When Your Partner Becomes Visually Impaired ...
Helpful Insights and Tips for Coping
by Carol J. Sussman-Skalka, CSW, MBA
(Inside front cover)
Firsthand feedback about the value of support groups
"The group is a lifesaver. What we discuss really
helps ... coming up with some of the solutions to
some of the problems."
"Being in this group makes you think about what
you're doing and where you're going. We can help
and learn from each other."
"Hearing the concerns of others, talking about the
guilt -- just knowing that other people have the same concerns, same
anxieties, and
knowing you are not
alone is helpful."
The Program for Partners Project was funded by the Grotta Foundation
for Senior Care
and the Wallerstein Foundation
for Geriatric Life Improvement.
(page 1)
First Steps
When your spouse or partner becomes visually impaired, both of you are
likely to feel
overwhelmed. You also may experience a range
of feelings, from sadness to guilt, and there are many day-to-day
adjustments to make. It's
hard to know where to begin -- or how to access information about
vision conditions,
treatment options,
help and resources.
Vision rehabilitation services -- which include techniques for
accomplishing daily tasks
and resuming leisure activities, as well as emotional support --
can make an important difference in the lives of people with vision
loss, particularly in
their ability to regain independence. Encouragement from family and
friends also can be
vital in supporting their participation in these training programs.
While you can play a key role during the rehabilitation process, you
undoubtedly
have many adjustments and concerns of your own. You may find yourself
putting
aside your feelings and needs to focus on helping your partner cope.
Yet, in many cases,
you may feel alone and at a loss about what to do or how to help. As
one couple shared,
"Vision loss happened to us."
You also can benefit from programs to better understand your
situation, get support for
your own emotional needs, and learn about relevant resources and
services. Although
your specific concerns may differ based on the extent of your
partner's vision loss -- and
how long you've been dealing with it -- you have many common issues with
other
sighted partners.
Some of the most frequently expressed concerns and feelings are
discussed on the
following pages. They include: understanding what your partner can see and
do,
communicating successfully, relating to family and friends, dealing
with independence
and dependence issues, appreciating the benefits of vision
rehabilitation and handling
stress. We hope that this resource will provide support and
information to help you cope
better, and will, in turn, create a more positive quality of life for
both you and your
partner.
(Page 2)
Share Your Feelings:
You're Not Alone
When your partner becomes visually impaired, you may experience many
different
emotions, including fear, guilt, anger and frustration. These feelings
can be hard to admit
or accept, because they are commonly perceived as negative. It may
help to keep in mind
that feelings are neither right nor wrong. However, feelings can get
in the way of your
relationship with your partner if they are not recognized or understood.
Guilt
One of the most commonly expressed emotions,
guilt can appear in many forms. It may drive you
to take on unwanted responsibilities. As one partner reluctantly
admitted, "I don't like
reading financial statements, but I do it because I feel guilty."
Others experience guilt
when they forget that their partners can't see things or expect that
they should be able to
see something because they saw it before. You also may feel guilty
about taking time for
yourself. And guilt may arise
when you can't meet an immediate need or have to refuse
a request. One wife said poignantly, "If I can't take him
somewhere, I feel guilty because he depends on me to get out."
Remember that you're not alone. Your partner probably feels guilt as
well -- most likely about the additional burdens and responsibilities
being placed on you.
It is interesting to note that guilt is defined as remorse for doing
something wrong.
Therefore, people may say they feel guilty, when actually they
are experiencing regret, wishing that the situation in which they find
themselves was
different (Schmall et al., 2000). Talking with your partner about
"guilt" may bring some
relief. By learning that you both have
similar emotions, you can each develop a better appreciation for the
other's position.
(sidebar)
"If I can't take him somewhere, I feel guilty because he depends on me
to get out."
(page 3)
Fear
Fear, another frequently expressed feeling, often stems from wondering
whether vision
loss will get worse: "Will my partner become totally blind?" You also
may fear for your
partner's safety while performing tasks such as cooking, or getting
around at home or in
the community: "Can my wife be left alone?" Inevitably, there are
questions about the
future: "What happens if
I become disabled or die? How will my spouse manage?" This issue is
particularly
difficult when your partner has other conditions aside from vision
impairment, such as
physical limitations or memory problems. While there are no easy
answers, encouraging
as much independence as possible, and talking about
alternatives for future living arrangements, can be good first steps.
Frustration
Frustration is common, particularly when you're trying to figure out when
to offer help -- and how much. It's hard to encourage someone to
exercise his/her
independence if there is reluctance to try new techniques. You may do
more for your
partner than you think you should due to safety concerns. Others admit
that they
sometimes find it faster and easier "to get the job done," rather than
let partners do it
themselves. But keep in mind that taking over can affect your
partner's progress toward
independence, causing feelings of uselessness and loss of control.
Further, if you "take
over," you may feel even more frustrated and angry, as you're now
managing even more
responsibilities that may not be necessary.
Anger
Many people reluctantly admit feeling angry about the whole situation.
Like you, they
struggle with their own loss of independence, as they take their
partners everywhere or
adjust their schedules to meet their needs. You may feel irritated by
having to stop what
you're doing to meet a request, and then feel badly about your
reaction. One woman
stated, "I know if he could see
to do it, he would do it himself." Resentment also arises when you
feel that your partner
could be more active and independent, or if you're not getting
much-needed time for
yourself. As one partner shared, "I have a life, but
it's not my own."
(sidebar)
"I know if
he could
see to do
it, he would
do it himself."
(page 4)
Sadness
Feeling sad -- even depressed -- especially at
the beginning, is common for both people in the relationship. While
counseling often is
available for the person experiencing vision loss, you, too, can
benefit from the same kind
of support. As one
sighted partner reported, "There's a tremendous, overwhelming sadness.
It's a loss of
plans and a loss
of what you thought [retirement] would be." Another shared, "I was so
worried about his
being depressed,
that I couldn't [let myself] get depressed, but I felt I needed
therapy." Sighted partners
who sought professional counseling found it very helpful to
acknowledge, and validate,
their feelings.
It may not be easy for you to talk about emotional issues with your
partner. As one spouse
shared, "I keep everything inside and that is not good for me." As
your partner struggles
with the adjustment to life with impaired vision, he/she may not
always recognize the
impact it has on you. At the same time, you may not want to add to
that burden by sharing
your own feelings. However, those who attended partner support groups
found this outlet
to be incredibly helpful. "Sometimes, you think you're alone, but
being in this group, you
find that many people have the same problems and feelings you do." Sharing
with
others who are in the same situation can ease some of the negative
feelings and allow
couples to more fully enjoy their life together. As one man explained,
"Being able to
define my feelings better has made it easier for me to talk to my wife
about them." To
locate a support group in your area, call Lighthouse International's
toll-free Information
& Resource Service: (800) 829-0500, or E-mail: [email protected].
(sidebar)
"Sometimes,
you think you're alone, but being in this group, you find that many
people have the same
problems and feelings you do."
(page 5)
Understanding What Your Partner Can See and Do
If your partner's vision impairment developed recently or is
progressive, it's hard to get a
handle on what he/she can and cannot see, and how vision loss affects
what can and
cannot be done. When in doubt, ask! All people with vision loss do not
see the same.
Different eye conditions cause different types of vision impairment,
and there are varying
day-to-day consequences of each
condition. For example, a person with macular degeneration may be able
to move around comfortably using peripheral (side) vision, but may
have difficulty
recognizing faces or reading. A lack of information can create confusion
and
misunderstanding for family members and friends when your partner can
do some things
but not others. As one woman said, "I didn't realize how little he
could see. I'd get
annoyed if he couldn't find something because he was functioning so
well in other ways."
During support group meetings, many found it helpful to experience
what their partners see through the use of vision simulator glasses,
which approximate
different vision conditions as well as blindness. While wearing
simulator glasses,
participants tried different tasks like writing a check or reading a
newspaper. These
experiences allowed them to better appreciate the frustrations of
managing everyday
activities. Afterward, one person noted, "Now I understand how
sometimes he can get a
glass of water off the table, and sometimes he can't." For information
about vision
simulators, call (800) 829-0500.
Sighted partners also had the opportunity to use different optical
devices, such as high-
powered magnifiers, which gave them a firsthand view of the challenges
involved in
learning to use them, and an understanding of what these devices can
and cannot do. One
man admitted, "It's very tedious to use these devices -- they're
frustrating."
(page 6)
During vision simulation activities, sighted partners experienced a
range of emotions --
including sadness, frustration, guilt and fear. One participant
commented, "It's scary to
look at the world through this perception." But the experience also
provided a starting
point for talking with their partners about the impact of vision loss
-- to learn more
details about the effects of their conditions, such as how lighting
affects them, which
colors improve contrast or which print size is most accessible. In
addition, you also may
find it useful to attend a low vision examination with your partner.
Use it as an
opportunity to ask questions and learn more.
(sidebar)
What is a Low Vision Examination?
An eye examination conducted by a specially trained low vision specialist
is usually the first step in the vision rehabilitation process. Special
charts
are used to determine how well individuals can see up close and at a
distance, as well as
how well they are able to distinguish objects from their background
(contrast sensitivity).
The specialist also will want to know how vision loss is affecting
everyday activities.
Optical devices, such as high-powered magnifiers
and telescopes, often are prescribed -- and instruction in their use is
provided -- to
help people maximize any remaining
vision.
(page 7)
Enhancing Communication
Communication can be a challenge for any couple. However, when
one partner is visually impaired, there are additional sensitivities
that come into play.
Many couples admit that talking openly about mutual frustrations, and
how vision loss
has affected them, is not always easy.
What gets in the way of talking freely? Couples share
the following concerns:
- Difficulty expressing anger and frustration out of fear of hurting
the other's feelings
- Hesitancy to say anything that will be taken as criticism
- Discomfort with putting one's own needs first
- Guilt about having, admitting or expressing negative feelings
People in relationships often keep frustrations to themselves because
they don't want to
make each other feel badly. For example, your partner may accept
unwanted assistance to
be polite. On the other hand, you may clean up a spill yourself rather
than point it out. But
these unexpressed feelings can build up over time and get in the way
of your relationship.
As one person shared, "When I feel worn out, I start getting angry at
my wife's requests
but I don't want to show that I'm angry. I don't even like to
recognize it in myself. It feels
selfish. But unless I can feel good about myself, I really can't be
caring of her, so I kind of
own up to my feelings. It's hard."
Some couples point out the benefits of venting feelings on both sides
and moving on.
Others find that the best way to ensure that the partner with vision
loss does not feel like
the object of sympathy is to be open enough to argue. Talking candidly
about how
vision loss affects your lives also can bring you closer together. One
partner
commented, "We were very, very close before, but we are probably even
closer now."
Even if you haven't routinely shared concerns or feelings with one
another in the past,
there's no reason why you can't start now. One man summed it up well:
"The frustrations
-- it's good to get them out. We talk to each other about it. It
doesn't change things, but
you do feel better."
(sidebar)
"We were
very, very close before, but we are probably even closer now."
(page 8)
Tips from Couples Like You
- Positive communication often requires some preparation. Think about
how you feel,
what you need or how you'd like things done.
- Focusing on your own feelings is less likely to put the other person
on the defensive. For
example, say: "I feel upset about ..." or "I would appreciate help with
..." rather than:
"You made me feel ..." or "You could have done ..."
- Being specific about what you want is less likely to cause a
negative reaction. Ask your
partner to be specific about what kind of help is needed, and you
should do the same.
- Acknowledge what you heard to assure your partner that you're really
listening.
- Give your partner your full attention to prevent missing important
points. Conversely,
ask the other person to tell you what he/she heard to avoid
misunderstandings.
- Postpone conversations when emotions are high. Wait for a time when
both of you are
calmer.
- Taking time to better understand each other's situation is likely to
create more empathy.
As hard as it may be, try to put yourself in your partner's shoes.
Additional Factors to Keep in Mind
Nonverbal expressions often are so automatic that it's easy to forget
that you're even
using them. Try to remember that the usual gestures, nods, smiles or
frowns may
not be visible to your partner. One
woman shared a useful tip: "I call
out my husband's name to get his attention. Since he can't see that
I'm looking at him, he
doesn't know when
I'm talking to him."
(page 9)
Similarly, your partner may pay closer attention than ever before to
your touch, as well as
to the tone and volume of your voice -- all of which can convey
unspoken feelings. One
woman was surprised that her husband knew she was angry by the
stiffness of her arm
when they walked together.
Most likely, you will have to communicate verbally much more often
than before, and
what you say will need to be more specific. For example, placing a
vase of flowers on a
table without saying anything can lead to an unexpected mishap. And
telling your partner
that "the orange juice is over there" will likely result in a response
like, "Where is
'there?'"
You may feel that you're being interrupted constantly, until you
recognize that your
partner simply can't tell that you're in the middle of doing something.
By communicating more, these situations may be avoided. After many years
of
experience, one man suggested: "I communicate everything that I do so
that my wife is
not left wondering what I'm doing or where I am. If you can get
started early with that
constant communication, it sure helps."
(sidebar, top)
"There's always a price for keeping things in. You know if your
partner has had it -- you
somehow get the message -- so there's communication without actually
communicating.
Sometimes, it's better just to say it and get it out in the open."
(sidebar, bottom)
The Lighthouse National Survey on Vision
Loss revealed that 23% of respondents who
are not visually impaired feel "awkward or embarrassed" because they
do not know how
to behave with people who have impaired vision. This feeling is even
more common
among people who report that they have a close family member who is
visually impaired
(32%).
(page 10)
Relationships with Family
and Friends
Family members and friends want to be supportive and helpful. You
already may have
found that help is readily available from your children and/or other
relatives. In some
cases, vision loss brings families closer together. However, many
people have never
known anyone who is visually impaired, and they may feel uncomfortable
about how
to interact and awkward about offering help.
Some relatives may be happy to help, but they don't know how. Other
family members
may have difficulty understanding that some vision problems are not
correctable. Sharing
information about your partner's vision status, how it affects
everyday life and some
helpful tips may encourage questions and help everyone feel more at
ease (see "Educating
Yourself and Others"
on page 11).
One of the hardest things to do is ask family members or friends for
help when you
need it. It's understandable that you don't want to burden anyone --
even though you
could really use the support. You may feel reluctant to involve other
people because your
partner doesn't want others involved -- he/she may fear being pitied or
may prefer to
keep the situation private. This obviously makes it difficult for you
to get assistance or
emotional support when you may need it the most. Talking with your
partner about the
help you need may make him/her feel more comfortable about receiving
assistance. And
finding ways to return favors can make you both feel more giving.
(page 11)
The Impact on Your Lifestyle
Couples in situations like yours sometimes need to find new ways to
maintain their social
lives. Some found that their partners were not particularly
comfortable eating out in
restaurants, and others began to entertain more frequently since their
spouses were more
secure in their own surroundings. Couples also gained new friends in
their support
groups.
Socializing with others in similar circumstances can be very
beneficial for both of you, as
it allows you to observe how others are dealing with everyday
activities and social
situations. If a support group is not available in your area, consult
your local vision
rehabilitation agency for help with contacting other couples dealing
with vision loss. You
even may consider starting your own support group. Connecting with
others by phone or
E-mail also can help reduce isolation and provide emotional support.
Call (800) 829-0500
to obtain a copy of Programs for Partners of People with Impaired Vision:
A Discussion Guide for Support Group Leaders.
Educating Yourself and Others
Below are suggestions from people who are visually impaired:
- Let me know when you enter or leave a room.
- If you address me by my name, I will know that you are talking to me.
- If other people ask you what I want, let me respond, so they realize
that they can talk to me directly.
- When you think I need help, ask me first. If help is requested, I
can usually tell you what
I need or how we can do it together.
- Let me do as much as I can, even if it takes me longer or if I do it
differently than you
would.
- When providing directions, try to be as specific as possible. Instead
of saying, "It's over there," try: "The tape recorder is in the middle of
your dresser."
- You can use terms like "visually impaired" or "blind," as well as
conversational
language like "look" and "see."
- If you want to shake my hand, tell me so that I can respond to
your gesture.
(page 12)
Dealing with your partner's vision loss often can impact your
individual social life.
As one woman commented, "I used to have a more independent life; now I
spend most of
my time with my husband, and I don't socialize much with friends."
During support
group meetings, sighted partners encouraged each other to maintain
friendships, and to
continue hobbies, exercise regimens and community involvement. And you
can stay in
constant touch with your partner by using cell phones, pagers or
walkie-talkies.
Even if your partner encourages you to continue your usual personal
activities, you still
may feel reluctant to do so. It's difficult to know if your concerns
about leaving your
partner alone are realistic or if you're simply being overly
protective. One woman,
hesitant to leave her husband to take an overnight trip, found that he
enjoyed staying by
himself; it gave him a feeling of independence. You may feel more
comfortable
pursuing your interests if your partner also tries to reestablish
his/her own hobbies and friendships. It appears that when both of
you are involved in purposeful activities, there is a greater sense of
balance
in the relationship.
Many couples find new activities that
can be enjoyed together: going to the
gym, taking walks, doing crossword puzzles, dancing, and attending
shows and concerts. Some continue to travel -- going on cruises, beach
vacations or
family visits. One woman shared, "We have a very
full life."
(sidebar)
"We have a very full life."
(page 13)
Dealing with Issues
of Dependence and Independence
It's normal for you to struggle over when to offer assistance, how
much to help and when
to encourage your partner to do things alone. It can be very difficult
to hold back as you
watch someone undertake a task that was so much easier and quicker to
accomplish with
full sight. However, providing unneeded assistance, or taking over in
order to complete a
task, can come at an enormous price -- feelings of uselessness and
excessive dependency
for your partner, and added burdens for you.
While there are no simple answers about when, or how much, to help,
it's much easier
when couples talk openly about this issue. There may be certain things
that your partner
wants to do on his/her own, and other tasks that
you can do together. There also may be activities that you'd like to
see your partner
continue but you're not sure they're possible. Unfortunately, many
people mistakenly
assume that people who are visually impaired have to give up many
routine tasks or
favorite activities. Certified rehabilitation teachers can provide
necessary information,
encouragement about what
is possible and training in new ways to perform everyday activities.
Most activities can be
adapted, and special equipment and computers may be utilized to
continue favorite
interests safely and successfully. To find
vision rehabilitation agencies in your area, call (800) 829-0500.
People who are new to vision loss may not be ready to take advantage
of these services,
or they may need encouragement. Participating in a support group and
meeting others
who are visually impaired can sometimes help people take this step.
Or, as your partner
adjusts, you may want to revisit every now and then a discussion about
vision
rehabilitation services. Even when people receive these services, they
often can benefit
from additional training, especially if their vision changes or they
discover new activities
to pursue.
(sidebar)
"When my husband succeeds, he is just elated, and it makes me feel good,
too."
(page 14)
Many of the sighted partners in our support group programs told us
that their spouses
don't like feeling dependent on others and strive to be as
self-sufficient as possible. One person put it well: "Dependency
really robs people of self-
esteem. The more they learn, the happier they'll be and the happier
we'll be. And that's
what I'm striving for." Many also talk proudly about their partners'
participation in a
variety of household responsibilities. As one woman said, "When my
husband succeeds,
he is just elated, and it makes me feel good, too."
However, it can be frustrating when your partner won't accept help,
even when it appears to be needed. It's difficult to watch your
partner's frustration when
struggling with a task. Rather than immediately offering
to handle it, one man learned to ask, "Is there a way for me to help you
to
do this?" Another husband commented, "I have to restrain myself
because when she
wants to do something, she says, 'I have to do it,' and I don't want
to interfere with that."
While you may get impatient when things take longer to get accomplished,
try to
recognize when it's better to "back off."
(sidebar)
An important consideration is the balance of giving and receiving in
the relationship.
Although not always acknowledged, receiving is much harder than
giving. (Lustbader,
1995). While responsibilities
may shift, it's important for your partner
to feel that he/she is contributing to daily activities -- and to the
relationship.
(page 15)
Frustration also may arise if your partner settles into a pattern of
allowing others to
do everything for him/her. How can you motivate your partner to do the
reasonable tasks
independently? And are these expectations realistic? Working together
may be a good first step. One woman shared how she sets things up so
that her husband
can use the microwave or washing machine
on his own. Another cleans up a messy kitchen after her husband
prepares lunch for
himself. Using this gradual process, success can build on itself. If
you're not always doing
everything,
your partner may find ways to accomplish tasks alone.
As always, communication between partners is key -- about when to give
help and what
specific help is needed. As one woman noted, "You can try to
anticipate a need, but it's
got to be their job to ask for help. And it's our job to give that
help as best we can."
(sidebar, top)
Couples Share Tips
- If your partner with impaired vision says, "I can do it," let him/her do
it!
- Your partner should tell you what type of help is needed, and when.
- Take time to discuss who should do what, and how to work as a team.
(sidebar, bottom)
You sometimes may feel reluctant to involve your partner in decisions
or other issues,
and this can strain the relationship. Allowing your partner to stay
involved is very
important. One woman emphasized how helpful it was to have her
husband's emotional
support when she visited the dentist: "Just because he can't see, he
can still feel; he can
understand."
(page 16)
Getting Around Safely
It's understandable for you to fear for your partner's safety while
getting around at home
or outdoors -- particularly if he/she hasn't been exposed to the
knowledge, skills and
techniques (acquired through vision rehabilitation) that enable people
with vision loss to
travel safely and independently.
Getting information about safe travel methods can reduce fears and clarify
misconceptions. There are several mobility techniques that people with
impaired vision
can learn. These include how to use: their remaining vision (and other
senses); another
person; a white cane or a dog guide. Certified orientation and
mobility specialists help
determine the most appropriate method(s) based on the individual's
vision status, goals
and preferences.
Even if your partner does not want to travel independently, a mobility
specialist can offer
suggestions for safe movement at home, as well as provide sighted
guide training to help
you feel more at ease when traveling together.
Many people with vision loss have a difficult time accepting a white
cane, as it visibly
identifies them as being visually impaired. They may not want others
to know, or they
may feel vulnerable, embarrassed or concerned that people will pity
them. Your attitude
can affect your partner's decision to use -- or not use -- a white cane,
so it's important to
educate yourself about its many benefits. Contact your local vision
rehabilitation agency
to talk with people who have learned to be independent travelers, and
hear firsthand about
their experiences and successes.
You also can ease your personal concerns by participating
in, or observing, your partner's mobility training session (get
permission to do this first). This opportunity will allow you to ask
questions and observe
mobility techniques and strategies. As one sighted partner noted, "It
helps to be shown
how mobility instruction works. It's important to get the
(page 17)
hands-on experience." For example, you'll get a better understanding
of the types of
information a white cane gives its user, such as the widths and depths
of steps or curbs.
White canes also enable a user to identify textures, and to discover
objects or holes in
one's path. This experience also can demonstrate how proper cane use
increases safety,
stability and control. Armed with this knowledge, you can feel more
comfortable encouraging the use of a cane.
Even if you both prefer using a sighted guide technique, the cane can
increase your
partner's feelings of safety and reduce the burden on you. As one cane
user shared, "I just
think it's fair to try and do what I can, and not to put all the pressure
on him to have to watch everything."
(insert box)
Using a Sighted Guide
With the sighted guide technique, the person with impaired vision
holds a guide's arm
just above the elbow. The guide walks one-half step ahead and communicates
when
nearing curbs, steps or other obstacles. For example, "We're
approaching a staircase that
is going up." Or, "We are coming to a door, which will open on your left."
The guide must pay special attention in spaces like doorways, to
ensure that the path is
wide enough to accommodate both people. There are special methods for
handling
different situations such as narrow passages, getting into a car or
taking a seat. For details,
call (800) 829-0500 to order
Take Charge of Your Life with Vision Rehabilitation
(see page 22).
(sidebar)
"It helps to
be shown
how mobility instruction works. It's important to
get the hands-on experience."
(page 18)
Organizing Your Home for Accessibility, Safety and Comfort
Ensuring safety and comfort at home is another common issue for partners.
In most cases, simple changes often can make a big difference.
Lighting, contrast and
organization are usually at the top of the list.
Control natural and artificial light through adjustable window shades,
flexible-armed
lamps, or positioning of television and computer screens to avoid
glare. Lighting needs
and preferences vary depending on your partner's vision condition, and
a low vision
specialist can provide useful tips about meeting lighting needs.
Experiment to see which
solutions work best.
Contrast and marking systems can make seeing objects easier. Consider
using lightly
colored plates on dark place mats, and brightly colored towels that
contrast with walls.
Mark the most frequently used settings on appliances,
such as dishwashers and microwaves.
Organization becomes very important. Couples usually find that working out
a system together can avoid frustrations about finding things when
they're needed.
Putting things back where they belong benefits everyone. Note the
following tips:
- Push chairs under tables and keep cupboard/closet doors either
completely open or
closed -- not ajar. Keep pathways clear, too.
- Communicate any environmental changes, from rearranging furniture to
opening the
oven door.
- Consider putting a coffee table on a different floor surface like an
area rug
so that you can feel the difference as you near the table.
- Throw rugs should have non-skid rubber backing or double-sided tape.
- Increase visibility of steps, especially the top and bottom steps,
by using tread strips or
safety tape on the edges.
- Install a handrail or banister for stairways.
For more comprehensive strategies and tips, call (800) 829-0500 to
order Take Charge of
Your Life with Vision Rehabilitation.
(page 19)
Dealing with Stress
Coping with vision loss, the changes in responsibilities and shifts in
dependency all
cause additional stress. As one wife shared,
"We're doing for two, not for one, and that's the difference. When we
leave the house, I
have to help him or get his stuff -- I can't just think of myself."
You may find yourself taking on tasks that used to seem gender
specific. In our sighted
partner support groups, men reported cooking and handling the
shopping, while women
were doing more driving and taking on financial activities. Women were
particularly
concerned about, and sensitive to, their partners' sense of manhood.
They don't want
them to feel incapable or dependent, and they're careful not to remind
them about the
changes that have occurred. While it's good to consider your partner's
feelings, this,
too, can escalate stress. For example, one woman now has to unload the
car and bring
packages into the house. Holding back her frustration about taking on
this new task
causes stress to build.
Despite the fact that your partner can contribute to many everyday
chores, you may feel
uncomfortable asking for help with tasks that he/she may not have done
before. Yet this
is a practical way to ease your burdens. After feeling overwhelmed
with too much to do,
one woman admitted, "Last night was the first time I asked him if he
would mind dusting,
and he said 'of course not.' He found the cloth, he dusted and the
furniture was shining."
Stress also may arise as you become more involved with each other's
daily activities.
Spending more time together can exaggerate differences, and the
changes in dependency
can magnify issues. As one partner commented,
"If we had a disagreement before, she was able to go and do what she
wanted to do. Now,
if she wants to do something and I don't want to do it, I have to
because she can't do it
without me."
(sidebar)
"Last night was the first time I asked him if he would mind dusting,
and he said 'of
course not.' He found the cloth, he dusted and the furniture was shining."
(page 20)
Stress can exhibit itself in a number of ways, including: headaches,
exhaustion, trouble
sleeping, eating more or less, feeling angry or short-tempered, a lack
of energy, being
forgetful, feeling sad, depressed or guilty, or just not being able to
enjoy things. While
there are no right or wrong ways to manage stress, some ways are
healthier than others.
People may not always be able to control the cause of stress, but they
can change how
they deal with it.
Give Yourself a Break!
Relieve stress by finding an activity you enjoy. Listen to music, do
yoga, plant flowers,
play with a pet, read books, walk, run, ride a bike, pray, dance, call
a friend, do crossword
puzzles, write or find humor.
During partner discussion group meetings focusing on stress,
participants shared ideas
and discovered new options:
- Use simple deep breathing -- in through the nose and out through the
mouth ("smell a
rose and blow out a candle") -- which can be done alone at any time or
place.
- Think of something that brings you joy -- a moment, special person,
place, time or
treasured object -- to put a smile on your face
and change your frame of mind.
- Combat negative self-talk like, "I should have done ..." or "Why
didn't I think of ..."
with positive thoughts. In one of our support group activities,
participants assigned a
positive personal attribute to each letter of their first names, as a
way to think and feel
good about themselves (Strand, 1995). Members also noted the positive
qualities they
saw in each other. As one man commented, "Connecting myself to my
positive qualities
is not something that I do often. It felt really good. And I'd like to
do it with
my wife."
- Share humorous experiences related to vision loss. One favorite: A
woman with a dog
guide heard someone say, "Look! There's a blind dog!" She responded, "My
dog is
sighted. I'm the one who's visually impaired." Having a good laugh can
change your
mood and relieve stress at the same time.
(page 21)
Final Thoughts ...
While vision loss undoubtedly changes your life, with time, many
couples find ways to
adapt positively to the situation. The feelings and issues described
in this booklet are
meant to serve as a starting point. We hope that the experiences of
other sighted
partners have given you
a better understanding of the emotional changes you may be going
through, as well as
practical information about services and resources that are available
for both you
and your partner.
Although many sighted partners may not identify themselves as
"caregivers," the issues
you face are similar to those who are caring for
partners with other chronic conditions. It can be reassuring to know
that others have
similar feelings and, for one man, being in a group with other sighted
partners had an
added benefit. It made him realize that his problems are not specific
to him, but
"characteristic of caregiver problems. It changes your perspective in
a very helpful way."
Find out about partner support groups in your community. If none
exists, consider starting
one. Programs for Partners of People with Impaired Vision: A
Discussion Guide for
Support Group Leaders, a free publication, is available to assist both
peer and
professional leaders in developing a program. And if your partner has
not received vision
rehabilitation, we strongly encourage you to find out about these
services, which can
make a profound difference in the quality of his/her life -- and in
your life together. Your
partner also may want to consider joining a support group with others
who are coping
with vision loss, to decrease isolation, make friends, share concerns
and find solutions
to everyday issues.
(page 22)
Getting More Information
To find out about vision rehabilitation services, low vision centers,
support groups and
caregiver resources in your state, or to find out about publications
or vision simulator
glasses, call the Lighthouse Information & Resource Service toll free
at (800) 829-0500
or send an E-mail to [email protected]. An information specialist
will talk with you
and provide resources to meet your needs.
You also can visit Lighthouse International's website,
www.lighthouse.org, to view
and/or order recent newsletters, research papers, books, brochures and
fact sheets.
Call for a free copy of Programs for Partners of People with Impaired
Vision: A
Discussion Guide for Support Group Leaders, and select from an array
of helpful fact
sheets, including:
- Helping Family and Friends Understand Vision Loss
- Making Your Home More Comfortable, Convenient and Accessible
- Braving the Low Vision Exam
- Illuminating Solutions
- Mark My Words
- Fix It Yourself
- Looking on the Lighter Side
- Taking Time Out
- Laugh When You Can
- Canes Provide Information for Independence
And for details about the benefits of vision rehabilitation services,
we also offer a book
entitled Take Charge of Your Life with Vision Rehabilitation.
(page 23)
References
Lighthouse International (2001). Take charge of your life with vision
rehabilitation. New
York: Lighthouse International.
The Lighthouse Inc. (1995). The Lighthouse national survey on vision loss:
The
experience, attitudes and knowledge of middle-aged and older
Americans. New York:
The Lighthouse Inc.
Lustbader, W. (1995). The dilemmas of dependency. The Journal of Case
Management,
4(4), 132-135.
Schmall, V.L., Cleland, M. & Sturdevant, M. (2000). The caregiver
helpbook: Powerful
tools for caregiving. Portland, OR: Legacy Health System.
Strand, C. (1995). Fit to be you: Stress fitness program. New York:
Health Insurance Plan
of Greater New York.
(page 24)
Acknowledgments
We are very grateful to the Grotta Foundation for Senior Care
and the Wallerstein Foundation for Geriatric Life Improvement
for their generous support of Program for Partners, a two-year
educational project
designed to develop, implement and evaluate model support group
programs, and to
publish educational materials for sighted partners of adults with vision
loss.
Special thanks go to all the couples in New Jersey and New York who
participated in our
focus groups, and to all the partners who attended support group
programs. This booklet
is based on what they shared --
their feelings, struggles and solutions. We hope that their experiences
will benefit other partners of people who are visually impaired.
(inside back cover)
We appreciate the contributions of all the members of the Program for
Partners project
team:
Marjorie Cantor, MA,
Professor and Brookdale Distinguished Scholar, Graduate School of
Social Service,
Fordham University
Verena R. Cimarolli, PhD,
Lighthouse International
Caryn R. Goodman, PhD,
Lighthouse International
Amy Horowitz, DSW,
Lighthouse International
Linda Schulz, CSW,
Lighthouse International
Cydney Strand, RN,
Lighthouse International
Cynthia Stuen, DSW,
Lighthouse International
Markita Vogt, AA,
Alliance for Disabled in Action, Inc.
Shazia Zaman, MA,
Graduate Student,
Montclair State University
Carol J. Sussman-Skalka, CSW, MBA,
Project Director, Program for Partners
Photos by Brad Hess, Robert A. Lisak and PhotoDisc(R)
(c) 2002 Lighthouse International
(back Cover)
Lighthouse International is a leading resource worldwide on vision
impairment and vision
rehabilitation. Through its pioneering work in vision rehabilitation
services, education,
research, prevention and advocacy, Lighthouse International enables
people of all ages
who are blind or partially sighted to lead independent and productive
lives. Founded in
1905 and headquartered in New York, Lighthouse International is a
not-for-profit
organization, and depends on the support and generosity of
individuals, foundations and
corporations.
Lighthouse International
111 East 59th Street
New York, NY 10022-1202
Tel (212) 821-9200
(800) 829-0500 (toll free)
Fax (212) 821-9707
TTY (212) 821-9713
www.lighthouse.org
J01423/7M/7-02
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consulting & practicing physiotherapy(v.i.)
mobile:-09322896185
email [email protected];[email protected]
skype-id:manish.agarwal56
