<p>Cardinal, it’s possible. Alzheimer’s runs in the family, but he has seen several doctors including a neurologist and they all agree that it is Lewy Body Dementia.</p>
<p>Thanks for correcting me. I didn’t know it, but checking around I see that hallucinations are a common feature of Lewy body dementia, so common they are almost diagnostic for the condition. Sorry for my ignorance.</p>
<p>No problem. We didn’t know much about it at first; I don’t think it is too common.</p>
<p>What I also read about Lewy body dementia and hallucinations is that Lewy body dementia waxes and wanes, so that your grandfather might be worse one week and better the next-- though, sadly, the general trend is going to be toward worsening symptoms over time. And the sites I read suggested that caregivers not try to convince the person that they are hallucinating. A calm atmosphere, especially at night, will help the person. Arguing with them is not such a good strategy, according to what I read.</p>
<p>What do your parents say about how the doctor says to handle your grandfather? Has the doctor recommended a move to a care facility?</p>
<p>We do try not to argue with him; in fact, he often says, “I know you think I’m crazy” or “I know you think this is one of my ‘moments’” (his term also.) The neurologist has also said he will get worse over time, and (as I said) we have various forms of dementia and Alzheimer’s in the family, so we’ve seen the progression. But it is still difficult to see how different he has become and how much the disease affects him. My parents especially are constantly reading blogs, sites, etc. about Lewy Body. But like I said, it is difficult and often comes from a place of wanting him to understand rather than arguing with him. It is difficult to make that transition and realize that it is real to him and that he isn’t going to understand.</p>
<p>The neurologist suggested as much autonomy for as long as possible, and it seems like the doctors are hesitant to make any recommendations TBH. But it is frustrating for the rest of the family because they will ask grandpa questions and go with what he says (he says everything is fine), rather than believing us when we say that things are getting worse. And dad is still a little bit in denial; while I can’t imagine how difficult it is, he seems very hesitant to deal with this because he doesn’t want to make grandpa angry.</p>
<p>We did finally get him to take a test at the DMV and the DMV has issued a ruling that he can’t drive (it was the only way he would agree not to drive.) So that was a pretty major step and seems to have settled the issue for him; he has agreed to sell his truck and hasn’t really brought the matter up since, which is a big relief for everyone. We have started looking at facilities, but it is difficult since we really have no funds of our own to contribute and have to go through Medicare/Medical; and to get Medical to pay he has to be in a “memory care” facility which will work with the Lewy Body. And the number of facilities that meet both of those criteria are very limited. So it is turning into a bit of a difficult process.</p>
<p>I’m sorry that you’re seeing your grandfather slip away slowly before your eyes. Dementia is cruel.</p>
<p>Absolutely. It’s been particularly difficult for my older sister who has always been extremely attached to my grandfather (I have as well but she has moreso.) She has been in more of a caretaker role (which was pretty much impossible for me as I was away at school in Indiana until the last month or so.) She told my dad the other day that “I don’t even feel like he likes me anymore.” It does seem that way sometimes; like he thinks we’re just here to force meds on him and take his car away. Sometimes we all wonder how much he really knows who we are; he always recognizes my dad, but I think sometimes he just knows the rest of us are important and can’t really put the rest together. We are somewhat having to grieve him already even though physically he is still with us, and like you said it kind of comes and goes. Some hours (we’ve gone a long time without having an entire good day) are better than others and we try to cherish the good ones while we still have them.</p>
<p>I just finished a novel called “Still Alice,” about a 50-year-old Harvard professor who develops early-onset Alzheimer’s. A lot of it is told from her viewpoint. I thought the author did an excellent job of how she slowly lost pieces of herself. The descriptions of how it was hard for her to talk on the phone and keep up with any conversations hit close to home for me - I’m pretty sure my mom is showing signs of dementia, although my dad doesn’t see it. I used to talk to Mom every day, but now she never calls me, and when I call her, she’s really quiet. Her PCP gave her a memory test that she passed, but I’m trying to get her to see a neurologist.</p>
<p>That’s a new one on me. I’m sorry this is happening. </p>
<p>First, relieve yourself of the responsibility of trying to help him directly. This is a medical condition, and you won’t be able to talk him out of his hallucinations. But you could try entering into his reality. Ask him to describe what he’s seeing, hearing, knowing. Ask him what you can do. Don’t try to talk him out of feeling and experiencing what he’s feeling and experiencing; it’s very real to him. Validating him might calm him.</p>
<p>Is there any treatment for this condition? What do the doctors say? </p>
<p>What are your dad’s objections to skilled nursing? </p>
<p>ETA – Sorry, I didn’t see the more recent posts, so what I said was pretty much a repeat and questions were answered. Glad to hear he’s off the road. That’s a rough one but necessary sometimes. </p>
<p>It is hard to grieve a loved one before they’re gone. When personalities change, I have to tell myself, "That’s not Mom talking, it’s the disease talking. "</p>
<p>LasMa–dad just seems to think we’re not there yet, but he is getting there. He told me the other day, “The next time you come home grandpa will probably be in a home.” I think it is just a really hard decision for him. Understandably. And while he has all of us, I think what he would really like is help from his sister, but she has somewhat estranged herself from the rest of the family and hasn’t been much help.</p>
<p>When I talked to mom about it she said she feels there is a stigma around it for both of them; that we’re just “putting him in a home.” I explained to her it’s more about getting him the help he needs so that he (and everyone else) can be safe and that we can enjoy time with him as visitors instead of as round-the-clock caregivers.</p>
<p>There is treatment; mainly medication to try and slow it down, but the doctor has said he will get worse until he’s no longer with us. </p>
<p>I will try to explain the validating idea to my family and maybe we can see how that goes. What’s difficult is that he seems pretty self-depreciating about it most of the time as well (“I know you all think I’m crazy.”) None of us has ever told him that, but that’s what he has decided.</p>
<p>MaineLonghorn–it was a long process for us to get him to the correct diagnosis. Good luck to you and your mom. The quietness has been hard for us as well; grandpa used to dominate the conversation, but no one minded because he had so many wonderful stories; now, I think it is too hard for him to follow conversation, so he stays quiet. It is heartbreaking.</p>
<p>HG, has anyone ever checked all his meds? Is he taking them as prescribed? There can be issues when some combinations of drugs are taken together, or with timing, some foods, etc. Sometimes it’s the co-existing issues that mangle things. In theory the pharmacy should catch any first issues like combination problems, but all this is tricky with the elderly. I don’t know how much of checking the meds online, for info, you feel up to. </p>
<p>I say this in part because of my friend’s experience with her mom. I don’t now much about Lewy, but there’s some info about hallucinations here <a href=“You searched for node/hallucinations - Lewy Body Dementia Association”>You searched for node/hallucinations</a> - Lewy Body Dementia Association. </p>
<p>lookingforward, as far as we know he is taking them as prescribed. Here’s how it works right now: grandpa comes over almost every night for dinner. Dad (and I) take him home and take care of his patch (one of his meds) and give him the meds to take for the evening, then leave a small bottle labeled “after breakfast” for him to take in the morning. Otherwise, we keep all the meds at our house because we are concerned about that is well. We can’t be 100% sure, but that is the best we can do for now until we can get him into a nursing facility.</p>
<p>Thank you for the info 
I’m on my way to bed but will read it in the morning. I know my family has been pretty active on the Lewy Body association pages, but this is a little newer for me because I was away at school.</p>
<p>That’s smart that you guys are supervising his meds. Dementia and self-monitoring meds do not play well together, as we found with my dad.</p>
<p>It sounds like your family is moving toward the decision. It is hard for us adult children to watch this and we often do duck into denial, especially at first. The idea that our parents are failing, and that we can no longer help them, is a tough thing to accept. Be patient and supportive with your dad, and do a lot of listening and loving. Ask him what you can do to help him. It’ll mean the world to him.</p>
<p>We took our folks and some other family members on a 12 day trip to Rushmore and Yellowstone. It was clear how short term memory was VERY short to non-existent at times. I gave everyone a printed schedule so we could keep everyone aware of the planned activities. Mom had a hard time figuring out which room was hers and how to open the hotel room doors (we stayed at 4 different hotels). Figuring out how to dress warmly enough for the cooler weather without overheating was another challenge for them. </p>
<p>We were glad we did the trip, as mom hadn’t been to Yellowstone in over 60 years and only H and I had been to both places before (15 years ago). I can see that they will need more help for travel going forward and can’t just hop on a plane and expect everything will fall into place. </p>
<p>I made all the arrangements in February and had H and BIL drive two vehicles. H lead with me navigating via GPS and our maps. Driving rental cars at the high speeds and different vehicles that they are not used to seems in a strange area is something that needs considerable planning. </p>
<p>The retirement center my folks have added their names to the waiting list at is only about 1.5 miles from their home and has many of their friends already living there. It is walking distance of a great indoor mall and restaurants, as well as on the bus line and has a shuttle that will take residents around as well. There are varying levels of care available, from independent with a cafeteria & maid service to extensive help.</p>
<p>Sorry your family is going through this, HGFM. It’s important for your family to do their researching of faclities now, and possibly even get your GF on a waitlist. You’d like to have as much control over which facillity he enters, as opposed to having to place him in a facility just because they’re the only one with availability at the point he needs to be placed.</p>
<p>Good luck to the HGFM family. It is preferable to plan ahead as much as possible, but it is never easy. </p>
<p>HImom, sounds like you managed a successful trip, and you will always have those nice memories. The retirement center sounds very nice. I’m always a little jealous when someone’s parents make that move on their own. It makes the changes to come so much easier. </p>
<p>My D graduated last Thursday, had a great weekend of parties, and is beginning her first summer job later this morning. And of course my elderly mother has a dr. appointment, also this morning. The facility she lives at is transporting her there, and in truth their aide could stay with Mom during the appointment, but I’m feeling duty-bound since this is a check-up appointment. If D needs some last minute info at the job she can text me I guess.</p>
<p>It’s just a textbook example of being the sandwich generation, with the old woman in front of me and the young woman coming up behind me both needing some attention within the same morning. </p>
<p>HGFM, sorry for your family and your Grandpa. It is a long tough road to watch someone disappear over and over again. Alzheimer’s did it to my Grandma. Dementia is taking my Mom away, but not like Grandma did. All I can say is that you try to get through it since there isn’t a way to “FIX” it. </p>
<p>12dandelion, gak. And I stopped rushing up 400 miles to go to Mom’s checkups and had the aids go with her because she couldn’t report back what the Dr. said. The place didn’t really care because for them, nothing changed unless he gave an order. They used to send an aide in when I stopped going (at my request) but decided they couldn’t afford it for the level 3 care. Maybe they do it for the higher levels. Now I just get the lab results so I know what is going on a bit. Anyway, I hate the pinch of generations, for me, it included my H since Mom is not near and H really hates to be alone. </p>
<p>Thanks for the advice all. We are looking for the facilities with the qualifiers we need but that is already difficult. On top of that, grandpa has quite a bit of debt so that makes things a little trickier as well (but selling the truck will help and we already have a potential buyer lined up who wants to pay a really good price.) </p>
<p>Mom and dad have told the three of us (my two siblings and me) that after dealing with this they will have their living trust and long-term care insurance set up by the end of the year so that my siblings and I don’t have to deal with this. It is emotional enough to have to think about putting parents in a home without dealing with their finances too. Sigh.</p>
<p>12dandelion, good luck to you and your family as well and congratulations to your D!</p>
<p>I wasn’t sandwiched too badly. D didn’t end up starting the job today, it was just a discussion of her future (next week) duties and they gave her the tax paperwork. I’m glad H and I can go over them with her, this is her first go at all that IRS ‘stuff.’ </p>
<p>And mom, oh poor mom. The facility screwed up and got her to the appointment an hour early. Then for some reason the doctors office also put her in the exam room early, and she finds that particular room troubling. Too much white, and fluorescent lights, and she says it makes me her feel dizzy. By the time I got there, at the correct time, she didn’t even recognize me, and was quite anxious. I did my best to distract her but she didn’t really settle until the doctor came in and looked in her ears. Then she felt she was getting some attention and was happier. But it upset her again to leave on the bus and not have me come with her. 
Some days, you just can’t win. </p>
<p>@hisgracefillsme, does your grandpa own the house where he lives now?</p>