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  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")