therustycupboard

  I guess I need to just count my blessings when I can get 3-4 days of somewhat normal life....today I am discouraged. Been a hard day.....hubby slept good last night I didn't...I had a lot of things to think about and was trying to figure out some answers.....didn't work ...no real answers anyway......... Today hubby has been having anger problems.....youngest son Jeremy was here today visiting. We were all setting and talking when hubby starts turning purple and then begins to cry....and cry and then yell....he was mad that no one listened to him....we ask what are you talking about and he says he can't remember but it was a while ago....then he gets mouthy and mad. Son Jeremy says "dad just relax and tell us what you want to say".....he says nothing and relaxes. So son and I start talking again ...we are still in the same room....when it begins all over again....cry, yelling and anger....son says "dad stop and tell us what you need or want".....th

We are so happy to report that things are going pretty good for us. Nothing new or different has been going on. Hubby mowed the lawn today...he forgets some, when mowing he misses a lot and I help him out...but nothing crazy....we are just getting things ready for Easter and plan on enjoying the holiday....daughter was home for the weekend and she got hubby to tell her stories about his semi truck driving time and hubby did pretty good. Daughter is taking these posts and making them into a book for the grandkids to have when they get a little older to remember our journey....hubby thought that was pretty cool. Thank you for all your prayers we feel them daily. God bless and thank you for being with us in our journey.

  Daughter came home with her two boys...she is such a help. We are working on some things to make life easier plus she is helping with important paperwork. I have found that I need lists.....lots of lists.....I don't know how most of you handled this but from what I read...lists are good. 1. list is for hubby's books....I found I have to have only one book out....I write the name of that book on the list and keep it to show hubby what book he is in....to many books and he reads a page or two in several and thinks he has read all of them. 2. bathing....he thinks he has taken a bath an hour ago. When you say time to take a bath....we have issues. 3. changing clothes....when he takes a bath I sneak in and take his dirty clothes and leave his clean clothes....he can't tell the difference for some reason. 4. where things go........mercy....this drives me crazy.....I find things everywhere......and somethings I am still looking for. 5. learning to just go along.........when

  Jesus offers us living water through His Word..... and His Spirit.... it is up to us to go to the well ......and drink of the water. ....a old saying goes that you can lead a horse to water,..... but you cannot force it to drink........ The same is true for a person’s spiritual walk..... even with others encouragement,..... it is still up to the one who thirsts to drink from what God offers...... As believers, we must continue to remain in relationship with God through prayer...., Scripture...., worship..... service,.... and fellowship with other Christians.....if we don't ...no matter how old you are in the ways of the Lord...you will become dehydrated spiritually......you will feel weak...down....unhappy....almost depressed.......so rise up people...feast at the table ....read God's word....drink of the spirit....go to church ...find someone to pray with....time is getting short and we need all the workers we can get out there...we need each of you strong and ready for fi

 Today is a beautiful sunny Spring day...sky is blue weather is great....hubby decides he is restless but his muscles and back are hurting.....so he wants to go for a walk.  He decides he doesn't want to take old blue his walker so I take a walking stick. We are off arm in arm walking.... me with a walking stick....we have three cars at the round a bout stopping and waving at us.  Friendly people out today. As we walk hubby says "what are you going to do if my legs give out and I fall and can't get up.  I say "well I guess I will have to reach down and carry you"....we laugh...and say "well when one falls down the other will be there to pick them back up...we talk about memories we have made.  Hubby talks about his days being numbered....he knows his disease is there....we talk about things we will be facing....and we agree to make as many memories as we can as the summer goes on.  To us it doesn't have to be expensive trips....expensive traveling....it&

 Today I did something real stupid.....son Jeremy came up and we were moving vehicles around in the driveway so I can move our vintage camper out...Son was moving his PT cruiser so hubby asked if he could move the pickup.   It had to be moved for Jeremy to get out.  To move hubby had to back out into the street and into the neighbor's driveway. Which he has done millions of times. He backed up ok and then decided to pull up along the highway and that's when he hit the round a bout sign and kept going.  The sign is fine no damage but it scrapped all down the side of the pickup and left it's mark. I told him to let me drive and that was when I noticed hubby wasn't doing good.  He was upset because he can't drive any more but had been told by 3 doctors not to drive but for some reason today it came home to him to realize it.   He got so depressed and thought it was all my fault.....he has driven for 35 years semi-trucks all over the United States. and now realized he c

  I had a couple of you ask what happens when hubby has a bad night....I will try to explain but I am no authority or had any training...I am just a wife trying to figure all of this out...but if this helps I will let you know what it is like at our house....dementia is different in everyone....so this is us....hubby has good days and bad days...his bad night usually go for about 2-3 days and nights and then he is back to being "good ole hubby"....but the bad nights he tends to have crazy dreams and in these dreams he is usually fighting someone or something....he actually fights the air punching, yelling, moaning, kicking....I can wake him up and get him up to walk around and a drink of water and go back to bed....he will have another dream....this will happen 3-4 times during the night....next day he is exhausted and doesn't want to do anything and then a repeat the next night....this happens like I said 2-3 nights in a row and then he will be brent for a few days...at

  OK, here's one you all can help me figure out how to handle. Hubby loves to read, so we go to thrift stores and he gets books; Saturday he got 5 books.  This is Monday and well he thinks he has already read all those books 3 times. I got the idea to write down every book as he reads it so we have a running list, but the problem is he doesn't remember what the book is about so I can't quiz him on them.  Then he thinks I forget to write the book down. So how do I convince him he hasn't read them?  To be honest, it drives me crazy.  I know he would like the books if he will give them a try again.  Somehow there is a way without making him feel bad.  Okay good ideas please.  Oh and yes we take the books to the street little libraries that are free and leave them for others. Hubby loves to give them away. Thanks and appreciate all of you!

This disease...it's hard. This has been a long hard week....the only good thing about it was getting to have the grandkids around a lot. They make my days. Hubby changes daily...sometimes he is just good Ole Brent, and I begin to think, "Wonderful it's all over and we are back to normal." Then out of nowhere....issues...lots of issues. I know it's not his fault, but sometimes I hate the changes it makes in our home.  I know I am wrong to feel that way but, mercy. Now don't think bad about him, he is not mean, just crazy things.  I am just being real and honest here. I want to fix this some way some how, but I got nothing. Our kids are such blessings. They are so strong in faith and stand for us in all ways....and always ready to listen when my heart breaks. Take care friends and I am praying for you all who have loved ones also facing this crazy way of life. T hank God he is always holding our hands. Night and God bless.

People are so silly.......seriously....the questions they ask......and the answer is....... YES!!! You definitely can be a Christian and still get diseases like dementia or Parkinson........and no it's not because you did something terribly wrong to get it......mercy.   The Bible says ......."Matthew 5:45 "He sends rain on the just and the unjust alike." We are all human with human bodies, but doesn't matter to me what people think.......because we can say "It is well with our souls"  I don't get offended. H ubby is out raking the yard today.....I try to keep him busy and his body moving......yes he forgets, wanders, gets upset, confused, thinks we did things like go to Walmart 3-4 times a day etc.....but we got this.  I just am more observant of him and always what he is doing......we plan on many many more years and just being more careful of each other. But I will say....if your loved one seems to talk a lot and it drives you crazy....count your

You know as you get older you think about what is best when you pass away...so you make plans...you purchase your burial plots, you check on tomb stones, you get your will together and you work on your "just in case" file with all your important documents and etc....you think "OK, I guess we are ready." NOT, far from it.  When one of you get sick there is so much more that comes your way. First, making sure all the insurance is in place for medical bills, then your end-of-life planning documents Decide between a Will or Trust:   Make a list of your assets:   Determine end of life housing plans Then you have to get everything in order so the government or state doesn't decide they want a portion. Whether to sell your home or etc. and whatever you do stay away from Medicaid!!  Read all the fine print as they will come back and get from your assets what they have paid for with interest, but never tell you.  Then comes along the living will, life supports, good grie

 We are on this journey and it seems to be a whole lot involved with it.  Decisions that a person must stop and face.  One is on my mind today and that is ......our home.  When we purchased this home 21 years ago we were thinking about living in it for about 5-8 years and then selling.  But it became home.  So we have stayed.   Now, that we are dealing this these diseases it's time to take another look at our home.  It is two levels, so stairs....and it also has a drop down extra living room with 3 steps down and on the other side a two step up to kitchen.  Now with hubby starting to have walking and standing issues...and dizzy problems.  Time to rethink.. Of course I think it's no problem for me...I got this but the laundry room is in the basement with two more bedrooms, family room and pantry.  So I go up and down these stairs all day long.  And I am getting older so decisions. Do we sell?.....do we stay put until things get real bad?  do we let the kids just take over?.....d

 

  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

  Ok friends...here's where I ask you for your help...you may see us out at the store or church...please understand we are in a stage...one that we have no control over...we may be walking kinda hunched over or parts of our body shaking... If you talk to hubby he will smile a goofy smile and laugh, but most of the time he only gets about half of what you are saying...he may not know your name but he will still know he knows you....its a stage he is in...please DO NOT get offended... Please don't think less of us....hubby has no control if he says something stupid to you...please tell me if you are offended and I will try to make it right....he isn't out to hurt your feelings....just remember he is in a declining stage....but he is doing good... Now sometimes he will be just fine...you think nothing is wrong...and then....Parkinson's is also taking a toll as his eyes twitch and his hands shake....but all is well...we got this ... We just don't want to hurt any of our

Some are asking how we are doing in our chapter....its hard to keep you updated on hubby...some of you are facing the same things we are. We are in the stage where if I tell hubby we are going to town to Winco for groceries, he believes we have already gone.  If he thinks it ...then it has already happened.  He will say "Why? We just got back. We don't need to go again."  I will say "No, we are going now, we haven't gone for days." This causes him to be a little agitated....not upset just confused.  This is a stage and is part of the disease that we have to deal with. If you are seeing this in your loved one, then we are in this together.  So many different emotions. Little by little hubby is changing....little by little life is getting different.... Some things he just doesn't understand, but we pray together and we trust together.  Our kids are great supporters....we will just keep going on.  Today he has been having pain in his leg below where the he

  So thankful for .... our kids they know all the latest technical items to get for times like this.....hubby has a new watch....  Easier for him to read, has a GPS and he can make calls easier........just perfect..., new upper locks on doors for times of wandering. Will be new security bars placed in bathroom for in case of falls.... all thanks to son Jon...... daughter Val purchased us locks for the freezer for the times someone goes looking for something and leaves food out on the counter to defrost and no one knows it's there. Hubby will also be sporting a new ID bracelet.... with all the info on it........thanks Valerie........gotta love all the gadgets..........yes he will be all decked out.......gotta keep this man safe and healthy.... thanking God every day for the extra time we have.......making memories.......

  Some have asked and I do thank the Lord for all the years of me searching for answers...but not finding them........I knew things were wrong....I knew they were not finding the answers. But now I believe the Lord just had them hid from me for a reason......because we went through a lot of stages and did not even know we were.....so a lot of the beginning stages of these diseases we already passed through...sometimes it is best not to know........now we know and I believe it is the right timing...... Now we can prepare and we know what we are facing.....this is our journey and I believe the Lord has each one of our steps ordered....yes it gets hard...but when is life not hard.........yes we shed tears at times.......but then we remember we are still here.......breathing......we still have each other. We remember nothing is to hard for God....neither of our lives have been easy and we made it this far....we got this......just have to take walks and breathe and say a prayer once in a wh

We have good days we have bad days....have to say bad days are not fun... Today has been a good day...we even got some rest during the day.....we are no meds here, so nothing for mood changes....but having fun with Grandkids and just doing......was pretty drained but I am up and going.  Getting projects done and trying to keep hubby walking in the evenings....good news is he is eating good and gained a little weight...been filling out paperwork for the next step which is later this month of February we go back to Kootenai for the drug induced lupus....which may or may not be an issue.... But our chapter is on its way and we are handling it so far.......you all may not realize how much we covet your prayers....believe me they all make a difference....we can hold each other up in our prayers. Please remember we are praying each day for you also...everyone has their own burden to bare...but we got this...the Lord promises not to give us more than we can bear. A

One more question and then I am done for a while......but hubby and I have always been honest on here and with our friends.   Y es, we were given a time line, but I told the doctor that ...that is ok.....then I went back to daughters and cried. The Lord brought me to the Red sea and then I knew things will be OK. Not completely healed or settled but just ok.  Do you know about the Red Sea?  When God brought the children of Israel to the Red Sea, they had to wait there all day and all night before God parted the sea to let them walk across on dry land.  We were told from the day of diagnoses that life expectancy is 2-5 years, but we do the happy dance because "whose report are you going to believe....I believe the report of the Lord."  I felt like God was telling me that even though I was at the Red Sea and couldn't see a way out, up or over it, He would bring me through it. We were also told it could be up to 10 years. I told the doctor that is OK, we will be in our 80

  This disease......it's hard....this has been a long hard week....the only good thing about it was getting to have the grandkids around a lot...they make my days..... Hubby changes daily...sometimes he is just good Ole Brent...and I begin to think ...wonderful it's all over and we are back to normal....and then out of nowhere....issues...lots of issues..... I know it's not his fault....but sometimes I hate the changes it makes in our home...I know I am wrong to feel that way but....mercy....now don't think bad about him he is not mean...just crazy things...I am just being real and honest here.... I want to fix this some way, some how but....nothing....our kids are such blessings they are so strong in faith and stand for us in all ways....and always ready to listen when my heart breaks. Take care friends and I am praying for you all who have loved ones also facing this crazy way of life. Thank God he is always holding our hands. Nite and God bless.

Thank you all for your prayers this last week.....you can really tell the difference when people are praying. Life has been good this week....hubby has been real, real tired but has been in the moment....his body is drained, but his spirits are great.....this week the confusion has not been as bad....we have had fun just doing goofy things but being able to do them. So I will count my blessings when I get them......hubby is still not on any meds other than his blood pressure.... We hope to stay this way as long as possible,  but with Lewy Body Dementia ...issues will come and go as the journey goes on....so taking this last week as a blessing....... Again we thank each one of you...don't ever think your prayers don't matter ...they tremulously do.....and the one you are praying for can definitely feel the difference. God bless and enjoy your day.......We couldn't do this journey without all your help...

  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

Now for the funny side of things....hubby comes in and says we have a real big problem....I'm thinking oh boy what now.... He says real serious...in all my life this has never happened....he is standing there holding a roll of toilet paper...so serious he says ...this roll is to big...I say what ....he looks like he is going to cry... Yep he says it's to big for the toilet paper holder....all I could do is laugh....he says now what do I do...... Life at the Hoyt house is never boring!!!

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")

 Today we got up early and wanted to get out side and enjoy the day the sun is shining and it's 44 degrees.   We got to work on a couple projects and hubby was having a good day...with dementia it is a roller coaster....but this week has been good. So we were each working away and I would say to hubby "could you do this" or later I would say "Brent I need this" and just was focused on working.  When I noticed hubby was just standing there ....he comes over and says "what am I supposed to do"..."Where do I go"....then I realized I had been barking out things for him to do....as caregivers we forget that without them having casts, or bandages or bleeding we forget there is a problem......we forget that they can't focus or remember.... Made me feel bad and I apologized....I slowed down and spoke slower....I gave only 1-2 tasks to do  and explained them as we went...I have to remember to be more careful....we decided that maybe I should wrap

 Late in the year of 2023 my hubby started loosing a lot of weight for no reason just not hungry.  Once in a while he complained that his stomach was hurting.  So we scheduled doctor appointments ....doctors checked him out, ran blood work, scans, MRI's, etc....and every test came back nothing was wrong.  He was fine.  So we would leave and I would notice things...something just wasn't right.  Also, son kept noticing that his Dad's hand would shake sometimes....then his eye began to twitch....so I took him to the eye doctor and he was fine.  Again more MRI's and nothing wrong.  The eye kept twitching and the hand kept shaking. Our primary doctor said "Well, we can send him through a bunch of tests, but the out come will be the same".  Nothing we can do.  I wanted answers. So, a few months later in about November hubby almost collapsed at Walmart while walking.  He was sick.  I brought him home and he went into the bathroom and immediately came out and said &qu