The Spanish Flu took my grandfather when he was in the army, 1918. My Dad was just a young boy. When his Mother died 2 yrs later, he and his younger sister were put in an orphanage. Through genealogy records we discovered there was family on his Mothers side still living. This has always been our family question. What happened? My Father would never, ever, under any conditions talk about it, and his sister was too young to remember much. The few records that existed were lost when the courthouse burned. I found so much family history but we could never discover exactly what happened to his Mother nor find where she was buried.
"Do you want coronavirus with that??" the voice coming through the speaker asked. No thanks. Just the egg mcmuffin and the coffee, thanks.
There's no getting away from this. Sports, entertainment, news, and politics are all coronavirus all the time. Normally, the media would be full of Trumpisms and the election but that stuff has all disappeared into the gaping maw of all coronavirus all the time. It's enough to choke an elephant.
The thing about fear is that fear is not the thing. Fear comes along with the thing like a back seat driver, but has nothing else to do with whatever events are going on. Fear is like a seven year old child with a learning disability and a cattle prod. In exactly the same way it never gets tired of prodding you that THIS could happen and THAT could happen, over and over, with no other plans whatsoever.
That's how it was over half a century ago until, with my heart in my throat, I crawled out of bed and slid underneath it in the dark. There was nothing there except me being stupid. Later in life I realized that evil is boring. It's either sadism, revenge, unbalanced chemistry, ill treatment, or a mind that has gone bye-bye. Evil is like the slow kid in class who just doesn't seem to catch on. It's like the Rocky and Bullwinkle thing. "Hey Rocky, watch me pull a rabbit out of my hat", says Bullwinkle. "What?? Again?!?" says Rocky every time.
Here's what I want. I want lazers shooting out of my eyes capable of taking out a coronavirus at twenty yards. I want an impermeable ion shield that comes on automatically at the slightest threat while the lazers shooting out of my eyes make short work of any Captain Hook virus cells with ideas. Or even without ideas.
Instead, I'm self isolating like I've been told where there isn't anywhere to go anyway. We are well and truly locked down. This is unprecedented in history and no one knows how effective it will be while we watch the number of cases increase daily. Without New York city and across the river, the American numbers would be almost halved. I hear the US army corp of engineers is building numerous hospitals there and the first military hospital ship docked there a few days ago. It's going to take 'normal' patients from other hospitals so that they can free up beds to deal with the virus.
This all reminds me of that famous line in the Groucho Marx movie. He's leaving a boring party and speaking to the host says, "I've had a great time. But this wasn't it."
Don't fall over but Pelosi and Schiff are already working on doing an investigation into how Trump handled this. They can't even wait until this country is back up and running.
Interesting comparison of how things have changed. I have been to Time Square and it was sure not empty!
There was a doctor talking this morning on the news who commutes by train. She said when she goes home it is almost impossible to find a place to sit to be 6 feet away because so many on the trains.
All is not lost even though the stories that are written, are written. What I am seeing is crucial in this long, evolving journey is to keep finding my ways of accomodating what is before me. That was true in public school already, has been true throughout my life, and seems especially true these days.
It seems that way for a number of reasons. I'm much older and so much less indestructible. Most of my life is behind me and so I'm more fragile and nostalgic. I've been through a lot where I have top flight professional advise that that is true - I, and every other caregiver of a long term fatal disease, goes through a great ordeal.
The most important single thing, I believe, was to hold on to that idea as truth. That I wasn't doomed to always feel the way I did when it all crashed down, that I had an abundance of reasons to feel as bad as I did, and that I had to learn how to let go of the way things were with some time, so that I could actually move forward in the way things are now.
Some of the people I know have argued that I'm not moving forward because there is no visible sign of anything different. I've changed so much I don't worry about what other people think either way. We've all moved back to our original roles which is that I'm fine with deciding things myself and I'm fine with friends having other opinions. I was very sensitive to just being present with other people for some time, let alone with them arguing that I'm wrong.
I'm not happy as I've been saying, but that wouldn't be me. I'm not unhappy either. I'm just here and feeling like the older version of myself I actually am. I turn 70 this year and most of the last two decades were hardly noticeable the way a normal person would notice themselves in years going by.
I'm a glass half full kind of guy. I don't like sugar coating or pollyanna thinking (for me) but I think severe outlooks and too much seriousness are just as half baked. What I naturally am didn't matter most of this time afterward because it never came into play while I wasn't feeling natural. Most of that time was a long progression of feeling less bad which isn't that easy to notice. It was only as some things resolved that other feelings and thoughts became noticeable and then some time more to become tangible.
I want. That's one of them. I had no access to 'I want' for a long time and I didn't know that was a thing until enough bad had faded or gone for me to move in to thinking like that again. I never lost 'I don't want' which on the night of her death included everything. Now I don't want my freezer to die while this virus is going on.
That fridge was old when I bought the house in 2006. Now it's 14 years older. The whole time it has occasionally made very strange noises, like it's communicating with aliens. Now would not be a good time to go kaput. In fact, when this dies down, I'd better get my behind out there and buy a new one.
Some friends are going buggy in this bleak landscape. I know better. I know 'bleak landscape' because I spent a huge chunk of my life there - and this isn't it.
My sincere hopes for the health of those locked down in nursing homes and for everyone here. Stay safe.
I am thankful that my wife’s facility hasn’t had any cases. I am sure they will at some point. They are working to prevent any invasion from spreading.
I’ve been reading about ventilators. Very unpleasant, and with long term ventilation I’m not sure if I would put my wife on one. Her quality of life is good and I want her to keep it. I am afraid that if she was on a ventilator for COVID-19 she would be much worse off. A discussion to have if she ever gets it and she does poorly.
I had a do-not-intubate order for my husband. I think ventilators are considered life support. After hearing what people (even young people) who are put on ventilators go through during and after the procedure, I'm thinking of signing such an order for myself. My greatest fear is becoming helpless due to a stroke or medical treatment.
We are still on the upswing here, one day last week I was shocked at the number of new deaths posted in one day. Then heard the majority were elderly from one nursing home. They didn't identify the place either. I still think my "illness" is being caused by the mold problems outside with record heat and rain. I thought I was over it, feeling fine, worked outside Wednesday and Thursday, trying to pull the mulch back over my tender plants in time for a freeze last night. This 82 degrees to 30 degrees in one afternoon is just too much.
I had a sore throat last night, threw up about 2:30 am but got up at 8:30 feeling fine. Was sitting here reading about 10am, when DH got up and began to feel very cold, which went to freezing chills. He turned the heat up, piled blankets over me, and I felt very sick. But once the chills went away and I warmed up I was able to sleep awhile and not ready to go dancing but don't feel bad tonight. I just can't believe this is covid-19 as I've not ran a fever - unless we consider the 98.6 a temp for me.
DH ran temp for several days but no other symptoms other than fatigue. Just don't know.
On a similar topic, I needed to talk to my dr about DH. Nurse says not possible, not even email, only way is e-visit. That isn't an option since he is always with me, listens to every phone call and if I try and get away for privacy, it causes problems. Can't access internet in library or other facility these days so decided I'd just stick it out. She told me to go ahead and schedule an appt for late May. Not life or death or I might get upset.
DH is having trouble swallowing, not all the time and not with any particular food. I know this is common, just not sure how to help him. I also don't know if his extreme fatigue is, az, laziness, from simply not getting any exercise or what. Years ago he had severe chronic fatigue syndrome, had to take a 3 month leave from work to recover. I tested positive for the Epstein Barr syndrome, which is what he started with but never had the problems he did.
The light in our shower is out, DH says shower in daylight. It's high, and I think the entire box has to be unscrewed to access the flourescent tubes. Not particularly hard but takes two people. Has to be done during the day as I have to shut the power off in there. Been almost two weeks, so very frustrating. Can't even have someone in to help me with the stay-home order in place, and DH can't/won't, one or the other.
In England they have a lot of canals. They came about during the industrial revolution where moving things by canal was part of that. Almost nobody ships anything by canal these days and certainly not pulled along be a horse and it's one horsepower.
The Brits, however, have restored most of their canals and one very popular thing they do is what they call narrowboating. The canals these days are full of long, thin boats that are 6'10" wide and often over 50 feet long. Many live on them moving around from place to place through the hundreds of canals that crisscross England.
One of the things I do is follow some of them. They do weekly videos and I've been following some of them for several years now. They're locked down just as we are. Here's a 13 minute video David made a couple of days ago showing his typical day in lockdown.
Here there are still service people working if you need them. As for you husband's condition, I would say if he is having problems swallowing that would warrant a doctor phone call at the very least. I love how they think everyone can do video calls or they think they have the option or want to. I have contacted my doctor via email. I can't believe they have said not even that way.
It is horrible the way they have shut down medicine for all but the Covid 19 cases - or it seems that way. People still get sick, still need medical care or at least a doctor visit.
People still get sick. But we need to keep our medical staff healthy. And we do not want to catch COVID-19 at the doctor's office or hospital. But this is why pandemics are so dangerous, they reduce medical services for everyone. They are just trying to minimize contact.
Today was unexpectantly busy. I won't go into details but I had to go to the office to make someone happy and then the work just fell from the skies. Still waiting for the last work to get done but I'm home. It did give me a chance to pick up an invoice with some information I need for a call tomorrow.
Charlotte, I could probably find someone who would come in to fix the light, but I don't know anyone personally and don't think I want a stranger inside right now. The pump man is working, he came and marked out where they have to dig, then another man came this morning to mark the water line - outside. Not sure when they will begin, or exactly what they have to do - nor how much it's going to cost - but has to be done. When they have to come in the house I'm going to have them come in the side door - nearest the bathroom. The utility closet is actually on the other side of the bathroom so they have to cross through. So I'll either stay far away from them or go upstairs while they are inside.
I am so tired of hearing about this virus, I don't watch the news anymore and don't look on the computer. As you said, people still have a life outside the virus. I've not been out but gd said no one was out yesterday when she had to pick up a prescription - but there wasn't much to buy anyway. I saw where Walmart has all their garden aisles closed as they are not essential items. dh is almost out of coffee so I may have to go out in a day or so and see what I can get.
I did take a 'journey' to the chiropractor on Monday.
My other journey's have been to Taco Bell, Subway or Panda Express. Yesterday I journeyed to Panda Express where they had a special if you ordered online 4 bowls for $20 - basically buy 3 get 1 free! I figured 4 meals - yesterday lunch and dinner, same today. I am disappointed because they are not doing brown rice right now so have to settle for fried rice.
I have not journeyed to the store since the 6th - can't believe that long. I set my alarm for 6 am tomorrow since Winco has senior hours 6-7:30 am. Now sure I can get up that early - probably get up, shop then come home and nap! If I make it up that will be my journey for tomorrow.
I have chiropractic appointments for the next three Mondays, so I at least know I will have a journey to go on those days!
Sucks with gas prices so low but you don't need to fill up! Would be a great time to fill up my motorhome but I have to buy tires and use up the 6 year old gas in it. Finally got it down to 1/2 tank just letting it run for a while. Amazing how quickly it goes when you are driving but when parked it goes slowly.
Hope no one minds but I am bringing this to the top so it doesn't get lost in the spam. I always click on the spam so it shows as read to get it out of the way.
Interesting afternoon. Neighbor rode by on his horse. Haven’t seen him in years. Years ago he was thrown from his horse in the valley below us and my husband went down there to stay with him waiting for EMTs and helicopter. Before that he was riding by one day and tipped his hat and said “Howdy Ma’am”. I mean... cowboy had me at hello. We knew him and his wife just to wave to and exchange Christmas cookies. Watched his son grow up.
So today he rode by on his horse, Wrangler. Beautiful copper color. When we spoke the horse came over to say hello. Horses seem to like me. The guy was a cop and Wrangler was his police horse. He said they were all in a line once and someone asked the horses names. He said Wrangler and the next guy said Levi and so on down the row. They were all lying, of course, but it’s a funny story. Turns out he’s divorced now. Has been for a few years. The son is now 6’1”.
He has his 93 year old father living with him now. He has dementia. I gave him my phone numbers and said to call if he needs another pair of hands, or a calming person to help with the Dad sometime.
It was nice talking with him. Really nice Cowboy. And it was really nice cuddling with the horse. Then another neighbor stopped by and gave me a shoebox full of avocados. I recently saw someone said you can freeze them once they ripen. Gonna have to try that.
Avocados yield the best result when frozen as puree. Place peeled, cut avocado into a food processor or blender. Add 1 tablespoon of lemon or lime juice for each avocado to prevent browning. Pureeing in a motorized appliance ensures that the acidic juice distributes evenly to all the avocado flesh. Mashing avocados by hand works, too, but make sure you blend the juice thoroughly into the avocado to avoid any brown patches.
Freeze avocado puree in ice cube trays to create cubes perfect for adding to smoothies, spreading on a sandwich, or serving as baby food. If you plan to make guacamole or other dip, freeze the puree in the portion size needed for a recipe. Pack the puree into zipper-style freezer bags or freezer containers. Leave one-half inch of head space in containers.
There appear to be four main ways in which life continues to confront me that together dominate my outlook about what my life is:
1. Climate change. Time does not heal all wounds, but it does provide time and distance from the overly cruel and long assault on the senses which caregiving is to the victim who is the care giver. The daily cruelty stops and time begins passing without fresh pain.
That begins when we enter what is normally considered grief, and most people have backed up issues in the same way a flood victim might be done with swimming through the disaster safely, but hasn't had time to take in the devastation of their home or themselves without one.
When that disaster takes years to inflict itself, it usually takes extended time to fade. Victimization is both extent and duration - and dementia tends to go to town on both. Time passing after such events is usually over rated, but it does have a fading effect with enough of it.
2. Bomb shelter psychosis. The first time we go into a bomb shelter to survive an attack, we are usually miffed, indignant, and unwilling - in other words, normal reactions. As the attacks continue over years, going into the bomb shelter transforms into an awareness (conscious or not) that this is how we survive the assault. Spend enough time needing that and it gets tough getting people to come out - even when the attacks are guaranteed not to return.
3. Victimization transforming into reality. This is a form of Stockholm Syndrome where oppression becomes our state. Dementia caregivers have often had their entire lives transformed in real ways, and have managed to survive that by adapting. What they adapt to is vanishing expectations, where it might actually take more courage to come away from the surivability of that than it took to shrink into that state.
4. Reinvestment into what was painfully lost. There is a vast difference in surviving this (which almost everyone does), and reopening the spirit to a new round of life. Even when later, the memories of Alzheimer's seem distant and life feels fairly normal, the average person has developed deep feelings about burning themselves on the hot stove again.
There is a period little discussed which I believe is far more common than said, which is that even while parts of us want more life, other parts are protecting us from dangers we needed everything to survive. Our conscious minds tend not to see the extent of that with good reason, but the full mind remembers and protects from what it knows are very real dangers.
There is a wide variation in people in numerous ways. Some people are smart or learn things quickly. Some people find it hard to learn things. Some people have deep emotions and some don't feel much emotion. Some people adapt to change well, and some struggle with change. Some people are very competitive and some don't want winning and losing. Some people are very controlling and some think of life as compromises. Some people are naturally comfortable with themselves, some people have no idea what that means.
When we try to lump things into the human dual viewpoint of, for example, good and bad, we miss the complexities of how things actually are. Duality in thinking is like making fine furniture with a sledgehammer. People aren't like that and neither are you. Go back to the last paragraph and find yourself in those six aspects. Realize that many aspects were left out in using just six, for example shyness versus extrovert.
This might be interesting reading for some, but when you're in the bomb shelter and the bombs are going off, there aren't many options. It's after grief and shock that these ideas have potential to come into play for most. For extroverts who don't feel deep emotions, it might seem easier, but they have their own hurdles.
Ultimately, it might be that one universal idea that applies to all the others is the belief in the inherent validity that having life brings along the authorization to be. Our ignorant and sweeping generalizations about anyone else have nothing to do with that. One hundred percent of our authority to be ourselves comes from within us. I personally believe that is designed and is universal in the true sense of that word. Inert matter follows the laws of physics without exception. Living matter chooses whether the next step taken is left or right.
There is no reliable right or wrong choice. That is true because the choices of every other living thing and the inert matter following physics may as well be random from the viewpoint of any living organism. There is only one truly predictable thing about life. We remain alive to make further choices until we are not where both parts of that are certain.
Most people don't like thinking to these extremes. We don't have to. We can choose to ignore this, forget it, or not read it for example. That's what authorization is. It's the authority to be ourselves. Some people have no problem moving on or getting into new things afterwards. Most do. None of that comes into play most of the time anyways because we're usually in the moment. When we do look at our lives, it might be better to understand we're entitled and even responsible to that, and the more we know about what anything means to us, the better our chances of spotting more meaningful targets.
OMG. Bomb Shelter Psychosis. Last winter a young man from the neighborhood bought some tools from me. I liked him and was impressed with how he was supporting himself and working to build a future so I gave him more tools. A few days ago he called asking if he could buy a fishing rod that he couldn’t afford last time. I spent the afternoon going through he rods in my attic and found a small tackle box to go with it. Made sure the reel worked. And put together an extra drill package I thought he might be able to use. I met him downtown cause he moved and didn’t want to drive all the way out here. We talked for about an hour or more about all kinds of things, including philosophy for crying out loud. He told me he’s made a lot of money with the tools I gave him and his boss is really jealous that he got them for free, but he didn’t tell the boss my name. He showed me some other new tools he had bought. He asks a lot of questions about how I came to be in the Air Force and how I learned how to do some of the things I’ve been doing. He knew I’d be interested in his new tools. I’m really proud of him and told him so. I think it really made him feel good that some random lady in the neighborhood is proud of him. I enjoyed the conversation very much.
Then I thought since I was all the way over on the other side of the valley I could run some errands. There were a number of stops I could have made. But I found myself driving past each turn off and rushing to get home. Ran inside and closed the door and just leaned back against it hardly able to breathe.
Couldn’t figure out where all that anxiety came from. But I’ve learned to listen to myself and do what I need to do at the moment and not whatever I “should” do. Bomb Shelter Psychosis describes the feeling perfectly.
Since then I’ve been home, but everything looks different somehow. No idea what it means. I frequently find myself wondering if “having life brings along the authorization to be.”
bhv, I wrote that badly. 'Having life brings along the authorization to be' means being alive includes the license - but not necessarily the usage of that license. We're entitled to be ourselves. What we do or don't do isn't part of that.
I have similar reactions. Sometimes they're quite subtle. The crux is that I don't react to going out or doing something. I react coming back to bunker. That can be as subtle as having thoughts about possibilities on the way and there, and having thoughts about the limitations and unlikelihoods on the way back. The function is that you are having complete normality which cannot be sustained because the outlook is still visitor and not resident, and so it's back to the bunker (which also doesn't exist - they're all mental outlooks).
It used to be the opposite. I used to react to going out or doing something. In fact being around people brought anxiety and wore me out back then.. That's progress for you.
The fundamental problem for most of us is our need to belong somewhere. That doesn't become a nuanced awareness until the buildings stop burning and the land returns to some semblance of normal. That is our grief, shock, depression, anxiety, and whatever went into our bundle, have dissipated enough to notice other things. That's when this dance begins which is the simultaneous re-insertion into 'things' while at the same time still being entangled in the long tail of the rarely respected, serious stuff we went through.
If I may, you've sounded more willing recently than I am. Consider taking stock of the dungeon you're actually in and both how it's a pretty nice bomb shelter and how it's OK that we need time to come around more fully. Secondly, consider going to play golf, and reviewing your interest in basketball games (tall men), flea markets, antique car shows, and other local gatherings where your mechanical aptitude might combine with being around people with similar (even mild) interests. Don't solve. Just attend.
Yeah. Usage of that license is a good description. Also visitor, not resident.
I’ve been trying to understand what is so difficult about living alone now and realized that when I lived alone before I had that sense of belonging from school or work. We were retired for 21 years before he died and he was my sense of belonging. OMG it’s physically painful to be without that even while not wanting to return to Alzheimer’s hell.
My doctor gave me a referral to a psychiatrist because I’m still such an emotional wreck. Sometimes I think about calling. But I have a master’s degree in Clinical Psychology. So what kind of help could that person provide? I don’t think so. But I’m far from ok. I’m glad you’ve stayed here and are far better at expressing some of these concepts than I am. And, sometimes, it’s nice to talk with someone who has been through this.
“If I may...” I’ve been so happy to hear how willing you’ve been recently. I was just starting to try exploring a bit when this pandemic hit. Now I’m assessing risks of various activities, and whether I care about the risk. Gonna try golf soon. Walking with a pull cart by myself has very little risk.
Bonnie - you know well that often talking to someone else even with your degree can be useful. How old is your degree? Have you ever practiced or if you did how long has it been? Even a doctor has times when they have to see another one.
Glad to hear others 'drive on by' when they should stop. I do that so often, even before Covid 19. I can't tell you how many times I have been near Costco, wanted to go in but could not bring myself to do it. It seems to be worse now. I miss going to Taco Bell and DQ where I have gotten to know some of the staff - I miss that touch of 'life'. I miss not visiting Art where I would spend time chatting with the staff. Now I don't seem to want to go into any place where I would have to encounter other people. It seems to take all my energy to just chat with neighbors now.
Charlotte, I agree with what you said. My degree is old and I think everything they taught us was incorrect although it was the best they knew at the time. I did practice for awhile at a community clinic and at a prison for mentally ill and dangerous. (Oakridge’s comments of the prison reminded me of that time. Anytime I mention that when questioned for jury duty they send me home.). Maybe someday I’ll make the call and give it a try. Too afraid to go out anywhere right now.
It does take a lot of energy to interact with people.
Between the difficulty in getting DH ready to go out, and being in the middle of a pandemic, we hardly ever leave the house. Don't really want to go out much, either, what with having to watch DH every single second to try to keep him safe. I'm also starting to really not want to interact with people much, even on the phone, because it's so exhausting to try to act normal. How we live is not normal by any measure. Lately I have been wondering if I am developing agoraphobia.
I looked up agoraphobia, and found that it is a form of panic attack. Part of the description read: "Agoraphobic panic attacks are linked to a fear of places where it is hard to escape or where help may not be available." And what struck me immediately about that sentence is that's how I feel AT HOME, pretty much all the time. There is no way to escape, no help available, and I am at the mercy of a demented man much stronger than I am. Even when he is being agreeable, he's constantly losing things, breaking things, hiding things, stopping up the toilet, leaving things out to trip over, needing something to be done or found or fixed, standing right behind me when I'm trying to work, ranting at me with words that make no sense, and on and on. I feel like I'm constantly under attack.
I've always felt like your home should be a refuge from the world, a place where you feel most peaceful and safe. My home has turned into a never-ending nightmare. I keep having wild thoughts, ranging from hiding behind things in the closet so he can't find me to just walking out the door and never coming back. Impractical solutions, but becoming more and more appealing. Like I said, it's getting harder and harder to act normal while dealing with this nightmare.
My heart goes out to all you who still have their spouse at home. I always said I would place him before we got to those places in the disease. The staff where he is has to deal with those things, not me.
As for going places or even talking on the phone - I think it mostly is I don't feel I belong with 'normal' life people. Even with him placed I don't have a normal life or normal things to talk about. My life still revolves around playing my games, reading online, dealing with the physical pain I have (which is nothing compared to what many others have) - but I don't do anything to chat about. Maybe when the pandemic is over I can get involved in something to give my life more purpose than a caregiver.
I don’t think I will ever feel like I belong with “normal” life people.
I’ve had agoraphobia since I was a teenager.
Jan, I made a safe room and slept there sometimes after he was being violent. Or I would leave the house. As time went on I would park where I could observe the house - in case it burned down could call fire dept. he didn’t play with the stove though and he didn’t wander. Usually he’d just watch tv and go to bed when he got tired. When I came back he’d have forgotten whatever he was mad about. Took me much longer.
I got a driveway monitor (cheapest at Harbor Freight) and put the sensor in the bathroom. Then I could get work done out in the field and if the monitor beeped I’d race inside to try to prevent a problem in the bathroom. ( I had taken over the title of Poop Queen from Divvy.) Maybe Baby monitors would work for you to retreat to a safe room or park out on the road for a bit til he calms down. He might calm down sooner if you can find a way to withdraw. Don’t know if he’s safe enough to leave like that.
That standing right behind can really freak a person out.
Seems like you gotta find some way to get some help. Office on Aging social workers don’t have any suggestions?
Good morning ladies. I can tell from what you say you'all have been there and have the T-shirt to prove it. Lots of people blow smoke but have only been on the sidelines. That's why it's so hard to get help it's impossible to know the day to day life unless you've lived it. They can be so deceiving for a few minutes conversation. I'm told " Stay calm, speak in a soft voice" Day care is not an option, he won't even go see the dr. It's been suggested to hire someone to come in so I could get away for awhile. I can go anyplace if I had someplace to go, he just sits down and goes to sleep. he does not want anyone in the house. Refused to have a male come in to help him shower. If he continues to refuse to see the dr, she might order a nurse visit to check him. Most of the advice I've gotten locally is to place him, or hire in home care. There is nothing anyone can do without his agreement - he's just too strong and gets stronger when he's angry. The best help for me would be someone to help with the house, but we have such high ceilings it would be a safety hazard to ask that of them. Heck, it's a safety hazard for me the reason it isn't done. Each time I suggest a handyman to do the repairs he blows up. I did go ahead and hire someone to do the mowing, it's embarrassing to have people drive by and see it First we had a fight, then he basically told them not to come back. Day after day he says tomorrow I'll see if I can get the mower started. I laughed and said don't bother, the mowers will be here Friday am. It was day 1 again and same argument as he doesn't remember. Says, again, in three months that will be $360, for that I could get one of those big mowers. He can't believe those cost several thousand, not a few hundred, and he doesn't remember even how to use the basic one. I don't know how it is that he thinks he knows but thinking it in his mind is as far as it goes and if you say he doesn't remember be prepared for the sky to come falling down. Last week he said I'm going to buy a recorder and let you listen to yourself. Well, they don't make those anymore and look here. Just press this button on your phone and it will record what I say. I would have better luck talking to the dog, since he ignored me.
The room upstairs is what I think of as my safe room. Since it is the original living quarters there is even a deadbolt on the door. I could stay up there several days if necessary. Without repeating everything you said, I'll just say "ditto". He usually calms down fast - it's me that can't. Each outburst (always the same) takes more out of me.ive tried to explain how it makes me feel but, you all knows how that goes. He is the only person in existence, until he can't find me.
Jan, I too think what would it be like to just walk out and keep going. In fact, I wonder how long before he'd notice I was gone. Last week on a bad day I said I think I'll go visit our son in CA for a week or two. His answer was, make it a year or two. You know what actually prevents me from going is the animals. He says he's fed them, but he doesn't, and doesn't know it. He isn't mean to them, but treats them like me so they steer clear of him, which makes him mad.
He rarely does anything - good or bad. Never wants to leave the house, won't go when I try and get him to. I guess this is his fortress. The problem is his mind and lack of reasoning, and his angry outbursts. Last night I took it, then gathered my things and went upstairs. I've said so many times he isn't physically violent but can sure hurt with his voice and words. I'm not even sure he's aware I'm not down here after an hour or so. He just sits down and plays with the remote, has forgotten how to use it, till he finds Gunsmoke, and will watch it over and over 24 hrs a day. I bought him another set of headphones so I don't have to hear the noise but he'll only put them on if I ask him too. Never thinks of it himself.
Won't help plant anything, I ask, beg, and he always says ok, right after this program is over. But he can't tell when one is over and the next one begins so I know I'm not going to get any help from him. I going to forget about covid-19 and go to the nursery and buy some already planted hanging plants, frankly, as many of you have said, my life is so far from normal.....even the few friends have disappeared with the virus. I'm too old to even think of building a new life after he's gone, if I'm even around. I'm trying to make a new life around him. Have my painting supplies in order upstairs and have boxed most of my other things to donate someplace. I finally accepted I'll never be that person again. Plus the world is changing so fast I can't keep up. I'm not sure what's going to happen, but moving upstairs to sleep is the first step and feels good.
Wolf, I think I have a form of your Stockholm syndrome. I'm beginning to agree and not fight my abductor. It's really AZ that has abducted him, but me by the fact I'm married to him.
BHV, I have to agree with Charlotte. Even if you know the same information, hearing it from another person, a stranger, might let you hear a different twist. I've only had one experience with psychiatrists, was when taking care of my Mother with AZ, her actions were completely different than DH, but I had the same feelings. I was at my DRs office one day and don't remember what he said but I screamed, its easy for you to say because it's not your Mother. By the time I got home he had contacted my husband and made arrangements for me to see someone the next day. It was a Saturday, and I'm not even sure what his title was, but we talked for three hours. About many things. He gave me a different viewpoint, different things to think about and a Bible verse to sustain me when I felt like I could last no longer. When he called my husband in, DH was furious, but as usual it wasn't apparent to anyone else. I said he was mad, he denied it, but the dr kept talking to him till he admitted he was furious because he didn't know what was happening in the closed office. That's been a long time ago but was the reason I had been trying to find someone. But covid-19 had closed that too - and soonest I could get an appt was late August. I have since been told there is a walk in mental health clinic - if you are contemplating suicide. I'm not sure quite where it is but could find it.....but there's the problem with the animals. One or two someone might take care of but 8? Guess I'd better stick around and keep working on my bomb shelter. I could stay up there most of the time and just come downstairs to do the necessary things. Would work in an emergency I think.
Hugs Oakridge. I’m glad you have that upstairs with a bolt on the door. Awhile ago I was showing someone around the house, walked by the “guest” room and found myself saying, “and this is my safe room.” Boy that was a conversation stopper. More virtual hugs for you and JanK too.
Hi Charlotte, yes I've called the ALZ org, the elder assoc, and all the other places. Everyone is very nice nice, I feel like a jerk when I talk to anyone about my life. My neighbor called last night to see how I was and I said more than I intended. Her FIL had AZ but they didn't care for him. She think I should just go see the kids, but I will listen to our doctor. She said don't leave him alone. Plus, she was concerned about what would happen to me if something happened when I left him alone. So it's someone stay here 24/7 or not go. He wouldn't let anyone stay here, and GD has to work. I even thought about getting two tickets since they are so cheap, just put him in the car and say we're going on an adventure but could not predict what would happen when we get to the airport. He doesn't like to fly at the best of times so not sure I could get him on the plane and what do I do if he decides to go off on one of his tangents.
You could call me. I have that friend that lives in Yuma. When she calls she vents for 15 minutes to over and hour. Then says I have to pee and that is the end. Somewhere in there she stops long enough to ask how Art is then goes back to her rant. It is fine with me - she needs someone to vent to. Not much in my life to talk about anyway. :-)
bhv*, I was just reading an earlier post and you gotta know, if a cowboy came riding by here and stopped, I wouldn't give him my phone #, I'd hop up behind him so fast he wouldn't know what happened :)
Laughed when I read your post Charlotte, that's how my Mom was for so many years. She'd call and as soon as I said hello, she'd begin talking for an hour then say, how are you but before i could answer she'd say ok, bye. LOL. She wasn't angry though, she was lonely and didn't know what was happening to her. She one time got her address book and started calling every person in it. Then the time, which is when my dr sent me to psychiatrist, she had called when I was at work. My husband had made the little blurb for the answering machine. And she'd hear him talking but wouldn't answer her, she'd cry Hal please talk to me, over and over. Broke my heart when I heard it.
We went head to head last night with him again saying there is nothing wrong with him. "I don't tell him" - "but I do, you just don't remember". And on it went. There is no stopping him once he gets started, says give me an example - if I do he always has an excuse, if I don't he gets worse. Then today was when the mowers were supposed to come and he started in on that and continued till I finally got up and said I'd go read upstairs. Then this morning it was all over again.....there is no reasoning with him, but there is also no stopping him once he gets started on something. You can't talk to him but can't not talk to him, he just keeps getting louder and nastier. This verbal abuse continues to get worse. He takes an antidepressant. He doesn't do much of anything but sit and watch tv - but I hesitate to ask for something to sedate him. Part of the time he ok, but when something sets him off it's like a match was lit.
I guess you could say I call in here to rant. Just can't bring myself to tell any friends the real truth, and then come face to face with them. My sister really ins't interested. She hates its happened but never wants to hear anything.
We don't mind if you want to rant here. I think it is horrible that the doctor will not prescribe something to give him to mellow him. The antidepressant might even be making him worse or need to be upped.
My husband was a big strong man who sometimes got violently angry. His doctor prescribed haloperidol 2mg taken up to three times daily AS NEEDED. CAUTION I just looked this up and it is not recommended for dementia. It says those patients have increased chance of death with this drug. The doctor said he prescribed it for his Mom (with dementia) at this low dose and had good results. He said it is not permitted at Nursing Homes because they were overprescribing. I think it was known as Haldol back when I was a psychologist. It is an antipsychotic but also used for Tourette syndrome. Which is actually funny because, at the high antipsychotic doses it causes uncontrolled muscular tics.
This was before I found the VA Geriatric Clinic. As I remember I only gave it to him once in awhile, like at the full moon. It calmed him a bit. When he started getting violent with me the first thing I did was stop alcohol. Then I found nonalcoholic beer And that kept him happy. I changed my behavior and increased vigilance, like never letting him corner me or get behind me. Yes, that’s exhausting.
With Alzheimer’s he couldn’t learn anything new, but he seemed to be able to become accustomed to things. So I tried behavior modification techniques like leaving if he was getting violent and reinforcing positive behavior. Mostly, Alzheimer’s helped a bit in that if I just left, he’d have forgotten what he was mad at in 15 min. Oakridge, sounds like it takes your guy longer than that. But sounds like going upstairs helps and as time goes by the interval of his forgetting will probably get shorter.
I was beginning to be seriously burned out at that time and decided to try Daycare. Didn’t warn him. Just took him there. Said I’d be back later. I was amazed he stayed there and participated in a few activities especially when they brought in a dog. He’d get agitated in the afternoon and they quickly asked for medication. At first they gave the Haldol at lunch time. Quickly they asked me to give one in morning and they gave one at noon.
Then we found the Geriatric Clinic and the geriatric psychiatrist said she’d rather use a mood stabilizer than anti psychotic. She prescribed Depacote. That’s used for migraines and seizures in young people. The side effects are frightening. But, I thought, with Alz, who cares?? This was in March. At first it was life changing. I was thinking maybe we could even go out and do some things cause his diarrhea was under control too. I was surprised they were still giving him Haldol at lunchtime some days if he got agitated. And they didn’t tell me he almost escaped one day and got violent with the male social worker who kept him from getting past the door. I was going to take him out of the day care, but they convinced me it was good for him to be around other people and it was good for me to have a break. I was able to play golf. By August he was dead. I had like 4.5 months of hope.
I think the Depacote killed him. Small bowel obstruction. If they give your husband any of these drugs pay close attention to the color of his poop. I still don’t know why it didn’t click with me that suddenly his poop was darker the night before I called 911. Although all the doctors tell me this is extremely difficult to diagnose even with a communicative patient who is already in the hospital.
The alzconnected website spouse forum has a bunch of threads discussing other meds used with big strong men to allow them to stay at home. Seems to me Seroquel is pretty popular.
His doctor and I had discussed angry outbursts for about a year before I asked for the Haldol. He always told me I could just call and he’d prescribe it. Then, just before the geriatric clinic, he said something about that Jim would never hurt me, and I made the mistake of saying something like What would give you that idea? He threatens to kill me all the time! He throws punches now, although I’m careful to keep enough space to avoid that, especially at the full moon. Well then, he said he’d have to call Adult Protective Services for me. I said what if I give him the Haldol every day. He said try that and if I didn’t call him by Monday he’d call APS. I called him on Monday to say we’d had a calm weekend, which was actually the truth. Also, we had the appointment with the geriatric clinic.
I know a lady whose husband was in a motor wheel chair who would use that to back her up against the wall and otherwise abuse her. She was in her 80s and a very small, weak person, unable to defend. She had to call the Sheriff several times when he fell. After a few times they forced her to place him somewhere. Their estate wasn’t in order and she lost some property that should have been her separate property as opposed to community property. The Alzconnected forum has a number of horror stories involving APS, law enforcement, etc. Good lord it is so difficult to get help and not hurt.
Now I keep thinking maybe I should have taken him out of the daycare instead of medicating so much, and learned to ignore the violence after 15 minutes like he did. Why did I keep holding on to the righteous anger? I thought I was doing my best but it wasn’t good enough. But that’s not true either. With Alzheimer’s, nothing is good enough.
I almost didn’t post this Oakridge. I don’t want to make things worse. But when I was in your position I was glad to have those stories from alzconnected so I could think things through before making a phone call. So I knew the sorts of things the authorities might do. My advantage has always been that I am tall, know some judo to defend myself, and was younger and nearly as strong as my husband. So completely different situation than most.
Most of the behavior drugs they prescribe to dementia patients are off label and come with warnings pertaining to giving to them. But, when you run out of options, where it is being hurt yourself or others, then why not? Sometimes you have no options for your safety and even their's. We have to remember they are dying anyway, so if they have a better quality of life with the drug vs long life with slowly dying - I would choose the quality.
Jan K and oakridge, I feel so bad that you're stuck in these situations. It's hard enough to have a dementia patient at home, but the behaviors you are both dealing with are awful. bhv, Dont't beat yourself up. Charlotte is right. Most of the drugs they use on dementia patients are off-label and many have dire warnings. I was lucky in that my husband responded well to Ativan (lorazepam), which is fairly harmless.
Oh, bhv, and others, please don't ever be sorry to post your experiences. They are so much help for me. I was almost transfixed as I read this. First, as I read it I thought it was Haldol the Dr had prescribed for my husband 30 yrs ago - which I think was the beginning of his problems. But I looked it up and it was most likely Halcion, he prescribed it since dh rarely slept more than 4 hrs a night. I don't remember how long he took it, but I read an article saying how dangerous the drug was and my husband stopped taking it - period. No tapering off, didn't call the dr, just never took it again. Was not long after that he had his first "incident" - the neurologist said he simply died and was revived. He was at work and there was a Vietnam vet, who was a medic, in the next office. I think I've posted here before how they thought it was a brain tumor but could not find one - and we spent months going to specialists and they could never find what caused the problem. That was Oct. Dr finally said it would probably never happen again. February, early on a sat morning still in bed, he made a sound and I felt him turn to me -- thinking he was getting amorous, I turned to find him frozen - total paralyzed. Called 911, we lived in the canyon so it took almost an hour to get there but a guy who lived on the other side of the hill, who was a volunteer fire fighter got there before too long after he heard the 911 call. Dh stayed that position, apoxic, till just minutes before the ambulance got there. Took about an hour to stabilize him, then another hour to transport him to a hospital. Another week spent with every type of specialist. A few months later he had a third one, again at work. When I arrived at the hospital he was conscious but had no idea who I was. The attending neurologist said they simply did not know enough about the brain, he died and came back to life. One day it would happen and he wouldn't be revived. That was when he took early retirement at 55, and a year later had his first bout with cancer - was given a 50-50 chance of living 5 yrs, saying it would come back and when it did he would have maybe 6 months, that was the reality. Without boring you with the details, we sold everything, moved across the country to a slower, easier pace of life and made arrangements for him to die. That was 1996, and he is not only still here but has also survived throat cancer too.
BUT -- after the first incident he was never the same. They said there was maybe some damage done to his right temporal area - but he began to lose....not so much his memory but "things". ie, he stopped by the hardware store after work to pick up spackle and called me almost crying, he had walked up and down every aisle and had no idea what spackle was or what it looked like. It's hard to describe but there was a definite change in him - noticeable only to me. We moved to the midwest, bought our dream property and built our dream home. Early 2000's he began to lose interest in the farm, let the fields go - said it was naturalization...I had to drive 50 miles every morning to be at the radiation center by 7am, a 15min treatment and an hour home. They had tried a new method of surgery but he could not attempt to speak for 6 months. Everything had to be written out. Although they did what they could, he suffered terribly with the radiation and was never again the same person. We finally had to sell our farm and move to town to be closer to the hospital. Each year I noticed more and more of a decline. I could not get his doctor to even consider it was anything other than normal aging, but I had taken care of my Mother with AZ and knew the symptoms. Finally got him transferred to my doctor, and we eventually saw a neuropsychologist - his feeling was obvious memory loss, most likely dementia of the Alzheimers type. When he heard that dh walked out of the office and would never go back, and to this day will declare there is nothing wrong with him.
I have to agree there was probably damage done with the early 'dying' episodes. Then the radiation and other things just kept adding to it. I am sorry this happened, robbed you both of your 'golden' years.
#2 :) I've posted many times about our problems and how I've tried to solve them, sometimes good - others not so. I'm tall, 5'7" and although not as strong as I used to be I could still put up a fight if it came to it - unless he were able to hit me in the back or someplace else he knows would disable me. Dh is not quite as tall as he used to be, probably only about 5'10" maybe 5'11" now and doesn't weigh, nor have the muscle he used to. However, he could still be a formidable opponent when he is angry - I would not be foolish enough to take chances. He was well trained in law enforcement years ago and I swear remembers everything he's learned about how to take down someone.
I am very wary of medications for him, he tried Namenda and was terrible. Aricept may or not do any good, I doubt it. I don't know that he needs a stronger anti-depressant and or something to sedate him. In an emergency, say a fall where he couldn't help, I would be hard pressed to help him and if he was taking something that made him sluggish, I probably could not. If he took something that made him angry/violent more than he is now, I doubt I could handle him. I have actually gotten my derringer out of the dresser and keeping it where I could get to it if necessary. I wish I knew the words to describe him, he's never really tried to hit me, threatened me though. He is extremely passive aggressive, causing mental anguish - really mental abuse. He can go up in a flash, and get so angry so fast, that I'm beginning to wonder if/when he will actually strike out. My big dog is very protective, I always introduce new people as this is a "friend" but if it were my husband I don't know if he would jump in. We have no neighbors close enough to could hear me call out. I have mentioned my GD has something set at dispatch if a 911 call comes in from my number she is immediately notified. They are both law enforcement, and oddly enough, the young boys I've hired to mow for us are the local Sheriff's kids and he always comes with them as they are too young to drive. He only lives about 3 miles away and does know dh has az. But none of that is any good, if something unexpected happened and he was able to overcome me. We do have our estate papers in order so that much is taken care of.
I've posted I slept upstairs after a bad argument and slept so good I continued. I sleep so much better, and he happened to say he was sleeping better too. At first he was angry, then bitter, but last night, I had set some bombs upstairs - this weather is a breeding ground for every kind of insect known to man -- so I slept with him again in our bed. I went in earlier than him, but could not go to sleep - was like it had always been. Today he went up with me while I made the bed with fresh linens, ran the vacuum in every nook and cranny, moved some things around etc. We worked till about 4:00 and I was ready to drop. He asked if I was going to sleep up there tonight and when I said yes he looked a little disappointed but didn't say anything. Now, my long way around point is, things seem a little better. It's like he's meeting me anew every morning, even though I'm up much earlier than him, he is most always pleasant when he gets up, and comes over to kiss me and say hello. Maybe he thinks I'm someone new, LOL.
I would say maybe you sleep better by yourself because when you are in the same bed with him you never know if he will attack during the night. You basically sleep with 'one eye/ear' open. Upstairs you feel safer so you get a restful sleep.
Oakridge, sounds like he can get used to the idea of you sleeping upstairs. I found it interesting that my husband liked it when I slept with him but didn’t have a problem when I slept in the other room. I like the set up to notify GD if you call 911. I live out in the country but have a neighborhood women’s group and have several good friends within a couple miles of my house. I asked two of them if I could call any time day or night if I needed to get out. They both said yes. I never did call, but it helped me cope to know that I had that option. Several times I went out for a walk, even late at night, and called my brother on the east coast. Suggestion: if you don’t have neighbor friends like that, talk to that Sheriff. Make sure he knows your car. Ask him if you could park in his driveway if you needed to escape for a bit even late at night. You wouldn’t have to disturb him. He might have other suggestions. I’d make sure never to tell your husband about your thoughts re the derringer, but, yes, I’d keep it handy. Re your concern about being overcome, I’d find a way to keep your cell phone on you at all times so you can call 911 or that neighbor Sheriff. And using behavior modification like when he goes off in a flash, leave the room, go upstairs, go outside. Doesn’t have to be for long. If he’s still going off when you come back, leave again. He can’t learn, but sometimes repetition will change behavior.