You are the closest relation or partner of someone who is losing vision, or has a diagnosis of a blinding disease. The shock and grief for you can be almost as great as for your loved one. You aren’t getting any of the special attention or professional care either. You’re just holding her (or his) coat and looking at a long future of burden and responsibility.
At this first stage of diagnosis and maybe surgeries, your life can be thrown into shambles by constant driving to appointments and filling out the insurance paperwork, which she (or he) can’t now do herself. All the meal preparation, the bill-paying and the laundry now fall on you. Often you do everything for your partner, sibling or parent who seems to have such a tragic future.
You pour out time and effort without counting the cost. This time can be a beautiful example of family generosity and love, and you can find yourself elevated to greater sensitivity and intuitive understanding than before. But there is a high cost in stress and private grief which you have to keep hidden from your loved one. You can’t share your dread of how life will be with someone who has a major disability.
On the other hand, if the relationship is new, or had problems before, you may know that you aren’t the partner for someone who can’t see much. If so, it may be better to say so sooner rather than later.
After this first emergency stage, you are looking at something different. If it’s your parent who is losing vision, don’t rush to move him or her. We all do better in familiar surroundings and this is twice as true with vision loss. If you can get your parent some more support in a way that leaves him or her in control, that is usually the better solution. Many seniors with vision loss live safely at home. Don’t let your fears decide his or her future!
This is also true if it is your other half who is losing her eyesight. Don’t let your fears, or your desire to have everything stay the same control the situation. Remind your partner and yourself that she is still the same person. Be as flexible and encouraging as you possibly can. If you encourage her (or him) to get a ton of training – using hearing, touch and remaining sight – in time your household will find a new balance of responsibilities. The tasks will be distributed differently, but life can go on.
Now the situation isn’t primarily medical. Instead there is someone you love who is struggling to begin a giant shift in how she uses her senses. She will depend a lot on you at first before finding new ways of doing things.
What may be more difficult for you is becoming accustomed to not having a companion for many ordinary pleasures. TV, movies, photos, the comics, a cute kid on a tricycle, and so on. It’s really rough! You and your partner, best friend, or sibling now may have not only different ways of experiencing life but also mostly different pleasures.
This is a very big issue indeed and includes everything from how the kitchen is organized to choosing a vacation.
Just about everything gets thrown into the blender. It’s so uncomfortable, so difficult! But if you can stick it out together, a deeper trust and understanding may develop. Your ability to communicate and understand other people will also be enhanced by your acquaintance with grief. You will grow more compassionate and more loving, and in doing so may find a richer experience yourself.