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...

 I am feeling pretty low.  I got hubby to walk a mile this morning and now all afternoon he has been in bed.  I hurts all over.  I feel terrible. He is sleeping so will let him sleep but I feel so guilty.

  Hurray!!!!! I got hubby up and ready to go by 7:30 am. We started off on our walk. Hubby with rollator and pushing it. He starts out real good. But starts slowing down. My phone goes off and says half mile completed and he says "lets go home". So we turn and start back hubby is sliding his feet now but still walking, then he begins to fall. He hangs onto the rollator and I grab his arm and we get him back and settled. Now according to our doctors it is not considered a fall unless he hits the ground. We will take this as a stumble. But he is dragging his feet. I say "do you want me to push you the rest of the way" He says "no". So I say "well, then pick up your feet before you stumble again". Now he is walking like a tin soldier. Marching it off which lasted a few steps. He is walking slower and dragging his feet.... But all in all he made it back home. He walked 1.12 miles 2753 steps and took 25 minutes....not bad for someone who wants to just...

  Today hubby stayed with son and grandkids as it was sons day off. So he went with the kids to swimming lessons and then son brought him back home. I was gone 3.5 hours painting a contracted house. When I got home hubby has been real confused. Walking from room to room looking for that thing. What thing, I ask? He has no idea. But he looks and gets upset because he can't find it. So I go get the remote and tell him it needs new batteries....it didn't but maybe that is what is bothering him. Guess it worked. Mercy ..always a guessing game. but the good news the remote has new batteries. Tomorrow I will be taking him...he gets to confused for me to leave him.

  I think I have found a small job that hubby likes and keeps him busy. We have underground sprinklers but some areas my flowers are not getting enough water. So I have hubby resting out back on the patio doing word search and I tell him every 10 minutes change the water from the sprinkler to a different flower. Seems to be working...flowers getting watered and hubby seems happy...a win win for me.

  Well I went for my walk...came home got hubby up and wanted to go get groceries from WinCo before time for grandkids swimming lessons. We get to WinCo all happy and having a nice time...filled the cart and got up to pay. I put all the groceries on the ramp and a lady in front of me asked me a question. So I stopped and talked to her...when I turned around hubby and the empty cart are gone. But it's our turn for the cashier. I see through the people hubby leaving the store...all smiling with a empty cart. I turn to the lady behind me and I said "My hubby has dementia he is leaving the store I have to go"...she puffs out ..... "welllllllll" like she was really irritated....I tell the cashier I have to run get him...cashier says" that's fine, go"....the lady behind me is so irritated and complains to the cashier...as I go running between people to get Brent. When I get to him outside...he is real confused....but he can't run due to Parkinso...

  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

  Emotional Divorce....I was asked if I feel like I am in an emotional divorce. Well for one I hate the word divorce. But I had to stop and think about this. Yes, things are really different now. Hubby is like a roommate who doesn't talk except to grand kids where he grunts mostly or to visitors. Son took him out yesterday and said dad was pretty good and talked to him. But to me...mostly just sets no conversation....or he can't hear or comprehend the words I say. But then there are days that it is better. Mostly he does just set and I do other things and entertain myself. Never even thought of it as a divorce. Yes...I get upset sometimes but I am fortunate to have grown kids I turn to. They help...understand and care about both of us. But as far as an emotional divorce or any other word about it....not in this home. We are together until death do us part....I am not trying to be a saint or anything ...we just took our vows seriously and our kids love us both an...

  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...

  Our journey home was pretty pleasant. Just beautiful out but hot. We stopped 4-5 times to let hubby get something cold to drink and move around for his legs. He didn't say much of anything until we got outside of Winchester. Hubby are you taking us home. I said "yes". He says, "well it should be almost dark when we get there". This was at 2 this afternoon. I said, "no we are just a few miles from home." He says "we have to go up the river yet" ...I said "no we are going up Webb road to Tammany then to the house"..He sets up in his seat and says "no, I want to go home to Weippe"...I said 'what we live in Lewiston we left Weippe in 1984"...He says "take me home"....finally I say "ok, I will take you home to Weippe in a couple weeks but right now I am tired and we are going up Webb road to tammany to a house to shower and rest...He says "ok, then take me home to Weippe"...ok hubby wi...

Been a crazy weekend...we left Lewiston at 6:30 pm and made it to Nampa at 1 in the morning. Went to see the neurologist on Friday and she was very helpful. Hubby has gained weight and is doing pretty good. She wants me to get everything out of his name and prepare for the future. So kids and I will finish all the legal stuff and get things all set up for future. But no one knows really what the future holds....the old song goes "I don't know about tomorrow I just live from day to day" such a good song. All the way down I listened to Joel Osteen on book on tape reading about his book "Break Out"...I got so much from listening to him. So actually, I am good this time...nothing hit me hard. So the rest of the time down here we have just been having fun, ran to daughter's neighborhood yard sales...was so fun. Shopping, out to dinner, playing with grandkids, changing daughters' shades and drapes and just a nice time. I was super tired the first day but ...

  Been a crazy weekend...we left Lewiston at 6:30 pm and made it to Nampa at 1 in the morning. Went to see the neurologist on Friday and she was very helpful. Hubby has gained weight and is doing pretty good. She wants me to get everything out of his name and prepare for the future. So kids and I will finish all the legal stuff and get things all set up for future. But no one knows really what the future holds....the old song goes "I don't know about tomorrow I just live from day to day" such a good song. All the way down I listened to Joel Osteen on book on tape reading about his book "Break Out"...I got so much from listening to him. So actually I am good this time...nothing hit me hard. So the rest of the time down here we have just been having fun, ran to daughter's neighborhood yard sales...was so fun. Shopping, out to dinner, playing with grandkids, changing daughters shades and drapes and just a nice time. I was super tired the first day but thi...

  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....

  Not much to report....just the usual. Night acting out dreams. Day very confused. Very confused. His feelings get hurt real easy over silly things. He gets angry and cries. I went outside and told him to set on the patio while I went into the shed to get something to sell. I came out he was gone. He had got into a panic and started around the house looking for me...I couldn't find him so I go around the house looking for him...so around and around we go not seeing each other. Finally, I see him through the living room window on the opposite side of the house. He was in a major panic that I was gone. I am becoming more and more his nurse. Waiting on him and supplying him everything. He never gets hungry but will eat if I put it before him. So, I have to remind myself to fix him lunch. I don't eat lunch so it's easy to forget. No conversations. He hates his earring aid that I got to work again. Just life..grandkids all help out so much. Even the 5-year-old helps....

Now what I am going to say is for our valley and for us. Do your own homework for your area and spouse. I have done my homework...visited several places and in this valley...no one wants to deal with Lewy Body Dementia. It's like a plague. When you ask they say "nope"...we can't handle that here. It's not their fault...this disease takes special people and 24/7 care....I get it. I have ones from the valley who specialize in this disease call me and talk ...ones from Boise call and talk with me. And, it comes down to "stay in place"....so for now we are being told the best for hubby is to "stay in place" and have ones come to us. It's cheaper and he is safe here. But ones can come into the home to help. This I will be checking more into to see where that goes. Thank you to the ones who have recommended homes outside of the valley but kids and grandkids want grandpa close. So that is what we will do. Actually, we are fine...I get o...

  Actually, we have been doing good. Hubby has been really mellow. Not wanting to go anywhere but is back to reading a little and doing some word searches. He loves to watch the grandkids play and they also go get him to make sure he watches. I see him changing daily. And, not for the good. So hard to watch as your hubby slowly .....Hard for me to even say it. But I am blessed he is still here for now. And, I have learned a lot about these diseases...in fact sometimes I think I know to much as I see him change, I know why and maybe it would be easier just to check it off as old age and not know what is really happening. The last couple days he has been trying to help...he gets really tired really easy...always saying "I am so exhausted"....and then goes to bed. But we have been trying to clear out anything that could cause a fall. All small stands and dressers are leaving, baskets on floor etc. Lots of things are going to our son Jeremy's house as he is in real need ...