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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 here...so 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 brain..so it leaves me slow to respond..it'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 him......as 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 them....so 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 .....it'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 anything...now 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 Tuesday...got my car on the list to be fixed mid September...got 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 cars..no 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 already...so with an extra bunch of bikers around I may just have a peaceful evening at home tomorrow..
    Hope everyone has a great weekend.
    Sedge
    •  
      CommentAuthorCharlotte
    • 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 so...in 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..my home will always be in the Ozarks... what's that saying,..you 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 him....like 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.....
    •  
      CommentAuthorCharlotte
    • 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 rally...it 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 cried...it 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 differently....in 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 on....to 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 https://www.ftdsupportforum.com 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.

    edited:
    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
    • CommentTime7 days ago
     
    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.
    •  
      CommentAuthorCharlotte
    • CommentTime7 days ago
     
    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
    • CommentTime7 days ago
     
    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
    • CommentTime7 days ago
     
    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.
    •  
      CommentAuthorCharlotte
    • CommentTime7 days ago
     
    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
    • CommentTime7 days ago
     
    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
    • CommentTime6 days ago
     
    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 normal...it 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 work...my 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 home...it 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 bed...it 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
    • CommentTime6 days ago
     
    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 of....it 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.
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      CommentAuthorCharlotte
    • CommentTime6 days ago
     
    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
    • CommentTime6 days ago
     
    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."