therustycupboard

  Well I am setting in my truck in a parking lot. Alone, quiet, trying not to even think. I am not mad and not crying ....Just me. Today has been a hard one. Hubby woke up not feeling good. Back hurts, head hurts, dizzy, thinks he is going to faint etc. So he was just resting. Youngest son Jeremy came up with the kids to change batteries in his jeep. Replacing the old one with new. So I went outside with him and so did hubby. Brent got a tool and started helping and I was watching the kids ride their scooters when hubby sets down so I go to help son. I look at Brent and he starts crying and begins to yell. He is not stupid and he's not a dummy. Crying and yelling. I said "what no one says you are one"...that made things worse.....he stands up and throws down his tools and marches around all mad and melting down. If I said anything it got worse. Son says "mom don't take it personally" dad just stop. Brent looks at him and goes up the steps. ...

  We have been blessed with the best kids. Always there for us. Sometimes almost to much. I lean on them for so many things and lately so many decisions. I was told by a family member.. not my kids.. that I lean to hard on them, they have their own families to take care of also. Kinda was a slap in the face thing. Because I know it is true. Today the selling of our home fell through...so have to start all over again. Things are tight out there and money is hard to come by. Yes, I cried. I turned to the kids and said "ok, now what". Then I felt so bad. I laid all of this on them. Hubby has no clue and only smiles when I tell him. So the only thing I can do is "go to the rock".....the song goes... Where do I go? When there's nobody else to turn to Who do I talk to? When nobody wants to listen Who do I lean on? Oh When there is no foundation stable I go to the rock I know he is able, I go to the rock I felt my world is falling apart. So many things to ...

  Thank you for all your prayers. Hubby slept peaceful when he was asleep. He got up about 7 times to use the restroom and then back to bed asleep. I was awake most of the night listening for him. So glad he got some restful sleep. Again, thank you for all your prayers and concerns...You all keep me going. God bless.

  The last few weeks have been going along pretty good. Lots of confusion and hubby not hearing much...he keeps getting real tired. But he has been ok. Night before last we had issues. The problem with Lewy Body is you never know what can set off an issue. Apparently hubby got something off TV, because that night he begins yelling about 2 am...not screaming but yelling. I go to the door of his room. He begins to cry still asleep and then he points a finger at me and starts yelling gibberish...I say "Brent Brent wake up". He finally does and tells me that communists were trying to get to the kids. Had to be from the TV. Last night we were sound asleep and he begins to scream, I hear him throwing his body around hitting the wall the bed shaking and him yelling. To be honest it kinda scared me. I go to the door of his room and say again "Brent wake up. I then turn the light on and say Brent wake up. Trying to do the steps the neurologist tells me to do. He wa...

Today I took hubby to the doctor to have his feet checked. A Podiatrist, because his feet keep swelling. The nurses took hubbies blood pressure and it was 179/90 and both nurses were a little nervous about it...they said "its to high" .I said "it's ok...that is good for him". The doctor was young but very kind. He listened and then said...with your hubbies problems and meds he is taking the least of our worries is a little foot swelling. So we had him do a few things and left. Hubby is resting. I have been waiting for a phone call....I was going to give it until Thursday to see if they were going to call. But impatient me I called them. Good thing I did....the receptionist was so nonchalant...like its no big deal...ok we will set you up for a tour. Just a noncommittal attitude. Me I want to reach through the phone and slap him...'listen buster this is my husband we are talking about ...get with the program"...but instead I hang up and call d...

  Our Lewy Body Dementia and Parkinson disease journey...trapped..october 28th For me, it is the worst feeling to be trapped in a situation not of your choosing......... where you have no idea how bad it will get........ how long it will last ..........and you have the sole responsibility for everything.......... which you have many doubts about whether you are capable of meeting........ . Your whole life is turned upside down ......you begin to question everything you say and do.....even family members question everything you say and do...... This is so very different from other marriage challenges.......... because you are alone in a marriage ...........with a hubby who no longer is capable of even realizing how bad the situation is....but you try and try to do the best that you can.......life.....without the hand of God I could not do this.......

  Well we have moved to a new stage. This stage I think is coming from his book movies which we have had to get off our TV. But for the last week hubby has been visited by Rosanna. This Rosanna wants to learn to drive semi..so Hubby has been helping her. I do not know a Rosanna and don't think I ever have. I have been home and no one has come by but hubby says she has. He will tell you stories about her and him trying to teach her but he has the guys from different jobs and different companies all mixed together and not one story makes since. This is why I have to keep certain programs off the TV he watches them and then thinks they are real. I am working on some plans and I feel guilty about doing it and then I know I have to do it and back and forth. Please help me pray if the Lord wants this to happen he puts all the pieces in place and if not he blocks them. I am torn on this. But things have to change. Thank you for the prayers. My heart is so heavy over all of this ...

  Not sure how much hubby understands at our neurologist appointments. But ever since we have been home he has been having anger issues. One is he likes to watch talk shows. Not bad ones or nasty ones....but ones that are about a senior and his family turns on him and goes after him for his money and he retaliates. Doctor says NO....stop those shows as with his state of mind he may begin to think it is real and all about him. So since being home I have tried and he gets real mad about it....even threw the remote at me and started yelling....daughter is going to figure out how to delete them off our TV. Today I needed to run errands so I ask him to go he says "No I am staying home" so I go but try to hurry back. Finally I talk him into going and he stayed in the car when I ran into Winco. This afternoon daughter calls and says "mom meet me at Hobby Lobby to shop" she is in Nampa and I am here but we facetime and it is fun. So I tell hubby I am leaving for on...

  You know I count on all of you a lot...I figure if I get crazy some of you would kick my butt. I got a call and the person feels that I am in a depression. I thought I had a good day today, hubby helped me clean out the shed take out all Christmas and put in the yard items, mower etc. All the Christmas is on the car port and we are going through it little by little hubby could only help a little as he has arthritis in the back and it hurts him a lot. Yes I do have times where it really gets to me....times when I want to scream...but I go to the Lord in prayer and come on here and ask for prayer....well I guess I need your prayers now. I am so sorry if I made some of you feel that I am in a depression. Not sure how it feels but I had a good day today. I will tell our kids to let me know if they see anything weird in me....they will tell me. But for now I guess I will just go on about working the tubs and let this all go. Thanks for listening...God bless, stay safe, warm and...

  Our Lewy Body Dementia and Parkinson disease journey....october 19th I was given this book by our neurologist. Might be a good one....I am to fill out and work it...

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...

  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...

  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...

  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...