THOUGHT PROVOKER 68

To Our Mother

      “She’s nearly blind and it’s time we acted and put her in a place where her safety and needs will be taken care of.” said the older son to the group of his siblings and other family members who were gathered in a family counsel. "We've all worked together to help her but this is beyond what we can do, isn't it?"

     The wife of the older son spoke next. “Over the past couple of months Mother has really gone downhill in what she can see and do. It’s really scary. Why, when I came over yesterday to bring her some frozen meals I made for her, the kitchen was really a mess. There were dirty dishes in the sink that I think she had tried to wash, but didn’t really get them clean. There were puddles of coffee on the counters, with electric cords trailing through them. There were scraps of food and trash on the floor. I mean, really, you could tell she had tried to sweep it up....but really....”

     A granddaughter broke in next. “Oh, guys, when I came over last week to take Grams to her hair appointment, I found her front door open! And she didn’t seem to be aware of it!”

     “Well what I noticed quite a ways back,” spoke up the youngest son, “was how timid she was getting when moving about outside her own place. I could tell she wasn’t seeing all that was coming up ahead of her. And if the lighting wasn’t just perfect, she’d want to hold my hand, which was alright, but man!
We’d not want her, at her age to fall and break a hip.”

     Another granddaughter spoke up. “Of course, from quite a ways back, remember when we all noticed Gram’s problem in seeing small things? Like she couldn’t do our mending she had loved doing for years because she couldn’t any longer thread a needle. and, then it was she couldn’t read her TV guide, then some
of her mail or dial the phone....”

     The youngest daughter spoke next. “But what really got her was her friends! She wasn’t recognizing some of them when she was out. Then some of them stopped calling her to go places and it really broke her heart when her bridge club stopped inviting her.”

     “I know.” said the oldest daughter, “She said she didn’t care, that she needed to slow down. This is a woman who has always been active and I think is still sharp! But I think all this is impacting her mental health.”

     “Okay then." The older son took charge again, “Are we in agreement that something major has to happen?"

RESPONSES
e-mail responses to newmanrl@cox.net

**1. I don't think this family is doing the right thing. I mean someone who is older can learn the skills that a blind person needs to continue living on their own. If it weren't possible the Rehab Teachers might not have jobs part of the year. When I went to the Rehab center for the state of Kansas one time the week after all of us left they were going to have a week where they were working with nothing but seniors.

Kelly Stanfield Kansas City, Missouri USA

**2. My first reaction is where is grandma? This is her life after all and she shouldn't be shut out of the discussion. If she has the will and energy to learn compensatory skills, then she should have that choice. Putting her somewhere safe sounds as if they have already given up on her and are limiting her choices for her. Instead of finding out about options they are treating her as if her mental capacity has gone down hill. Adjustment to vision loss has
more to do with attitude and willingness to adapt than it does with the degree of remaining vision or the age of the person involved. Only grandma knows what her character and courage can accomplish if she gets the right training.

DeAnna (Quietwater) Noriega
quietwater@codenet.net

**3. Well clearly, this woman would need a more thorough evaluation before any decisions were made. The first question that comes to my mind as a former Adult Protective Services social worker, I would think that an evaluation of both her physical and mental faculties would be in order. My own initial reaction is that a woman in this situation may also be suffering from a certain degree of cognitive dysfunction. And diminishing vision certainly doesn't help.

Dave ElRoy ACB-L

**4. well, it is one thing to worry about the mother, and what too do. but it is another thing to act like she is loosing her mind. The family should try other options first like, area agency on aging. and other programs designed to keep people out of a nursing home. I am 42 and blind myself and the doctors put my wife and I, both in a nursing home. My wife had a mental break down from loosing a toe. and the nursing home did nothing to help her mentally. I knew that I had to leave there too get her some help.

William Spencer Sayre, Pennsylvania USA

**5. The first problem with this family meeting is that Mother is not there. The family is very concerned about her, but they've already decided that she has not part in their decision. They say she is a very independent woman, but gave no thought to how *any* decision they make will effect her life. They also indicated that her mind is still strong, but they're treating her as a child, not giving her the opportunity to search out her options. They're all to willing to place her somewhere where they won't have to be concerned about her. But, at the same time they're not worrying about her, they're
probably going to become a little like her bridge club and just stop
visiting and inviting her to do things with them.

Obviously, none of them have bothered to see what services are available in
their area to help Mother care for her home on her own. Suddenly, she's
become blind and despite what they say about her mental and physical health,
they're ready to disrupt her *entire* lifestyle by moving her from her
familiar surroundings. Then, she'll not only have to deal with her loss of
sight, which could be a very big deal for an older person, but also with the
trauma of leaving her home and familiar surroundings and suddenly become
dependent on strangers for everything.

I don't think they're holding this meeting for Mother at all, but for their
own convenience.

Cindy Handel
Willow Street, PA-+
chandel@voicenet.COMT

**6. I think that the most important family member was not present in this counsel. If It was my mother, I would want her present to hear all the suggestions and comments of her children and grand children, and then I would like to hear her thoughts on the subject. The children stated that she was still "sharp", and certainly she deserves to have some input into her own disposition. Of course they had helped in some ways that all kids who love their parents feel the need to help sometimes. I didn't hear any mention from those children of helping her to adjust to her current situation. Instead of wanting to put her away in some home or nursing facility, I would like to have heard some mention of how they might could help her cope with her current circumstances. Most of the problems they said she had are common to anyone growing older. But their main concern was her inability to see as well as she did when she was younger. The problems they outlined are all fairly common. And there is people willing to help older people adapt. I know many older blind people who with a little help, learn to manage quite well on their own. But these children want to dispose of what they feel is a burden on their conscience. Don't help, just dispose of the problem. And their chief concern is their fear of blindness. And maybe they don't know how to cope with that, but there is lots of expert help available to them. And help that can be rendered in her own home. I read all the things they said she was "Guilty" of, but I didn't hear of any offer of help, or getting help. And I wonder why not. would have liked for them to consider ways of helping, or getting the help that she needs. But that didn't seem to even enter their minds. One of the ten commandments is to Honor your Father and Mother. I didn't find any honor in the things that they were contemplating.

Dave Johnson McKinney, Texas USA
avalon@shellworld.net

**7. I DON'T THINK I AM TO THE AGE WHERE MY CHILDREN WOULD WANT TO PUT ME AWAY?! THEY SURE HAVE SOME STORIES TO TELL AS ADULTS ABOUT GROWING UP WITH A VISUALLLY IMPAIRED MOTHER. EVERY TIME I HAVE THEM ALL TOGETHER THEY HAVE MORE "REMEMBER WHENS". ALWAYS IN GOOD HUMOR. THE LOVE NEVER STOPS FLOWING. I PRAY THAT IT WILL STAY THAT WAY. THANK YOU FOR THE SUNDAY THOUGHTS. THEY ALWAYS START MY WEEK ON A POSITIVE NOTE.

Lleana Messer Lincoln, Nebraska USA

**8. In the first place, the family should not be talking about the mother but with the mother herself. Instead of holding a family council behind her back, they should discuss concerns directly with her. If the mother is in good health, moving to a retirement home or a nursing home may not be necessary. With outside help, it might be possible for her to continue to live at home.

In Wyoming, there is a state agency that provides assistance to senior citizens who have lost their vision. An independent living specialist comes into the home and labels appliances so they can be used safely and efficiently and provides some instruction in daily living skills. This agency provides small
adaptive devices such as large print playing cards and large knitting needles. If the mother could benefit from a closed-circuit television reading system, the agency can help her apply for a grant that would allow her to receive one. The agency can also refer her to an orientation and mobility instructor in the area and help paying for such instruction is also available. The mother should also be encouraged to join a support group where she could meet others who are visually impaired. She could also attend a program like the Wyoming Lions Summer School for the Visually Impaired. This is a camp on Casper Mountain where blind and visually impaired children and adults can learn such skills as computers, crafts, daily living skills, Braille, and orientation and mobility, just to name a few.
Nursing and retirement homes can be expensive. Before they look into that, this family should look into the options I've just discussed. But the important thing is that they need to work with her, not behind her back. The mother is still capable of making her own decisions so she and her family should work together to come up with solutions to the problems she faces as a result of her visual impairment.

Abbie Johnson Sheridan, Wyoming USA

FROM ME: How about meeting other people the mothers own age that are also going through the same change in life? How about if that group included some people who have been very successful in their adjustment and are still living alone? How about her family members also attending some of these meetings?

**9. This one stirs up a lot of thoughts. Sure, we want to keep our aging parents safe but is it better to keep them safe at the sake of taking away all their independence? Here are 2 cases in mind.

Case number 1 was an elderly couple. They lived next door to the old lady's sister and other dear friends of many years. Their daughter and her husband just came over one day from the distant town they lived in, packed up their parents with only their clothes, and not even all of them, and hauled them 300 miles away from all their friends. Here they were deposited in another house with all new furniture, because their old but lovely furniture might
not be up to the rich look of the new place. They were not allowed to have one piece of their furniture and it broke their hearts. Sure, they had a lovely house to live in but they were alone with strangers for friends and strangers for house belongings. Only their daughter and family were there now. One parent was dead in less then one year, dying lonely! Could something else have been done for them?

Case number 2. This 91 year old lady, widowed and nearly blind is living alone. After her husband died she rapidly weakened and had to spend some days in the hospital and then the nursing home for more recovery. Now for 6 months she lives alone in her house. She has life line connection and several care takers. The care takers spend about 10 hours a day 5 days a week and over the week end one comes in 3 times a day to see to her needs and fix meals and the like. She remains in her own house among neighbors she has known for many years and where her little dog can stay with her. Though lonely, she is happy at home. Yes, she is taking a chance but usually one in her situation will live a more productive life then were she put away somewhere. It is not hard to have someone, well trusted, come in and help with meals and clean up.

I agree that the younger family members should be concerned for their aging parent but first, they need to check with her/him for her/his wants. They should talk to the aging parent, in love and concern and let the parent help in the decision making. Some older people would be most happy to go into some type of a retirement home where they have meals served and have no great chores to do. But others will remain active and have a better feeling of self worth if allowed to remain in their home, with help coming in to assist him/her.
These family members in our little story, were taking a first step, and this is good. Now they should meet again, all together and include their mother/grandmother in the next steps in finding a solution for her later years.

Ernie Jones Wala Wala, Washington USA
ejonessr@gohighspeed.com

**10. Being a rehab specialist for the blind in Wausau, WI, the case of this elderly lady is a typical example of what I see daily. In some cases family members do become over protective and bossy towards their elderly family member losing vision and the first solution it comes to their mind is to place him/her into a nursing home. This is because they do not know any better. They have no knowledge of services available to teach senior citizens losing their vision
blindness skills to cope with the new situation.

This is where the role of organizations of/for the blind come in to inform the public available services for senior citizens. The mass media should be more effectively utilized for an info campaign. TV broadcasts, local papers, and other news publications should be flooded with public service announcements regarding services for senior citizens losing vision.

Especially aging commissions and senior centers should be made aware of services to keep senior citizens losing vision in their homes and communities.

I have witnessed many times that even teaching a few simple blindness skills or marking of appliances makes a world of difference for senior citizens losing vision. When they find out that they can do things with other methods rather than sight, they utter a cry of surprise and joy. It is very satisfying to hear that cry after I teach a simple skill of blindness.

Nevzat Adil Wausau, Wisconsin

**11. well I don't think it is because there are so many ways of helping her besides putting her in a nursing home. they just need to find out what they are and help her.

kristen

**12. This is a subject that is dear to my heart, because I am going through this kind of situation right now. My mother is losing vision and is 81. She is still driving her car, but she is realizing how dangerous it really is becoming. She just qualified for home help through a State sponsored program, but is fighting many of the benefits, regardless. My brothers are all squabbling and worried about who is doing the most for her. I swear we need four abacuses to keep
track. I live many states away and am not able to check on her, except by phone. On top of all that, her memory has been affected. First of all, there are some agencies that will help with the cleaning and personal errands she must accomplish. Many rehab agencies furnish a senior citizen arm of in-home training
for the vision issues. But the family must first separate the needs of their Mother/Grandmother into manageable divisions. Then, start calling around to see what help is available. A nursing home is a last resort for the elderly. Or, in a pinch, a half-way home is also an alternative. they need to open communication with agencies and broaden their knowledge.

Pamela McVeigh Louisiana USA
Pamelot@cox-internet.com

**13. Sounds like they are doing the thing that happens all too much--discussing her without her input, when it is her life.

Lauren Merryfield Washington USA
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**14. Let me begin by pointing out the term loving when Robert refers to the family. Let's remember that not all families know about commissions for the blind
and rehabilitation centers for the blind. Often family members sincerely believe that alternative living, I.e. nursing homes, are their only options. It seems to me that the issue is one of education and information. It is incumbent upon organizations who provide training services to blind and visually impaired people to make their services known to the communities that they serve. We all know that with proper training and information resources, most
individuals can live independent and productive lives, however, it requires extensive training. The down side to this scenario is the decrease in funding for Homemaker outcomes. In the past, an elderly person who lived alone could receive training
in activities of daily living to include housework, cooking, shopping, accessing transportation, etc. It is much more difficult these days to justify spending those training dollars when the individual has not expressed a desire to return to work. Is this fair? Are individuals less worthy of training dollars based on their desire to become competitively employed? That seems to be what the Feds are saying. Don't bash the family for turning to the only option they see. Instead, let's get the word out to every family that there are agencies and organizations in their communities whose sole purpose is to assist with these types of training needs. Also, let's get the word out to the Rehabilitation Services Administration that people living independently in their homes does not always include an employment outcome. Many have already worked for 50 years and are ready to retire. they have paid into the system and should have access to services based on their individual needs.

David Ondich Texas USA

**15. No, the family is not doing the right thing. How about rehabilitation teaching skills? The mother is sharp, the children say. So what she needs are rehabilitation teaching skills, not institutionalization. She is active, so with home management skills, and mobility skills, she can go out to socialize with her friends again. This family is guilty of having lowered expectations and projection. They lack the knowledge of alternative techniques for coping with blindness, that's all. Referrals to rehabilitation teaching agencies are needed.

**16. As a social worker, this one is right up my alley! I see many families using this gut reaction to put someone in a place before looking into all the alternatives. First, I don't believe a nursing home would be necessarily appropriate for this woman. Of course, I make the assessment on the information given. She may be willing to consider a supported living facility. We learned, however, that supported living arrangements aren't available all over. They are hard to find in rural areas. Since we don't know if they are in a rural area, it is hard to know if this is really a viable option.
Another consideration would be using home health staff. These people would be able to assist with cleaning, reading mail etc. In Michigan, Family Independence Agency provides the funding to pay these people, but the person using the staff actually does the hiring.
I would hope that before this family tears this woman from her home, they are open to looking at the complete picture and examine all the options. From the story, it doesn't appear that anyone contacted any type of professional for the blind or mental health worker.

Marcia Beare Martin, Michigan USA

**17. I am a graduate student in family counseling. One of our first lessons and one of the things we tell clients is, talk to people not about them. In other words, why don't these people sit down with their mother/grandmother and discuss their concerns with her. They would need to do things such as speak in I statements rather than you statements, point out their observations in a way that does not lead her to feel blamed or silly, and make it clear that they know something is going on and want to help her find some resources. They may want to sit down with her already knowledgeable about resources, such as local
rehabilitation centers or commission for the blind programs or VR teachers, etc. who can help her. They can tell her that it would be possible to play bridge again if she learned Braille and could read the Braille playing cards. They could explain to her that blind people can learn to clean up and do dishes, etc., and that she can learn to move about more independently. Then, it will be up to her to decide how independent she wants to be. She may decide she
wants to start reading books on cassette, for example, and she can read books about other blind people and how they do things perhaps in order to feel less alone and get some ideas.
At her age, and especially if she has other physical or mental difficulties, she may not feel as confident about things, even if she does learn new skills. She may decide that she is not yet ready to face so much newness and deal with fading vision and learning a host of unfamiliar skills. The emotional aspects
of what she is going through must be recognized. The kids can say, "I know this must be hard for you Mom. You've always been so active and independent and it must be scary to be dealing with your vision getting worse." She sounds like she may be rather proud and not want to ask for help so it may be tough for her to admit how she feels. Everyone seems at a loss for how to handle this situation. It might be the best thing to have her move into an assisted
living community, as in a place with apartments for senior citizens where they are still active and involved in life, but may need a little help with meals or cleaning, etc. She may want to move in with one of her kids, if that is an option. Or, she may want to learn the skills to stay where she is. She may really benefit from a support group of other older adults who have lost or are losing vision, and may even be able to find a mentor who is similar in age and situation to help her and support her. Obviously, there are a lot of options, but the most important thing is that the family communicate about this, not only with each other but with their mother directly. She deserves to be treated with dignity and deserves to know they love her enough to be so concerned. The family can let her know they are worried
and want what is best for her. The bottom line is that something has to be different, but how that is accomplished could take many forms. Hopefully, she will not deny her problem but will become actively involved in looking at alternatives with the support of her family. I hope they will take it upon themselves to be educated about blindness and the capabilities of blind people so that they can encourage her rather than saying, "You can't do that," etc. She doesn't need their protection or pity, obviously. She needs them to believe in her, remind her of her strengths and what she is capable of, and she needs to know how proud they are of her when she takes steps to deal with her sight loss.
Of course, we would want to see her learn to use a cane, cook, use Braille, live independently, etc. I think it is important to realize however, that her decisions should be respected. If she decides to go into a retirement center or live with one of the kids, that is her way of dealing with what is happening. As long as she is safe, the rest of the decisions are hers. She should be given time to think about the options, and should be helped to know what her
options are so that she can make an informed choice.
Sorry this was so lengthy. I keep thinking of new things.

Carmella Broome South Carolina USA

**18. This is a rather interesting thought provoker. Not only does the family seem to be doing all that they can do to help her, but it sounds like, as pointed out later in the narrative, the mother's mental health is impacting her adjustment to blindness. Assuming that the family doesn't know what resources for blind people are out there, perhaps they could be networked with the various resources and programs for their mother/grandmother to join and receive training from. On the other hand, it's possible that everyone already knows the resources and programs for blind people out there. Thus, the mother/grandmother would have to have her own motivation and initiative to link up with such resources and programs. As they say, "you can lead a horse to water, but you can’t make him drink". The mother/grandmother may have already been told about the resources and may have received some training only for her to not be willing to accept the help or because she's having difficulty accepting her own blindness, and thus, feeling like her world has come to an end as a result even though we all know that this isn't true.

Linda USA

**19. I think this family is concerned and caring but to me they are a very uneducated family about blindness they need to be more aware of a blind individual needs and don't rob their poor mother of her independence just because she is getting older and becoming blind. This is very sad to say but they are doing what almost every other (Sighted) family members have done to members of the family who have become blind in their older age. I realize that the mother
has to be willing to accept the help that she could get from training to deal with her blindness but I do think they should offer her this option before they just decide for her completely on their own after all the note stated she was still very much aware of what was going on around her. That's all I
have to say for now I have not had to deal with this Myself I have a blind child but I get very upset when people don't deal with their blindness as we say it is not a handicap just a nuisance that we all can learn to make adaptations for:) Thank you for listening

Karen USA

**20. Sounds like they've already written Grandma off as a useless, fruit loop because she's losing her eyesight. Obviously, she isn't. She's trying to do the things she used to do but is having trouble doing them because of her new difficulty seeing. Sounds like she's embarrassed too and worried about what her family will think. She doesn't need a nursing home. She needs rehabilitation and support.

Patricia Hubschman New York USA

**21. This family is doing the right thing by talking about this problem. Now comes the hard part, and that is getting the right information to make a educated decision that will really help Grandma get the help she needs. They need to know there is more than simply putting Grandma in a "home," or some other
kind of care facility. They need to know all their options before they make a decision like this. .
How that information is obtained is the big question. We all know there is a lot of help and a lot of different options out there, but how do we get that information to the people that need it?
I don't know the answer, I just know it's a big part of the problem. I guess that is what our consumer groups, VR Centers, Independent Living Centers and the like are for?

John Fleming Oregon USA

**22. First of all, what this family needs is to try and change the stereotypes seen in the story regarding visual impairment/blindness:
1: Put her in a nursing home-type setting where if this is done the stereotypes will be more reinforced rather than trying to eradicate them, which is one of our goals as blind people, right?
2: The kitchen is a mess, thus she can't fend for herself; this is because of the lack of alternative techniques, not because of her blindness.
3: Her friends no longer call her; sadly as it seems, but these so-called friends weren't really her friends because if they would have been authentic ones, they would have kept on inviting her with them.
Now for what action needs to be taken: The best thing to do is firstly to get the family involved in knowing other blind folks, even elderly ones who live by themselves. Once the family is convinced that it's ok to live with blindness, if this ever happens, then the family should get the mother involved in learning alternative techniques, as well as getting to meet other blind folks so that she'll see that she isn't alone in her blindness, and that she still has a full life ahead of her.

Gerardo

**23. This story describes some of the people I come in contact with in my work as a rehabilitation teacher. The family is not doing the right thing but I feel they do not know what else to do. The family members need to contact blind rehab agencies so mother will be allowed to live independently. The problem is that no matter how hard we try to publicize our services, there are still some who do not know about independent living training for the blind. Eye doctors are told but they do not refer to agencies unless we can pay them for surgery or other services.

Angela Farmer Dothan, Alabama USA

**24. It sounds like the mother is having some definite problems and needs help, but maybe they could try a home teacher first to see if this approach would work. If not, then maybe she could go to a safer place to live. The story doesn't say how the mother feels about going to another place to live. This is a very ticklish problem to tackle for any family. Lots of talking should be done all along the way. In my opinion, the mother should be in on these discussions as much as possible so she doesn't feel railroaded into
something she doesn't want to do. It sounds like some action on this has to be done. It's good, though that the family is getting together to talk about the situation. Maybe a home would be good for her so she wouldn't be isolated from people, but I still think that she would need some kind of home teacher or social worker to come in and see how or if the mother can be helped first. This is a very interesting thought provoker and one we all need to think about because our parents are living a lot longer and so are we. This sort of thing comes up constantly now and everybody is different. I'm not in any way a professional in this field. I'm a totally blind person who is interested in these things because I've had many friends who became
very old while I knew them. I worked with people with low vision as a
volunteer and have heard many stories from families. I’d be very interested
in what other listers think about this.

Leslie Miller USA

**25. I think one of the hardest things for a family to deal with is an aging parent. There are so many changes when you grow older. You loose your sight, your hearing and sometimes loose your faculties to dementia. Before this family take such a drastic step of "putting away" their mother what about learning skills that would help her deal with her blindness? None of the gathered relatives mentioned that possibility. Is it that they aren't aware of such assistance available through the commission for the blind or some other entity like that? Or could it be that it would be easier not to deal with their mother's deteriorating sight at all?
Maybe they don't know where to find information about getting help for her to learn new skills to cope with her blindness.

Janet George USA

**26. Some loving family! Really, they were exercising love, but with a wrong motive: "to put her in a place where her safety and needs will be taken care of." The family felt it had the best of intentions for the elderly lady: to be sure her needs, her safety, would be taken care of - but by others, not by them, since they didn't want to, and certainly not by herself, for after all, they felt, she was not capable of caring for her own needs and wants. Throughout the family's discussion, good, solid rehabilitation never entered the picture. Not once! They only talked about what she couldn't do or couldn't do well, not once how the situations could be corrected, in order that she could maintain her independence. They only went halfway: "to put her in a place where her needs and safety could be taken care of." The family knew absolutely nothing of rehabilitation of the blind. Many of the blind themselves are unfamiliar with rehabilitation of the blind. Among them are those congenitally and adventitiously blind who live with their families all their lives, until forced out by parents' deaths or incapacity; many of us on this list are acquainted with such people; personally, I honestly feel sorry for each such blind person of my acquaintance; they have so much to lose, by being unwilling to listen.
Then there are those legally-blind people unwilling to acknowledge their legal blindness: They cling to what precarious small amount of sight they have, to their inconvenience and danger, believing they are doing themselves a favor; they are adamant opponents of sleep shades; they prefer to attempt to read
menus in too-small print, when it is quicker for someone to read them to them. There is everything right about using low-vision devices; but with so little vision to use, what is the sense of using only low-vision devices? I know two of these people in Nebraska; Robert, I think you know them both.
And then, there are the blind who engage in pity parties. The American Council of the Blind is to be highly commended, that not all of its members seemingly pride themselves on referring to blindness as a disability, on attempting to create a cross-disability organization, rather than on focusing specifically on blindness issues. Really, one cannot say anything better at all about some in the National Federation of the Blind, either; some in the NFB also exhibit
a poor-me attitude. I ask myself why. Some in both the ACB and in the NFB will be enraged at my comments. I just don't care anymore! No one is going to stop me from thinking and speaking for myself! After all, as ambiguously as some of these people define disability, it should be expected, according to them, that every single person who has ever lived on the planet has been disabled. This is liberal, negative pessimism!

Jeff Frye Overland Park, Kansas USA
jfrye2@kc.rr.com

**27. So Grandma can't see any more and is making some mistakes. And the family, who didn't encourage her to call Blind Services for help, thought they could protect Grandma from harm by doing so much for her that she became totally dependent on them, making them very uncomfortable. So now they want to ship her off to a nursing home to "protect" her. Instead they will hedge her about with a million rules and restrictions, wrap her in cotton wool, and regulate her to death. Nice way to spend the last years of life for a lady who gave so much to her loved ones.

Carolyn Gold RPlist, Clearwater, Florida USA

**28. I couldn't put it any better, Carolyn. Why can't they try to understand from her side of the fence?!

Angelica RPlist

**29. I know they are trying to think of her best interests, but wouldn't it be better to see if they could get her some assistance so that she could continue to live in her home. She is not that old that she could not get some training and visual aids to continue some of the activities she enjoys. She needs to be encouraged to go out.

Karen Comorato NFB Parents of blind children list

**30. My first response to this story was anger. The family seems to draw the conclusion that mother can't see so we need to put her in a nursing home. Where was mother in this decision making meeting? The family seems so ready to make major decisions for the mother. On the other hand, the general public is not aware of what training is available for a blind person. The only answer available to families dealing with an older person with limitations is to place them in a nursing home. If the public was made aware of what services are available, they would be able to make more informed choices.

Tammi Carrithers Tupelo, Mississippi USA

**31. I don't think that this family is doing the right thing. It seems like they are just dumping her in a nursing home and expecting outsiders to take care of her. It would be better if they could maybe get her some homemaker services and get her hooked up with the local Commission for the Blind who could work with her on Adjustment to Daily Living skills. They could also pitch in and help her clean and prepare meals on different schedules.

Mary Jo Partyka USA

**32. How do you get some one out of a nursing home when they are (I love this word0 "railroaded" in to one against their will? Yes, we must let the Feds know, and take an aggressive approach to the Feds as well, that elderly people who are not making a choice of competitive employment need rehabilitation skills. This would hold true for younger persons as well. Didn't the Feds ever stop to think, (obviously not) that perhaps with the acquisition of skills, blind
people could then seek employment? There is also, and blind people had better start realizing it, discrimination, prejudice, and intolerance and unrelenting ignorance, with respect to how blind people can function, with the acquisition of alternative techniques for coping with blindness. What's up with that?

Peace out. Lucia USA

**33. At first, I thought Grandma's children were figuring some way to shuffle her off to some sort of old people's home. Talk about assuming the worst! That would be like throwing the poor old lady away, and nobody could do that. What the oldest son is trying to say when he says something major has got to happen is that the family has to get together and help her to take care of herself as a blind person is able to do. That means calling in some help from an organization of blind people to show her what to do and how to do it. The next few months are going to be a rewarding challenge for the whole family, including Grandma, who will realize just how much her family really loves her. She shouldn't give up on her card playing. Blind people do play bridge, and get really good at it. Fewer distractions.

Dick Myers Japan

**34. This family needs to see what Mom wants to do and then support in whatever SHE (not the family) wants to do. If the family cant do everything, they need to pull some of Mom's friends in and ask for support.

Jenni Koebel Student Social worker & advocate for people with disabilities Missouri Western State College, St Joseph, Missouri USA

**35. I really, did not want to get into this. As it is close to home.
My brother, may, add. We are a family of 5 brothers and three sisters; with Mom 81. First off, Mom at this age has some health issues. To which, one is, Visual Impairment, now.
After, Mom's husband died. She wanted to continue to travel. So, it was; until the health issue came up and then eye sight. Pretty much the whole family talked about, it.
Then, it was a matter of finding a place, Mom would feel comfortable and yet, keep her freedom!
So, my sister found a senior citizen, complex, in the town we all grew up. Giving Mom:
1. An apartment, easy to care for 2. Emergency service at a drop of a hat and easy access to everything. 3. Reasonable rent
4. Central location, for all family members to come and visit and those close by to just drop, in. It was kind of hard for Mom to think about giving up her camper. As her and Herb, had been traveling around the United States for many years, living in it. Yet, after talking it all over with the brothers and sisters. Then, going to take a look at the complex. Mom, fell in love with the Complex and her new apartment.
From here it was picking out the furnishing for the apartment with the brothers and sisters. Setting it all up and etc.
I can't even believe, that a family would even take the time to say.. Nursing home or.. To not take the time and the energy to talk, to your, Mom. After many years of raising you! Well, in our case, Mom is a wonderful Irish woman! Very caring and very loving! So, we could not even begin to look at a nursing home or anything like, that!
My brothers, Lee, Ed and bill - live close enough to stop in every day or on the weekends. As my Sister Mary Ann, who is her right arm, in her bills and part of the shopping. The rest of us call her every other day, to check up on Mom! When, in NY we make sure to spend valuable time with her! All brothers and two of the sisters, are very supportive of her! As one knows, at that age there is a limited income, on SSI. As Mom, was a professional house wife. When, Herb, died, his retirement died. So, each of us take care of the extras Mom, needs. I couldn't even begin to think of putting her/Mom, into a nursing home. Nor could any of the brothers and two sisters!
Yes, there is issues with the falling eye sight. Yet, with two blind sons in
the family. Everyone has learned and know what to do for her. Even, to the point, Mom, openly talking about her feelings, in the loosing of ones eye sight. Just like she was there for Lee and I, Now, we are there for her! Supporting her, in this loss! After, all! she is our MOM!
To myself, I think, if the brothers and sisters, really love their Mom or if a Dad, then, they should think, twice!!
Just think of the number of years changing diapers, feeding and cooking,
laundry and so on and so forth! It just makes my blood boil! Yet, I suppose, if the Mom or Dad, was not a parent.. Well, maybe I would have a different thought.
Our Mom, has been there from birth to this day for each one of the family! We've been there in her needs too! Mom, is very happy in the Senior Citizen Complex, gets out when she can, walks down into the small community, involved with the Senior Citizen Complex and still helping others. Even though with the visual impairment and a heart operation.
Mom, loves her freedom! So, how could we take something so meaningful as, "Freedom" from her? We Gary, Lee, Gene, Ed, Bill, Mary Ann and Nancy couldn't! So, we listen and support her!
As, suggested in this last listing. There is lots of different services available, to Mom, if needed!! to the day, God forbid, the day she has to pass onto, God. We'll always, be there!
"Mom, I love, You!" Thanks,

Gene Stone Portland, Maine USA geno@maine.rr.com

**36. This family seems to be concerned, but is it for their mother/grandmother or their own peace of mind? First, nothing was said about consulting with the object of their discussion. Nothing has been said about her feelings and ideas to deal with the problem. If the parent had been approached and refused to consider assistance, I could understand not having her at this meeting, but it appears that her wishes have not seemed important. Second, it is obvious to me that this family council is set to air complaints or concerns, not to examine alternatives. I doubt that they have even begun investigating availability of services, etc. I'm not surprised that nothing has been said about adaptive skill training and other programs. Most people don't seem to know anything about them until or unless circumstances require them to take notice. Frankly, it seems that most agencies do in inadequate job of general public awareness. Third, where is mother/grandmother in these concerns? True, she is not there, but is it because the family doesn't want her there or has she refused to participate? Perhaps she is not at this, what seems the first, of meetings, because either the family is too shy to confront the problem directly with her or perhaps they want people to freely state their concerns without her being present. Talking about someone without their direct participation isn't unusual, but not having her involvement at all stages, sends the wrong message to the subject person. If the family truly wants what's best for her and is trying to avoid family problems, her involvement, cooperation and participation are crucial.

Doug Hall Daytona Beach, Florida USA
flhalls@earthlink.net

**37. That is a hard decision to make, but I agree with the others who say that the grandmother should be in on any plans for her future. Perhaps she would be better off going to an assisted living community, the friends she had weren't very friendly, and her children don't seem to know what is best for her.
All of us with aging parents will face this same situation, and I don't suppose there is a right or wrong way to handle it.

Bill Heaney Philadelphia, Pennsylvania USA

**38. I know that some other people have stated this same thing, but I cannot help, but to respond to this, because I have a passion for standing up for the rights of those with disabilities who might not know how to stand up for themselves yet. I am a visually impaired Social Worker and I cannot imagine being in an institution or nursing home, because of having difficulty seeing. I know that back in the early times those with disabilities of any kind were either killed, abandoned, or put in institutions, because people thought that having a disability was a curse, disease, or whatever. Now days this attitude is starting to change, but we still have a long way to go.

As for this family I really hope that they have not made a decision yet in this situation. As I was reading this thought provoker I noticed that there were a couple of things/people missing in this conversation. Someone else has mentioned this as well, but where was mom/grandma. Mom/grandma in this case needs to be involved in the decision of what she does and where she lives. Also Rehabilitation Services can teach this individual how to live independently. Also was this lady taken to a doctor and did this
doctor do any kind of referring to a social worker or counselor. I ask this because a disability, even though it is an obstacle that can be lived with, it is still an adjustment to the individual experiencing the loss as well as the family. I recommend a social worker or counselor, because the loss of vision or any important sensory function is very difficult and needs to be dealt with by the individual. Also the fears that the family might have of can the person live alone and be safe are valid fears, but the family needs to have someone that can educate them and teach them that a person with a
disability can live alone and be perfectly safe. Also the family needs to be reminded that we all fall and get hurt, that is just part of life. If
the family is that concerned a medic alert bracelet can be obtained so that if mom/grandma falls and needs help she can obtain paramedics without attempting to get to a phone and very quickly. Also if the family is any thing like some families in this day and age they will come up with excuses to get rid of mom/grandma and then sell all the possessions and have money for themselves. Now I am not saying that this particular family is doing this, but it is some thing that does happen. If this were the case having a social worker around as an advocate for mom/grandma is a necessity. Also social workers are good sources of information so the family would be able to learn from the social worker where to get resources that might assist the whole family.

In conclusion this mom/grandma could live on her own and as a person with a disability I would like to see this person living on her own. As a person who advocates for those with disabilities I would like to see the public more educated about those with disabilities.

Sincerely,

Jannel Morris St. Joseph, Missouri USA
Jannel Morris, MWSC Student Social Worker and YWCA Victim Advocate
jannelm@hotmail.com
or
jlm2644@mwsc.edu

**39. I am responding to lister *26 I love rehabilitation skills so much. Unfortunately, sighted people always "go halfway,"' on matters that concern us. We need to do more than "educate" ' people, but rehabilitation should be legislated, so that the Feds will know, and ophthalmologists will know to refer those losing their sight to rehabilitation agencies where acquisition of skills can be taught. I do not like though, to hear this about "blind people living with their families." These "blind people are not "unwilling to listen." Where can they go, if they are ineligible for a federal housing subsidy, are "middle income"? Unwilling to Listen to which aspects or elements? And whatever is a "pity-party? Can't it be that people don't know about those alternative techniques for coping with blindness? Why do things have to be one way, and not flexible? I can think and speak for myself too!

Marett, Lucia USA

**40. Well, most things have been already stated here. But it brought to mind the conversation I had with a little lady who lives not far from me. I encountered her while walking one afternoon last week. She said, "Oh, I've been meaning to call you ... I'm losing my sight and I wanted to know how you do things..." We must have talked for about fifteen minutes. She was all set to go for an appointment at our local Vision Clinic. She was a bit scared and just needed someone to talk to. I told her that I was sure she could handle it. That she'd be doing the same things but in a different way.

Interesting topic this.

Ann K. Parsons akp@eznet.net

**41. This really brings memories flooding back of when my grandmother began to lose her vision. She had cataract surgery and complained of severe pain in one of her eyes. The doctor just told her that it was nothing and she listened to him, trusting that he was the specialist and knew best. After many months I pressured her to get a second opinion and since the pain was still prevalent, she did so only to find that she had a deep severe infection that had spread
to the other eye as well. You can guess the rest, she slowly lost all of her remaining vision. She was mostly worried that she would have to give up her home and go to a home for the blind, which one of her brothers was urging her to do. I argued that she should not give up her independence, that she could learn alternate ways of doing things while still living in familiar surroundings with all of the things she had collected and loved. On one trip down after she lost most of her vision, I put one small safety pin in her black pants and jackets, all clothing that would match those and two small safety pins in her Navy blue items. We organized her closet so she could feel where the other clothing was organized. Her worst fear, being a natty dresser, was that she would be caught out in public in black pants and navy blue blazer!!!! We got a person to come in and do housekeeping, a hair dresser that would stop by to wash and style her French twist, and a relative to do the shopping for her. There was even a mobile vet who could come by and do any necessary business for her adorable little dog, who she was sure she would have to give up after she went blind. In her late seventies, she was too frail to use a cane (and a little stubborn too), so I did sighted guide with her and our shopping trips were fast and furious, but most of all fun. Later she would brag to her brothers how we dodged the mobs at the local K-Mart store and how I would talk her through the crowd, so she knew what was coming and going. Since she raised me as a teenager, I was glad that I was able to give back to her in later years.
Her tape recorder gave her much delight. We put raised bumps on the play button, two on the rewind so she could work it herself. Then we had Meals on Wheels bringing in some hot food, since we knew she wasn't cooking like she used to. The good news is she lived independently at home until she died of cancer a few years later. We had people living with her in the last stages so
she was able to be at home when she passed away. It was good to be able to provide an advocacy for her even if it meant going against the older family members who wanted to put her away in a home. She was the fierce independent source of strength right to the very end, the Grandmother that I knew and loved so much!

Suzanne Lange Braille Interpreter, Chico, California USA

**42. I don't hear the mother's slant on the discussion. If all this has been ongoing for some time surely she must have something to say for herself about why she's 'letting things slip'. I'd like to hear mother's side of the story - after all, her mind is still okay. Maybe the sib's have just been getting hold of the wrong end of the stick and beating around the bush with it.

Les Allan

**43. This is an interesting thread. Just today I read an article in the paper about an elderly man who lost his vision after taking medicine for his heart. He had just retired. The company that manufactured this medicine did not list loss of vision as a side effect. And this elderly man was not aware of this side effect. They actually ended up suing the pharmaceutical company and settled out of court. I have a lot of sympathy for this man and his wife. However. . . at the end of the article. . . this man said that his wife is his lifeline. She cuts his food for him. She sets out his clothes everyday. He can no longer walk his dog. He can no longer watch movies or TV shows. I thought "whoa, wait a minute here". I know blind people who are very independent and do things themselves (my deaf/blind husband included). I would not cut his food for him. He takes the bus on his own. I don't set his clothes out. This man lost his vision in 1997. I think he is need of mobility and orientation training. I think his wife should encourage him to be independent. This is what I have done with my husband, to the point of really pushing him. Our son has the same vision loss, and I want my son to see that yes, it is possible to live an independent life even if you are blind.

SUEMARY64 Chicago, Illinois

**44. This thought provoker hits rather close to home for me. The only difference is I, at the age of 26, is the one constantly under
consideration of being placed in a home by my family, and thats a really frightful thought.

I had been living out on my own since February of 1996, but last year
(January of 2002) I underwent a cataract operation that did more harm than good.

In early March of 2002 I was a client at the Kansas Rehabilitation Center for the Blind located in Topeka. I had been there before, but since loosing a lot of my sight I and my VR worker thought it would be a good idea to return and brush up on, and gain more skills in all
aspects of life.
At first everything was going quite well. I was happy for the first time in a long time. I had friends, I went out places on weekends I had
something to do, structure and I felt like I was gaining much ground in
learning to live with my sight such as it was.

To make a long story short, when the summer session started things got, well? Really frustrating and stupid really fast.

It seemed like rules changed every day, and if you had the bad luck of breaking a rule you were called into the directors office for A meeting.

What were some of the rules? Well. The first one that comes to mind is the rule about the stove. See, the center at that time was between dorms so all of the resident clients lived in apartments. Normal, sightling apartments& So there was a kitchen. And in this kitchen there was a stove, which was marked and which I had been using from the start to brew tea, make pancakes or mack and cheese. Suddenly however, it became a mortal sin to even go near the stove.

Then there was the visiting rule. Men and women, all of us or most of us adults were forbidden to sit outside the apartment to talk, even though that wasn’t the case in the spring session. Well the rule was there, but it hadn’t been enforced. Suddenly that to was grounds for a meeting& There were others, but Id have to take and write a book& And anyway I’m getting of my point& We were treated like simple minded children, and we were watched, unknown to us and being reported about.

A majority of the clients were growing frustrated and depressed over how things were going.

When we would try and get something changed we were told bring it up in client counsel meeting& Which, IMHO was stupid and pointless because we never seemed to get anything done.

There were good parts of the program, the computer instruction, TDL (daily living type skills) and O and M.

In July when things seemed to be at their lowest I decided to take action and organize a meeting of the clients, off campus away from nosey staff to bring up the good and bad points of the program. To write this up and submit it to our VR workers and the center. So the people coming along after us would maybe have an easy time of things.

Allow me to back up for a second. At the center there were these behavior modification contracts. If you broke x number of rules you had to sign a contract that said more or less you’ll be a Good dog, living life their way, if you can call it that& That you’ll be a good little blind person and be grateful that you were being there and being told what to do. After all, you are a blind person and shouldn’t be allowed to think for yourself.

I know this sounds bitter, but for me and a group of others, this was the case.

Well in mid July I was kicked out of the program, three weeks shy of
completion.

My parents were called and told that I was causing problems and trying to insight disorder within.

And because of this, I now live with the threat of being placed in a home.

For some people, being in a home is the best thing, but for others, it is not. Especially if the only thing seemingly to be standing in the way is a lack of vision.

Just because someone is blind doesn’t mean they are stupid or unable to care for themselves. Just because we are blind doesn’t mean we don’t know what is best.

The road to hell is paved with good intentions, and this is a
shame. Rather than trying to help the blind person, young or old, it seems like a number of families would rather have the person placed in a home, so they, the family wouldn’t have to bother with helping them learn how to do things without sight& Out of sight, out of mind. But I guess that’s what we get when we live in a disposable society where its perfectly fine to ditch all those things that pose a burden. If
something is broken? Just throw it out and forget about it.

The people in the story may think they are doing the best, most loving, kindest thing by putting their mother away. But& This best, most kindest thing? Who is it for really? The mother or is she just a good front for hiding the real agenda. Is it possible that the family isn’t thinking of their mothers well-being after but, their own?

LK BY FAITH NOT BY SIGHT

Jenny R. Kennedy Wichita, Kansas USA
flemboyantflemster@juno.com
Web Site:

FROM ME: I know by posting this response that it is only one side of a story and by writing this I by no means intend to discount this young woman’s account; nor do I mean to take sides either. The part of her story that applies to this PROVOKER is plain, there is family who are thinking this blind person may need to be taken care of. How many of you thought that being placed in a home would only happen to an elderly person? At what age might this happen?

**45. This is to ask advice rather then give some. I too, am "mom" living alone, in a state that has inadequate visual services. I most certainly want to continue living independently in my own house. However, rehab training here, outside of the visual services office, consists of a couple of weeks in the summer and a school for the blind for children K through 12. I have a combination of r.p. and hearing loss and am getting to the point where I do need new skills. For those of us who do not live in a state with a Commission for the Blind or meaningful support groups, what do you suggest we do to continue our own lives...our own way? By the way, I have endeavored to get a support group going that will provide information, training, counseling (hopefully)
and social interaction but need the expertise of others to do this right. Out of all people I talked to, who have anything to do with visual needs, only one doctor and his nurse were interested in getting involved.

Sheila A

FROM ME: Are there chapters of either of the national consumer groups (ACB or NFB) anywhere near by? Might they assist in starting a local chapter where you live? Talk to the Lions clubs; they have a mission to serve the blind. Any other suggestions from others?

**46. I think that some of us should read this again to get a clearer idea of what
the lady's family is really doing. None of them mentioned shipping her off
to anywhere. Instead, they are practically admitting that they need outside
help, which to me is a very healthy attitude. She needs love and
understanding and a little organized help, which is exactly what she appears
to be getting.

Dick Myers Japan

**47. I think this family is rip for reaching out. It sort of looks like they may jump to putting their elderly mother in a home, but what I think they are doing is deciding to start looking around for what is usually done in a case like the one they are all in. I bet someone would call or be advised to call rehab services for the blind. Granted, it would be best if they knew now that these services are around. I’m not sure what can be done about advertising for the blind services, state budgets are not always plentiful enough to do all that is necessary.

Dixon Peters Michigan USA

**48. My response here is a combination of Updates 1 and 2, as I'm still catching up after being out ill for two weeks. At least, my response here will be more coherent in this update .
Anyway, unfortunately, as many have pointed out in their responses and as many who are not on this list have seen over many years, it's not uncommon for relatives to resort to putting their elderly relative in a nursing home because of their age or frailties. This not only reminds me of how my grandmother was treated likewise as the mother/grandmother in the thought provoker narrative, but it also reminds me of when my husband was ill three years ago with pneumonia. The first thing the social worker at the hospital suggested was that my husband be put in a nursing home until he recovered completely. Nearly blowing my top, I pushed to have him released to me under my care twenty-four and seven, as I knew that having my husband placed in a nursing home would only result in his further deterioration and death. The only outside help I had was a physical therapist and a visiting nurse to work with him and some
friends helping me with grocery shopping. The unfortunate result of placing people in nursing homes that I've seen too many times over is that the patient deteriorates much faster than they would if they were allowed to live in their home or were in an apartment complex with other senior citizens yet still mainstreamed in the community. Not
only is the patient isolated from the community, but they're isolated from their familiar surroundings of friends and family. Moreover, as pointed out in the various responses to this thought provoker, not only are relatives leaving the responsibility for care to those outside the family, but doing such allows for relatives to make excuses for not being involved in the patient's care or coming to visit with the patient. It also allows for relatives to not deal with the situation of their aging relative. Whether people want to admit it or not, all this isolation and being shoved away from the family and community in which they were once involved in does take a toll on the elderly person's mental health. So, to shove the elderly, whether disabled or not, is not fair to that person/patient.

As many have pointed out, particularly Resp. 35, the family in the narrative owes it to their mother/grandmother to help her, not resort to shoving her away. After all, when she had her frustrations with her children and grandchildren, she worked with them instead of throw them out to pasture. She didn't shove her children to some children's care facility to have their diapers changed, to be fed, schooled, etc. So, it would only be fair to pay her back in return by helping her--making adaptations in her home, networking her with other blind successful senior citizens, networking her to training and
rehabilitation resources for blind people, accompanying her to gatherings with other blind people of all ages and remaining involved all throughout the adjustment period and beyond, etc. Not only would they be providing her support, but they would also be learning all the different things blind people of all ages can do; just the same as she, more than likely, learned what kinds of things her children and grand children were into and did, and provided support when they had their problems. In other words, full family involvement and participation of all parties, including the mother/grandmother, is the key in addition to making use of all that has already been suggested combined. In the end, of course, all family members, including the person in question (mother/grandmother), have to be willing to work together, and she, herself, has to have her own initiative to utilize these positive outside resources and family support. Yes, she will have her pride to not want to ask for help, but with family support and being encouraged to ask for help, the feeling of being too proud to ask for help will decrease.

Now, as for how families like in this narrative would know what resources are available for the mother/grandmother and the family, agencies and organizations for and of blind people have to let more of the public know that they are out here. They also have to let more of the public know what services these agencies and organizations provide for senior citizens. Of course, this idea also applies to people of all ages. Not only could PSA's be put out by radio,
TV, or bulletin board, but information packets could be provided at doctors' offices, social service agencies, churches, senior citizens homes and centers, etc. Even better, though, speakers from different organizations and agencies could go speak at the kinds of places I just mentioned. In other words, outreach goes beyond looking for clients, but it also entails public speaking in conjunction with information packets.

Linda USA

**49. I was one of those people who was almost put in a home. I am 81 and still living independently. After my wife died I was lost. She had taken care of all my needs and wants. She was a blessing. However, after she passed I learned how much she had done for me and I was lost. My son and his family didn’t know what to do and they didn’t want to have to care for my like my wife had. They got me involved with the state commission for the blind and I went through their center program and learned to be independent all over again. It was a struggle, but a wondrous one. I now have my own apartment and with little help I have a good life. Reach out, all of you, there are blind people and services for you that can help.

Andy Peterson USA

**50. This Provoker and previous responses bring up some good points that all of us should consider. First, it seems that the family doesn't really know what to do next to help their mother/grandmother. I think that it would be safe to say that they are somewhat unaware of services for people who are blind or visually impaired. As at least one response suggested, agencies generally don't publicize availability of rehabilitation programs, whether this is due to lack of funds or a bureaucratic idea that public awareness/relations isn't important. Related to this first, is the availability of Talking Books. Many people, especially here in Florida, first learn about services through involvement in the Talking Book program.
Second, where are the consumer groups that can and should be a critical force in awareness and advocacy? Consumer organizations, NFB, ABC, BVA and many statewide and local groups have and should make the public and their own members aware of abilities. This Provoker may just be a call to us to do a better job of educating people about our abilities and, perhaps more important, our potentialities.

Doug Hall Florida USA

**51. I really don't think they should be considering a
home. It would be cruel to shuffle her off to a home, where she would have to learn all over where things were. I think they would make a logical decision and find out "what is out there", then asking for help and advice rather than rehab for her. Training for the family and training for her would be my choice. Watch out for "rehab". It can become a dirty, hated word.

Dick Myers Japan

**52. I would like to help out 45 in suggesting.
Hadley School for the Blind has a ton of courses and classes on independent living, adjusting to blindness, support groups, and a ton more exciting topics. They their courses accessible in anyway they can, and the instructors are really responsive on getting feedback and trying to get help. You should check them out at www.hadley-school.org And I agree with Robert's suggestions. Would also like to check out who in your state is a "professional" in blindness, I use this lightly, just someone trained in skills or information as a support person.

Just my two cents in this discussion.

Shelley L. Rhodes rhod3021@kutztown.edu
MSN:
juddysbuddy@hotmail.com

**53. This story reminds me of a similar situation with my grandmother who passed away last year. She wasn't blind; She had Alzheimer. I stayed with her as long as I could but things started happening that I couldn't prevent. She stayed with us when I moved back home on the weekends and my uncle through out the week until we had to put her in a nursing home. I know this is different from an elderly person being blind and we didn't want to put my grandmother in a nursing but she needed more care than we could provide. This technology is great! We can discuss issues with people from around the world. Strangely enough it is easier to find some one on the Internet who is on the other side of the planet than it is to find some one in your own back yard.

I live in Hendersonville Tennessee. Hendersonville is just a few miles from Nashville. Nashville is in Davidson county and Hendersonville is in Sumner county. Since the Rehab services are in Nashville there is no real way to link the services as far as transportation for blind people who live in other counties. Tennessee also doesn't have a commission for the blind.

In this story the grandmother and her family probably discovered her blindness through her family physician who may or may not have referred her to an eye doctor. This is where the information on support groups and resources should have began but it probably didn't.

When a person and their family is confronted with blindness or any major health or other wise life altering situation; They need their family's support along with outside assistance be it retraining them or nursing care for them so they can live out their last days in familiar surroundings. The family needs to be family and the nurses or councilors need to be able to do their job and there shouldn't be any penalties for doing things this way. Sometimes living with your may keep you from qualifying for outside resources.

I think with the right training which would include here and people on the outside training her; The grandmother could return to living independently.

Paul Oeser Hendersonville, Tennessee USA

**54. How do we make sure that *44 is not committed to a nursing home? What can we all do to assist her? Yes, Public service announcements should be made on radio and television all about rehabilitation skills blind people can learn. The media must be made aware of how blind people can achieve independence, but more importantly, control over their own destiny! Doctors, I am learning, are the worst offenders! They won't admit a lack of knowledge concerning alternative techniques! How can we reach them all?! We don't want said respondent to be placed in a nursing home. Blindness alone, doesn’t merit this kind of treatment. What say you?

Lucia Marett USA

**55. In response to your question regarding how many of us thought that being placed in a special home could only happen to the elderly, I learned from personal experience that such can also happen to young people. When I started seeking to move out on my own at age nineteen, my mother started having me consider living in some kind of facility that teaches independent-living skills. While that was okay, as more conversations transpired between us, I learned more
that the kind of home she was referring to was more like a group home of some kind, not something like an NFB training center. Not only would I not have it because of such a home she was referring to, but I already had most of the basic skills needed. All I needed more of was tips on bettering my skills-sorting laundry, keeping my socks matched, and cooking more advanced meals than just TV dinners, soups, or macaroni and cheese. Networking with some of my sighted
friends in and outside of school, we found a house for rent by the time I was twenty-one and was more financially stable to pay my monthly rent. During those two and a half years that we all lived together, I not only had the opportunity to better my skills on my own, but I bettered my cooking skills with the help of my roommates and some cooking instruction at a rehab center. I also got the helpful tips I needed from other blind people in the different areas listed above.
So, yes, being placed in a special kind of home can happen to young people. In fact, it can happen at any time in one's life. If the person, whether young or old, has the wherewithal to fight for and assert their own independence or has family members and/or friends who are supportive or have resources available to resort to for adequate independent-living skills training necessary for the person to live on their own without being supervised, then being placed in such special homes can be avoided.

Linda USA

**56. What a tenderhearted family! I have a couple of blind friends who could really show them how a blind person can get along and do some things better than sighted person. An old shoe is meant to be thrown out, but a elderly person who has developed a handicap needs o have some quality of life given to hem. There is help available. Try that and if Grandma herself finds it to hard, perhaps she then will make up her own mind. But please, let the individual
have some say in what kind of life she wants.

Elwood Mabley Washington USA

**57. While I don't think that such is the case here in this thought provoker narrative, I have often found that many family members who opt to or force their relative, whether young or old, into a nursing home or other kind of special home that doesn't train or allow for total independence, are the ones who don't expect anything positive of the individual in question and/or they don't want to be bothered with helping or providing the individual support to get back on their feet again. Yes, I understand that family members have jobs or their own children to take care of, but so many of them still have much time on their hands to be able to provide some kind of positive support but don't use such time wisely. Just a few thoughts to think about when these situations of the blind and/or elderly are put into such convalescent homes as Resp. 44 has written about.

Linda USA

**57. My mom's mother was in a similar situation to the person in this story. She has since passed away, but she was experiencing deteriorating vision and needed
help. She had gone out to Seattle, where her son, my uncle, lives with his wife and two beautiful girls. He and his wife are both O&M instructors. My grandmother
ended up looking at some condos with my uncle, but they weren't really suitable for her needs. Then she moved back up to Chicago with us, and my mom helped
her look at some places. They both finally agreed on a condo located just a few minutes from our house. This condo was perfect for her. It had a nice little
kitchen, a living room/dining room, a half-bath, and a sizable bedroom with two beds and a full-size bathroom. She would frequently invite one or two of
us to spend the night with her. Yes, I was included in these overnights too and they were fun. We didn't rely on the rehab agency here to provide an in-home
teacher for her. We tried but phone calls and written communication were never returned. So my parents split up the duties among themselves. There is a
senior center close by which pitched in a lot as well.
I'd say the family in this story is very loving and has their grandma's best interests in mind, but I think they need to try and seek the advice of their
local VR agency. My experience with VR has been to never, and I do mean never! expect things to automatically happen because they don't. Most VR agencies
I think need constant prodding, at least that is how it is here in the Land o' Lincoln! My father's mother is also in a similar situation. Her husband
has also since passed away, and my father and his brothers and sisters are currently talking with her about some kind of assisted-living arrangement should
she become visually-impaired or acquire another disability.

Jake Joehl, Chicago, Illinois