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My experience with the stove
Iris L.
Posted: Wednesday, October 7, 2015 9:20 PM
Joined: 12/15/2011
Posts: 16107


One of my first posts on the old board was to post about leaving the stove unattended, and having food burn and the smoke alarm blair. A few wonderful caregivers advised me that I should not be using the stove at all. I immediately stopped using the stove.

After that, I began using Exelon patch. I had been afraid to begin that medication, but I felt I had reached the end of my rope. Lo and behold, the Exelon patch worked for me. My memory is better. It is not perfect, however. I still forget.

I can use the stove, cautiously. I use reminders. I use it only for short heatings, such as for soup. I turn the hood light on, which is a visual reminder that the stove is on. I set the microwave timer and another timer that I keep in my pocket. For the most part, I do not leave the kitchen with the stove on. I definitely do not leave the house with the stove on.

This is the way I have managed to stay safe in my home.

Iris L.

The_Sun_Still_Rises
Posted: Thursday, October 8, 2015 3:58 AM
Joined: 7/24/2015
Posts: 3020


After Michael posted about leaving the stove on, it got me thinking...they are actually designed to be on for hours without damaging the house (cooking soup or chili can take a day or more/turkey can take 6 hours or more).

I personally, refuse to allow doubt or question of myself to creep in because caregivers in this tiny corner of the world have fears that they perpetuate among themselves and try to put on us.

We can, as you show, use the stove safely.

For me, I use signs and reminders for just about everything in my life - not just safety measures, which helps me get through my day with greater ease.

For me, over the years, I have had to reduce my life so significantly of things I can no longer do, that I just refuse to limit my life on the sole basis of others' fears.

I have never forgotten the stove and left it on unattended. Nor can I imagine that I ever would. Years ago, my parents had an electric blanket fire in the night, and since then my mom has had a bit of residual additional fear about it. So when I came to live here, in respect and honor of her fears, fire safety with any potential fire hazard type things like toasters or electric heaters or the stove are such ingrained patterns, that I cannot imagine a problem in the future. I much sooner foresee the loss of ability to cook, before the loss of awareness about safety.

Example, we have the toaster on a surge protector that we shut off to pop the toast...plus, my habit is to stand there and savor the warmth over the toaster...so neither of these behaviors is likely to lead to walking away and forgetting about it. I will forget the toaster exists before I forget the patterned behavior with the toaster.



Michael Ellenbogen
Posted: Thursday, October 8, 2015 6:33 AM
Joined: 11/30/2011
Posts: 2493


I never thought I would ever do that and I still cannot understand how I did that. Part of the problem it is one of those electric stoves which are glass top. It was changed years ago and I am not comfortable using it all the time. This was a change in my routine. I shared my concerns about that when the purchases was made but I guess she cared more about the beauty of it.

Well the same day when I forgot I had a change in routine. That seems to be when I run into some issue. I woke up thinking I had to go buy my wife a anniversary present. I thought it was 35 it turned out I was wrong about that and only 34. If Only I could still do the math. I had to ask others and they told me the wrong information. It’s like the blind leading the blind and I hate it.


llee08032
Posted: Thursday, October 8, 2015 7:22 AM
Joined: 5/20/2014
Posts: 4406


I am cooking chicken and ground beef for Diesel now and it makes me nervous. I recently forgot I left a pot of chicken on the stove top several weeks ago and came back in the kitchen as the water was boiled out and the pot and chicken were about to burn. I now stay in the kitchen when cooking on the stove top and turn the timer on when using the oven. I survived 2 house fires, had to be resuscitated in the first fire and take this very seriously! I cannot imagine going through a house fire now and how frightening, traumatic and confusing it would be with smoke alarm blaring and thick smoke! Fire and safety is not something we should have a laissez faire attitude about.
The_Sun_Still_Rises
Posted: Thursday, October 8, 2015 8:10 AM
Joined: 7/24/2015
Posts: 3020


llee08032 wrote:
Fire and safety is not something we should have a laissez faire attitude about.

-------------------------------------------------------------------
I don't think anyone said anything here that even sounds even remotely like that.

My mom had a mini fire (no one hurt), and her fears, and my deep love and respect for her, were enough to cause me to put extreme safety measures and behavior patterns into place when I moved in long before I got sick...because of all the things my mom might experience in her years with me, fire will never be one of them (my own sacred oath to her). My safety measures are a bit more extreme than yours, and you had two (one very serious) fires...I am actually shocked you had any incident after the fires you experienced. Yes, yes, you should make good use of your fears (and personal experience) to get yourself, in your own personal life, in order on that subject...to do any less would be, I guess "laissez faire" (??) about it...*shrugs.* But what you should not do, is ever take your fears and extend them onto anyone else, though...here or elsewhere. Please don't twist my words.

I see your fear, and I refuse to make it my own (boundary setting). Nor will I perpetuate the notion that all people with Alz are careless around the stove.


The more I think about it...does ANY reasonable person ever really take "laissez faire attitude"s with ANY dangerous activity they partake in...i.e. power tools, cars, stoves, fires, machinery, horses, mountain climbing, gas lines, electric lines??? Other than maybe the young who still think they are immortal? Yes, people make dumb mistakes of judgment, and accidents happen every day (just look at the statistics), but most often it is younger, medium aged, healthy non-dementia individuals doing that. I think most people, when dx'd, were, and remain, "reasonable people," and I think most would continue to take all the normal reasonable precautions one always does with these things...and those I know, myself included, take additional precautions.

Hmm...

I am just scratching my head wondering if MCI puts you all in the class of normal healthy individuals in these matters...and maybe that accounts for the difference...and maybe rather than attributing it to normal accidents, are instead (perhaps, mistakenly) attributing it to disease??? Just a wonder.

I say that, because I talk daily with different people with dementia and Alz...and NEVER do I hear talk like this ^, ever, ever...and I keep trying to sort out what is so different with this place.


The_Sun_Still_Rises
Posted: Thursday, October 8, 2015 8:14 AM
Joined: 7/24/2015
Posts: 3020


The last stove incident I had was when I was about 22 or 23 and I was making something and milk boiled down burnt (no fire) and wrecked my best beloved pot...and I spent months trying to get it off and eventually had to toss the pan. NEVER did that again. But still made hot cocoa for the kids the old fashioned way for years.
Iris L.
Posted: Thursday, October 8, 2015 12:34 PM
Joined: 12/15/2011
Posts: 16107


Michael Ellenbogen wrote:

I never thought I would ever do that and I still cannot understand how I did that.




Michael, it wasn't the stove, it was you. You forgot. That's your illness.


Anticipate that this will always happen. Take steps to avoid leaving a lit stove unattended. We have to be proactive. If it means not using the stove at all, then so be it.


Use the microwave, because it shuts off automatically. But still be cautious. I had a fire in my microwave on a paper towel. Fortunately, I was standing right there and saw the flame and could immediately stop the microwave, open the door, and throw the lit paper towel into the sink with cold water.


Iris L.


Michael Ellenbogen
Posted: Thursday, October 8, 2015 1:07 PM
Joined: 11/30/2011
Posts: 2493


I agree but part of the problem is the complexity of turning it off. Its not like you twist the knob like you did in the past. You need to use a control panel. I thought I hit the correct button but I did not apparently. CG should not get complicated devices in the house if you have AD and think we can use it.


TayB4
Posted: Thursday, October 8, 2015 2:07 PM
Joined: 8/8/2014
Posts: 815


The_Sun_Still_Rises wrote:

I personally, refuse to allow doubt or question of myself to creep in because caregivers in this tiny corner of the world have fears that they perpetuate among us


Sun,

By this statement you are putting all caregivers on these boards into one classification and saying that they, the caregivers, are trying to restrict your personal freedoms, when all they are doing is trying to care for their LO and live their lives the best that they can. What happens in their lives has nothing to do with what happens on yours. So if you feel this way about the caregivers, I am wondering why you post so profusely on our posts. I had stopped reading your posts for a while, but had started reading them again because they seemed inciteful and helpful. I see that you are starting the caregiver bashing again, so I will just stop reading your posts and replies.




w/e
Posted: Thursday, October 8, 2015 11:52 PM
Joined: 3/7/2012
Posts: 1712


My immortal beloved was a person with symptoms of dementia/AD for over 10+ yrs.
As of today, I am a person with no symptoms of dementia/AD or any of the other countless numbers of dxs of dementia / MCI / and so on. ( I knock on wood. I knock on my coconut head. With my respect to the gods. Especially, destiny / fate)

We both have left the stove on, with fires waiting to happen. YIKES!

In his case, when it happened, I came running into the kitchen and said, "Holy shit, what happened, here?!"
He responded to me, "Dear e, you do not know the half of it."
We talked and talked. Cold turkey. Followed by many tensions and countless tears.
I , eventually, said ,"Well, w + e, we have to make some drastic changes in our habitat. We've got trouble in River City."
From that day on, w+e became we. That was many years ago.

We did make lots of changes. Rationally. Methodologically. With the least amount of drama. Nothing personal. It was about life and death. And symptoms of dementia. And love and respect and care.

Now, I am alone. I am a 69 yr old widow who has to be super careful while living alone. Careful with the stove. As well as other many other countless things. It is much easier for me, I do not have neurocognitive issues.

I think we all are in the same page in Alzconnected...The PWD and the CG... We are connected.
It is about the brain. It is about health and safety, independence, convenience, personality, interpersonal behaviours, family dynamics, economics, support, opinions, advice, sharing of experiences, guidance, care. Tender loving care.
Decisions as to: who, for whom, with whom... What, when, where, how, why ... the good, the bad, the ugly of existence.... All of us perfectly imperfect humans, striving for some contentment and peace... Infinity is perfection.

Who knows what is the right combination and balance. The right combination of colours and textures. The right balance of herbs and spices. The light and the dark in harmonious balance.
The dementia dance is an on-going work of art. A work in progress. Until the end.

We are in this together. With our idiosyncrasies. With our humanity.
Implicit and explicit.

As always, this is just my nano of a cent..
(My apology, bold did not work.)

llee08032
Posted: Friday, October 9, 2015 5:52 AM
Joined: 5/20/2014
Posts: 4406


Change is a constant and what we can do one day with ease we may not be able to do the next day.

Thanks for your soothing words w/e!

alz+
Posted: Friday, October 9, 2015 9:04 AM
Joined: 9/12/2013
Posts: 3527


sun!

"For me, I use signs and reminders for just about everything in my life - not just safety measures, which helps me get through my day with greater ease.

For me, over the years, I have had to reduce my life so significantly of things I can no longer do, that I just refuse to limit my life on the sole basis of others' fears. "

I THINK I GET WHAT YOU ARE SAYING - WHEN MY HUSBAND IS watching out for me it makes me so nervous, tension increases. He helps with what HE thinks I need help with, not what I ask help for. So because someone else is worried I will start a fire or wash dishes, I don't get to cook unless he is gone (or I am alone at tree house) and enjoy washing my few dishes over there.

I don't see anything about CGvr bashing.

**********

I read about using kitchen equipment on timers, like slow cookers, crock pots, convection ovens, toaster ovens, rice cookers etc. That seemed so smart to use a timer based appliance.

We got a glass top stove and I hate it but there it is. I made a pizza in the oven at tree house the other night and was actually shaking in my knees figuring out the stove temp and how long it goes. It was still a cooked frozen pizza in the end.

There were a few weeks when I could not make coffee - we use Melitta grind bean, put in filter with cone, pour boiling water through... I could not figure it out. I was so upset, thought "another ability down the drain!" Then one day I made coffee again!

Fire is nasty. My husband has left stove on more than I have. I think if the time comes when I can not get food for myself I will not be interested in stove, but I have read how CGvrs have to unplug the stove and do all kinds of stuff to keep some people from getting burned or starting fires.

All very individual, and the loss I have today might come back - I suspect it is normal for most of us because we learn to compensate and create new patterns in the brain, round about ways but they work.

Iris you are really doing good and I envy the trip coming up - that you got to plan it and enjoy the thoughts of it before you go and when you get back.

You found Excelon works for you and keep making strides forward.

Those new cook tops - not hot to touch and only work with a certain type of pan?

OK, had to leave tree house for half day as they are doing electrical repair there and am at house with Keeper packing everything into boxes but not labeling boxes and he has yet to rent the storage unit, and where are my breakables?

hair on fire! Chose paint colors with no idea, cost of this is through the roof. Thought there was going to be some donations to The Cause but every one backed out.

Now that is BIG FEAR - this remodel of water damaged walls and floors is beyond me and could turn into one ugly and way too expensive catastrophe.

we are each struggling to be honest and hopeful - let's not not take offense at some one else's way of dealing with stuff. Esp do not profit from a CGvr posting here to shame someone because we discuss problems with those who look out for us. We have a right to our feelings, we are not gone already.

Can't drive, can't cook, can't fix stuff, can't pick out a floor, can't calculate, I could cry - but it is the way I am treated about this stuff that breaks my heart and can start a meltdown. it is hard enough without us trying to be overly critical of how anyone else chooses to live.

back to packing and being scared of remodeling tis dump.


Iris L.
Posted: Friday, October 9, 2015 12:15 PM
Joined: 12/15/2011
Posts: 16107


One of the things that care partners complain about the most is that their LO with dementia seems to be unaware of dangers. This is real. This is why they become hypervigilant.

I am so GRATEFUL that the caregivers on this board responded to me and broke through my inertia in order to keep me from further damage on the stove and possibly a worse problem, which would be a fire.

Their reaching out to me was also the impetus that got me to begin using Exelon patch.

I truly appreciate the caregivers here. They have always given me good advice and support. I trust them.

Years ago, caregivers began the Alzheimer's Association, and expanded their reach to us patients. This is an area where we have been communicating with each other and learning what to do for ourselves. I do not understand people who disparage us or this board.

Iris L.

Unforgiven
Posted: Friday, October 9, 2015 12:33 PM
Joined: 1/28/2013
Posts: 2551


Likewise, Iris, I appreciate the information you have given me for almost three years now. As far as I know, the only cognitive issues I have are secondary to care-giving stress and general slowing down with age, but I think we're all in the same boat when it comes to developing good habits to cope. Write things down. Take one or more tasks out of the multi-tasking.

I think I once told you that I let a pot of boiling eggs rundry on the stove when I was in my twenties, at the top of my mental game. Even worse, when I smelled the smoke, I turned off the stove but then put the smoking pot underneath running water in the sink. That made the hard-boiled eggs explode, one by one, as I ran from the kitchen with shell shrapnel flying past my ears. I still have egg fragments on my kitchen ceiling from that incident. So I've been extra careful ever since.

We currently have a glass cooktop, no open flame as with a gas stove, but that means I have to be extra vigilant about cats stepping on a burner I may have just turned off. My mother hated cooking, so she never even tries to use the stove, thank goodness.

No one should ever feel ashamed of making a mistake, because we all do.

Iris L.
Posted: Friday, October 9, 2015 12:59 PM
Joined: 12/15/2011
Posts: 16107


No one should feel ashamed of making a mistake, but is it a mistake, when one knows of a risk, and does not take steps to ameliorate that risk? If we know we are routinely forgetful, and especially if we already have a history of being forgetful about leaving the stove unattended, is it a mistake to repeat that in the near future?

Personally, if I were living in a home with a person who was unable or unwilling to take ordinary safety precautions, I would do my best to neutralize that risk.

We patients resist having someone else tell us what to do. Well, if we do not act responsibly, someone else WILL tell us what to do. And we won't like it.

I risked being asked to leave my home and move to assisted living. Now, no one could force me, but they could have cut off the supply of gas to my home, if I were deemed a risk.

I have read of several cases in my local newspaper of older adults who lived in unsafe or unsanitary living conditions. The government put increasing pressures on them, until they were forced out. Who knows what happened to them?

I live in a condo complex. I have close neighbors. I do not want any unwarranted attention brought to me due to forgetfulness. There are people here who would not hesitate to call the authorities on me, and give me a hard time, until I moved out.

If we patients are not careful, someone will take over our lives, and put us somewhere. This is not fear-mongering. This is reality. No rational family member or neighbor lives in fear of another person unknowingly starting a fire from forgetfulness.

I had a new neighbor years ago who spoke suspiciously. I feared that she could set our place on fire. So I was the one who complained to our manager about her. I later learned that her son had rented her an apartment because he could not handle her, and she had dementia and delusions. So he put her with us.

We want to be independent and manage our lives. Well, let's manage our lives, before someone else takes over.

Iris L.



Iris L.
Posted: Friday, October 9, 2015 4:00 PM
Joined: 12/15/2011
Posts: 16107


Unforgiven wrote:


My point is, though, that we're all in the same boat, although some boats may be more swamped than others.




My point is that we are not all in the same boat. The person with memory loss due to brain pathology is not just swamped or overloaded or absent-minded. The memory is GONE, after a certain point in the disease process.

I remember being forgetful in my earlier years, and being forgetful now. The difference is that now, memories vanish. They can vanish almost immediately. Fortunately for me, at this point, I can be reminded by a timer or some other cue. But there are many, many times, that a memory vanishes completely.

My hope is that I do not progress past this point, because it is devastating to have no memory at all.

I do not believe that other people fully comprehend the depth of the memory loss.

One of the aspects of this board that I like so much is that we can post devastating things about ourselves and receive support about how to handle it. Such as, for me, repeatedly burning food on the stove. Where else can we receive such support? What I learn here is helping me keep a low profile in front of my neighbors.

Iris L.

alz+
Posted: Saturday, October 10, 2015 8:35 AM
Joined: 9/12/2013
Posts: 3527


I still can not think of what you call the NON HOT stove.

googled it:

http://theinductionsite.com/proandcon.php

Induction. Michael - do you want to cook now? I only do because I like my own food.

Anyway, there does seem to be a difference in MCI and ALZ in terms of needing help with stuff that could be dangerous.

One other thing is, Iris - you can still live alone! You do not have to deal with yet with some one watching your every move, jumping in when you could do it if just given a little more time, or some assistance.

I want to do small chores around house but was banned from washing dishes because I cut my hand on a knife blade in dish pan ONCE. So when Keeper is gone I do some stuff and enjoy it.

Also my Keeper has left things on stove since I met him 13 years ago. he has left a towel on cook top which caught fire and cracked stove up, needed new stove.

When someone takes on the role of safety patrol it can get on your nerves and then there are arguments and tension and stress and the PWD suffers too.

There is the option of assisting VS policing. Even if it were done in a friendly way, like sitting in kitchen and talking a little or reading the paper while the PWD or MCI is making their soup or casserole or salad or whatever.

I want to be protected from burning the house down - but that does not equate to being under constant critical scrutiny. Does that make sense?

So, in regard ot this, I went out at 5am with my dog to let her pee. Had my coffee in hand, wanted to hear the trees in the wind and watch the leaves come down. A gust shut the door and I was locked out - with coffee maker on and fire in gas place.

I have no night vision so dog led me back up the hill in the dark in 40 degrees plus wind. Keeper let us in. Took him 2 hours to go back and open unit and turn off coffee maker. I got up at dawn to go back and do it and he said "NO!" he was going in a minute.

He finally went. Now I have to box more stuff which means sitting and staring at a box and stuff and imagining a way to do this, and mark boxes. I am "helping" empty the house as heavy construction begins Monday.

In conclusion, there is a difference between what each of us experiences with out memory loss, or in my experience, loss of focus, wandering attention. I don't actually FORGET stove is on, my mind goes on to something else. When my mind reminds me STOVE ON I attend to it. It did not forget there is stove, or that I was cooking.

Further on I imagine my mind will wander more and more onto things it is more suited to ponder and the stove will not be relevant.

These are differences that matter when learning how to compensate for what other people call memory loss. It has been beneficial to me to think of it as wandering attention instead of MEMORY LOSS. I can work around wandering mind.

We each compensate for what used to work one way and now works another.

OK, I got out of packing for an hour by posting here. Might as well sit with a messy closet and some empty boxes for awhile while my Keeper crabs in background.

Let us all keep learning from each other, and respect.



llee08032
Posted: Saturday, October 10, 2015 9:07 AM
Joined: 5/20/2014
Posts: 4406


Again I found myself getting dragged down and sucked into the vortex of another stupid debate. Surely it is not about cooking or a baking contest. It doesn't matter as I have (pleasantly) forgotten many of the details and ingredients of the issue. Nothing simmers underneath for me and another lesson is learned. It is odd that when I think my behavior is my worst ever I get several friend requests at the same time! I forgive as I want to be forgiven and move forward. Principles over personality's. I feel foolish for getting so unnerved. I really do not have the time. Nor do I want to give up precious mental energy to such foolishness!
abeautifulwaytolive
Posted: Saturday, October 10, 2015 10:54 AM
Joined: 8/17/2015
Posts: 86


I still come on this forum, time to time, but I don't usually comment much. I don't really like to come on here much, because every time I do, I get a feeling in the pit of my stomach that makes me absolutely sick. I come on here hoping that things will be better, and I'm met by this. This time, though, I feel that something needs to be said.

As you may know, I am caring for my mother, and we are both very open and honest with each other. It has worked very well for us, and I can see it continuing to do so, despite others negative comments and telling me that only lying will work.

My mother has never once had a problem with the stove in the entirety of her adult life, that I know of, and most certainly not since I moved in with her. I feel like I have more forgetfulness than her!

Trouble with short term memory does not coincide with forgetfulness. That's the problem with looking in from the outside. People without this disease or without a playthrough from a person with this disease has a hard time understanding this.
When I first heard of my mother's diagnosis, that is what I assumed! When she said she was having trouble with her short term memory, I asked her to elaborate. She brought it to my attention that in a conversation if I make too many points, she can't hold all those points in her mind at the same time. She didn't FORGET what I said (in fact she can almost always repeat it verbatim (even weeks later)) she just couldn't make sense of it.

That is one of the many stigmas of this disease. People just assume that they forget everything, so not only does it not matter how they treat them (i.e. someone told me that they will try to coerce their pwd to go to the doctor and try again in a few days, and try lying or bribing a few days after that), and furthermore, they won't think twice to take tasks away because they think their pwd will forget how to use a stove.

My role is a support and an advocate to my mother, my role is not to take full control over the direction of her life.

Unforgiven
Posted: Saturday, October 10, 2015 1:29 PM
Joined: 1/28/2013
Posts: 2551


I'm discouraged. What is upsetting about this thread? One PWD recounts her experience with the stove. Other PWDs say they can still cook, with certain work-arounds. Other work-arounds are suggested. Then people begin to react negatively. CGs are accused of taking away tasks and of shaming. No one wants to be shamed for a mistake, obviously.

The sad fact is that the disease process does reach the point where CGs do have to take away tasks because the mistakes are becoming a dangerous pattern. And the suggested work-arounds aren't working anymore. Thanks for the guilt.

abeautifulwaytolive
Posted: Saturday, October 10, 2015 3:17 PM
Joined: 8/17/2015
Posts: 86


There is only guilt if one is guilty.

I constantly help my mother make adaptations around the house, and she is open about her struggles, and very aware of her skill set.

I was told, from other cgs on here, that it is very wrong of me to be honest and open with her, and constantly told it was cruel of me to do that. Am I guilty? No, because I am doing nothing wrong.

My mother and I have a very close relationship, and I couldn't imagine lying to her. The aforementioned cgs continued to tell me that it was a very unique reaction that was had. I find that hard to believe, and quite troubling that others seem to believe this. I have heard from pwd themselves that honesty works really well for them. I have seen many videos that also support this.

Pwd need to be treated like people. Policing them and scrutinizing everything they do is unfair. Holding them to a level of perfection, and blaming any and all mistakes to the disease, even if they are just human error, is very disrespectful. Put yourself in their shoes. Would YOU like to have every moved watched and judged to an unobtainable level? Would YOU like to be lied to, tricked, bribed, and essentially manipulated? If you answered no, then why is it acceptable to treat a pwd this way? I'm addressing this to everyone, because I really want to bring to light what I have learned from my time here.

I am not saying everyone is like this. I'm not saying I kbow what is best for everyone in every situation. I only have what works for my mother and I, and if this is of use to any one, then that means it did it's job.

Iris L.
Posted: Saturday, October 10, 2015 3:52 PM
Joined: 12/15/2011
Posts: 16107


alz+ wrote:


I want to do small chores around house but was banned from washing dishes because I cut my hand on a knife blade in dish pan ONCE.




I never put a sharp knife into the dishpan. I wash the knives individually. My sharp cooking knives, I wash and dry and put away, right away. I do not lay them out.


Alz+, it is very important to keep the memory of doing tasks and chores. It is good to keep the same routine as long as possible.


Iris L.




Unforgiven
Posted: Saturday, October 10, 2015 4:04 PM
Joined: 1/28/2013
Posts: 2551


When being honest and respectful no longer works, you just have to do what works to protect everyone. I'm happy you got enlightened so fast. I dealt with the failure of honesty, helping rather than taking over, and preserving independence for many years, and now am meant to feel guilty for both not understanding it was the nature of the disease, and now for taking the necessary control over the quite disabled PWD I currently have. You just can't win on this board, even while trying to be understanding.

Since you asked, and I'm pretty sure I'm talking to a CG rather than a PWD, I'll say what I normally would never say on this part of the site. Yes, if I were to develop dementia and progress so far that I was a danger to myself and others, plus being an uncooperative pain in the posterior about it, I would like to have my able-minded family take over, and it would be only fair and just if they told me that bluntly.

It's probably best if I stay away from this board, even though I like many of the PWD who post on here and have some useful suggestions about how to cope while dealing with cognitive issues. The biggest one is how I mostly use the microwave to avoid accidents that might happen from sudden interruptions.

Iris L.
Posted: Saturday, October 10, 2015 4:40 PM
Joined: 12/15/2011
Posts: 16107


now am meant to feel guilty for both not understanding it was the nature of the disease, and now for taking the necessary control over the quite disabled PWD I currently have.




No one should feel guilty. We all do the best we can with the limited knowledge we have, then we do better when we learn more.

I have always valued your input, Unforgiven, even if we might not see eye-to-eye on some point. If I posted anything to upset you, it was not intentional.

I think you might have proved my point. When things get to the point that another person (the family member) becomes uncomfortable and must step in, we patients risk losing control of our own lives.

My point is that we early stage patients can try to work to avoid having another person step in to take control, as much as we are able. If I kept leaving the stove unattended, I would have lost control of my home, eventually.

My intention of posting this thread was as food for thought, not an accusation to anyone.

I want patients to remain independent for as long as possible! At some point, independence may not be possible. I am not overlooking that. But for now, we can maintain our independence.

Iris L.

llee08032
Posted: Sunday, October 11, 2015 11:40 AM
Joined: 5/20/2014
Posts: 4406


Unforgiven,

I don't see that you said anything wrong that could be misconstrued. I enjoy having you here on our board and hope that you continue to come back. If ever there is a disagreement it has always been handled with respect on your part. I greatly appreciate your insight and the respectful way in which you interact with us.

I don't know what else is dragging on about this thread other than I made a comment that we should not be lackadaisical about stove safety. In return I was disrespectfully attacked for making a comment that was directed at no one in particular. I am at fault for responding to the attack when I should know better and should have ignored it! I accept that I was as much as at fault as the attacking person for responding inappropriately to what I felt at the time was an attack on my person and intellect.

This whole thread is about the safety and well being of PWD using the stove. Stove safety, that many of us struggle with has been blown up, exaggerated and taken out of context and turned into CG/CP vs PWD and PWD vs CG/CP. Not everything is a about a war and a world of differences btween CG/CP and the PWD! The common sense factor here requires that any PWD wanting to advocate for their rights first needs to stay safe and alive to do so. This has gone far enough and we need to move on to LIVING WELL! I am sorry for contributing to this hot mess in anyway as what this turned into was not my intent at all.

Unforgiven
Posted: Sunday, October 11, 2015 1:40 PM
Joined: 1/28/2013
Posts: 2551


That is so true. Not being alive can seriously impinge on your ability to enjoy life.

However, you shouldn't have been attacked. Period. End of story. You can't be faulted for responding to it. Last time I checked, YOAD folks are still human beings, and that's what I meant by all in the same boat. We're different but alike in many ways, if that makes any sense.

alz+
Posted: Monday, October 12, 2015 3:25 PM
Joined: 9/12/2013
Posts: 3527


WAAAAAHHHH!!!!!

I wrote a pithy bit here and it got lost. Trying again because I can lay down in bed and write to my friends here instead of going back to rental to think.

Iris -you wrote about people with dementia being UNAWARE OF DANGER.

Maybe I am unaware of danger now?

Is there a difference between being scared, and being aware of danger?

Like locking myself out of tree house and walking down total black out road through woods to my house - I was SCARED, but I had my dog and it was cold, so I had to do something. was that dangerous?

I sit in hot tub over at tree house at 2am and listen to wind whip old oaks branches over my head. I thought, what if a branch breaks off and hits me on head?

I stayed. I did think, what a great way to die. It was kind of scary, but was it dangerous?

I often think I could easily fall down stairs when I feel weak and have stuff in my hands, but I do it anyway. Is that dangerous?

I wish I could drive but I do not even attempt it because it is so scary for me - is that being aware of danger?

How would anyone know if they are doing dangerous things? The man who owns rental I stay in had a stroke, he was on roof yesterday patching around chimney, in wind, on high ladder. His wife sitting in back of pick up chatting with me about bad roads in winter and the dog. I thought, "That's so dangerous," to be up there on roof in wind but they did not seem to be worried.

My Dad went out one night into holding pond. My Mom did not know he was gone. A neighbor heard a man yelling "HELP!" and guards found him. Alligators and snapping turtles. My Mom was furious with him. He could have drowned. I don't think he felt scared until his feet got tuck in bottom muck. I am pretty sure he did not think a night time walk was dangerous.

anyone clear this up for me? how would I know if I am unaware of danger? what risks make life worth living and what is the difference between that and ... like leaving stoves on and stuff.

Michael is sky diving. There must be some distinction between risk, reward, and danger.



Unforgiven
Posted: Monday, October 12, 2015 5:56 PM
Joined: 1/28/2013
Posts: 2551


Michael needs his head examined. Oh, wait, he has already had it examined --extensively. Sorry, but skydiving, even strapped to an expert, is not my cup of tea.

I say good for Michael, because that activity is indeed dangerous, but the risk only affects him and the expert who was willing to give him the experience. The problem is when the danger affects the neighbors too, like posxibly starting a fire in an apartment complex, or where houses are close together.

A little assumed risk can be a lot of fun -- like a walk in the dark, or going horseback riding. Or like I did today. Would you believe the 'Microsoft Tech Support' scammers had the chutzpah to call me back today. I could have stuck to my vow not to pick up for unavailable numbers, but I felt a little wicked. I answered as polite as Rhett Butler himself, although I did ask for someone I could understand, because the Indian accents were very thick. When the second person asked me how my day was going, I said it was going great. I had recovered my data and learned a valuable lesson, because I'd been tricked by *unprintable* scammers like him. And then I hung up feeling a lot better. I think they won't bother calling my number again.

All of life is dangerous, and it ends in death regardless of how careful you are. But if we want to retain our independence, we have to take steps to avoid hurting ourselves of others

Iris was right about knives in the sink. If they do need a littlr soaking or scrubbing, I leave them on the drainboard, and then submerge the blade while holding the handle in one hand.

Iris L.
Posted: Monday, October 12, 2015 8:45 PM
Joined: 12/15/2011
Posts: 16107


As I was exiting the doctor's office, a mom passed with a baby in a carriage. Her toddler held the door open for her, I said to the child, "what a good helper you are!" Mom said, "sometimes." Then the girl ran out the door into the parking lot. The mom said, "see what I mean about sometimes?" I went after her, because she could have gotten hit by a passing car. If she were my child, I would have not let her exit the door first--I would have held her hand. I would have taught her not to run away from mommy.

My background as a pediatrician makes me extra cautious about child safety. I saw so many children injured by just a slip of inattention on the part of adults around them.

When I first got married about 20 years ago, I took a "Cooking for the Family" class at the adult school. During every class I cut myself with one of the knives. My fingers did not have good control of the knives. That was at the beginning of my lupus diagnosis, and my fingers seemed to have no control at times.

But I soon stopped using the knives, because I did not want to draw attention to myself. I did not want the teacher and the school to see me as a risk, because I could not handle ordinary kitchen knives. Now, I use knives and I am cautious. However, a few weeks ago, I sliced the tip of one of my fingers.

I don't even remember how it happened. I contemplated going to the ER, it was bleeding so much. But I did not go. I kept it clean and covered. After 24 hours, the bleeding stopped. I have a low platelet count, btw. Several weeks later, I cannot even see where it was sliced. I was fortunate.

I think this falls under the category of our human sense of self-preservation. We do not want to become injured. So we have learned what could possibly harm us, and we take reasonable steps to avoid harm. Even animals do this.

Being higher beings, we humans calculate the risk of different dangers, such as driving. Driving is more dangerous than sitting at home. But there are dangers at home, too. We calculate and balance risks every day. This is what we use our brains for.

There may come a time when our brains can no longer calculate and balance risks, for whatever reason. Hopefully, other people will be available to step in and calculate and balance risks for us. Or, they could just let us get injured.

Many years ago, two toddler girls were struck by a train and killed ~1 o'clock in the morning. A few people had observed these two small children out by themselves in the dark, but no one cared enough to stop and investigate why? So these two precious children lost their lives. I vowed never to let a dangerous situation go by with me not speaking up about it. I am always at my condo's swimming pool, trying to get the parents to be more observant of their small children in the pool. It is not enough that the parent is there reading or looking at her phone, eyes must be on the child!

I could write reams of dangerous situations I have witnessed. Unfortunately, children are going to be injured. I cannot save everyone.

Getting back to us on this board. We are adults, and adults make their own decisions and accept their own risks, as long as they do not risk others as well. Michael is having a great time, skydiving, I hope. Our former president, George Bush Senior skydove at age 90 (tandem). I had planned to celebrate my 65th birthday by taking a soar-plane ride. I am not up to skydiving, myself. My friend's husband does this every weekend. Guess what? He comes home every weekend, so it must be safe enough (knock wood).

I truly believe it is a good idea to follow everyday household safety rules, if we want to live in close society. If we want to live in the woods and do whatever we want to do, then fine. Alz+ lives in the woods. I personally believe Alz+ should follow everyday household safety rules because I do not want her to be hurt, but I cannot force her.

I think we might also consider the effect on those left behind, if we succumb to an unfortunate accident that might have been easily prevented.

I am not going to scold anyone regarding his or her own life. I will scold if someone is irresponsible with a child or dependent adult that they are responsible for.

I want my own life to be as peaceful and serene as it can be in regards to distressing events. Having an accident or getting locked out of my home is a distressing event. I don't need that in my life. For years, I have always taken my key with me whenever I pass through my front door, even if it is just to take out the trash or to go to the mail box or to go to my car in the parking lot. I do not want to risk being locked out. I keep my key on its hook or in my pocketbook or in my pocket. I never put it down.

Alz+, one of the features of AD is apathy--apparent unconcern about things. I think you are aware of dangers, but you have become apathetic about them. Also, you are unable to make wise decisions. "Should I wash the knives separately or not?" This is abulia. It is unfortunate that apathy has a bad connotation in the public, but apathy truly has a neurologic definition.

Another term for the apathy that I thought of about myself was "la belle indifference". As my home was getting more and more cluttered and things were piling up, I looked at the piles, but I felt no concern. In my own mind, I knew it was "la belle indifference" because we studied this at school, but I had no idea it was related to cognitive impairment or early dementia.

In any case, I kind of still have it, but I am aware of having it. Does any of this strike a bell?

Iris L.



llee08032
Posted: Wednesday, October 14, 2015 7:42 AM
Joined: 5/20/2014
Posts: 4406


Like locking myself out of tree house and walking down total black out road through woods to my house - I was SCARED, but I had my dog and it was cold, so I had to do something. was that dangerous?

It was dangerous alz+ but you did not have any other option at the time other than sleep outside. Can you hide key somewhere outside?

Do try to take special care now while you are going back and forth between houses and packing up for the repairs. We are more prone to accidents when we feel rushed, hurried and under pressure to get things done. The last thing you need now is some type of injury on top of everything else! Reality based thinking is being "scared" of or fearing dangerous (survival instinct) situations, people or things that could really harm us. Stay safe alz+!

Jo C.
Posted: Wednesday, October 14, 2015 10:31 AM
Joined: 12/9/2011
Posts: 10066


Hello alz+; oh my goodness, I am glad you are alright. llee is very wise and she gave you excellent input. Please above all else, be safe.

If it would be difficult for you to hide a key outside the house because recalling where it is would be a problem, why not have your husband or daughter buy you one of those soft plastic coiled wrist bracelets especially made to put a key on. That way, you can have your key actually on you at all times, and can get back inside the house if the door accidentally becomes locked.

OR: One could wear a fanny pack where one could put not only their key, but if you have a cell phone which is easy for you to use, it would be good to also have that with you when stepping outside. One can even wear the fanny pack inside the house if it is a good one that is more comfortable to wear.

Perhaps while your daughter is here, she can help put together some safety factors that can be very helpful in keeping you safer.

We care very much about you and want to know that you are safe and taking all safety precautions that can be done.

llee is so correct; you do not need any injuries or other physical disasters at this point; safety first!

Big hugs,

J.


Unforgiven
Posted: Wednesday, October 14, 2015 2:38 PM
Joined: 1/28/2013
Posts: 2551


Yup, as wonderful as a walk in the dark from the treehouse is, you don't need to trip over a root.

I got locked out of my mother's house (now my son's) because of a lock that dated back to 1922 and had this silly button one needed to push if one needed to get back in. I was unfamiliar with it and chose the wrong button on a trip out to the garbage. After checking with the neighbors, I just walked the 14 blocks to my mother's senior apartment to borrow her keys and her car.

I plan to install a keyless entry lock on one of our own doors so we can avoid getting locked out ourselves by accident. I can still remember a passcode, though. We still don't lock the house while we're in it, which will, alas, have to change soon. The rural Eden my parents brought me to 65 years ago has changed. I'm still more afraid of coyotes bursting through our screens to come after the cats than I am of a home invasion, though.

What I've been trying to say all along is that we should strive to ingrain safe routines in ourselves while we still can, and it isn't too late for those in early stages. It is also good to keep up with computer and mobile technology, because that can make life so much easier. I can be reminded of appointments or notified to refill prescriptions right from my smartphone and take care of business without even leaving my bed. The internet serves as my memory so that I don't have to remember so much. Because I'm remembering for more than myself now, and I've getting to the age where I can't keep that many balls in the air. I will be thrown off track by interruptions, and the interruptions are many.

For those of you early stage folks who have smart phones, I would like to recommend a free app called Keep. It makes lists to remember for you as long as you can set up the steps for whatever you need to get done. I have a monthly To Do list that keeps track of important tasks and bills. I have a pharmacy shopping list for items that need to be purchased so I can check them off in the store as I shop. The list remembers, and when an item needs to be purchased again, I simply un-check that item on the list when I see we're running low, and up it pops again to remind me. It works for everything you might need, like questions to ask your doctor next time, completing a project, or simply buying groceries. It's like an external hard drive for my brain.

Alz+ and Iris, I too am sometimes paralyzed when faced with too many things to to and to sort through, so I truly understand that feeling of being overwhelmed. When that happens, I come to the internet for a little fellowship. When even the internet is overwhelming, I go someplace quiet and to what I feel like doing until I recover. We really ARE all of us in that some boat.

When I've gotten things sorted, I will probably recount my experience with the phone scam in detail on this board or maybe the CGs board, because if I didn't know about it, I bet there are plenty of people out there who don't know about it either. The scammers can be very convincing if you don't know that what they tell you to look at is perfectly normal.

Iris L.
Posted: Wednesday, October 14, 2015 7:35 PM
Joined: 12/15/2011
Posts: 16107


The scammers can be very convincing if you don't know that what they tell you to look at is perfectly normal.



If you did not initiate the call, do not do anything that a stranger on the telephone tells you to do. Even if they say they are from Microsoft.

Tell them you are busy and will call them back. try to get the phone number. They won't give it.

They will try to keep you on the line. Hang up.

I tell them that I do not own a computer, even though I do.

Iris L.

Unforgiven
Posted: Wednesday, October 14, 2015 8:04 PM
Joined: 1/28/2013
Posts: 2551


Oh yes, I know now that Microsoft never initiates calls. It did seem credible to me at that time, because my computer had been acting 'buggy', and giving me messages about missing drivers and such. Anyway, I learned my lesson and how. I am now making use of the password encryption part of my anti-virus program, have changed all my important passwords, and am putting my sensitive personal data into an encrypted area of the computer, also a feature of my antivirus program. The smart thing is to never pick up for unidentified callers, which I shall never do again.

The main thing I learned is to forget about being polite and be suspicious.

llee08032
Posted: Wednesday, October 14, 2015 9:28 PM
Joined: 5/20/2014
Posts: 4406


It is best to hang up the phone right away or not answering at all. If you do happen to answer the phone saying less is best and don't say the word "yes" to anything they ask whatsoever! They tape you saying yes and use the recording as validation that you signed up for the product or service! If I answer by mistake I just say "no" and hang up!