When Someone You Know “Goes Blind”

Vision loss is no picnic for the person who is experiencing it.  Rarely do people “go blind” over night.  Most experience a gradual decline and have up and down periods. Some people retain useful  RV (residual vision).  Eye conditions create many types of abilities and restrictions. Macular Degeneration causes loss of central vision needed to see detail.  Glaucoma can cause tunnel vision,and  reduced night vision.  Diabetic Retinopathy causes reduced vision, especially at night, and sensitivity to glare.   It’s a bleak day at the opthamologist’s office, when a declaration of ‘Legal Blindness’ is made.  A journey of change  and adjustment begins.   Feelings of depression and anger are common. New skills must be learned.  Everything seems difficult.  Me?  I thought my head would explode trying to remember everything.  I learned that multi tasking is best left to sighted people.  Patience with yourself is critical. It takes more time to do everything, it seems, when you are doing it with less sight. It frustrated me to ‘think’ about everything I was doing. I resented spending 20 minutes on a task that I once performed in 5 minutes.  Emotional support is very important for people experience vision loss.  Peer support groups can make all the difference.  Being able to share the daily frustrations with others ‘in the same boat’,  is very helpful.  I joined such a group many years ago. I continue to ‘chair’ this motley crew today.  People come together every second friday of the month. For some, it is one of the few social outings they will have that month.  Everyone relaxes and has a chance to share whatever is on their minds.  It’s a lot easier to laugh about an experience related to blindness outside of the ‘sighted’ circle of support.  For example, people roared when I admitted that I had accidentally washed my hair with Vim (tub cleaner) instead of shampoo that morning.  OK, it was a few years ago and I tend not to do that kind of thing anymore, but it is the type of thing that is best shared with people who ‘understand’.  The most commonly voiced sadness and frustration with new group members, comes as a result of loss of a drivers license or car.  The family members and friends of the person who has lost most of their vision,  must also go through a period of adjustment.  I often hear people who are new to vision loss, particularly older individuals,  expressing that they “feel like a burden” to their family members.  Sometimes, an entire circle of friends seem to drift away out of the life of a man or woman who is experiencing significant vision loss.  There are professionals etc. who can elaborate on the whole ‘psychosocial dynamics of blindness’, but here’s my wise advice:  Do not smother your loved one who has lost their vision.  It is far more helpful to facilitate good skills and O & M (orientation and mobility) training with a service providing agency (like CNIB in Canada) than to adopt a “let me do that for you” attitude.  However, realize that this is a difficult time. Some people learn faster than others.  Some skills are just too difficult for some to master. There is the element of safety to consider.  It’s nice to believe that your brother or mother who has lost their vision, can ‘do it just like anyone’, but things like using a stove, chopping, navigating through a noisy, busy mall with a cane, are not safe to attempt, without good skills.  Every human being has a comfort zone and it is not fair to force someone into a situation where they are thrown out of it. I think there are unrealistic expectations for many people who lose their vision, made unknowingly by friends and family members.  I learned Braille. But only 15 to 20% of all blind adults ever learn it.  I have a Guide dog (Opal) who has changed my life.  Back in the ‘planning stage’ when I was applying to go to Guide dog school,  one of my peer group members reported that a family member had commented to them, “you should get one too, mom”.  The mom in question, did not know how to walk down the road with a white cane, did not go to any location without assistance, did not particularly like dogs, did not like going out on rainy or snowy days… My point? it made no sense.  It can be helpful to someone who is experiencing vision loss, for family members to help reorganize the home environment.  A big factor in feeling comfortable is the accessibilility of the home.  Whether the person with vision loss is living alone, or with others, reorganizing the environment is necessary. Simple things, like specific placement of household items (so they can be found), using colour contrast schemes (paint or non-skid tape on stair risers, coloured handrails, floor material),  installing good lighting (mostly incandescent) and  ‘attach’ lights on underside of cabinets. Get rid of dangerous scatter rugs and keeping cupboard and closet doors closed, and keep shoes etc. out of the footpath.  It’s easier and more pleasant to get on with life, when your home is safe and comfortable.  I have friends in my peer group who have told me that their friends or family members are often more ‘distressed’ than they are about their vision loss.  This is an unfortunate and common occurrence. I’m not sure if it involves fear (of their own potential vision loss), misconceptions of blindness, social stigma of blindness, or feelings of inadequacy (“I don’t know how to help”).  All of this stems from lack of general public awareness, and total absence of knowledge of the facts.  If you have a family member or friend who is “going blind”, express your feelings (of inadequacy  or whatever),  get your supports in place (books, internet, organizations, service providers), but  for goodness sake, GET OVER YOURSELF!  The world has not ended for you, or your loved one. 

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8 responses to “When Someone You Know “Goes Blind”

  1. There are local self-help group centers that can help you find (or start) a local self-help support group for vision loss. See listing at:
    http://www.mentalhelp.net/selfhelp/selfhelp.php?id=859

    “Although the world is full of suffering…
    it is also full of overcoming it.” – Helen Keller

  2. Thank you. I don’t know much about your organization, therefore, I can not endorse it. Helen Keller also said: “One can never consent to creep when one feels an impulse to soar”.

  3. no name thank you

    A big problem is when the person refuses to get any help, whatsoever, from anyone other than one or two immediate family, who in turn know very little about this. No self-help groups, no professional advice, nothing – getting them to even consider a talking watch took three years. And for the situation I know of, that’s gone on for more than 2 decades. The two people who were allowed ‘in’ to assist have now been reduced to one, and that person is beside themselves knowing what to do next when they aren’t ‘allowed’ to get any advice themselves.

  4. Thank you. This is really helpful information.

  5. Florence Greg Dias

    Will any kind soul there please help me live the remainder of my life . I am gone totally blind

  6. what kind of software – which specifically aids people who are blind – do you use to work with the net (like posting this article etc)?

  7. My daughter has lost most of her sight as of 1 wk ago. They think it was a stroke from high blood pressure. She is lost, heart broken, scared. Today she broke down & cried. I think she has been keeping up a front for her 10 yr old son. I don’t know what to say or do. I’m taking her to the drs but not until next week. How do I comfort her? What do I say? Its going to OK. You’ll make it through. Things will be fine. No, there not. It’s not fine. Its not OK. And I have no clue what’s going to happen.

  8. Dear Mary,
    A friend of mine noticed this comment on an old blog post I wrote some years ago. I am so glad she forwarded your message.
    Such a sudden experience of vision loss! seems absolutely reasonable for your daughter to be feeling lost, heart broken and scared. If it were otherwise, you would need to be more worried.
    Any sudden personal loss is traumatic and confusing. To lose an important sensory mode, like vision, especially so suddenly and unexpectedly is shocking to the emotions. That she broke down and cried today, may be hard for you to witness, but is a good, cathartic way for your daughter to express her pain. Like a safety valve, the human mind and body process emotions in stages that allow us to cope- shock has some physical attributes (can include: numbness, feeling heavy, tired, slow, shaking, dry mouth, chills etc.). As initial shock passes, and the mind begins to analyse the situation, emotions can be very erratic, and include for some people, tears, expressions of anger, seeking to be isolated, fatigue, anxiety, waves of sadness, changes in appetite and sleep patterns (insomnia or excessive sleep; no food, or excess food), some people will seek to numb selves with alcohol, medication, drugs etc.
    As with any great loss (and vision loss is sometimes experienced as profoundly as the death of a partner or parent or child) the grieving process takes time and is experienced uniquely according to the individual, not their family. You too, though have adapting to do. Try to see your daughter as changed, but still the same beautiful person.
    However, unlike a death which is final, vision loss is not a life-ending condition; it may take many months for your daughter to process her emotions about this loss, but she clearly has some people in her life who care about her, and will be supportive.
    For now, be as empathetic as possible without pitying. Safety proof your home and teach the son and visitors to respect the house rules (scatter rugs can be a hazard; place oft-used items like keys in same, handy location; create clear lines of movement in the house; close cupboard and closet doors when not in use; do not leave shoes and other junk in footpath; place glassware and sharp knives away (not in sink where they can cause accidental cuts); learn to place pot handles inward on stove (a good practice for all); etc… (other tips found on my old blogs and other places on the net).
    This IS sad, Mary, but it is not the end. People can and do adapt over time, and many can resume meaningful lives (parenting, marriage, employment, homemaking, education, shopping, banking, socializing etc). I did not have so sudden an experience as your daughter, but my loss was hard. I had feelings of sadness, anger, frustration, and fear. These abated over time. In some regards, the challenge presented a kick start to a stalled life; I am now a trained chaplain and ordained Unitarian Universalist minister. I travel, have a great guide dog (that’s a whole other discussion that is premature for your daughter). Most importantly, my life is happy and full.
    I urge you for the moment to accept your daughter’s sadness and fear. Listen to what she expresses, hand her tissues…be natural. Tell her you don’t know what to say (the truth), that you are sad and confused too, but that you are both strong and will manage over time. If it is in your nature to be funny, use humour as you normally would when appropriate.
    Your daughter must already be figuring out how to do things without useful eyesight– how to place a cup carefully on the table, how to locate furniture in the room, how to move food around on her plate. Every small victory in adaptation will be empowering; every bump in her path may induce fear and worry. It is a process that can take time, and her son can be included in it. Speak and think of her in “people first language” – “my daughter who is blind”, instead of “my blind daughter”. Buy her a talking watch now if you don’t already have one (available online through http://www.maxiaids.com or http://www.independentliving.com )
    When ready, (sooner rather than later) you can invite a conversation with rehabilitation support people at your local service agency for people who are blind. She would likely initially benefit most from orientation and mobility training with a qualified instructor (how to use a white cane to navigate in her neighborhood and beyond), and adaptive life skills (cooking, cleaning, labeling, reading — Braille or audio technology, etc.) It’s her loss, and her process. She gets to call the shots, no matter how you see it Mom.
    I don’t know if you are people of faith or how you express your spirituality; draw on the support of friends for yourself too. If your grandson is a reader, encourage him to read to his mother. Ask your daughter to participate in simple chores with you that she CAN manage if she is physically able after the cardiovascular incident–(fold laundry, clean a sink…) so that she can begin to feel she is still part of family life again. Figure out a coding system for her clothing. Can she read large print? no? Cardboard shapes can be assigned to represent colors, and slipped over hangers.
    I am sorry you and your daughter are in this situation, that life seems so jumbled and unfair…Peace be with you. Do write to me if you wish. hmcfadyen101@gmail.com
    Sincerely,
    Rev. Helen McFadyen

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