A Home That Works for Everyone, Tip 4 of 4: “But My Family Won’t Change”

It can be wonderful – while you are coping with sight loss – to have your partner or daughter take care of things. Someone to make your meals, put away your laundry, and tidy your dresser. Someone to make the decisions and give you time to grieve. But it’s not a good thing after the first shock.

 

Being an invalid

People grieve in their own way and at their own pace. It’s a long process. But you don’t have to continue being an invalid. Getting busy might help your personal recovery. Now that you can’t see what’s going on, you are particularly vulnerable to becoming dependent and letting someone else take over. Your kind helper is naturally using sighted methods, but visual ways don’t work for you now. So you can’t find anything; you are constantly reminded of your loss; and you are always having to ask for help – a triple whammy! At the beginning of a sudden loss, families mostly give lots of time to you, but then their other concerns become important again. And you find that you are waiting till someone else has time.

 

Not managing your own life

You find you are not able to plan your day; you have to hang around for Connie or Dave to fit your request in. And you know how that is! Lethargy and depression begin to creep into your soul. Your loss gets even greater. Now you may feel that you’ve lost who you were, that you are dependent and useless.

 

Out of touch with your own stuff

Letting someone else organize your possessions means you get out of touch with your clothes, toiletries, pills, and the refrigerator. Not only is someone else doing it, but they’re doing it sighted, the wrong way for you. You are not choosing where and how to place your stuff so you can find it when you want it.

 

Finding the strength to change the set up

This is not a fight between people who see and people who can’t see. You are helping your family and yourself work out better ways to organize. And you will do this first in your space, and then in the communal spaces.

 

Changing the family habits may mean changing the power balance

Almost all of us love power and control. When you lose sight, you lose power. Your job is to get it back, to gain an equal footing and an independent voice in the family. Everyone is damaged by an unequal set-up. Each adult has to contribute to the family to the best of his or her abilities.

 

Managing your own life again

This is not at all easy. You think you don’t have the strength. You can’t possibly change the way that your friend or aide treats you. But if you can at least sound firm and steady some of the time, it will be a first step toward regaining your independence at home. If you persevere – informing yourself and taking the best advice and training that you can get – the balance of power will shift. Sometimes this means you have to move to a different living situation. But most families will change – slowly, like big ships changing course. It’s worth the wait. Your need to recover your personal power and live an interesting life will benefit everyone in the end.

 

You will need support on this journey. Talk regularly to someone outside your family:

  • an old friend by phone, or in person if you can
  • a priest or minister
  • a counselor or therapist experienced with major disability
  • a member of a support group for people losing vision

 

And do some reading on the subject of grief and of advocating for yourself, such as these two famous books:

 

On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss, by Elisabeth Kubler-Ross and David A. Kessler

  • available in large print through National Library Services for  the Blind and Physically Handicapped
  • available  as an audio book from Learning Ally(800-221-4792)
  •  available as a paperback from Amazon

 

  •  Your Perfect Right: Assertiveness and Equality in Your Life and Relationships (9th edition), by Robert E. Alberti and Michael L. Emmons 
  •  available as an audio book from Learning Ally (800-221-4792)
  •  available as a paperback from Amazon

 

Please post a comment to tell us how you are dealing with this. Let the rest of us learn from your experience.

 

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