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Younger-Onset AD or Other Dementia
I have been very brave until now.
But the fear is starting to set in as I start to lose the meaning
of words and the fear of getting locked up because of not being understood on
what I may say or say the wrong thing without knowing the meaning of what I
say. As you all know it once happened already
with the government and I was able to speak up for myself. That is getting
harder to do and people like AA thru me under the bus so why would not every one
else. An i was popular then and had friends at the highest levels. It is starting to get a bit scary.
Of course you're scared, Michael. Anyone would be in your shoes. You can be brave and admit you're scared at the same time.
Maybe this thread would be a good place for discussing communication in dementia -- how words and phrases begin to mean different things both going in and coming out. How fear can present as anger in both PWD and 'normies' caregivers and the rest of society.
I am not sure I understand what you are asking. I am not sure I now
understand communication. I would probably need to speak to someone who can decipher
the information. Who knows what words and phrases begin to mean? That is part
of the problem. I am not even sure about
fear being anger. I am sure it is there with all the other crap in my head but
not sure any more.
Michael, I have been pondering your post. Several points come to mind. You question your ability to understand what is said to you. I find the same thing at times. I lower my expectations and don't interact so much, especially if it involves deep conversations or arguing, such as about current events aka politics. I can't deal with heavy conversations. Michael, I think in this area you will have to learn to cut yourself some SLACK. You have worked so hard and for so long. Now it should be okay if you cut back a bit. You deserve a break!
You have mentioned in the past not being on the same page as your family. We have to accept that caregivers will do what they believe is best. Now is the time to make important desires known. Other desires, we may have to trust the family memberto carry out. I can't speak much to this since I am not in this situation, not having a caregiver.
Michael, you say you are afraid of being "locked up"as you call it. As for me, I am looking forward to possibly living in a senior community. Many PWDs and their families want them to remain at home for the long haul. And this is doable. The main reasons for alternate placement choices are wandering, uncontrollable incontinence, or an overwhelmed caregiver. I don't think not understanding is a reason for placement.
Michael, something very important I learned from Alz+ is to be able to examine fear with interest and to break it up so it loses its power. I hope you can examine your fear of not being understood and make it less fearful. In any case, I'm with you, Michael!
Michael, I've been pondering how to best explain difficulties in communication. But basically it is where one prrson hears an attack when the other person was either making a statement or asking a question. This happens a lot on the internet because we can't see facial expressions or body language. I have also spoken about how high-functioning autistic people are very literal and can sometimes say the most tactless things without realizing it. It takes someone who is used to it not to fly off the handle from hurt feelings because they understand the person really didn't mean to sound the way they did. I have also said how talking to my autistic spouse is a lot like talking to my mother in the earlier stages of her dementia. I think what is going on in the brain is the same kind of change.
I fully understand that a person with this kind of change can very easily misinterpret what is being said to them, because communication is a two way thing. I've seen a few threads go off the rails for that reason. And that's what I mean by trying to find a better means of communication. Or at least acknowleging the problem.
Thanks so much for the input Iris. I wish it was that easy but
sadly I have gotten my self in a mess to buy and build this house. It is very stress
full and can’t wait to be over. My wife is way out of her league in this and I
am trying to help but terrible at it do to member and poor planning. I just
pray it will turn out okay. At the very least my wife will be in a great place
for her remaining years. So I need to figure out how to get by all of this until
it ends. The good or bad news is she will also retire when al of this is over
so she will be home with me and hopefully get me out to do more exercise and
Unforgiven - I will be the first to tell you how I misunderstand
things as my wife points it out to me all the time. And it its definitely
getting much worse. Being the confident person I was once makes it even hard to
accept I don know. I am the one that did
all of the complicated things including readying legal documents which are not
easy to read by far. Not sure if I will ever get it because I never trusted
anyone and that is what made me successful. Works good when your brain
functions but not as well now days. The sad problem is with all my issues I am
better then many. I still see things that most do not see. I have always been
blessed to have that skill.
Michael, you probably could handle many things at one time. You can no longer multitask. Take one task at a time. Break things down into steps. This works for me.
Also, Michael, I get it. The smartest guy in the room is still in there, but lately the words out of your mouth seem like they get translated into Mandsrin Chinese and back to English by a bad Google translator, totally meaning something different from what you attempted to convey. And our words are getting screwed up by that same bad translator. That's what semantic dementia, or any other kind of damage to that area of the brain does.
So when you say you never trusted other people, you never meant to sound paranoid. You meant that you never trusted other people's judgement or perception of a situation above your own. I'm the same way. I always have to find out for myself, even if it sometimes means asking pointed questions.
I have to ask, though, back in your high-functioning executive days, if you told a subordinate to do something or organize something a certain way, how would you have handled it if they refused because they thought they knew a better way, and it was obvious to you that they didn't?
I had changed my mind and we had an opportunity to get out of it multiple
times. Wife moved forward with it even when I raised concerns. To late now as we are settling on Monday.
That is easier said then done. If I relaxed, I would end up broke.
Not that I may not now.
Ah, Michael, you seem to suffer from hypervigilance the samr way I do. It's that scary feeling that things are going to go into the toilet if you don't pay close attention and have perfect control. I think I know why I suffer from it -- most likely because I had a childhood where things were completely out of control, and some things in adult life tended to confirm it.
Do you feel that your wife is less capable of making sound financial judgments than you are? That would be something to ponder. I can't recall whether you see a therapist or not. More importantly, was there ever a time in your much earlier life when you were not in control and it terrified you on an unconscious level? Because that is what creates control freaks like you and me.
Can you imagine how it was for me over ten years ago after my father had died and I began to see my mother making basic arithmetic errors and then very poor judgments regarding the largish sum of money that had come under her control? Like it or not, this did affect the future security of me and my son, as I had pointed out to her that she now had a fixed income that could see her to the end of her life if she budgeted and lived prudently. She was the woman who tought me how to balance a checkbook and handle money, so she was definitely capable of understanding it, but suddenly she wasn't. As time went on, I had to be her bookkeeper, balance her checkbook, install software on her computer that would handle the math for her, and help assemble the figures at tax time. I could see things going from bad to worse, but I had no control over her spending which was eating away severely at her principle, with no more windfalls coming in from my late father's self-employment as a free-lance architect and nkthing left from my grandfather's estate to sell off. At least I didn't have to worry about mortgages because my dad had inherited the house from my grandfather and was owned free and clear. Some friends who didn't know this were pressing her to downsize to a smaller rental apartment which would cost her three times what the property taxes and maintenance cost her to live in the house as it was. The house, while livable, was in no shape for sale, and she would have lost money on that deal as well. Have you ever seen someone about to make a horrible mistake and been unable to stop it? I think you may have, which is why you still like to be in charge to this day.
I don't know if you have to worry or not. I'm not entirely clear on whether you are building a house or buying one to renovate, and dealing with financing for that would be difficult for me, I know. Possibly your math skills and ability to predict future consequences may still be intact and better than those around you, even if you can't express yourself so well anymore. I empathize.
Sometimes, though, we have to let go and trust our advisors and advocates. I finally let an accountant do my income taxes this past year, and the charge for the services were worth it in terms of the stress to me. Stress and worry are not good for anyone. I'm consulting a financial advisor tomorrow about the best investment options for my mother's life insurance money and what little remained of her retirement money. Up until now I used Vanguard for my IRAs, using my own brain to pick the investment funds. But it's relaxing to let someone else do the work for a change. Give yourself a break. You can't be Supermsn forever, and neither can I.
Unforgiven - I have now doubt I know more then my wife by far. With
all of my dementia I have better ideas. And she is a very smart person.
All my life I could see what others did not see. I went against all
my management in my company because I believed in something they could not see.
They all shied away from me and my direct boss made it clear that if it failed
I would be looking for a job. I did not have to do this but I believed it was
the best thing that could happen for the company. I put them above me. 2 years
latter they all came to me how I was discovering all of the failures before or
just as they happened. I told them it was because I had made the decision to go
forward on the product they were all against me on. They al want part of it after
Its been like that all my life.
I have changed hundreds of CEO minds since I was about 25. All the people would come to me for all kinds
of advice and I was probably right 99.9 percent of the time. So this is not an illusion
in my brain but I got real results done all my life in the most efficient way. I
always said there are many ways to do things but there is only one right way. I
always did it the right way. So based on that it is now hard to except things
even more for me then others. As someone recently said to me “the help of
others ids killing me” That is so true because the frustartion that they cause
is worse than having the dementia itself. Watching people around me trying to do things
that are so easy and they stress over them because they do it the wrong way and
refuse to change when you try to lead them. They also keep dropping the ball
when I trwao out things to do that they don’t do. Do they not listen to me because
of my dementia or are they just stubborn and it all goes south because of it.
There is no doubt in my mind I was a very gifted person, just look
at what I have accomplished in the dementia arena and that is with dementia. I
have done what no other person before me was able to do. Ther are many now trying
to folo0w me and are trying to do what I did. I lead the way for most of the advocates
I am buying property for the land. I need to demolish a house and
seek many approvals before building a new one. My settlement is Monday and my
wife did not think to reach out to the insurance agent till the other day. He
refused to cover the property so she now needs to find insurance under constant
stress. I told her early on about calling our agent. Never did.
Its many issue like that that are driving me crazy. If my wife is
any indication of what other caregivers are going thru I fell they cause all
the stress they have because they refuse to change and are in denial. That is a
fact from what I see. Life could be so much easer if they would learn to
Is there anyone her I can send you a email of a picture I have so
you can make it smaller so I can added it here. The people who helped me at AA
are no longer there and their system stinks because of all of the limitations. They tell me it will be changing It can not
happen fast enough.
Wow, Michael, that is an ambitious project you have there. I know from caregiving myself how much is on a caregiver's plate. Things slip through the cracks.
Back in my days I was responsible for building this building I was responsible
for all of the infrastructure and the data center. . http://www.jayrickey.com/2013/03/19/cole-buying-pnc-office-building-in-philadelphia-for-74-7m/
I had to move it all from one location to an other which took about
3 months of work just to make the move. Sadly I don’t have the memory to be
able to do the simplest things now which is required to do these types of
Michael, if you feel you can no longer perform as you want, you need to delegate to whomever you think will be capable. And then let that person do the work. Otherwise you will be in constant turmoil. No one can do it all, all the time. It's obvious you were a powerhouse in your field, Michael.
Sadly Iris that is easer said then it can be done. About 5 years
ago I tried to stop cutting the grass and we hired someone to do it. I once did
a great job but I was struggling and not do it good. After a year my wife hated
the results and so did I. As bad as I was there other idiots were so much
worse. That seems to be the same issue when hiring people to take care of our boat
but we have no choice there. No matter who you hire none has your back as good
as yourself. Just last night we found out how our lawyer we hired had screwed
us an did not have our best interest in the hose contract we had them look at.
I recently found out are will was written completely wrong based on
hiring top lawyers. I only learned of the error because my mother’s will left us
$0. All the money left went to the 3 children. That was definitely not what she
wanted but it probably a common mistake in how wills are written. I highly recommend all to recheck their wills.
Luckily she only had about $7,000. It was al based on once having lot of money
and now there was little money left because it all went to her 12,000 a month
AL. So when I say I don’t trust people I
have very good reasons as I have found issues in most people unless you are supper
carful and do your own research.
Michael, you and I are more alike than we are different. We are both perfectionists, and we are both usually able of coming closer to perfection than other people we might delegate. I draw the line at doing my own plumbing and electrical, though. I lack the knowlege in those areas.
I finally gave up the job of doing our income taxes, and it is a huge load off my shoulders. Again, I don't have the training. I do mow our lawn, and the two hours it takes me to do it are incredibly peaceful, riding that old John Deere and letting my thoughts wander. We have two and a half acres, and it doesn't have to look perfect.
I completely understand that nagging worry about delegating tasks and seeing them not done well or done at all, but one person can't do everything.