therustycupboard

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...

  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...

  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....

  Been having to rethink some of my ideas and change a few things I wanted to do in the future....ONE .... yes, it is a good idea for one level ........but not for hubby finding his way around in a new environment...especially with him already getting lost a few times when at another place....so maybe have to rethink how he moves around in our current home....instead of moving him....TWO....sons and son in law (Jon, Jeremy and Nathan)....are telling me to slow down....so thankful for each of them...they keep me calm and in my place.....all of them are there for me and I love them all so much...even grandson set and told me yesterday....grandma slow down and think this through....we can make this work...thank you Brayden...hubby fell the other day trying to get up two steps to the kitchen and cut his arm....but I think I could use child gates and block that way of him going....also removing all tools and extra gas etc out of all backyard sheds....going to child proof all of them for...

  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....

  It's so hard. I know that by now I should be able to handle the emotions of this disease. But it's so hard. We were sound asleep, and I hear these yelling crazy words...then he begins crying saying "please stop". I lay and ask the Lord please help him. It gets quiet and I think it's over then he gets up and walks through the house. I lay and pray, and he goes back to bed. He is asleep now and I am stressed. I am a girl who believes in prayer. But still hubby suffers. I know God can heal but still hubby suffers. I walk the floor asking the Lord already to help us...I know some of you have gone through worse and I am trying not to complain. It's just that it's so hard to watch your hubby change...daily. And you have to just sit and watch. Yes, he lost his temper today. He just yelled at me was all. And yes he was sorry after. I am a hard person to live with I know. But after 51 years you would think we got this. All is quiet here now so I guess I...

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.

  It's so crazy how our lives change...for 40+ years this time of year I am working on my vintage campers. I love getting it all dressed up and ready for the camping trips of the year. This year life has changed so much that I just look at things and walk on by. I would always think of a theme and then shop for items and work the insides of the camper over for that theme. Hubby has changed and I guess I have changed. For the good I am not sure. But I look at so many things with a different eye, now. Even plans for the backyard have changed. Maybe closer to Spring I will get my mojo back but for now. No interest....I do more wondering around in circles than getting things done. Well have a great day and try to smile and make someone else's day...God bless...

  We had a great Thanksgiving....was just hubby and I, son and his two kids.... a quiet nice dinner...then our other son and his family of 5 came over and we had desserts and played a card game. was a lot of fun.... new game and just relaxing...Hubby did not play just watched us all. Today hubby has been really tired and has a stiff neck and some pain. So, he was up for a little while and then went off to bed......he has been spending about half the day in bed lately. I have the grandkids today as son is working so we will play, eat and just watch TV. Both grandkids have head colds, so I am doctoring them and just relaxing. Been pretty tired today. ..hubby has been talking more about his diseases. We both know that time is limited but we are just going to keep on keeping on. Trying to count our blessings and enjoy each day we have. God bless and thanks again for following our journey.

  We have the best kids....we are just home and son Jon calls and says we are coming with a surprise for you.....and I guess a puppy and said "Jon ...dad says no more dogs".....but Jon and Sue walk in with this brand new brown recliner lifter chair from the furniture store in Clarkston for Dad....it reclines but also raises up for easy getting out of it....such a blessing as hubby is having issues today with his legs and back being stiff.....makes us want to cry we are so blessed....

  .... 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...

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 ...