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...

  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...

 

  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...

  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....

  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....

  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....

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.

  Things were going where hubby just wanted to stay in bed for four days and nights. Pastor Phil came and prayed for him and he got up took garbage out and the next day he was up took a shower and was alert. This was good for a couple days. Then he has taken back to the bed. Today I went into the bedroom at 10:30 am and said "Brent you have to get up...he says "No I am going to rest". I said "no the doctor says you have to keep moving...so you have to get up and move around and keep your muscles working". It was hard but he got up took a shower and I have to sneak it to get the dirty clothes so he doesn't put them back on instead of the clean ones he takes into the bathroom...so we got him in clean clothes and then the battle of him brushing his teeth...he says "I did early this morning...no I say you were not up....so finally I convinced him he had to brush his teeth.......finally got him into a chair...but not moving.......this is so hard...he j...

  Our Lewy Body Journey....today I have been sad....I lost a couple friends on Facebook due to me going through this journey and them not wanting to know about it.....yes I understand...Facebook should always be happy, fake, nonsense...but sorry that is not me....I am what I am....and if you feel you need to delete me...I understand...it makes me sad but I have to be real....and right now this is my life our chapter...our journey....I have tried to study and do all the research I can on the topic....and I still don't understand how one day things are normal and the next day ...you can wake up and the confusion goes on all day.....what changes your diet, your sleep, your attitude, not feeling well.....so far no answers....so on these days we just lay low and try to keep things calm and natural...and I will keep trying to find the answers I need....God bless all you family and friends who have stayed with us on this journey...praying for us and being there for us....I will try to be ...

  Many of you have been asking ...what were the answers....I will be honest with you, but if you have negative things to say please just move on and don't leave them. Our family has been guessing on a couple problems we thought was wrong with hubby.....but of course it was guesses. We met with the best neurologist ever....very sweet, very knowledgeable, treated us with respect and was so good to hubby.  We were told hubby has Lewy body dementia and Parkinson disease.......he has both.....to medicate one makes the other one go crazy. Plus hubby's surgery for his hernia caused them both to decline. We were given 3 options.....one surgery on his brain to try to slow the process, 2 injections in his eyes and 3 certain types of meds. Now don't go crazy, but we opted out of all of the above.....his prognosis is already declining......so why do something to make it worse when trying to make it better so we are waiting for 4 months when we will return to the neurologist and decide...

  You know when a disease or illness comes your way....you are really encouraged to join groups...people who are going through the same issues as you....then you are told you will have to eventually fit the mold....you are no longer called wife...you are now caregiver...you are told the best things to do is learn to lie, lie, lie...it will keep your hubby from getting more confused...you are told certain words not to use such as "do you remember"..."stop don't do that" etc.......I struggle....I guess they know what they are doing but....hubby and I are different...when there is an issue ..we talk and then we pray....it's different when you both know the Lord...even in issues hubby will eventually turn back to what the Bible says........so I will watch the videos, take the lessons on being a caregiver....etc...but in the long run....we will find what works for us...and for us....we believe the hand of the Lord is in this and will help take us through...yes, w...

Today in our journey....we always split the housework and home chores ever since we retired...worked out great for us. Today was hubbies turn to make oatmeal for breakfast....he goes into the kitchen and stands for about 10 minutes....comes out and says "I can't. I ask "why?" He says, "I don't remember how to do it." I didn't get upset. I just said "Well OK then, let's do it together"... You know sometimes we grumble and complain over the stupidest things...and yes I am a major one and then we see ones who can't remember. Brings me to my knees. Lord have mercy on me. To see and be thankful for the smallest of things, just saying.

  Another day another problem solved....Hubby has a problem with dizziness...it comes and goes pretty bad....so he doesn't like to walk much...so today I take him to walk Walmart and it is only about 15 minutes and he wants to go to the car...so I say ok let's walk a thrift store ...easy in easy out.... we get there and he gets real dizzy....I turn around and there sets this ...I don't' know what it is called...but hubby set down in it....and we bought it....hubby calls it his "new vehicle" and he loves it....so now instead of going home we are going for a walk at Hells gate and a picnic....hey....we got to do what we got to do....and yes we called the neurologist and she says it's just part of the package we are facing....well we are dealing with it this way...have a great day all...it's beautiful out there....(oh we named it "old blue")