Sunday, April 14, 2013

When Your Partner Becomes Visually Impaired

As the wife of someone who became visually impaired late in life, I found myself experiencing a range of emotions including sadness, fear, frustration, even anger; and I felt terribly guilty for having those feelings. I've since discovered that this is "normal" and, over time, these feelings are fading.

One of my goals in helping TCB with this website was to find resources that would not only help those who had visual impairment, but also the spouses. Thus far, I've had a difficult time finding resources aimed specifically to the spouse. Today, however, I discovered this document, entitled, When Your Partner Becomes Visually Impaired. It was published by and appears to have been a brochure at one time; therefore, it does not read straight through like an article. What follows below are some excerpts from the article that I found especially helpful. At the end of the excerpts, I have included a link to the original document. I hope you will find it as helpful as I did.
Cindy Downes

When Your Partner Becomes Visually Impaired …Helpful Insights and Tips for Coping
by Carol J. Sussman-Skalka, CSW, MBA

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.  

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. 

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.
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 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.

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 much-needed time for yourself. As one partner shared, "I have a life, but it's not my own."  

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.  
The rest of the article offers tips for handling these emotions and information about getting involved in a support group, which I highly recommend. Here is a link to the original article: When Your Partner Becomes Legally Impaired.