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Independence
in dressing depends on:
Ability
to get clothes on without help.
If
they can’t get in and out of their clothes without help, they can’t bathe
themselves, they can’t toilet themselves, they can’t go to any public
place by themselves. Any activity they engage in on a
regular basis, such as participation in a health club, sports, buying clothes,
dining out, visiting friends, all those activities take on an aura of
potential disaster if they can’t manage their clothing without help.
Ability
to discern fronts from backs, inside from right side out.
Are
they able to navigate over-head items as well as shirts and blouses that
button in front by themselves? Are clues such as labels, seams and closings
being utilized effectively? Once this skill begins to erode there will be
obvious changes in their dressing and appearance.
Ability
to handle zippers, snaps, buttons, Velcro tabs, shoelaces, buckles, neck ties
belts, etc.
Matching
buttons and button holes, Velcro tabs, snaps, zippers etc., involves a high
degree of coordination that involves eye sight, depth perception, sensory
acuity, as well as rote memory. These losses are a normal part of the
disease process and can’t be relearned. It is very frustrating to the family
member who experiences the confusion and the problems.
Ability
to care for clothing. Hanging it up, getting off hangers, washing, dry cleaning,
dropping off at the cleaners, finding the cleaning tickets, putting clothes in
drawers, etc.
If
clothing isn’t being washed, ironed, hung up, picked up from the dry
cleaner, you need to step in and do these things for them. The
ramifications of lost dry-cleaning tickets is enormous. I believe that my
husband still has clothing somewhere in New York that will never be claimed
because of lost tickets. They
will also attempt to hide their inability to follow through on these tasks.
Dressing
appropriately for season, temperature, occasion.
As
their sense of time and place erodes so does the ability to choose clothing
appropriately. They know they are having difficulties so they may just opt for
wearing the same items over and over. This may be in part because they can get
those items on without help as much as an indication of inability to make
choices about and coordinate their wardrobe.
Assisting and Supervision Stage
Entering
into the dressing life of your person is probably the first and easiest point of
access into their personal space. It is the area least threatening to their
sense of privacy and yours. It is where you test the waters, begin to build
confidence about being a presence and it is where you begin to garner their
trust.
At
first, your function is that of the quiet observer. You hover by the bedroom,
and the bathroom, you learn to check them out before they leave the house
and you even follow them to the bathroom in public places to make sure their
clothes are properly arranged.
You use
this time to learn
their dressing patterns and find out which tasks present the most trouble to
them. And you use this time to accustom them to your presence. It is important to understand that the problems they have with dressing
are very real.
These
aren’t simply lapses in memory.
These
aren’t things they can relearn.
The
brain is loosing the ability to connect with the body parts.
If you stop to
consider the complexity of movement that is orchestrated by the brain to do
something as simple as bend the arm in just the right way to facilitate getting
it into the sleeve of a shirt, you begin to understand how impossible the most
simple movements become when the brain can no longer locate or send the signals
that make that arm work at will.
Although
the early stages are remarkable for how these skills come and go, the sad truth
is that eventually all the connections will be severed. For the meantime,
however, if your person spends an inordinate amount of time trying to figure out
how to put their arm into the sleeve of a shirt, it doesn’t take a brain
surgeon to figure out that holding the shirt and calmly moving the arm in just
the right way to facilitate that movement is going to help. Watching them
continue to struggle is not going to help them relearn that task and it will be
a constant source of embarrassment to them.
For
many of us, just being in the bedroom while a parent or spouse begins to dress
can be traumatic.
While it is probably easier for spouses to make this
adjustment than it is for adult children, it still needs to be done and it is
done all the time.
When I realized that my husband was having major problems with his dressing, I
wanted to help him but I also didn’t want to infantalize him either. However,
watching him struggle and the frustration he was obviously feeling as he tried
to do it on his own was no solution either. He had been an impeccable dresser,
he would not want to be seen in public with his clothes cockeyed and mismatched
or his shirt tail caught in his fly.
I
asked if I could help. At first he protested that he could do it himself. I
hovered. Finally, without his permission, I started handing his clothes to him
which alleviated some of the frustration of trying to figure our how to pick
them up in a productive manner himself. I laid his clothes out in order
and helped him choose what to put on. Eventually he became accustomed to my
being there every time he dressed. I took on the role of valet. My presence
became so familiar to him he hardly noticed that I was doing more and more of
the tasks.
As
for the bathroom, I hovered by the door. I handed him his towel and
robe, and as this stage progressed reached into the shower to hand him soap,
and shampoo. I used the time to talk about the plans for the day so
that my presence wasn't one of a warder keeping tabs on him and as his needs
increased my presence was no longer questioned.
They
have an easier time taking clothes off than they have putting clothes on.
Unhooking, unzipping, and unbuttoning, remains do-able longer than
being able to put those things together. You may or may not recall that your
child was able to undress themselves long before they were able to get their
clothes on without help. Let them do what they can do as long as possible.
Try
to keep the wardrobe as simple as possible. Slip on shoes, Velcro closings on
sneakers, elastic waistbands where possible. They will need help and there is
no way around it.
Try
laying out clothing ahead of time if it appears to be mismatched or
inappropriate.
Organize
their clothing by season in their closets and drawers and put out-of-season
items away and out of sight. The less choices there are the less frustration
the person faces.
In
order to capitalize on the familiarity of their dressing routines, note the
order in which they dress. Which arm goes in which sleeve first, which leg
goes in the pantyhose first. Do socks go on before or after trousers? Do half
slips go on before stockings, etc.? These are lifetime patterns that help
maintain structure in their lives when you begin to help. For example; something as innocuous as offering the left sleeve first when your
person normally puts their right arm in the right sleeve first can throw their
whole dressing sequence into a catastrophe as this illness progresses.
Work
from behind them whenever possible.
You are less obtrusive that way and
there is a greater sense of privacy. By standing behind your family member
you can reach your arms around them to close trousers and button shirts and
blouses as easily as you button, close and zip your own. You allow them to
do what they can do in this way, but you have that extra pair of hands to
assist when needed.
Tom was still able to get the belt
into the front loops of his trousers by himself but always missed the back
loops. By hovering behind him I was able to slip the belt into the back loops,
facilitating this part of his dressing routing without being too obvious. When
he lost the ability to buckle the belt, I reached around him and buckled it for
him. By working behind him he was less aware of the amount of help he was
actually receiving.
You must remember
that your family member still has enough awareness to feel embarrassment and
depression. Begin
by handing their clothing to them so that they grasp the items correctly.
Place their hands in the proper position to enable them to do as much of their
own dressing as possible.
This means that a major chunk of the primary caregiver’s time
must be diverted to their needs and there is no real way to avoid this.
This
is a very time and energy consuming phase of care. As much as you want
them to maintain their independence the reality is that they are loosing it
and need the same attention your children needed as they developed from
infants. There isn't any way around it, someone is going to have to do
it whether it is a family member or a professional helper.
If
they refuse your help, you are in for a ride unless you are persistent enough
and gentle enough to help them through their confusion and their possible
anger.
You
can accomplish almost anything if you do it with an accepting and gentle
manner. Often, if you keep them talking while you take care of those missed
or mismatched closings, belts, undergarments and whatever... they won’t be totally aware
of your helping.
Eventually,
any resistance you receive will pass.
In fact, all the behaviors,
will eventually pass. As
impossible as this may sound adult children are making these transitions
with elder relatives every day. Everyone gets past it. The most
difficult part of entering the private space of someone is mostly in the
mind. Just do it, but do it with love and consideration. There
isn't much choice.
Clothing
Recommendations
There
is no reason for men or women to change their clothing style in the early part
of the assisting stage, but changes are necessary by the end of this stage of
care. However, I do recommend that new items that are bought are bought with
thought about what is going to be involved in dressing a person who will lose
elasticity in movement, who might develop behaviors that make dressing
difficult, and who will become incontinent. Looking towards a more casual
wardrobe for both men and women makes sense.
Velcro
tabs on shoes are a great help. Your person will be unable to tie
laces. Zippers, belts, loops, snaps, button holes, all of these
closings will present problems. Contrary to expectation, Velcro tabs
on clothing don't help much. They still have to be aligned and that
involves new learning. So before you remove all the
buttons and snaps and spend hours sewing on Velcro just realize the problem
doesn’t change much for them.
The
Taking Charge Stage of Care
Facing
them while you assist in dressing probably doesn’t make much difference in the
early stages, but as the disease progresses it can be dangerous working in front
of them. If they misinterpret what you are doing they might strike out at you to
make you stop. Also many family members develop involuntary tremors and jerks.
They can be like Parkinsonian Tremors or myoclonic in nature.
An arm or hand or leg can fly out involuntarily with tremendous speed and force.
You are less of a target if you work from behind.
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Once
they are using incontinence products and they will be by the time this stage
occurs, working from behind insures a greater
sense of privacy and it is a more efficient place to work. For
more information on working with incontinence click
here....
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Pick
your battles carefully. I learned that having the heel of Tom’s socks on
his ankles because he insisted on putting them on without help was not the
end of my world. He no longer noticed and I learned not to. Getting him into
a winter coat when he insisted it was sunny and warm out because he was
looking out of our window in our warm apartment was a battle worth taking
on. I let him leave our apartment coatless. I carried the coat and when we
got out doors where it was cold, he usually put it on without comment. And I
didn’t add, "I told you it was cold! You never listen to me
anymore."
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Start
choosing clothing that is easy to get in and out of and start planning for
the changes that will be coming. You need to purchase clothing that will
help facilitate your ability to dress them and they will be making a
transition to incontinence pads during this phase of care.
Clothing
Recommendations
At this stage of care your person is still concerned with their appearance and
they want to look their best and most caregivers want to maintain the family
member’s appearance the way it has always been maintained. This is a positive
attitude for the caregiver to keep as long as it doesn’t begin to infringe on
their sanity. The caregiver can do just so much. By the end of this phase of
care the shift must be made to what works best for the caregiver and if it means
dressing your person in casual clothes and putting the high heels, the three
piece suits, the silk shirts and the slips, skirts and panty hose away, then so
be it. You can still dress them well, it just won’t be as it was. Be aware of
who they are instead of who they used to be. And try to hold on to the notion
that because they are different - they have not become less.
Also
keep in mind that just because your person is confused doesn’t mean they can’t
be embarrassed. If their clothes are in disarray then take them aside and help.
How often do women spontaneously flip a label back inside a blouse for someone
they barely know? Being direct is the best way to approach anyone. Behave
towards them as you would with anyone else if this situation presented itself.
If you have ever had the experience of being in public with your fly unzipped,
or your skirt caught in your panty hose weren’t you relieved to have someone
tell you so that you could correct it rather than discover it later? However,
also know that their social awareness will deteriorate over time. Their
appearance will matter less and less to them. Being comfortable will take over.
However,
the behaviors that develop during this stage of care do add to the
problems. They can become quite combative, some undress in public, some
insist on wearing odd combinations of clothing, most will insist that they don't
need help. Much of what is going on in the environment adds to the
problems and please look into the sections on this page that deal with
that. Click here....
For
Men:
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Casual
pants that have elastic waist bands with a drawstring. Fly fronts with a
snap closing are easier to deal with than the purely pull-up type unless
they are sweats or have waist bands that have a lot of stretch to them. Keep
in mind that, at some point in this stage you will be
dealing with pads and cleaning implements and you want to be able to move
your person in and out of the bathroom with as much ease as possible.
Believe it or not, having to struggle with pulling pants up and down takes a
toll. It is easier to deal with elastic bands that have a snap front and
drawstring.
The
drawstring is of added importance. The drawstring allows you to tie them
into their pants so that they are less able to pull them down themselves.
The time will come when you don’t want them going to the bathroom
unassisted. Confusion may leave them urinating in places other than the
bathroom or pulling off their clothing inappropriately in public. There have
been occasions when family members have even removed the pads themselves
with a resulting mess to deal with.
That
drawstring tied in a slip knot may be just enough of a deterrent to help you
keep control of the situation. There are also baby-proof devices that slip on
the drawstrings and are easily operated by the caregiver but which may be just
difficult enough to keep the family member from figuring them out. These can
be purchased in baby/toddler departments and sewing stores.
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Change
from boxer shorts to briefs. The use of boxer shorts instead of briefs is a
personal choice that is usually a long standing one. If your male person uses
briefs then you are ahead of the game. If your male person prefers boxer shorts
you may have a problem getting them to change to briefs. However, I feel it is
necessary to make the change at some point and the reason is very basic.
Whereas
briefs hold the family jewels in a contained place, boxer shorts do not.
With everything hanging free, so to speak, there is little to contain that first
accident that is inevitable. The first accidents will most likely involve your
person not getting themselves completely out of their fly opening in time
and it will progress to the point where they will have no idea if they even have
it in their hand, let alone aimed properly. And it is easier to clean
that first unexpected bowel movement if it is contained in one place and not
down the leg.
If
your person is resistant to wearing briefs and 'accident’s' aren’t
happening, let it be for another time. Explaining why you want to make the
change may only result in a lot of protestations on his part.
If
'accidents' are happening then you have to be creative.
Remember that by the
time the change needs to be made, it is likely that your male person will
have lost some sensory input so that by not calling a great deal of
attention to the changes being made he may not notice. Working from behind
him may cut down on his awareness as well.
One woman I met told me she inserted a pair of briefs in her husband’s boxers
before putting them on him. The combination was handled as one unit. It took
some gymnastics getting his feet in the double leg holes but she became rather
adept at it and he never realized he was wearing two pairs of underpants. By the
time she eliminated the boxers altogether, he had no awareness of the change. By
then she was adding a pad as well and he never noticed the extra padding at all.
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If
your person is someone who undresses unexpectedly, suspenders
can inhibit getting out of clothes. Suspenders under a pull over shirt makes
it more difficult for them to unhook or remove without help. I must point
out that it also makes it more difficult for you
too, but, if your person is getting out of their clothing inappropriately it
may be a solution to what will eventually be a passing problem.
One
caregiver I know resorted to putting the pants on backwards to deter her family
member from getting undressed, another put a baby safety pin on the inside
of the zipper to keep the slide tab from working. Not being able to get the
zipper down was enough to deter her family member until she could take him
to the bathroom. He was still able to understand that he had to have his
pants open in order to urinate. When she saw him fiddling with the zipper
she learned to ask if he had to go to the bathroom. It saved a lot of
unnecessary running back and forth in this instance. This behavior is a
phase and like all others it will pass.
Our
people begin to loose flexibility
during this phase of care and it isn't always easy to bend arms and elbows
to assist in getting shirts on. I bought flannel shirts for winter and
100% cotton for spring and summer. Like a small child they may balk at
pulling a shirt over the head. Cotton turtle necks are the easiest to
pull over the head and actually have more stretch than T shirts.
For
Women:
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Pants,
shorts sweats etc. The
same as men.
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Skirts,
dresses, flowing tops, scarves, pants, shorts, all become obstacles for women. Women have so
much drapery to deal with one wonders how they can be expected to organize any
of it and find the toilet on time. Pants are easier
to deal with. If you insist on dresses, carry a large plastic bag clip, or
banana hair-clip to hold their clothing out of the way while you assist them so
they can sit on the toilet and not on their clothes.
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Women
also have the added problems of panty hose, stockings, foundation garments,
bras, stretch girdles and slips to deal with. It
is time to forego the panty hose and move to knee highs.
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Since
women also have specific preferences about their undergarments, changing these
items can be a difficult barrier to cross. All I can say, is the
sooner you can get her out of the entrapments the better. Whether a bra clips in front or in
back eventually becomes the preference of the caregiver. Either way, your female
family member will need help with this part of dressing. At this stage of care I
recommend that you continue with whichever style of bra your family member uses.
There is little need to change this article of clothing at this time.
My friend John Raposa once remarked in my support group, that he had gotten to
the point where he could get his wife in and out of her panty hose in a two
minutes flat. He added that this was a skill he could have used when he was a
young man and had he known how easy it was, wouldn’t have viewed the process
with such awe. John also stopped dressing his wife in pantyhose shortly after
that comment was shared. It became an unnecessary task. His wife lost awareness
of whether she was wearing them or not and he began dressing her in more casual
clothing. He opted instead for knee highs, stretch lycra panties which gave her
a sense of being held in and something that would hold an incontinence pad snug
to her body. His assisting her in her dressing became a ritual they shared and
it paved the way to the development of new rituals as her care needs increased.
John makes the point....
I
met another elderly gent, while sitting in as a guest member in his support
group, who offered that his wife was still wearing a combination foundation
garment that hooked up her entire back and which had the tabs for stockings
which she still wore. I saw a roomful of women drop their jaws, the clacking
sound echoing though building, followed by a spirited discussion of how he
needed to get her out of those garments as soon as possible. One of the ladies
in the group offered to go with him to pick out more suitable and workable
items. He declined but did write down which stores to go to and which items to
ask for. I think it was a testimony to this group leader, that she had created
the aura of openness that allowed this gent to ask his questions without
embarrassment and the helpful response he got from the other group members was
both informative, relaxed and in a few instances quite humorous.
"Where is it written that only women can be
effective caregivers?"
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Women’s panties are often very flimsy
affairs. I recommend Cotton knit panties modeled after the men’s brief, or men’s/boy’s
brief’s, or stretch cotton/lycra panties instead of the flimsy nylon panties
women may wear. Frilly panties will not hold a pad in place properly.
I think it is safe to assume this generation of women haven't yet latched on
to the thong. You will probably meet with resistance but life can be
easier with something able to hold a pad in place and using pads is where
you are headed if you aren't already there.
Since
the sensory input becomes impaired as a part of the normal progress of this
illness, a woman will have as much difficulty as a man giving the proper signals
to indicate the need to go to the bathroom, and by the end of this phase of care
the chances are that you will get the signal late. The pad will alleviate some
of the anxiety in getting your person to the bathroom on time.
At
this phase of incontinence care the problem is mostly dealing with urine and
some bowel incontinence. The
reasons for changing to a more substantial underpant are twofold:
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Keeping
the underwear snug and close to the body is essential to holding an
incontinence pad in place. The snug fit gives the wearer a greater sense of
security. Women who have ever used menstrual pads know exactly what that
means.
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When
incontinence pads are wet they become heavy and droop. Once air hits the
liquid in the pad, the pad becomes cold and clammy. This is uncomfortable
for the wearer, and it is a problem for the caregiver if you aren’t in a
place where you can change the pad right away. A snug fit holds it closer to
the body and body temperature will keep it warm.
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At
this stage of care, getting blouses, shirts, sweaters on them will not be a
problem. Their flexibility and their ability to assist in their dressing
will be about the same as it is for men.
In
General
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If
you are purchasing new clothing lean towards 100% cotton, rayon, linen, silk
or wool. These are fibers that breath naturally.
Synthetics are plastic, even with blends and the new finishes they feel
clammy on the skin and they don't breath the way the natural fibers
do. And contrary to belief, the synthetics stain and once they stain
you cannot get the stain out. The new finishes make cotton and rayon just as washable and wearable as anything
else on the market. Cotton knit items such as polo shirts, T Shirts,
underwear, pajamas, socks, turtlenecks, casual wear are recommended because
the knit stretches and will be an aide in dressing them when their
flexibility is assailed and their skin quality begins to break down.
This
is the period in which everything that isn’t attached to them will
probably be lost. Gloves, handbags, wallets, glasses, keys, scarves, false
teeth. Try to keep what they need to carry with them to a minimum. Leave the
valued/or sentimental items such as grandmother’s antique shawl and
grandfather’s watch fob, at home.
The
rest you play by ear and use your common sense.
The
In-charge Stage of Care
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Once
they are chair-bound and bed-bound their dressing needs change again.
There are several scenes in "Marvin's Room" wherein the father
character, who obviously has some form of dementia is shown in bed in a full
suit with shirt and tie. I can't think of anything more absurd for
someone in this stage of care. The suit would be unthinkably
uncomfortable and the logistics for the caregiver in terms of changing
incontinence products would be Herculean.
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Moving
a bed-ridden person around whether it is in a wheel chair or in bed is a
time consuming and strength consuming ordeal. Make the clothing
choices as simple as possible. Try to avoid shirts and tops that have front or
back closings. Zippers can do a tremendous amount of damage to the
skin. They also have difficulty maintaining body heat, cotton socks,
fleece wraps, layering is the byword.
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100%
cotton turtle necks are actually easier to get on and off a late stage
Alzheimer's person than are T shirts. The neck gives more and the fabric
stretches more. Because late stage Alzheimer's people are losing the
ability to regulate their own body heat the high neck offers some warmth and
isn't uncomfortable for them even in summer. With fans and air
conditioning the room can be uncomfortably cold for them if they are
underdressed. Put the arms in first, push the sleeves as far up
the arm as possible and slip the shirt over the head. Reverse to
remove.
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Your person is totally unable to assist in their
dressing. Pants, pajama bottoms, sweat pants, dresses and
skirts aren't necessary once they are in the terminal stage of this illness
and completely bed bound. It is extremely
difficult to change incontinence products while having to remove clothing
from the bottom half of the body. They will be unable to shift their weight at all and you
will be lifting dead weight while trying to pull pants on and off.
Keep the lower torso warm and covered with down comforters, flannel sheets,
or fleece throws instead.
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The
clothing products advertised in home-health care catalogues feature dresses that
connect in back for women as well as dresses that leave the seat area
open. On the surface this seems like a good idea for
someone in a wheel chair and they probably are for people who still have
their cognitive functions and a say in what they want to wear and how they
wish to present themselves. The skin of
people in the last stages of Alzheimer's is precarious at best. For
someone who is spending all their time in a sedentary position back closings are
going to rub and induce pressure points on the skin which then lead to bed
sores and they won't be able to tell you of their discomfort. Getting
them in and out of clothing is a major problem for caregivers and they need
to make the process as simple as possible. Please don't waste money on these things.
It is less expensive to shop in ordinary stores.
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Also,
the majority of these items are made of Polyester/synthetic blends. You might as well
wrap your person in a plastic bag in my opinion. Any synthetic fabric,
with the exception of fleece will not do well on the fragile skin of any
late stage patient.
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Clip
all the labels out of the necks of every shirt/top you put them in.
Labels rub and itch the skin, your person will not be able to express how
uncomfortable this is. They also rub and can be a cause of pressure
points.
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Keep
fabric from clothing, wraps, and sheeting that surrounds them smooth.
Lumps, ridges, folds, pleats in fabric can rub on skin
and cause pressure points.
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Use
100% cotton sheeting. Flannel is fine and in fact in the last stages
preferable because it holds warmth better than percale. There
are also knitted sheets on the market now. These would also be
recommended.
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