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    • CommentAuthorSedgly
    • CommentTimeAug 3rd 2018
    I came back today and read the comments on the thread I last posted on...didn't like seeing the reminder of "he hates me" every time I come Walla, New name.

    Thank you all for your responses.. lindyloo thanks for the hug :)

    When something bad happens I can write about it..but I can't talk about it until it gets digested in my it leaves me slow to's the pain of it..the hurt inside.

    The question keeps coming up lately .Will I place him..or care for him.

    I do care for to placing him...I guess time will tell.....I can't predict how things will be.....basically it will likely depend on his anger and my resilience....

    We have new neighbors to the east.. Jim goes over when they are sitting outside and sits and visits with them....I wondered how that was....if they could tell there was a problem or not......I went to breakfast with them yesterday, she asked me if I had considered having someone come in to spend time with him so I could get away so, I guess they noticed.

    I feel more often like I have to explain to people that he sometimes is doing ok.

    My car had $9500 in hail damage. I drove it to the shop for first pass. while there the guy gave Jim a rusted frozen up hinge and asked him if he could fix it .we brought it home ..I told him to try soaking it in vinegar .he did..then wd40 and lots of working it.

    Thursday at 6:00 am I drove him down to the cafe where the guys meet...(he used to be in the breakfast group). he gave the guy the hinge, with pride .there were 4 guys at the table...we have known all 4 for over 20 years.....I was watching them as Jim told him about the hinge. .they were looking at him like they were expecting something. or like they feared him. .mostly I think they thought he would say or do something... or was it pity?? Was he a reminder to them that they are all getting older???...he came back to the table I was at and said he wanted to stay and have breakfast with I left him there and told him to call when done.

    I thought one of the guys would give him a ride home, they drive right by our place..but he called 45 minutes later....I went and picked him up...passed the guys heading in on my way out...then he talked to the neighbors about going to the cafe so I drove down for the third time that morning....luckily it's less than 10 minutes...

    My youngest son made a point to me....I sold two cars last week... one will not be transported till around the 13th... (I put photos and description online, and also put I didn't know anything else about it..., had a call on it within the hour, guy wanted to come see it immediately, took him a few hours to get here, bought it on the spot)

    A couple days later Jim wanted to change the wheels on it, adjust the fuel etc... I told him it was sold to not touch it...he said ok....and my son said ,"What did she just tell you?".....he knew it was about the car but had no idea what... it blew my mind's no wonder he does some of what he does if he can't remember.......I have never before seen him have a problem with short term memory....he doesn't ask the same question over and over or it's left me to wonder....

    So I have a few questions you all probably already know the answers to... if it's to forward feel free to tell me.... Charlotte why do you live in an RV? Do you travel around to different parks? How long have you been doing this? Oakridge, what made you decide your mate needed an antidepressant ? Or was he always on one? Does anyone here have any experience with naturally treating brain problems? As in dementia, alz, ftd?.. I know that's not likely but just curious what if anything anyone has tried..

    I'm getting back on track.. slowly but surely... had a physical .. Will have labs done Monday or my car on the list to be fixed mid some windows done and only two left I think....all the little things are like one more drop in the stress bucket so glad to see them going....

    Been taking some time each day to chill...Went to the lake last week, first time this year... went today and watched the turkeys.. the older babies are around 8" tall..but there's a new flock of 13 babies barely bigger than a bird.. it's a calming almost no stress thing to do.....a lady two miles out had 2 mountain lions in her yard so there's always that....

    Tomorrow afternoon the neighbors are taking Jim to races....he still tells everyone he's going to run the circuit this year.....thankfully the season is almost over.... today he started one of the race idea what he thought he was doing... son has it blocked so he can't get it out if he wants.....

    It's Sturgis time... although we don't live in sturgis the rumble throughout the black hills is steady with an extra bunch of bikers around I may just have a peaceful evening at home tomorrow..
    Hope everyone has a great weekend.
    • CommentTimeAug 3rd 2018
    Why do I live in an RV? Being workampers was always a dream. We both love to travel. In 2004 I lost my job due to the business closing. My husband unexpectedly lost his the same month (January) for doing things he knew was against company policy. I know believe that was due to AD. We could not afford both the manufactured home and the motorhome, so we let the bank have the manufactured home. We owed $65,000 on it. They tired to settle with them but they refused. I said 'ok we will file bankruptcy'. They were certain we would/could not, said our credit was too good. We filed anyway. Other than the house our only other debt was the motorhome and a couple credit cards with low balances so we paid them off. The motorhome was not suppose to be included but Wells Fargo refused to exempt it but we kept making payments so they could not do anything.

    We moved over to my sister's house, put in a 'pad' using big 4 x 6 boards, put in a 50 amp plug. We would pull out every 2 weeks to dump the black water - my sister had us run the grey water into the arborvitaes. Oct 2005 we traveled from Vancouver to our first workamper job in Brookings, OR. While there is when we filed bankruptcy laughing all the way at the bank over the house. They sold it to the park owner for $25,000 coming after us for the balance which they never got. The next summer we traveled to Exeter, NH to work. We choose NH so we could see his dad who was in the VA memory care in Bedford, MA and to spend time with his sister while she still knew us. We arrived at the campground on a Wednesday - Sunday had to evacuate due to 100 year flood. We could not get our MH out but was able to drive it to higher ground. If it had stayed where it was, it would have been in about 8 feet of water. Art ran the camp store while I worked the office. They were 40 hour weeks all paid - we got our site free but had to pay our electric, cable (we had DISH) and internet. We made some good money there.

    In the fall we headed to Sebastian, FL. We only stayed there a month. The managers were verbally abusive. His idea of training Art was to show once and then say he was trained. He made a mistake on the swimming pool. The manager was yelling so loud using all profanity turning a beet red. So loud that people came running to see what was wrong. Art is the type that could get along with anyone but he quit that day. He was never the same after that. I believe that triggered the AD. We drove back to Vancouver, WA parking at my sister's for the next year.

    In March I got tired of repeating to Art all the time and sent him to the doctor who sent him for neuropsych workup. He told me he was fine. Late March of 2008 we drove to Pahrump, NV to be assistant managers at the Escapees Park. A couple months after arriving the co-op president fired the managers (he didn't like them) so we took over. It was stressful because of the co-op politics. In July Art came home from his appointment at the VA with the neuropsych report which said dementia. The VA doctor there sent him into Las Vegas for an MRI which only showed shrinkage normal for his age. So was diagnosed with aMCI. In Sept the president was recalled - we were caught in the conflict and fired. The previous managers got their job back. We hung around boondocking in a casino parking lot - was not ready to leave. We eventually headed back to my sister's where we stayed a couple years helping her.

    The winter of 2010/11 we played snowbirds heading south. Spent December in Yuma, Jan and Feb in Quartzsite the back to Yuma for a month. In Yuma we spent time with friends from the Escapees park who now lived in the Escapees park in Yuma and a couple we knew from our years living in Kent, WA. Summer of 2011 and 2012 I worked at an RV park in Prosser, WA which is why we ended up in the Tri-Cities -loved the area. I worked the winter of 2012/2013 in Fernley, NV. I decided it was time to stop working but now regret it cause he did not go downhill like I thought he would. That was my first time driving the MH from Fernley to here. I have only taken it out once in the last 5 years but hope to this fall.

    That's my story and I'm sticking to it!!!
    • CommentAuthorbhv*
    • CommentTimeAug 4th 2018 edited
    Hey Sedgly, I love that part of the country. My hospice nurse friend grew up on the badlands Lakota Sioux reservation. She met her third husband at the Sturgis motorcycle fest. My cowboy boots are from Wall Drug. A couple years ago she sent me a hand carved buffalo fetish. A friend she grew up with became a dentist. Now he is retired and is a Shaman for the tribe. He carved this buffalo for me, especially, after Cindy described me, our friendship over 40 years, and my struggle with alzheimers. It doesnt seem to matter that I am not a member of the tribe. I feel his blessing and strength, along with Cindy's love every time I touch my buffalo. It is the most meaningful gift I ever received.

    Remembering sunsets over the Badlands.....
    • CommentAuthoroakridge
    • CommentTimeAug 4th 2018
    I too have fond memories of the badlands and the trips to Sturgis :)

    Sedgly, when we were still living in town DH got to be almost a recluse. Didn't want to do anything or go anyplace, just watch tv and do sudoku. Day in and day out. He had memory problems but I couldn't get his geriatric doctor to take me seriously. Said, it's just aging, happens to everyone. Finally thought maybe he was depressed over his other problems. Doctor agreed to an anti-depressant but I couldn't tell any difference. Fast forward a few years and a lot of water under the bridge, got him in with my doctor who did listen and made referrals etc. when we decided to try aricept she said there was a conflict with the anti depressant he was taking so prescribed a different one. Maybe the timing was just right but I immediately could see a happier disposition and more interest in life. He has been taking the aricept and Zoloft for three months now. Someone recently referred to AD as like being on a roller coaster and that's exactly how we go. Up/down up/down. Some weeks almost normal others when I seriously wonder if I can continue taking care of him and still retain my own sanity. He is never violent but does have anger problems. It's never anything, usually when he doesnt understand something and the more I try to help the madder he gets but I don't dare stop trying to explain or walk away. Once he gets started nothing will turn him around. Had to take our company to the airport early this am, so just a couple hours sleep. We got a new airport about five years ago but his head was set on the old one. Well, fiasco isn't the right word but don't know what would describe our trip to and from the airport. I was exhausted when we got home but then, as usual, he doesn't remember anything while I'm on the verge of mayhem. I could go into detail about what all he did, but you've all been there.
    • CommentAuthorSedgly
    • CommentTimeAug 5th 2018
    Charlotte, wow, so you've been living in the RV for around 12 years. What an experience. Sounds as if you've been all over the U.S.. One of our ministers a few towns over sold their house last year in favor of RV living full time. It's something I'd like to try in a fantasy...don't think in reality I'd have the gumption to take care of everything alone....... as it is now we've got an older RV and my brother in law asked me just within the last month if it was winterized last year.....i had no idea what he was even talking about so. I guess that would be no.... if I turn on the faucet water comes out. Lol...but wherever or whatever the tanks are nothing has been taken care of....I think last winter some of the kids would go there to smoke....I keep saying I want to take it out alone for a week or the woods, not a park.....but realistically I'd have to first take it somewhere and have them prep it....and I don't want to learn about it.....I have never driven it....wouldn't it be nice if this came with a time table of exactly when they would go down hill....

    Bhv, what nice memories. I'm sure the buffalo is very meaningful. Pine Ridge reservation has got to be one of if not the most depressed reservation in the U.S.. There is a lot of discrimination and bias against the Sioux here. But the culture and beliefs run strong... we had many friends who were sioux, Jim did buffalo hunts with them etc....

    While most people love the Black hills, I've been here 40 years but still only think of it as a second home will always be in the Ozarks... what's that saying, can take a girl out of the Ozarks but you'll never take the Ozarks out of the girl...

    Oakridge, yup, I know exactly what you're talking about..we do that sometimes, round and round trying to explain something simple he is incapable of understanding....I wonder about an antidepressant lately, for Jim, not me Lol....

    Maybe it's the rollercoaster effect that leaves me with guilt....even with everything I've written that goes on I still find myself questioning... what if there's really nothing wrong with him....what if he's just a little forgetful.?? Am I making more of this than I should?? Am I somehow doing him wrong?? I mean I've seen it, the rages, the confusion, the illogical thoughts... and yet, I feel guilt saying anything about it....and now that other people have began mentioning it ...I can't discuss it with them without feeling like I should be defending I'm talking bad about him.....

    Even with my own children the conversation is hard....son1 mentioned he thinks perhaps it would help him to feel better if I got off my butt and set up appointments... I'm just dragging my feet for some reason....

    I better get up and go steal his dirty clothes... I wouldn't take him out this morning unless he put clean ones on but I know he will change back to the filthy ones if he gets a chance.....
    • CommentTimeAug 5th 2018
    Winterizing an RV usually mean either blowing the water out of the pipes or filling them with RV antifreeze to keep them from freezing and breaking. If when you hook the water up and you don't have water either running out on the floor or from underneath, then pipes are probably fine. I remember back in the 80s we bought a travel trailer from a guy to live in. When we hooked the water up it flooded the floor. He had not winterized it so they froze and cracked during the winter. As for the holding tanks, I would say if they were not emptied the last time it was used, then whatever was in there has dried up. If water is hooked up and the kids were in there, they might have used the toilet. With my MH you can look down through the toilet directly into the black water tank to see how full/empty it is. I always make sure I can do this. The one time we bought a 5th wheel I didn't and had problems with toilet paper sticking in the angled pipe to the tank. If RVs are taken care of they can last for years. Ours is 18 years old and just shows wear and tear from living it 14 years.

    Sedgly, you definitely need to find out what is going on. Being in denial never helps, especially if it is something treatable. But, by knowing you will not have to be so afraid to tell others and evidently it will help your son. They need to know to.
    • CommentAuthorSedgly
    • CommentTimeAug 6th 2018
    I figured winterizing was something like that...just don't care enough to get into it...

    I guess the knowing/not knowing....he's had the tests...he's been diagnosed almost 6 years ago with early onset Alzheimer's.....somehow... I just keep having this guilty feeling of maybe he doesn't......I don't know if it's denial to protect myself or what.....

    I mean, I know with no doubt there is something wrong....but I get hung up on things....he had PET scan. MRIs etc....they showed no brain shrinkage , which I thought was classic for Alzheimer's....but what it did show was spots of signal abnormalities throughout his brain....and the powers that be said ALZ. possibly FTD....and without a more definite diagnosis we chose no meds....which we would have chosen anyway because both of his parents had dementia, VaD and ALZ and we saw how they reacted to them...

    I don't know, part of it is a protective thing... It's ok if I know there's something wrong but I don't want other people knowing and judging him..if that makes sense...

    We will see after ends Sunday....

    On my personal front, I went and had blood work today and for the first time in a year I made it on the charts, the range maxes at 4.8 and I came in at 4.6...I want to be at 1 but a year ago I was at 66 so I'm well on my way...finally...with numbers improving stress is easier to handle..yay!!!
    • CommentAuthorpaulc
    • CommentTimeAug 7th 2018
    Brain scans are amazing but are still very rough. It is common for the scans to show no damage until late in the game. And often you need a neurologist who is a dementia expert to examine the scans directionally, the radiologists are likely to miss signs of FTD, which can be subtle and the examiner needs to look for them.

    Wondering if someone has dementia is quite common for caregivers. In early and mid-stages they can have periods of lucidity or sound so rational.

    Why are the doctors considering FTD? My wife has bvFTD so I am wondering if this is based on scans or his behavior?

    Actually, people close to you know knowing about a dementia dx can help prevent people from judging him. We discuss this as FTD caregivers and balance between sharing information or letting people think our LO is a jerk. Of course there is no need for everyone to know, but we found lots of family support. There was actually relief that my wife had a dx, no matter how devastating.
    • CommentAuthorSedgly
    • CommentTimeAug 7th 2018
    Thanks for the information, I didn't know it was common to show no damage on scans till later.

    He has seen 2 different neurologists, one private and 1 VA, I've no idea if either one was an expert at anything.

    I have no idea why they suspect FTD. After all the testing roughly 6 years ago (we started testing 7 years ago but it took until March 25, 2013 to get answers.) They had a meeting with us and said there was definitely a problem and he could easily fit into FTD or EOAD and wanted my opinion.... since I had no idea what FTD even was and it was an on the spot decision we went with FTD.

    after reading up on this I'm suspecting perhaps he has both... he has only recently began to have steady memory problems..but his behavior has been off the charts for the entire 6 years, worsening with time.

    Everyone, except strangers know Jim was diagnosed with ALZ. On that day, March 25,2013, they also told him he would not be returning to work. I set a meeting with his boss for that afternoon...when Jim told him he could no longer work he couldn't recall why so told him he had some kind of fatal brain disease.. I explained to them it was EOAD.

    He worked for the government and there was a liaison required to be at the meeting, he was a close coworker of Jim's... the guy almost was very touching to me...they both said everyone knew something was wrong as they would hold an hour long planning meeting and when it was over Jim would routinely say ,"Ok, how are we going to handle this?"...

    Jim never worked again. His boss told his supervisor and that afternoon at a multi department meeting the supervisor announced that Jim was f@$ked and had terminated his employment... when the meeting was over our phone rang all evening...

    It just bothers me I guess because people do judge him...and I don't like it.....they treat him retrospect probably because they don't know how to treat him.....some treat him like an imbecile on things he is still very knowledgeable about... others look at him with pity....others simply ignore him.......he has had his feelings hurt many times.....

    Here's a story from five years ago perhaps you can see the humor in.... our entire family was still very new to this... our youngest son who at the time was 23 took Jim to KFC.... Jim wanted 8 original drumsticks.....they didn't have these just sitting there waiting so they had to be cooked...Jim couldn't handle that..he calmly threatened them that he was going to get the police involved because they were supposed to have the chicken already cooked....this went on and on the net time the chicken was cooking....with legal threats escalating...... it was an eye opener for our son...who developed an entire monologue about taking his Dad to KFC and what went this day if one of his siblings are going to take Jim somewhere he still warns them...just don't, under any circumstances take him to KFC.
    • CommentAuthorSedgly
    • CommentTimeAug 7th 2018
    Oops! Hectic morning here, I meant to say we went with ALZ.
    • CommentAuthorpaulc
    • CommentTimeAug 7th 2018
    Most neurologists are unfamiliar with FTD. Sounds like it can be FTD, which is often misdiagnosed as FTD. You might want to join to learn more about FTD, mostly from caregivers though there are a few people with FTD on the board.

    Very small problems in the brain can cause major difficulties. It might be worth having the scans reviewed by a FTD expert. The best sources are neurologists who work for specific university hospitals. In general it is impossible for a doctor to make a living working in dementia unless they are with a university or the VA.

    Yes, people will treat someone differently once they know they have some form of dementia. Some people will provide support beyond what you ever expected, other people will disappear. Truth is, if you don't tell people they are more likely to disappear, just thinking that Jim is just impossible to be with. But I will never forget one of my wife's friends saying to me after I told her of my wife's FTD dx "It is about time you know what is wrong with her." I think we are luckier than most but so many people figured out that she had a problem, as opposed to many that are normally in denial. I was disappointed by some close friends of hers her disappeared, but she has other friends who spend hours driving so they can spend an hour or two with her at her ALF.

    You should feel free sharing stories here that you now find humorous. If you don't laugh you cry. And you wouldn't expect those with no dementia experience with laugh. Such as the time we all laughed nonstop after one member of a support group started telling us about her husband's autocoprophagy.
    • CommentAuthormyrtle*
    • CommentTimeAug 7th 2018 edited
    paulc, I don't understand what kind of neurologist would be unfamiliar with FTD. I live in a relative backwater of my state and even the PCPs I've talked to are aware of it. (My husband was mistakenly diagnosed with FTD when he first saw a neurologist in 2007, so the subject came up a lot then.) It's also listed as a type of dementia on consumer websites, such as the Alzheimer's Assn's site.

    Bringing this up revived memories of that day, which I will never forget. (I even remember the exact date.) The neurologist diagnosed him before even ordering the neuro-psych evaluation and told me to go home and look it up. I sat at the computer that afternoon and started to cry and it seems I did not stop crying for months. In retrospect, I probably would have had the same reaction if he had diagnosed Alzheimer's but the FTD just added another feature. I really feel for those of you whose spouses have FTD, especially the behavioral variant form, since it seems like it must be very difficult to manage.
    • CommentAuthorpaulc
    • CommentTimeAug 8th 2018
    Most neurologists have never seen a case of FTD and are not familiar with it. I would guess that most neurologists are not familiar with dementia. You are lucky that you have doctors in your area that are familiar with it. Most FTD caregivers I know discuss the difficulty in finding a doctor familiar with it and able to diagnose it, blaming the problems on marital difficulties seems to be a popular misdiagnosis.

    My FIL was lucky that his doctor (who is also a friend going back to college) who was familiar with it and able to educate him about his daughters dx.
    • CommentTimeAug 8th 2018
    Yes, not all neurologist specialize in dementia or know much about it. Then you get those who know Alzheimer's Disease but may not be really good in FTD or LBD - they usually are with the teaching/research hospitals. If you find one that has educated himself/herself in all three, you are fortunate.

    It reminds me of my experience I am having with orthopedics. I have a different doctor for each area: knee, neck, shoulder, and wrist/hand. My neighbor has one that mainly does hip replacement. Then there is my primary that seems to do nothing but refer me to someone else!
    • CommentAuthorSedgly
    • CommentTimeAug 8th 2018
    So, I want to make sure I'm clear on this. FTD will show on a scan. It just takes an experienced person to recognize it. Is that correct?

    And once it is recognized there really is no treatment?

    The only reason I even care which it is is because I have heard some drugs given to Alzheimer's patients would be contraindicated in FTD patients. Have you heard this? Do you know what drugs this would be?.

    He still mostly just sees his PCP once a year. In retrospect he has never treated him for anything, just refers him out.

    I am not to trusting of medical personnel knowing what they are talking about and don't want him on the wrong meds.
    • CommentAuthorpaulc
    • CommentTimeAug 8th 2018
    It took 5 years for anything to show up on a scan for my wife. Isn’t unusual for scans to show nothing in early or middle stages. Hers were viewed by FTD experts. The problem is that disfunction starts with neurons not communicating with each other, not the loss of neurons.

    No real treatment. There are medications that can help with the symptoms. Which can help both the person with FTD and the caregivers.

    You are correct that most Alz drugs are contraindicated in FTD patients, often makes it worse. But every person is different and drugs that don’t work for most will help some. I think UCSD has information on FTD on their web site. No Exelon (drove my wife’s anxiety up). No Namanda. I will try to look up the url.

    So no treatment but professional help can help both of your on this journey. And the drugs can be hit and miss. Everything usually takes a few try’s until you get it right.
    • CommentTimeAug 8th 2018
    If my memory serves me right from discussions and what I read, Aricept can adversely affect those with FTD. You might want to see if you can do another MRI -if your husband will co-operate - to see what is going on where there is questions. You are right in wanting to know if it is AD and FTD since drugs can affect differently. If you husband won't go or the doctor won't order another one, I guess not much you can do. I hate when doctors or our spouse tie our hands!
    • CommentAuthorbhv*
    • CommentTimeAug 8th 2018
    I am writing this here because it is a beautiful day. And to bring this above the spam.

    I played 18 holes of golf again today. Didn't score well, but teamed up with some really nice guys. They had seen me out there a few times and waved and then waited for me to catch up. They were a lot of fun and they said they enjoyed my company and invited me to join them any time! It is sooo nice to play with people who are having fun even if they get stuck behind a palm tree. I learned a lot and am getting better, even if bad.score today.

    I felt bad for awhile for leaving him at daycare while I go play without him. But then I remember how angry he always was when playing and I certainly don't miss that. All of the people I have hooked up with have been so much more easy going. It changes everything!
    • CommentAuthorSedgly
    • CommentTimeAug 9th 2018
    Part 1. Ok, I have a much better understanding of this. Thanks Charlotte and Paul. I am so glad we passed on the aricept, but it leaves me with the what they heck feeling to think they are the ones who first told us FTD or EOALZ (and of course I now am pretty confident it's both) and yet they prescribed him aricept... I actually filled the script but he had said years before this came up after watching his folks go through it that he would not want to take drugs. So we stuck to that and never opened it.....

    Do you find symptoms to wax and wane? 5 years ago we had good days and bad days... the good were darn near perfect.....we still have good days and bad but our good now are like our bad were then and our bad are total rage, confusion etc.. if that makes sense....

    Some phases we seem to have passed.. which is a good thing..(I just typed a paragraph about them but nope, erased it....still can't quite go there. )

    We have phased back to ok days. While I know from past experience they won't last it is nice when they are here.

    BHV you made me smile, I remember that feeling of just having fun... no stress, no thoughts, laughter... I'm happy for you.

    We got out yesterday, went to one of the biker breakfasts. Invited the neighbors from the east and Jim's brother. It's always good to get to talk to someone, I'm surprised how much I miss visiting with people...there were the typical things I'm still working on accepting... lots of townsfolk go to the breakfasts ...(mostly because every restaurant has a massive wait), a lot of people stopped at our table to say hello... all of them had that same sad face, looking with expectations like they thought he would do a trick or something... one guy even stopped and said hello Jim, it's John...I'm trying to concentrate on how nice it was that they all stopped to say hello and chat for a few...

    I had my own doctors appointment yesterday, I got all great news!!! I always have him wait in the car ...and so far there has been no problem, knock on wood....a year ago when I first got sick and didn't know what was wrong I was in the ER with my heart screwed up and of course he was with me... he told them I had just had a hysterectomy and a bunch of other stuff......and there was no reason for them not to believe him as he can appear so took multiple times with multiple people before it finally got changed.. I have never had a hysterectomy or anything like it LOL...

    First time I was admitted to hospital for tests, 3 years agothey let him stay in the other bed in the same room... it took less than 24 hours for me to figure out that wasn't going to son came and took him... he stayed with him all day then after he went to bed and fell asleep son would go out for the evening... last year my heart woke me at 1:00 and I knew I wasn't going to wait for him.. so I left him home alone and drove myself to the ER...finally they figured out what was wrong.... they wanted me to take an ambulance an hour away to a bigger hospital... and they were a bit irritated when I told them I wasn't going anywhere until my son arrived at my took him almost an hour to get there....they tried to scare me into going but nope, didn't happen.... I ended up spending 10 days on the cardiac ward...the kids stepped up, someone was with Jim the entire time.. every night but one they kept him in his own was a very sad time for me, kind of a turning point.... Jim wasn't there for me... he had no desire to even visit me...i knew then that things were permanently changed.....the kids were busy taking care of him and their own families....I was med resistant and every day my cardiologist would come in and tell me my heart could not continue to survive and we would try another med, max it out and then try another....I rocked 200bpm out of rhythm for 10 days and nights...I was drugged and drugged and shocked multiple times....finally as they were finding a surgeon something took hold and it corrected....

    I came home on a bag of meds with my HR rocking 50s in sinus rhythm... the kids were relieved and glad to get back to their families....they had formulated a plan for Jim's care, if I died they would move him into our oldest sons home... one of the girls had a house built next door to him and another is 5 doors down... they would take care of him together... which shocked me as they are the same ones who tell me I should have him admitted somewhere.
    • CommentAuthorSedgly
    • CommentTimeAug 9th 2018
    Part 2

    Recovery was rough, I couldn't walk five feet with out being totally out of breath.. at night my HR would dip into the 30s......we were on our own.....and Jim would whine... about everything he wanted and wasn't getting...the kids in just 10 short days , had spoiled him.... one cold winter night he wanted to go out to dinner and the whining was incessant... so I made it to my car, drove to town to one of the casinos gave him $20 and showed him through the window where to pay ... I sat in the car for just over an hour and watched him...he made multiple trips to the buffet and was obviously thrilled....

    It took a while for my body to heal.. but I finally got off all the meds and returned to normal....I'm not back to where I was before this..but I was able to go on a mile long hike last week..and while I was huffing and puffing going up the hills, I made it...I haven't figured out just how I can rejoin the gym yet but I will work something out...

    I'm not sure why I'm writing about this here.... I guess because I got really good news and I feel like celebrating...This body I live in is doing OK, even with the stress, (not sure if I mentioned, one of the things they told me was "Stress is not your friend, you must lower your stress levels" and I just laughed and laughed...)

    BTW, I looked up autocoprophagy.. something I've never heard didn't leave me speechless but just left me sad....there's so many parts of this that just aren't fair, I just want to stomp my foot, shake my fist and scream NO, NO, NO.
    • CommentTimeAug 9th 2018
    thank you for sharing you story with us. You are so blessed to have kids who stepped up when needed. I hope they continue to be there for you. And yes, you probably should look into placement if you can afford it or qualify for Medicaid.
    • CommentAuthorbhv*
    • CommentTimeAug 9th 2018
    Wow, to get to where you are, off the meds and able to go on a hike? Wow. Supercalifrajalisticexpialidotious!

    Autocoprophagy? Oh my.

    Sometimes I go out front and just scream No No No or mutter, "someone please come help me."
    • CommentAuthorSedgly
    • CommentTimeAug 16th 2018
    I'm deep in thought today........ this whole journey is surreal.....
    • CommentAuthorSedgly
    • CommentTimeAug 19th 2018
    Things can surely happen fast...... i need some way for people to know he is demented if something happens to me and we are alone.....

    Yesterday I was driving down I-90 at about 75mph when a deer appeared from no where.... I saw it and hit it at the same time......while I was braking Jim was doing something....and I had the urge to stick my hand out in front of him to keep him upright.....but I didn't, instead I kept both hands on the steering wheel holding it tight and steering for the shoulder while braking hard so the guy behind me didn't rear end us....

    When the car stopped I asked him if he was ok....apparently he thought the car would roll and the safest place for him to be would be under the that's why he was coming forward....smh.....

    Pretty sure the car is totaled...It took all of the front end,.... lights, bumper, fenders, hood, radiator, air conditioning, cooling fan etc and wrinkled the I said, it was a hard hit....deer was killed instantly ..It flew about 30' off the highway.....

    HPs came and talked to us.... and I'm sure they had no idea anything was wrong with him...aside from 3 times I told him he had to stay on the passenger side of the car..he kept trying to wander to the interstate side where traffic was.....

    So now the process to replace the Subaru....where we live they are 36,000 but I've been talking to a dealership in Denver and he has the same 2018 for 24,000..... for 12,000 we have to make the 6 hour trip....what use to be a simple let's run to Denver for fun is now such a dreaded big deal...sigh...

    I actually emailed, then called Subaru headquarters about the pricing difference.... they first offered me the usual $500 loyalty coupon I thanked them....but when I explained how tough it is to travel with Jim ....he said let me see what we can do...and he said he'd call me back before Tuesday I will be interested to see....

    But it left me thinking, if I had been hurt, knocked out or disabled....what would have happened to him...would anyone have stopped him from wandering into traffic.......I need a plan, and I've no idea what it is..
    • CommentAuthorNicky
    • CommentTimeAug 19th 2018
    Sedgly - OMG - where you or your husband hurt?? Sometimes we don't feel anything for a couple of days.... You must be a good driver to have kept control of the vehicle. Thank goodness you didn't roll.....

    As for your husband, you could get him a medical ID bracelet. Medic Alert (in Canada) is one the companies & there are others made for dementia patients - his medical history would be in their files. At least, if someone finds him, they call the Medic Alert's number on the bracelet & he will be taken care of. I believe you have the choice of putting any info on that bracelet, such as his name & phone number & even his condition. I looked into it a couple of years ago.

    When you're talking to people, the easiest way to let them know he has a problem is to get cards from the Alzheimer Society. I had those cards & it was written:
    'My companion has an illness which causes memory loss and confusion.
    Please understand any unusual behaviour'.
    This way he doesn't hear you telling them about his problem.
    Just don't forget to use them, as I did when we took the train. My daughter reminded me when I returned & was telling her about the train ride. I can't believe I had forgotten to use them - duh! I had used them at other times, so don't know why I forgot - would have made the train ride easier...

    Good luck with finding another vehicle.
    • CommentTimeAug 19th 2018 edited
    My husband has a medic alert bracelet that says 'memory impaired' then the phone number to call to get important information. They have my name as wife and DPOA, his secondary DPOA in case they can't contact me or I am injured/dead, his doctor, etc. You can put any information with them you want including a picture. I use to have one that said 'caregiver to someone memory impaired' or something like that. A year and a half ago I had to remove it to do a medical test and lost it. I didn't have the money to replace it. When you sign up you get them cheaply but to replace is more. But, I really should sign up again. They are a good option is you don't want to pay for things like gps things.

    Subaru - guess those commercials about how safe they keep you in an accident are true. When I drive out in the open roads that is always a fear because I have known people who hit animals and had close calls. I am even more cautious when driving the MH as not much up front to protect you and a lot of weight to stop. Going 75 - that fast scares me. I like 60 - any faster and I don't feel in control, so I usually am in the slow or middle lane.

    So glad you are both safe. As Nicky said, the sore muscles can show up a couple days later. May you get a great deal on replacing it with a car with no problems.

    with the medic alert bracelet it is always there and they usually can't take it off. I mostly got it because my FIL and SIL were wanderers and that was my biggest concern. Then when I was needing surgery, it was more important.
    • CommentAuthorlindyloo*
    • CommentTimeAug 19th 2018
    Sedgly, So glad you are both alright. What a scare.

    I too worried about what would happen to my partner if something happened to me. I learned about seat belt medical alerts - probably from this website. They are red nylon cases that velcro around a seat belt.

    I had all of my partner's medical information including diagnosis, medications, doctors and hospitals on a sheet of paper inside it. I had large bold print in two places that under no circumstances could she be left alone because of her dementia. I included her son's and her brother's phone numbers. I also photocopied her driver's license so any first responders would know which of us was who in an emergency. I also had the same type of info for me on the driver's side seat belt, including photograph. It also identified my partner as my wife and stated she should never be left unsupervised due to her severe dementia. Having this info in the car and easily accessible meant I did not have to think about it every time we went out. I also kept the same info in my pocket book and attached to the refrigerator.

    If you are interested just google 'seat belt medical alerts' and you will be able to find dozen places you can order from. Having this info in the car and easily accessible meant I did not have to think about it every time we went out. And you will have them well in advance of your new car. So sorry about the car.

    Take good care.
    • CommentAuthormyrtle*
    • CommentTimeAug 19th 2018 edited
    Hi Sedgly, That's a frightening event. I'm often fearful of hitting deer when driving on the interstate in rural areas. Sometimes you see them gathering on the edges. Maybe waiting to cross? Lindylou's suggestion is good one but it would only work if someone got to your husband before he took off on his own. I don't think there is any plan you can make to ensure that he would not wander out into traffic if you got hurt or knocked out. In the scenario you described, he would have already taken off by the time anyone got to him. When my father had dementia, he would open the car door while I was driving on the interstate. That was before cars had the feature that prevented passengers from unlocking the doors. I'm sure those episodes took a few years off my life.

    As far as identifying the type of dementia, some scans are better than others. They usually do an MRI. If insurance pays for it, they can also do a PET scan, which gives them more information, but still does not give a certain diagnosis. My husband's insurance (Medicare) would not pay for a PET scan. Often after the MRI, they do neurocognitive testing (intelligence & language tests and the like) in a psychologist's office. That takes several hours. Based on that, they can often make an educated guess about which areas of the brain are most affected. Did your husband have that kind of testing? My understanding is that the drugs they give for Alzheimer’s should not be given to people with FTD. At least, that’s what my husband’s neurologist said. I questioned his diagnosis but did not argue, since I don’t think the drugs were much good, anyway. Later, he prescribed them and when I raised the issue of FTD, he weasled around and finally acknowledged that he did not think my husband had FTD. I found dealing with the medical establishment to be very tiring, especially since the upshot is the same no matter which kind of dementia your spouse has. There is no effective treatment for any of it.
    • CommentAuthorSedgly
    • CommentTimeAug 19th 2018
    Nicky, yes, we are both fine. Don't think I will feel it at all. Everyone kept telling me how calm I was....Truth is I was totally calm. I think there are so many things out of my control... this was just one more.....but I was a bit humored when the 911 operator mentioned it....then the triple A operator mentioned it...then the HP....for some reason I simply had no feeling about it.....maybe I'm just becoming numb to things I can't control....

    I do have cards.. don't recall where I got them. They are mostly blue with a big daisy and say something about please be patient, the person I'm with has Alzheimer's.... I've given them I think twice maybe a year or 2 ago...guess I could have handed one to the HP with my license and insurance...didn't think of it...

    Charlotte, I don't think I'd keep a necklace or bracelet on him...but as I pondered it I thought I could have a tattoo put on his forehead LOL...I do realize now that I need to add someone besides me to his contacts in his cell ...and probably some of the kids names, listed as daughter or son..

    The deer here are plentiful.. I can drive out 10 miles at any time and see a minimum of 30 head... we have a buck and doe we named Ralph and Priscilla we put Apple's out for.....the one I hit was not one of "ours".. we were 30miles from home....

    On a good note, I no longer have to worry about having the hail damage fixed...

    Lindyloo, I love the seat belt IDS. I had never heard of them but I clicked over to Amazon and there they were... I think we could make these. It was my oldest daughters bday Friday and one of the things I got her was a cricut so I think she could do these with a medical snake emblem but also something that would appeal to Jim. Thanks so much for sharing this.

    Myrtle, yes, I will get the seatbelt medic alerts and hope for the best...after all, we can only do what we can do....Jim opened the door to get out multiple times while I was driving... It only took one time of being told if it happened again he would have to ride in the back seat with the child safety locks on for him to he waits for me to open the door first...

    He had the scans, both MRI and PET.. they showed spot of signal abnormalities throughout the brain but apparently not much else... he also had the 6hour test with neuropsych.. she is the one who said he had either EOAD or FTD.. But he exhibited signs of both so she couldn't be sure which... that was roughly 6 years ago....I'm relatively sure now he had signs of both because he has both, not either or.... I guess it doesn't matter as long as we only do meds that are friendly to both, right now he only takes diltiazem for afib....

    On a humorous note, ...years ago when he was 1st diagnosed one of the things we started besides drinking green tea and using coconut oil was eating chocolate every day.... I can't even recall why...something to do with theobromine (sp) or something like he still eats chocolate every day, though not the kind he was....anyhow because of this I buy 50 or so bars at a time... (store I buy them at is almost an hour away) anyway a while ago we ran out... I thought I had bought them but so much was going on I didn't really think about it....I purchased more... Jim always carries the groceries in.....yesterday my son and I are cleaning out the Subaru preparing it to be gone....and what do we find in the back carrier?!? Bags of chocolate...that had sat in the hot car apparently for over a month.....oh well.....

    I've got an adjustor assigned already so hoping to make this all happen quickly. Friday we are heading to a family reunion for a few days... hoping it's not a mistake.....
    • CommentAuthorNicky
    • CommentTimeAug 19th 2018
    Sedgly - a family reunion should be good if everyone knows about his condition. Unless, of course there are family members that you don't like or are nasty.....

    I found when we were with people who knew his condition, it was so much easier. When his sister visited from out of town, she tried to talk to him & keep him busy, so I could get a break.

    Hope you enjoy the family reunion.
    • CommentTimeAug 19th 2018
    the bracelets we got are the classics - I needed help getting it off. If you get it fit right you have to work to fasten it and take it off.
    • CommentAuthorpaulc
    • CommentTimeAug 20th 2018
    Sorry to hear about the car meeting the deer. I'm glad you didn't stick your hand out in front to stop him from going forward, it would not have helped and you might have hurt your arm. If sticking your arm out in an attempt to prevent a child from going forward won't work, it definitely wouldn't work with an adult.
    • CommentAuthorSedgly
    • CommentTimeAug 26th 2018
    It's been 10 days since the car met deer...still don't know if they will total or fix it..... feels like everything is hurry up and wait.....supposed to hear something Tuesday...

    We did the family reunion thing....his it was small..when my family does a reunion there are hundreds of people...(I was 1 of 9 kids and so was my Dad)....Jim has only his 2 brothers..both single, one with no kids and 1 with 2... they have no grandkids.... in the end there was around 30 people there...

    He did ok, one of the girls very firmly told him to stop yelling at the grands....and he did.:-)

    I did wake the 1st morning and he was gone....oldest daughter was ready to get in her car and search for him...but one of the grands said he was out on a walk about, in his jams, with no shoes....I went and found him, he was talking about how the grass felt on his feet........ I'm not a shoe wearer,.....having been raised on a farm in the south there were times I'm sure I likely went a week without wearing shoes..... I still prefer sandals or nothing....Jim on the other hand in the entire time I have known him has never once been outside without shoes, has never, ever worn sandals or flip flops.....I'm not sure how to explain it but seeing him standing there wiggling his toes in the grass and smiling about how it felt..made me feel both happy and was as if it was freeing for him.....but at the same time, another piece of him leaving as it was something he would have never done...

    ... 4 adults, 7 grands and Jim all went on a hike, they ranged in age from 6-67.....supposed to be three and a half miles up.. supposed to be rated moderate but should have been difficult...instead of three hours it took over 6... their garmins said it was 4.2 to reach the summit and then had to come down in the dark on a lot of loose shale...a few people fell....not was seriously injured....memories were made...when the summit was finally reached at dusk the grands all stood in front of the sign that proclaimed the elevation doing the floss of the grands summed it up when they finally got back just before midnight..."The worst part was going up...and coming down...and pretty much everything in between!!"

    The whole weekend was tiring, but enjoyable, the grands ran free and so did Jim, everyone watched out for everyone so there were times for hours when we were separated and all was fine...

    Last night he woke me up with pain in his side..up high on right side..I thought perhaps gallbladder but I don't know.....I know it can be referred pain..tomorrow I will take him to the VA to have it checked.....he was complaining of it a few days before the reunion but it was minor then..wonder if the walking intensified something....probably I should have taken him today....sigh.... I really don't want to drive through the canyons after dark....paranoid about deer I guess...but if he wakes me with it tonight I will go ahead and take him....I'm thinking most likely it's muscle that he over used last week when moving some things.
    • CommentTimeAug 26th 2018
    the strained muscle aggravated by the hike makes sense to me. That was special about the grass. My husband is one who never goes barefoot, even in the house.

    Those socks and shoes need to go on right away - always been that way. Even at the beach he won't go barefoot except -He did shock me by going barefoot one time at the beach in Panama City. The sand was so soft.
    • CommentAuthorbhv*
    • CommentTimeAug 26th 2018
    The grass reminds me of my hb calling me outside to see the clouds! Or Ravens.flying about.
    • CommentAuthorSedgly
    • CommentTimeAug 27th 2018
    Called VA this morning, they had me speak to triage nurse.. she said to take him to ER...

    Three hours and an xray later they said a pulled or torn muscle... ibuprofen, blue ice and rest...

    I didn't realize till I was there how much I was playing the what if game.... what if it's his sarcoid acting up?!? ..what if it requires a stay?!? will he handle that?!? hurts when he breathes in....what if it's one of the viral silent pneumonia we have going around?!?..what if it's his gallbladder and he needs surgery?!? will he handle that?!? I've seen so many people take massive steps down from any of those......what if this is life changing?!?....

    So now we know, it's just a pulled muscle and might take 6 weeks to feel better.....

    And his interview: on a scale of 1-10 how bad is the bad was it at night.....2?....
    Nurse leaves the room....Did I answer ok?..... you did fine, there are no wrong answers..... 1-10? Is 1 when it hurts a lot or a little?....

    We had the same ER doctor he had a year ago and Jim remembers him, and even remembers he saw him for removing a piece of steel from his eye.....I'm always amazed .... good amazed or bad amazed but amazed none the less.....

    Yes, Charlotte and Bonnie, the grass was special...but as I say, odd for him......

    • CommentAuthorSedgly
    • CommentTimeAug 30th 2018
    It's lonely here.... I think going to the family reunion and being with so many people has left me feeling the loneliness more......usually I'm a loner so I guess it sort of surprises me..

    .I took him out to dinner last night,.... first time in a really long time.... when the waiter came to take his order Jim looked at me with panic in his eyes....I reminded him of what he wanted.... then we basically ate in silence.... roughly 5 years ago we went out for every meal... people use to comment how nice it was to see us talking and laughing.... we always held hands back then, they were shocked when we told them we had been married over 30 years and had 5 kids.....time goes by.... our daughter will be 40 next year...

    He isn't so angry any more.... doesn't act like he hates me like he did for so long.......he's just lost.....

    A close friends Mother passed ..Jim talked to him last night... said we are supposed to meet him and his brother at the cafe at 7:15 this I was up early, at cafe at 7:10...... @7:30 I texted him.. they were at a cafe 30 miles away..... so I said let's go and we drove back home without eating.... I know better than to not double check what he tells me...... services are tomorrow....I'm taking Jim....hoping it all goes smoothly

    I missed the Alzheimer's support group I was going to attend Tuesday... simply forgot it till daughter called to ask if I was on my way.. by then it was too late....

    It's just sad here..........
    • CommentAuthorSedgly
    • CommentTimeNov 25th 2018
    It's been a few months...Jim healed from the hurt side....then was with the neighbor and ran a grinder in his hand....took him to the ER and had it stitched up and they put him on antibiotics....went back 12 days later to have stitches out...looked at him and his eyes were almost swollen shut.....allergic reaction to penicillin....

    I've been following all of your writings........

    What was....what is....what will be..........

    We only have so much in our control .......not much at all......