Have not heard from you and was wondering how you are doing and how is Lucy?? I hope all is as well as it can br...
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Dear Judy and Deb, thank you for your concern. Well.... I am still alive!!!!
DW's condition appeared to be stable for the time being. No better, but no worse than before. We are holding tight till her neuro appt next week. As you all know, she is at the tricky early stage when there is confusion but denying it, and when she is still very physically capable that she is more than an emotional and physical handful. Seems the current theme is about the gaps in her memories, which seem to be more frequent and larger. As I explained to her son, in a chain of events A to B to C, to D, she might remember A, B, and D, but forgetting C. Without C, the entire memory has no context. She gets agitated and angry when conversation requires recollection of A to D. Sometimes she fills in the missing "C" with fiction, resulting in this far-fetched confabulated story. As all of you, especially Deb, have always said, they will truly believe their own stories. She seems to increasingly live in the moment. Though she has grander visions of where and what she wants to do, she seems to have decreasing awareness on the discreet steps it takes to get there and how to coordinate them into any sort of coherency. The worst for me is she has taken to blaming me and my son on just about everything and anything that runs contrary to her idea of what should be. I took son to BC and PNW the last few days to check out some colleges, while her eldest son from Vancouver (your neck of the woods, Judy!) came and visit and kept her company. We have yet to talk and exchange notes, since I returned only yesterday. The main question on our minds right now is how much understanding does she really have? If left to talk on topics of her own choosing, she seems fine as she can ramble on for hours unassisted. However, if asked a question for clarification, it becomes clear that her grasp of the topic can be rather shallow. If challenged to clarify inconsistencies, she can easily turn agitated and defensive. For example, when she was retelling a certain story from a week ago, one of us might innocently ask how could that be since the person in the story was not around last week. This would instantly get her on the dark side with thunder and typhoon threatening. So we are all learning. Certain things we just learn never to do. The downside is that, in order to avoid bloodshed, I have to emotionally disengage somewhat. And this precipitates another issue, complaints that I am emotionally distant. Sigh.
It is true that she is in her own world. My late FIL was always in his own world and no doubt about it. I am still amazed that my husband was able to be so nice and patient to him. I thought it was co-dependence. But that helped and my late FIL believed in my husband. Only I was the problem as I denied that they worked together which is true. My husband only worked in his late Dad's lab for 2 summers in his college time. That is all. Nothing more. (One paper with his name.)
Maybe you can also pretend that you are on her side. It is harder if we want to be rational. If you are in her world thinking like her, it may be easier to play the game. That was what my husband did. I couldn't as I found that was unfair to my husband. Anyway, the way out is to be like her. One time my late FIL insisted his lady friend is in 2 persons (one works and the other one was at home and a former wife of a colleague.)
My husband tried to tell him it is not so on the phone. Well, he then tried to go out in the dark wanting to find her. The caregiver called back and asked my husband to calm him down. Well, we "finally" agreed with him. Well so he said "Thank God we are on the same page!!" He just forced us to think his way.
He continued to think so until he forgot about her in the nursing home.
Maybe it is the game you need to play. If you are too serious about the facts and fantasies, you would feel very hard. Relax and make it fun.
BTW, sometimes we cannot really lie or pretend the thoughts are OK. e.g, when my late FIL believed that this caregiver would marry him and that kind of thing. Or when the lady friend rejected him, he was very upset. At that point, distraction or comfort can help. If she insults your son and other people, maybe it is good to have distraction. It is not good to side with her for things like that.
I get it Luau You have explained the early stages of dementia very well. They are right, you are wrong, and you don't dare question them because the confusion it creates in their mind will blow up in your face. But if you don't give the right feedback in the right amounts... Wait... they don't remember what you have invested and given them.... then you are evil. It is like wandering through a house of mirrors where everything is twisted and warped.... and it is our impossible job to figure out what to respond to. All you can do is the best you can and hang on for the long ride. I have been through the entire process several times, and in my view, you are in the worst of times. I didn't understand this statement when I first heard it but I do now.... sometimes it has to get worse to get better!
Hopefully you will find some answers at her appointment. At least you will know what you are dealing with and that allows you to make plans. I am so glad you are taking your son to investigate colleges. He needs your guidance but more so he needs that quality time with Dad away from the drama of Mama! Kudos for you!. And I hope your health has stabilized? I think of you often and hope things are as well as then can be with all that you are facing.
You have explained the early stages of dementia very well. They are right, you are wrong, and you don't dare question them because the confusion it creates in their mind will blow up in your face. ...... and in my view, you are in the worst of times.
In truth, all I was doing was summarizing my observations of my DW. I truly did not intend to explain the early stages of dementia. Now that you have pointed it out, I am sad that the summary fits so well.
I like to think that actual worst is behind me. The worse was early this year, when our family finances were in shambles and I had little control and no idea what was happening. Back then, I was more in a saving myself mode. I think my own health issues arose because of the stress of uncertainly and insecurity of my own livelihood. Now I have finally regained a modicum of control; my own financial security and future are no longer in doubt. Now I can truly turn my attention to addressing her needs.
Of course I don't know what will come next. She is still driving, and our family made the very hard decision to let it remain status quo, to be re-evaluated at the end of this year. Or sooner if she shows signs of another downward step. She wants to take a class at the university, and there is only 1 way to get there - drive. We decided that her driving is good enough, and her taking the class is sufficiently important for her frame of mind. Aside from that, we are trying our upmost to limit her driving time. It was noteworthy that she still talks about getting her psychology degree, and what she wants to do once she has her degree. But at her rate of 1 class a semester, providing she passes these classes, it will take her 20 years. Funny, this larger picture has not crossed her mind, and I have stressed to her sons that they should never bring this up. I think it is this hope that plays a large part in keeping her going. So... at my ripe old age, I am putting not one, but two dependents through college. I should be sipping mai tais by a Kona beach resort, and I should be trading my 11 year old car in for a super sports car. At least I know I won't be out on the streets on welfare, as I had feared earlier this year as a real possibility.
I'm glad this thread was started and that Luau, you have responded. I too check this board almost every day to see if there was a new post from you. I'm glad to hear your professional situation has solidified so you have one less trauma to deal with. Now, hopefully your health will be more on the front burner and you can take better care of yourself.
I wanted to mention that before I was aware that anything was going on with my parents, (I lived 1000 miles away and only saw them a couple times per year if their health was good), the first "clue" that something wasn't quite the way it always had been was when one or the other of them became separated from their cars.
I'll spare you the details...but it usually involved going somewhere familiar but parking in a new location, going inside to run the errand, or do whatever it was, coming out to the "familiar" place where she usually parked...and, no car. Then things would just unravel. Once the routine was broken, she didn't know what to do.
I realized well after the fact that people at church, casual friends, etc. wondered why on earth I continued to "let" her drive...but when I would go to visit, these episodes were not obvious to me...so I really thought they were exaggerating the issue.
Her physical skills to drive were fine...it's just when something upset the normal routine, she could become confused and pretty much lose track of where she was going, and then didn't ask for help.
I know this sounds obvious, but if you have an episode of Lucy and her car being separated or lost, be sure to look into it and take it more seriously than I did.
As we start the academic year all over the country, I hope things go smoothly for you and your family.
Oh -- if I may ask...what was Lucy's son's reaction to his mom's condition when he stayed with her?
My father was found at a shopping mall one Sunday afternoon. He had dropped my mom off at the optician and went to park the car.
I am amazed that you are optimistic now. It is good to know.
However, we never had fixed mind about my late FIL. Although now that he passed, we are stable, but I was worried about him all the time. Didn't want him to go to the hospital. Didn't want him to end up in the mental ward... Didn't know how long money would last for the expensive NH and etc. Hope the nursing home would keep him forever... All kinds of fear that he would not adjust and etc. It was not easy.
Well the last time he drove was in 4/2006. He got lost going to the doctor's old office and came home fine. So he was aware of it. He didn't renew the license that Nov. after he was diagnosed with Alzheimer's. Soon he could not write or read properly after that.
But everyone is different. You can give Lucy a try until she gets sicker. You may hire some driver to drive her if she will get lost but wants to take the class.
Sure I hope you will still retire fine. But you will never know what is to happen to her. Do you have the funds for her nursing home one day? Is she going to get medicaid? Does she have long-term care insurance? It helps if you prepare more for that details.
I am sad that you are able to explain this stage as well. I do not wish this on anybody. But you do have acute observation and explanations that will serve others well. The early stags are so difficult to understand when dementia is explained as "memory loss". There is SO much more to it.
I do agree that the physical ability to drive a car is more than likely in tact. That is a function of long term memory. It is the ability to use good judgement, assess a situation, and know what to do in the moment that gets them in trouble. Just be aware of what is going on... and if she is driving then ride with her while she is driving to make an adequate assessment. I had to laugh because a sister was fine with Mom driving... but would NOT ride with her
When we look at our lives as a whole we can find situations that brought us to where we are now. Some are good and some are bad. But in the frame work of the dementia journey you are sitting in what I consider the worst of times. We struggle and try to get our house in order and then this dementia issues comes up and can change that world we so carefully crafted.
As for the class at the university, I wonder if she is setting herself up for failure. Now she doesn't get the big picture. She doesn't have a clue that something is very wrong. She thinks, as she always has, that it is going to be just fine. My best guess is that sooner rather than later there will be a huge excuse created why she is dropping the class. This is what they do when they are unable to grasp what is around them. Yes, she does need hope to continue but be aware that she will set herself up for failure. When she comes to you with complaints about the process or the professor that gives her reason to quit... agree, validate, and allow!
I understand your feelings about where you wish you were vs where you need to be now. It's a bummer of immense proportions. If somebody had told me years ago that I would have spent the last 15 years caring for parents with dementia I would have been shocked... but here I am. I wish I could travel now but instead I am lucky to get a half day on the cabin porch while I wait for the insurance inspection. The last time I have seen my beloved ocean was ... years ago. With the fall issues I can't even have a cocktail on my own patio because I never know when that call will come in which requires my driving. But we can't look at all the negatives and survive. You have a wonderful son who is mature enough to deal with what is going on (at least most of the time) and he will benefit from the lessons he is learning. You may not have that sports care but you have a degree of financial security at the moment. Lucy is headed for a diagnosis which is a huge step. There are small things along the way to be thankful for.... including that fact that you are dealing with your own health issues It is a rough road but one that can be navigated. Along the way we learn more about ourselves than we do the disease. If you had ask me 15 years ago if I would survive this I would have doubted myself. Today I know nothing can knock me down because I have survived
<i> As for the class at the university, I wonder if she is setting herself up for failure. Now she doesn't get the big picture. She doesn't have a clue that something is very wrong. She thinks, as she always has, that it is going to be just fine. My best guess is that sooner rather than later there will be a huge excuse created why she is dropping the class. This is what they do when they are unable to grasp what is around them. Yes, she does need hope to continue but be aware that she will set herself up for failure. </i>
That's a good point, Deb. In fact, we have already been there. Done that. She also took a class just this spring, for which she received a C-minus. Somehow she got it in her mind that she got an A for the course. When her son challenged this, she backed it off to a B-plus or something like that and then changed the topic. So if all goes as anticipated, she will think she will have done well in this class as well. The only thing I have to be mindful of is not to let her sign up for a whole bunch of classes but ending up dropping them, but I still have to pay for them. This happened before, and I learned.
To Teteri, sorry I gave the erroneous impression that my profession life was ever in jeopardy. What had precipitated the financial crisis were some poor judgement and indiscretions by DW last year. For years my pay was auto-deposited, and DW handled the household bills and finances. Then at beginning of 2012, she told me that I wasn't giving her enough money to run the house. I knew the entire month's money entered the checking account on the first of the month. It was only the 9th, and the entire month's money was already spent. Later I tried to book a business trip, but my charge card was declined. Turned out all my charge cards, including my business cards were maxed out. For about two months, there was no money in the bank, no credit, and no means to pay bills, mortgage, buy groceries or gas except waiting for each paycheck. I had to dip into my son's college fund to pull us out of that hole, and that made me feel very bad because that fund is very sacred to me. This was when I found this board and all of you. What came next were a few months of very stressful moves to regain control of finances and to pull us out of the mess. We are still not completely out of the hole, but the damage is contained. It was during these moves that Lucy started calling me a controlling abusive husband, which has now become her favorite complaint.
To answer Nina's about being in her world vs real world... there is a line, and it is impossible for me to be always in her reality. I am the caregiver. So by definition I am the guy who has to limit her activities to what is realistically possible. Sure, I will play along on some matters, i.e letting her believe she got an A. On other matters, I cannot. I am the guy who says enough ice cream, or no more martinis. I am also the bad, super-controlling husband who took away her credit cards and no longer grant her open access to the money. I can say these as nicely as possible, but still I am the bad guy who limits her. She is looking for someone to blame for her unhappiness, and I happen to be the guy. Her son, meanwhile, is coming up roses. He came all the way across the continent from his busy schedule to visit with her... etc etc.. Little does she know that I paid for his tickets. To answer Teteri's question: her son's main reaction: she really likes to talk, doesn't she? She tells the same story over and over again, but doesn't have a clue how she is coming across.
I know what you mean. No, I am not saying you don't set a limit or what. Just saying per conversation, don't worry about her nonsense. Well my husband took away some stuff from my late FIL when he said the wrong thing. He accused my husband's field saying DNA does not make sense from the chart. So my husband put it away. Oh yes, I took away the checkbooks and he was blaming the caregiver for 3 days.
The other thing is we were never the constant caregiver daily so it was easier to play such game for 10 days each visit. The caregiver just ignored the fantasy and took care of him.
No, I am not saying no limit. Just don't bother to analyze too much about her behaviors.
Also she had seizure, right? Can she drive? No more seizure?
Also she had seizure, right? Can she drive? No more seizure?
To my chagrin, the neurologist thinks it is under control, but further tests are pending. Nothing much I can do for the time being if her neurologist opines that she is okay. Here, I would have reacted differently a few months ago, but that was how I earned my heart attack.
About the caregiver vs financial overseer... you and your husband can do the financial thing, and caregiver focuses on rendering care. The difference is that I am one and the same. I make an unpopular decision, but I have to sleep with her, eat with her, and live with her. Also your FIL's finances are separate from your own, which makes it easier for you. DW's finances and mine are one and the same. This make it much more personal for me, and her miscues directly threaten my security.
Anther thing I don't get. Here is a person who maxed out every card she ever laid hands on, and who hasn't had a job in 7 years. Yet, American Express, Chase, and every Tom Dick and Harry bank send her tons of card offers every day, with outsized credit lines. What's wrong with them????
So she has already experienced the fantasy "A"... and that was in the spring. It could be worse this time. If going to class and pretending is ok with her then it might be worth one more class to give her that level of independence and validation. But you are right not to let her sign up for multiple classes that you have to pay for. One step at a time.
I do remember Lucy's spending you into a hole that was all but impossible to recover from. Glad you had resources to fall back on even if it was from that college fund. There are always grands and loans that can be used and paid back later to get you out of that situation. At least you are afloat one again and have the control you need to make it stay that way. Bad guy, perhaps in her view, but that's ok! You are doing what you had to do for yourself, your son, and for her.
I do get the difference between being the bad guy that limits finances, driving, what they eat, what they do... and the care giver that has to live with them while doing all that stuff. You don't get to go home after supper! You don't get to walk out when she gets upset with you and leave her to others to handle. You are the one that has to develop the tough skin, take the abuse, and do it again tomorrow. It does create an emotional separation. You truly want to shrink back but then you have to step up instead and be the bad guy one more time. I applaud what you have been able to do so far. Between Lucy, your son, and your own health concerns you have done amazingly well Perhaps this is why I worry about you when I don't hear from you. I understand the tough journey you are on right now.
Did the son not wonder why Mom was repeating herself over and over? At least he came so you could get away. Do it again!!! He will eventually ask what is going on with Mom.
%&*#&^$^% is all I can say to the doctor's that gloss over hard decisions like driving privileges, say it is ok, and leave the hard stuff for you to do. Seizures are handled more strictly than dementia here. If someone has a seizure the doctor is supposed to notify the state, and license are not reinstated until they are seizure free for a year. Yet there is no reporting requirements for dementia. One thing you can do, if you are concerned about her driving, is call the Alzheimer's Association and ask for information on a local driving testing company that does cognitive assessments. They will asses her physical and cognitive ability to drive and determine if she should keep driving. That way the monkey is on their back not yours Watch for new dents and dings and occasionally get in the car with her and let her drive. That way you will KNOW how she is driving!
As for the card companies... I would love to strangle them all. Between the card applications, charity request, and product sales mail... mail was a quagmire of financial bombs. The fact that you cleaned up your financial situation makes them think you need more?
. Between Lucy, your son, and your own health concerns you have done amazingly well Perhaps this is why I worry about you when I don't hear from you. I understand the tough journey you are on right now.
Did the son not wonder why Mom was repeating herself over and over? At least he came so you could get away. Do it again!!! He will eventually ask what is going on with Mom.
i really do feel your concerns. You Deb and everyone else on here. I can't begin to express how much it means to me. Like most of you, I pretend to be superman. But at times, I am way mortal... and flawed. Like tonight. Icame home and once again she decided not to eat with us during dinner. I didn't have the energy to beg her. Later she came out complaining how I never want to spend time with her, citing how I always go to gym on weekends. Went ballistic when I pointed out that I always workout in the mornings, and she has never been ready to go anywhere until way past noon. Matter deteriorated from there. Then I found she had gotten hold of new vodka bottle, and she was having her martinis. Tonight I did not have the strength, or the will. All you guys may think badly of me, but my first thought was, good. hope you hurry up and drink yourself down to the next level where you are too brain-dead to pick fights. Tonight, I didn't say a word. I grabbed a beer, my first in weeks, and sat outside. The night was clear, with a gorgeous full moon. I felt good.
Son does get it. We had talked and explained, but this was first time he really had to experience. Even still, he got the "nice" Lucy, not her nasty twin that I usually had the pleasure to deal with.