therustycupboard

  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...

  .... we have been working hard on a small house...manual labor of siding..roof..windows..paint..shutters...today was a long day...we worked hard. But it took a toll on hubby...I keep pushing. But time to back off....he physically and mentally can't do it any more.... he is done.... even to hard for him to go and watch.....makes me sad...tomorrow is our last day. The house will be.done.....but hubby will also be done. No more projects....life...sometimes hurt...Nite all...

  Before I leave for work I wanted to let you all know the funny side of this disease...they warned me that hubby will start to collect things....and to watch what he collects some could harm him....well my hubby ...has now put 16 bottles of shampoo and creme rinse in the bath/shower...3 around the toilet and 4 on the counter by the sink....I ask him why....he says..."he has no idea"...I say where did you find all of these ...he says "no idea"............I have purchased them with coupons and put into the pantry...and yes I know they have expiration dates ...I am on top of this.....and now he has to have every door in the house closed....EVERY DOOR....this drives me crazy...and he has no idea why.......but he closes them and I open them....we are a mess here...........dishes are everywhere in the house as I still try to let him put the clean dishes away.....always a hunt....but we are doing good....enjoying a few good laughs....have a great day everyone and love on ...

  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...

 

  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...

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.