Joined: 12/9/2011
Posts: 13687
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Yesterday, I began to think about the discussion regarding alz+ and using a fanny pack when she goes outside. What would I want in it under her circumstances? Then I began to think about simple to use cell phones that are easy to use and are dedicated for seniors and those with special needs. What is available out there? NOTE: I am going to mention a couple of brand names, I am NOT recommending these items and not encouraging purchasing them . . . this is for information only. FANNY PACK: I would want: 1. House keys. 2. Cell Phone 3. Small, bright LED flashlight - With a wrist cord so when using it, I would slide the cord onto my wrist so that if I dropped it, I would have it on my wrist and it would not fall to the ground. 4. Loud whistle - I have one that is used by the military and have it with my earthquake stuff. It is extremely loud. It is called, "Storm Safety Whistle." I found it in a catalog, Duluth Trading Company, but it can be found online by entering the name of the whistle on Google. It is horrendously loud, no one would miss it. 5. List of Personal Information - My name and address; names and contact numbers of my significant others; name and contact for my primary care doctor; list of my allergies; list of my medical diagnoses. I would type this out and fold it carefully and put it inside a plastic sandwich bag to keep it neat and place it in the fanny pack. If you have other ideas for what should be in the fanny pack, I'd like to hear them as I am going to make a list. So as not to make this overly long and confusing, I will start a new post regarding cell phones. J.
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Joined: 12/9/2011
Posts: 13687
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I was looking for an easy to use cell phone for one of my LOs and this is what I found that would have been best in our situation, but my LO became very ill and then passed away, so we never purchased it, therefore, I have no way to confirm if it did the job well or not. Always research after purchase comments from users. NOTE: I am NOT pushing this phone or saying you should buy it; this is ONLY for information as to what I found when researching for our own purpose:
JITTERBUG 5 Cell Phone: From Great Call Wireless Especially for seniors and special needs: - No contract - No cancellation penalty - Best selling cell phone for seniors - Large numbers - Backlit keyboard - 5 star Urgent Response: Simply press the red number 5 button and you will be immediately connected to a live Response Agent who will quickly identify the user and track the location with a GPS technology. The agent can send emergency responders and can contact Loved Ones and will stay online with the customer until the situation is resolved - this is per their marketing. - Has big buttons and large block letters - Easy to navigate with Yes/No buttons - Can voice dial - Has speaker phone option on it - 100% United States Customer Service - One can add caller ID - Has long distance and roaming At the time I looked at this, it was and I think still is, $99 to purchase the phone. Plans started at $14.99 for basic 50 minutes per month. The next plan was $29.99 per month for 400 minutes. There are other plans that go up from there. One extra service that can come in handy is the MyCalendar function which will track appointments and special dates that appear on screen. I do not know anything more, or about users experiences; I think this one may have been discussed in Consumer Reports, but do not recall that for sure. One can do some research or have a significant other do research for you, but it is worth looking into for some people who would find this helpful. The phone itself is nice looking. It is "clam-shell" in design which lets you close a cover over it; it is not large, and the one I saw was a really nice red on the exterior and black on the interior. The screen was a good size and the display was very easy to read. Great Call Wireless has several different phone models; this one is: Jitterbug 5. Please alway be cautious to research comments from people who have used the phone to see how they like it and how service is; comments will almost always be mixed in most cases on most goods, but one can see the trend over time and will be prepared to know what questions to ask. J.
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Joined: 7/24/2015
Posts: 3020
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To Whom It May Concern,
Every human makes errors
from time to time. Forgetting something or having an accident does not make it
a symptom of Alzheimer's or dementia, it just means that you are human. Healthy individuals forget things on stoves
as often, if not more, than people with Alzheimer's. The difference between a healthy stove user
and a person with Alzheimer's, is the person with Alzheimer's (if aware of
their diagnosis and what their diagnosis means) generally takes a number of additional
precautions when using a stove.
I think it is very
important, here in this conversation, to differentiate what is and what is not Alzheimer's,
because otherwise where do you draw the line?
Should we say any healthy human, teen, or child (because they might be
carrying the Alzheimer's gene) that ever burns their toast and sets off the
fire alarm (because this puts other people at risk) should never again in life
be allowed to use the toaster? And
should we go further to say that if they don't like it too bad, because we have
to protect them (and others)? No, of
course not.
Normal people, when they
make a mistake with the stove or toaster, learn from their mistake and take an
even greater precautions in the future.
One of the big lies
perpetuated in the dementia/Alzheimer's world is surrounding memory
issues. It is a problem because people
who have a family history of Alzheimer's, or who maybe have MCI and fear it may
develop into Alzheimer's, in their fears, start seeing/perceiving every memory
failure as being signs of the disease rather than just being a normal memory
failure that all people have.
I am not discounting that
there are not real problems in the later stages (emphasis on "later stages"). I am just distinguishing actual symptoms of Alzheimer's
and dementia from things that maybe are "believed" to be symptoms,
but are not actually symptoms of the disease process.
Like Alz+ shared, I also
do not have a problem with memory as it pertains to using the stove - i.e. if I
was using a stove, I would not forget that I was using the stove. I would not forget how to turn it off. I would not forget to keep sleeves from
flames. I would not forget to use a hot
pad. I might have trouble using a new
stove, but only until I figured it out.
The true issue in Alzheimer's
and dementia (as it pertains to this situation), is not memory, but rather the
difficulty holding more than one or two things in one's mind at a time. So, if I am cooking and you come up to me and
start talking about tomorrow's plans or asking to me to make decisions for you,
I will not be able to simultaneously hold both things in my mind. If you do this, then there very well may be a
stove fail. And, if so, then it will
likely be attributed to the disease, but for the wrong reasons. In this particular example, it would not be a
symptom of the disease per se, but rather a tertiary issue, not of the disease,
but of the other person not understanding how the disease manifests and inadvertently
hindering (rather than helping) the person with the disease. In this case, hindering in such a way as to
cause real danger.
Those of us who are aware,
and who are encouraged to be aware, of our cognitive issues recognize that we
have cognitive issues and take active steps to compensate for them, like we make
work-a-rounds and put in place adaptations to keep us successful in our tasks. This is the most common trait that I have
found among those with young onset is the wealth of work-a-rounds they have
come up with, and their hunger for more.
Where we lack work-a-rounds, we see what we are struggling with, and
often know exactly what would be supportive in the struggle. Most I have talked to are pretty clear in
what they need for support. Likewise,
Alz+ gave what would be helpful to her.
This is why I hope we
(CG's and PWD) can learn to work together, so that CG's can put proper supports
in place, that help rather than hinder. So that skills can be maintained,
safely, for as long as possible.
In addition, a side effect
of the dying brain, is an increased ability to stay focused on one task, such
as using the stove. We are less
distractible, left on our own, than pre-disease (this is common among people
with Alzheimer's and dementia, and is actually what distinguishes dementia from
depression). Again, this is something people
who do not understand the disease process generally do not understand. However, you have only to talk with people
with the disease to find that it is a common experience. Distraction for us comes in the form of
outside sources. This is why, I feel,
that it is vitally important that we get real information (from the source)
about what the disease actually does so we can provide the newly diagnosed with
information, like this, so they can understand the real issues they will face
and better figure ways that they can compensate for them. I have yet to come across someone with
dementia or Alzheimer's who is not hungry for and wanting for more information
on how to compensate and work-a-round the disease.
Beyond that, very few
people seem to (in fact I have not ever read it on here) consider the
self-image, or needs of the person with the disease to maintain skill and
function, beyond the sake of having function.
We are people. Much of our self-image
is built into our being able to complete our daily tasks. For a comparable, consider the emotional
trauma of waking up from a car accident and no longer having the use of your
legs. Much of the emotional trauma comes
from the blow to one's self-image...what use am I now, how will I get by, and
having to rely on others are all part of self-image. How does one heal from that? They do physical and occupational therapy to
get tips and tricks and they put adaptations into place that allows them to
retain function. But we do not (yet), as
a standard practice, do this for people with Alzheimer's or dementia. But there is no reason we shouldn't. At the very least, we as CG's (I am a CG
too), need to realize that along with caring for their bodies, we hold their
self-image, their self-worth, their vulnerability, and their dignity in our
hands as well.
When one is robbed of
their dignity, self worth, and suffers too many blows to their self-image, many
consider this their virtual death, which generally happens long before the
disease takes their physical life.
My stance is one, and I am
a firm believer, that we can, and should, provide our loved ones (and be
provided by our carers), a quality of life that supports a person's value, that
supports retained function for as long as safely possible, and allows for the
emotional support in the grieving process as the disease slowly robs one of
their life. I have done this for my mom
for the last 10 years, and I hope to find a way for my daughter to do this for
myself in the next coming however many years.
In addition, this is being done around the world for many
notable people with dementia and Alzheimer's.
Thinking here of Kate Swaffer, Christine Bryden, and Richard Taylor, to
name a few. And we can all see the
effects this kind of support has had on them, and what it allowed and allows
them to continue doing...and the value that they brought, and continue to bring
to the world. This is true for a great
many other, less well known, people with dementia and Alzheimer's working
behind the scenes as well. Indeed, Kate
Swaffer writes about it and is quick to tell you when the subject comes up,
that she feels that it is her involvement with DAI and dementia rights advocacy
that is what is keeping her disease stable and even improving her function,
that I would add, better than Aricept. Christine
Bryden writes about it in her books, and is coming out with yet another book,
she too credits her advocacy work for her continued function that astounds her
neurologist. So amazed am I by the
effects reported by the people who are working on things that matter in the
world, that I consider it to be the most important (and most effective) part of
the "Best Practices" line up, seconded only by socialization and
Aricept, to keep function and mind for as long as possible.
I have said quite often in
my posts about my own retention of function is out of necessity. When presented a great need for something,
the brain can and will form new neural networks to compensate for failed and
failing ones, even in Alzheimer's. The
greater the demand on the brain for function, the greater the number of new
neural networks are developed to provide for that need. This is the gist of
neuroplasticy...and it is available to us all.
Lastly, the issues faced by people with
Alzheimer's and/or dementia are inherently different than the issues faced by
people with MCI or other issues...and they are often entirely different species
altogether than the issues faced by CG's.
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Joined: 7/24/2015
Posts: 3020
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Iris L. wrote:
"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."
----------------------------------------------------
To Iris L.,
Regarding cutting with
knives. You wrote that you have trouble
with them per Lupus, and difficulty controlling fingers.
One reason I *LOVE* the
video support groups with people with dementia is that I am constantly learning
new tips and tricks to get through the day.
Someone, who also has trouble with knives, shared she uses a wire mesh
glove that she got through OT that protects her hands when cutting things. Something you might also find useful.
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