thank you. sometimes it helps just to know we are not alone.

For anyone worrying about lights being left on, I wouldn't worry that much about it. I think we are so engrained about turning off lights to save electricity that we automatically get irritated if they are left on.

What helps is having light nights all over the house so that we don't need a regular lamp on to see our way going room to room. Plus I have some low wattage timer lights that come on automatically when it gets dusk and go off automatically depending on how many hours I have the control set, 1 hour up to 12 hours. Even when we are away from the house at night, the house always looks occupied :)

I run into this light issue on a regular basis with my sig other, who doesn't have any memory issues, he's just an absence minded professor type of guy. I go to work before he does, but I get home earlier, every now and then I will find the front door unlocked, and couple times the door to freezer on the refrigerator wide opened :P

I have a few of the same problems. The Depends issue is happening here. So what do you do to get the Depends hater to wear them.

I am entering into this arena also - and in the bowel category have been there a few years with my 84 year old mother. Everything has been a battle and true test of patience - the cane, depends, rollater. I think that compassion and true awareness of how scarey it must be for them to forget and know they are at times losing everything they are. They don't want to be where they are. My mother's pride and stubborn streak which previously was healthy pride and tenacity no longer serves her well and can even be detrimental to her well being. I believe the solution is that you need to get more you time and strengthen your resolve by resting your nerves by getting your balance back of caretaking and you time. My mom sleeps till noon but I use that for me time or doing things I need to do. It's like the nap time that frees you up. If you want to have no regrets later - try to change your expectations - lower the bar - like you would for a child approach Charlie with an uplifting attitude and celebrate just time with him as he is now - augment the part of him that is still here. Later you will be glad you did.

I can certainly identify with the problems with sweets, gravy and such. Do you ever notice the behavior becomes aggressive when eating sweets? I sure have, don't have them around much any more. Also, be aware that coconut oil is also a major culprit for causing bowel problems! I never tried it with mom solely for that reason. Another food we have added to the do not serve list is peanut butter. OMG! And mom really hates that, especially when she has a banana.

jeannegibbs, thanks for sharing your insight and experience. My husband sees his neurologist in January and I will discuss this with her. It certainly sounds plausible.

marystidham, the remarkable improvement may be from the Namenda, or the coconut oil, or good care in general, or because swelling went down in his brain. My husband had a pretty remarkable improvement within the first year he was diagnosed with Lewy Body Dementia. He was taking drugs. He was getting good care. He was getting exercise and good nutrition. He was not taking coconut oil.

His behavioral neurologist was an internationally respected researcher and expert on Lewy Body Dementia. He had no explanation at first but a few later he said there were some theories that in SOME cases the brain tries to fight off the protein deposits that it sees as invading foreign bodies, resulting in inflammation of the brain. This exacerbates the dementia symptoms and adds some of its own. When that condition gradually subsides, the person may go from severe symptoms to the more expected early stage symptoms. As far as I know, this is still just a theory, but it sure fit my husband's progress to a T!

It would be interesting to hear whether your husband's new doctor has ever heard this theory and what he/she thinks of it.

My husband was diagnosed with moderate to severe dementia and Parkinsons or Lewey Bodies about a year ago. He needed help bathing, and dressing and slept about 14 hrs/day between bed and his recliner. About 4 months ago he began taking Namenda a new medication for memory. I also began giving him 2 tablespoons of Coconut Oil in his oatmeal because I read where the brains of dementia patients can absorb it as fuel better than other oils or fats. He now sleeps only 10 hrs a day, can bathe and dress himself, reads books again and can change the channels on tv. He doesn't stoop anymore when he walks and engages in conversations. His psychiatrist last week said he's never seen anyone in his condition improve like he's doing. It may be worth a try for others. We also got his sleep apnea machine working right so he sleeps better. We switched doctors about 18 months ago and the new doctors have taken him off about 6 meds he'd been taking for several years. Sometimes it pays to get a new opinion. I think the Namenda XR has made the biggest improvement. He tells me he can remember things that he'd forgotten and his mood is so much better.

Definitely maddening! I hear you loud and clear. Been there, done that, returned the t-shirt for a larger size.

But really, the story about the recycling schedule will be a very funny story to tell your grandchildren some day. You might as well laugh now. (Would it help if you went through his calendar and marked the real recycle schedule on it?)

My husband, Coy, started out with pads he could wear in his regular undies. He much preferred this to risking an accident. When it was time to move into pull ups he didn't resist. Can you appeal to Charlie's sense of dignity? "Dang! Your body sure can let you down sometimes. Not your fault! But since your body is going to be a traitor once in a while, how about outsmarting it and wearing some protection, just in case?"

Celebrate the fact that Charlie doesn't need your watchful eye on him all the time. You are soooo lucky that he can get himself to bed if he stays up later than you. That was simply not possible at any point in Coy's dementia journey. I'd gladly have put up with the lights left on if he was able to stay up by himself. If he was up, I was up. It didn't bother me if Coy wanted to/needed to sleep until noon unless there was something scheduled. Sleeping late interfered with his attending an adult day program, but I finally did the sensible thing and scheduled him to arrive later in the morning.

Dealing with dementia is maddening! No question about it. But somehow most of us don't go mad (or any madder than we were when we started). Thanks for sharing your experiences.

Marlis.. I feel your pain my husband has Parkinson's and dementia comes with it. I have to bathe, shave, and dress him about the only thing he can do well is eat...
I am getting burned out ...I was not meant to be a parent again at my age. I am looking into getting some help in as it is wearing me down...maybe then I could run errands while they are here. Well hang in there ..hope you and your family have wonderful holidays.... Laney

You will have to 'BE' the other missing half of his mind.

Its not about reality its about keeping the peace. Try to separate the person from the dementia. Taking control of the mishaps while letting him do his Jobs. Learning your new role as caregiver is huge. He does not have the mind to retain day to day info.
Each question he asks over and over again for him is like he is asking for the first time. Info you give him is as if he is reading it for the first time and he forgets 10 minutes later. His mind retains old info.only..except this and you will understand. Help him by helping your-self as taking over his jobs and letting him think for that breif second he did it right. You will never win an argument because his mind can not retain current info and sort it out to be new info. There really is no new info.for him to store. You will have to do for him as his missing half of his mind....

Putting the trash out every other week is the 2nd and 4th wed of the month to him.
You will just have to let him help in his own way and after he does his important job , you take the recyclables into a bag and put out when the correct time is.

Boost and other as such will give bowel attacks, you will have to try to subsatute for other things that will avoid this problem.

Swishing his teeth, buy act mouth wash and enamelon and have him swish and rinse after each juice,coffee,wine he drinks.

Staying up late, you will just have to turn off the lights your self, leave fewer on when you go to bed and except the fact that some will be left on when you get up in the morning.
Charlie can not learn to do all of these thing again. He can only do what his mind
allows. You do have the ability to change and control and take on new tasks to provide peace and health for him and your-self. Arguing with a dementia person does not work, pick your important battles. Making small life style changes such as these will prevent hassles.
A child can not cross the street alone. You have to hold their hand and cross the street with them. Same thing here. You have to adjust the things you do to compensate for his lack of judgement..
I am still learning these things. I am soul caregiver for my 94yr.old Mother with Dementia. It has been an up hill battle with 3 years of difficult frustrating tearful struggles. Now that I am learning just what to do to create peace in our home, I find it very helpful and validating for her. I am grateful to be able to be here for her at this stage of her life. Each morning I don't know what she will do or say or what kind of day I we will have but we will face it together while I still have my right mind,I do get very tired. My last words are , please don't give up, just try to make adjustments your-self because Charlie can't and always,always' Remember the Love'....