbies leg is still swollen, ankle and foot so he is limping along....me doing fine...thanks for prayers but we are just hunkering down at home again today...God bless and have a wonderful fun filled day.......

  We live in such a crazy world. A world where most all of us are suffering in one way or another. Always something coming our way. No one is immune to it. It's life. But we pick up our selves and become an adult about it and move on. We find joy or happiness in one way or another and go on with life. Ones who have dementia....can't do this...they are slowly loosing their ability to figure things out and move on over the top of the situation. Hubby was setting yesterday with swollen leg, ankle and foot reading his Bible and he looks at me and says "ones like me going through disease needs HOPE".....HOPE...a life line to something better....never take HOPE from someone....words hurt, actions hurt but what do we do....we lay it at the feet of Jesus and then we move on. Hubby just wants to have HOPE....that he can still have a future even though he comments "my body is giving out". Stand strong people....if you have loved ones going through this....pl...

  We have started a new year and to be honest I am just a little worried about it. I can see the future and it scares me. Lately hubby is been good...just changing. He follows me from room to room like a shadow. And to be honest drives me crazy but I let him. He doesn't ever say he is hungry but if I go to the kitchen and get a Keurig he wants one. If I get a bowl of cereal he wants one. Everything I get he wants and yes I fix him meals. But with my stomach problems I don't eat what he needs but he still wants what I do and eat. He no longer can get the grandkids juice or milk out of the refrigerator. He is limited on more things every week. He sleeps good no nightmares or weird dreams. No screaming or yelling as his meds are controlling that. We were at our youngest son's house in Asotin and I asked hubby to take garbage to the dumpster and it was dark and he got lost. I finally found him but he can no longer take garbage out. He is getting harder and harder to ...