Helping to cope with blindness at the end of life
May 22, 2007 9:19 AM Subscribe
How to reach out to someone who is going blind, when you can't be there?
My grandmother is a smart, classy lady who has accepted all of the ravages of age without complaint, and has gone to great pains and personal expense to make every possible arrangement for her care so as not to burden any of her family. She's 86 years old and lives in Montana.
Recently she was diagnosed with macular degeneration, and her vision is fading rapidly. She has gone from reading with glasses to reading (with difficulty) with a magnifying glass in a matter of months. She has begun to train my grandfather to do the bookkeeping and so forth, again looking out for everyone around her. However this has shaken her like nothing else; reading has been her passion all throughout life, as have sewing, writing, and gardening. Now more than ever she is coming to terms with her death, and so are we.
I got to see her a couple of years ago; it's very expensive to fly to Montana from NYC, so it's not a trip I may be able to repeat. She and I exchange letters and occasional phone calls, and have sort of a special bond. It is hard knowing that even if I do get to visit her, she will never be able to see me again, and I've begun to realize that while she still has at least some vision left, I have the opportunity to provide her with a final image of myself and our relationship or an impression of life itself that she can hopefully enjoy even after her sight is totally gone.
I want to know first of all what kinds of gifts I can send to her now to comfort her throughout this process, or that will offer comfort after she is blind. I'm aware of the basic array of gizmos and helpers available for the blind, I'm looking for things that satisfy needs on a more human level, the kind of thing I don't think others in our family can be relied on to think of or understand.
I also would like suggestions on ways to reach out to someone long distance who I know I may not see in person ever again. She's not a very sentimental person, but genuinely appreciates and respects acts of consideration and thoughtfulness, or things that others have put time and effort into. Should I send pictures of myself and my life here, and is there a way to do this so that they will remain special even after she can't see them?
Just so you know, their house is basically pre-Information Age, no technology more advanced than a cordless phone and the truck in the garage.
My grandmother is a smart, classy lady who has accepted all of the ravages of age without complaint, and has gone to great pains and personal expense to make every possible arrangement for her care so as not to burden any of her family. She's 86 years old and lives in Montana.
Recently she was diagnosed with macular degeneration, and her vision is fading rapidly. She has gone from reading with glasses to reading (with difficulty) with a magnifying glass in a matter of months. She has begun to train my grandfather to do the bookkeeping and so forth, again looking out for everyone around her. However this has shaken her like nothing else; reading has been her passion all throughout life, as have sewing, writing, and gardening. Now more than ever she is coming to terms with her death, and so are we.
I got to see her a couple of years ago; it's very expensive to fly to Montana from NYC, so it's not a trip I may be able to repeat. She and I exchange letters and occasional phone calls, and have sort of a special bond. It is hard knowing that even if I do get to visit her, she will never be able to see me again, and I've begun to realize that while she still has at least some vision left, I have the opportunity to provide her with a final image of myself and our relationship or an impression of life itself that she can hopefully enjoy even after her sight is totally gone.
I want to know first of all what kinds of gifts I can send to her now to comfort her throughout this process, or that will offer comfort after she is blind. I'm aware of the basic array of gizmos and helpers available for the blind, I'm looking for things that satisfy needs on a more human level, the kind of thing I don't think others in our family can be relied on to think of or understand.
I also would like suggestions on ways to reach out to someone long distance who I know I may not see in person ever again. She's not a very sentimental person, but genuinely appreciates and respects acts of consideration and thoughtfulness, or things that others have put time and effort into. Should I send pictures of myself and my life here, and is there a way to do this so that they will remain special even after she can't see them?
Just so you know, their house is basically pre-Information Age, no technology more advanced than a cordless phone and the truck in the garage.
Get her in touch with the Montana Talking Book Library. This is a state level service for people with visions problems that gets you (her) books on tape, magazines on tape and descriptive videos free of charge, including new books, non-fiction, etc. She'll have to fill out an application and sign up, but the rest of the process happens through the mail. I'm not sure if it's still the same as when I had a friend that did it, but he got a special tape recorder that he got to pretty much keep and it played the special high-storage tapes. They've got a really decent collection and she should start the sign up process now. She may not know that this service is offered free of charge to any state resident. Her local library should be able to help her sign up or she can do it directly.
Another thing that I think would be useful is just being descriptive when you talk to her, telling her what the things aroubnd you look like. This is not a good strategy for vision imapired people who have never been able to see, but for someone who has lost their sight. So when you talk to her explaining the changing seasons visually as well as every other way you explain them is a good way to keep visual memories alive and fresh.
posted by jessamyn at 9:35 AM on May 22, 2007
Another thing that I think would be useful is just being descriptive when you talk to her, telling her what the things aroubnd you look like. This is not a good strategy for vision imapired people who have never been able to see, but for someone who has lost their sight. So when you talk to her explaining the changing seasons visually as well as every other way you explain them is a good way to keep visual memories alive and fresh.
posted by jessamyn at 9:35 AM on May 22, 2007
It might be nice to send her things that arouse her other senses: bubble bath comes to mind, as do books on tape or CD depending on what she has -- maybe even get her a portable CD player, and make a recording of you and other family members talking about things that she'd like to hear.
And, while it may be difficult or even impossible, it would be wonderful if you could visit her as soon as possible. It might be the last time she would actually "see" you.
posted by brina at 9:37 AM on May 22, 2007
And, while it may be difficult or even impossible, it would be wonderful if you could visit her as soon as possible. It might be the last time she would actually "see" you.
posted by brina at 9:37 AM on May 22, 2007
Does she have wet AMD or dry AMD?
If she has wet (or neovascular) AMD she should ask her doctor about the newly FDA approved drug, Lucentis or the very similar avastin (not FDA approved for ophthalmological use, but commonly used off-label). Both have recently proven to work well for wet AMD.
However, the majority of people with AMD have dry AMD, and there is not much that has helped in either treating or preventing dry AMD.
posted by sulaine at 9:43 AM on May 22, 2007
If she has wet (or neovascular) AMD she should ask her doctor about the newly FDA approved drug, Lucentis or the very similar avastin (not FDA approved for ophthalmological use, but commonly used off-label). Both have recently proven to work well for wet AMD.
However, the majority of people with AMD have dry AMD, and there is not much that has helped in either treating or preventing dry AMD.
posted by sulaine at 9:43 AM on May 22, 2007
Response by poster: The airfare is generally way over my head ($500+), but to be honest I'm not that worried about it. She and I have had a few really good visits over the past five years, and at some point you just have to accept that any of them may wind up having been the last one.
It's almost worse for me to visit, actually, because I have to fly into Billings and then either rent a car (expensive) or have someone drive 3 hours round trip to fetch me, probably Grandpa, who's no spring chicken himself.
I honestly hadn't thought of audiobooks because I guess I just take them for granted, but someone like her, living where she does, probably hasn't. I'll find out if they have her set up to be able to enjoy them, and begin sending them ASAP so she can get used to liking them before it becomes a necessity.
And Jessamyn, that link is going to be a big help, I can tell.
posted by hermitosis at 9:49 AM on May 22, 2007
It's almost worse for me to visit, actually, because I have to fly into Billings and then either rent a car (expensive) or have someone drive 3 hours round trip to fetch me, probably Grandpa, who's no spring chicken himself.
I honestly hadn't thought of audiobooks because I guess I just take them for granted, but someone like her, living where she does, probably hasn't. I'll find out if they have her set up to be able to enjoy them, and begin sending them ASAP so she can get used to liking them before it becomes a necessity.
And Jessamyn, that link is going to be a big help, I can tell.
posted by hermitosis at 9:49 AM on May 22, 2007
Here is a radio program that is created with sight- compromised folks in mind. Mind's Eye Radio. I think they are available free online.
posted by sulaine at 9:51 AM on May 22, 2007
posted by sulaine at 9:51 AM on May 22, 2007
Keep writing the letters that you usually write, but after you write them, read them into a tape recorder (or burn a CD if you have the technology to do that.) If she doesn't have a tape or CD player, send her one. Maybe send her one of those Fisher-Price type ones for children, with the bright colors and the big buttons? I think those would be easier to use if you had poor vision. (Actually, I bet there are special ones made for people with poor vision.) Phone calls are great, but they're not permanent like letters.
posted by craichead at 9:52 AM on May 22, 2007
posted by craichead at 9:52 AM on May 22, 2007
Start keeping a log of scenes in your everyday life that you find especially interesting or beautiful. Write them down, then record them. This may involve sending her a device to play them on, but I think it would be worth it, since it would do several things. Aside from being a good descriptive practice, it will show you you are thinking of her and want to share your experiences with her. Were there activities you shared that you continue to do on your own? I imagine this would be a good source for these stories as well.
Maybe there's also a craft project that you could send her that is especially tactile. Pillows come to mind.
Bascially, since you can't be there physically, sending items that let her feel your presence through something you made or hear your voice would be a wonderful way to connect with her.
Good luck.
posted by piratebowling at 9:54 AM on May 22, 2007
Maybe there's also a craft project that you could send her that is especially tactile. Pillows come to mind.
Bascially, since you can't be there physically, sending items that let her feel your presence through something you made or hear your voice would be a wonderful way to connect with her.
Good luck.
posted by piratebowling at 9:54 AM on May 22, 2007
You might also want to read up on some of the information on the American Foundation for the Blind, they have a special section for Friends and Family (might be good for grandpa too) including help for an older relative and this excellent home survey checklist which disusses a lot of small things you can do in the house to make it easier for someone with degenerating vision. Some of this is stuff you could help with from far away such as setting your grandpa up with a BOLD labelmaker, stairway edge markers or a high contrast phone.
I'm sorry, I know you said you're not looking for gadgets, but sometimes having the appropriate gadget means that something you thought would be denied to you as you lost your vision is something you can still interact with. You can Google Gardening for the Blind to find a lot of practical tips on how gardening can still be an enjoyable activity even with vision impairment.
posted by jessamyn at 9:58 AM on May 22, 2007
I'm sorry, I know you said you're not looking for gadgets, but sometimes having the appropriate gadget means that something you thought would be denied to you as you lost your vision is something you can still interact with. You can Google Gardening for the Blind to find a lot of practical tips on how gardening can still be an enjoyable activity even with vision impairment.
posted by jessamyn at 9:58 AM on May 22, 2007
My grandma also has Macular Degeneration and has for a few years now. Yes, she has trouble seeing but she hasn't gone completely blind yet. When I visit her it takes her a minute or so to look me over but she can usually tell what I'm wearing and when I showed her my engagement ring, she was able to accurately comment on it. Of course, the stages/variants of Macular Degeneration may be different between our grandmothers, but I thought it might give you some hope.
Things we did to make my grandma's life easier was to get telephones/radios/remote controls/clocks with HUGE buttons and numbers on them. Audiobooks helped but the thing she really appreciated the most was a quality radio. She also really loves the phone. We get her phone cards and write out the necessary numbers really big. We often send her huge printed-out pictures of her great-grandchildren, too.
Visits are nice. She generally saves up the letters and cards she gets so that we can read them to her. It helps if you are well-spoken and expressive. We make sure she has enough batteries for her lit magnifying glasses.
One thing we always have to keep an eye on (my grandmother lives alone) is expiration dates on her food. It's a good thing she has your grandfather there.
She also laments not being able to garden, but we bring her simple potted flowers and she can easily take care of these. The bursts of color they bring are cheery enough, I think. Calling grandma for advice on my own first garden has really brightened her spring, too.
At Christmas time I'm planning on using my brother's projector and project family photos on the wall. I've been scanning in her collection of photos from the 1940's and I think she and the family would like to see them. It would also be a chance for her to identify people in them before her eyesight gets even worse. This is very important, I think. The projected images should be bright and large enough for her to see.
The thing that has always mattered most to my grandma has been phone calls, though. I know it's hard for you to visit her but please keep calling her or as suggested above, sending read letters on CD for her. As vision goes, so does the amount of activities one can engage in. I think this leads to boredom, at least it did for my grandma. Phone calls make this better, or at least we hope so!
Best of luck!
posted by bristolcat at 10:10 AM on May 22, 2007
Things we did to make my grandma's life easier was to get telephones/radios/remote controls/clocks with HUGE buttons and numbers on them. Audiobooks helped but the thing she really appreciated the most was a quality radio. She also really loves the phone. We get her phone cards and write out the necessary numbers really big. We often send her huge printed-out pictures of her great-grandchildren, too.
Visits are nice. She generally saves up the letters and cards she gets so that we can read them to her. It helps if you are well-spoken and expressive. We make sure she has enough batteries for her lit magnifying glasses.
One thing we always have to keep an eye on (my grandmother lives alone) is expiration dates on her food. It's a good thing she has your grandfather there.
She also laments not being able to garden, but we bring her simple potted flowers and she can easily take care of these. The bursts of color they bring are cheery enough, I think. Calling grandma for advice on my own first garden has really brightened her spring, too.
At Christmas time I'm planning on using my brother's projector and project family photos on the wall. I've been scanning in her collection of photos from the 1940's and I think she and the family would like to see them. It would also be a chance for her to identify people in them before her eyesight gets even worse. This is very important, I think. The projected images should be bright and large enough for her to see.
The thing that has always mattered most to my grandma has been phone calls, though. I know it's hard for you to visit her but please keep calling her or as suggested above, sending read letters on CD for her. As vision goes, so does the amount of activities one can engage in. I think this leads to boredom, at least it did for my grandma. Phone calls make this better, or at least we hope so!
Best of luck!
posted by bristolcat at 10:10 AM on May 22, 2007
Seconding the recommendation that Jessamyn made - contact the American Foundation for the Blind. (Full disclosure, I was their librarian for awhile.) At one point, if you contacted their 800 number - 1-800-AFB-LINE - and told them that you were looking for information for your grandmother with MD in Montana, they'd put together a packet of information specific to your needs and mail it to you.
The packet would be basic information, for you and your grandmother, about what to expect - but also lists of available resources - places to buy assistive technology (when/if she's ready), the talking book program, etc... I can't guarantee that they still do this (it's been several years) but just talking with a professional in the field may tip you to pointers that we can't (when I was in the library, the helpline person had MD, so she could tell you first hand). Also on their website under the "Where Can I Find?" dropdown, is a quick and dirty version of their directory of services.
Since you're in NYC, you may want to check out the store at The Lighthouse - they have assistive products from magnifiers to labelers, things you might not think of off of the top of your head that are kind gifts that will make her life easier.
My great-aunt has MD, and is probably at a similar technology level as your grandmother. She favors a discrete but powerful magnifying glass (found it at B&N), and regular audiobooks on tape to the talking book program. She loves to get flowers - and perfumed bubble bath. I bought her a little table fountain that gurgles - she said that the white noise is a comfort. And "audio described movies" - there is an additional track on the DVD that is sort of like exposition - it tells you what you can't see on the screen, so that she could still enjoy films.
posted by librarianamy at 10:38 AM on May 22, 2007
The packet would be basic information, for you and your grandmother, about what to expect - but also lists of available resources - places to buy assistive technology (when/if she's ready), the talking book program, etc... I can't guarantee that they still do this (it's been several years) but just talking with a professional in the field may tip you to pointers that we can't (when I was in the library, the helpline person had MD, so she could tell you first hand). Also on their website under the "Where Can I Find?" dropdown, is a quick and dirty version of their directory of services.
Since you're in NYC, you may want to check out the store at The Lighthouse - they have assistive products from magnifiers to labelers, things you might not think of off of the top of your head that are kind gifts that will make her life easier.
My great-aunt has MD, and is probably at a similar technology level as your grandmother. She favors a discrete but powerful magnifying glass (found it at B&N), and regular audiobooks on tape to the talking book program. She loves to get flowers - and perfumed bubble bath. I bought her a little table fountain that gurgles - she said that the white noise is a comfort. And "audio described movies" - there is an additional track on the DVD that is sort of like exposition - it tells you what you can't see on the screen, so that she could still enjoy films.
posted by librarianamy at 10:38 AM on May 22, 2007
My 83-year-old mother has Macular Degeneration. She bought a VideoEye to help her decipher paperwork and bills, but it's still quite difficult for her as her vision continues to decline. "Gizmos" are great, but sadly, they're not enough.
Reading books had been her main form of recreation, but she has given that up. I've tried the audio books on her, suggesting they were like the radio shows she listened to back when she was growing up, but she says she just doesn't like them. She also says that TV is like a gray blur now, although she does listen to CNN and the local news.
We never used to talk much on the phone, since she and I have both been more oriented to the written word. For years, we exchanged emails daily, and this allowed her to keep all her children "in the loop" with a single message. Now I call more often and visit once or twice a month.
Her health has declined sharply in the last year, and she when she isn't at the hospital or a nursing facility, she spends a great deal of time sleeping. That may reflect boredom as much as anything else, or maybe the sleep is the silver lining in this cloud.
One practical thing I have done for my mother is to take over her paperwork and financial matters. She gave me a durable power of attorney which allows me to do the things she can no longer do for herself. I pay her bills online, I did her taxes, I talk to whatever businesses need talking to. I imagine that your grandfather will do that now, but I hope that there is a clear alternate designee in your family who can handle this in case he were unable for some reason.
Since visits are not practical for you, probably the phone calls are the biggest and most significant gift you can give. I would also think of gifts that involve the other senses. For example, my mother loves coffee. Although she cannot see, the taste and smell of a good cup of coffee makes her feel better. So, from time to time my sister or I send her some pre-ground good-quality coffee. These sorts of things add to her sense of well-being and being cared-for.
posted by Robert Angelo at 10:44 AM on May 22, 2007
Reading books had been her main form of recreation, but she has given that up. I've tried the audio books on her, suggesting they were like the radio shows she listened to back when she was growing up, but she says she just doesn't like them. She also says that TV is like a gray blur now, although she does listen to CNN and the local news.
We never used to talk much on the phone, since she and I have both been more oriented to the written word. For years, we exchanged emails daily, and this allowed her to keep all her children "in the loop" with a single message. Now I call more often and visit once or twice a month.
Her health has declined sharply in the last year, and she when she isn't at the hospital or a nursing facility, she spends a great deal of time sleeping. That may reflect boredom as much as anything else, or maybe the sleep is the silver lining in this cloud.
One practical thing I have done for my mother is to take over her paperwork and financial matters. She gave me a durable power of attorney which allows me to do the things she can no longer do for herself. I pay her bills online, I did her taxes, I talk to whatever businesses need talking to. I imagine that your grandfather will do that now, but I hope that there is a clear alternate designee in your family who can handle this in case he were unable for some reason.
Since visits are not practical for you, probably the phone calls are the biggest and most significant gift you can give. I would also think of gifts that involve the other senses. For example, my mother loves coffee. Although she cannot see, the taste and smell of a good cup of coffee makes her feel better. So, from time to time my sister or I send her some pre-ground good-quality coffee. These sorts of things add to her sense of well-being and being cared-for.
posted by Robert Angelo at 10:44 AM on May 22, 2007
Does your Grandmother know how to knit or crochet? My grandma was diagnosed with wet MD about two years ago, and has given up embroidery and taken up knitting instead. So maybe you could send her a box of good quality, brightly colored yarn?
Maybe gift certificates for food or cleaning services, or other practical things, would be apreciated - not just by your Grandmother, but by your Grandfather too, who must be feeling pretty overwhelmed.
And seconding sulaine's comment to follow up on the injections if your Grandmother has the wet type of MD. My Grandma has regained enough of her vision that she can watch some TV (but still can't see finely enough to read or embroider).
posted by twoporedomain at 11:13 AM on May 22, 2007
Maybe gift certificates for food or cleaning services, or other practical things, would be apreciated - not just by your Grandmother, but by your Grandfather too, who must be feeling pretty overwhelmed.
And seconding sulaine's comment to follow up on the injections if your Grandmother has the wet type of MD. My Grandma has regained enough of her vision that she can watch some TV (but still can't see finely enough to read or embroider).
posted by twoporedomain at 11:13 AM on May 22, 2007
Response by poster: Dirtynumbangelboy emailed me with the following (excellent) suggestions which I'll share here:
"How about making your own audiobooks for her? Maybe start with books she read to you as a kid, and move up. See if you can get her one a week? Or maybe send her an Ipod with a whole smegload of books preloaded?"
I feel weird about recording my voice when I could just call her, but making my own audiobook is a great idea.
posted by hermitosis at 1:40 PM on May 22, 2007
"How about making your own audiobooks for her? Maybe start with books she read to you as a kid, and move up. See if you can get her one a week? Or maybe send her an Ipod with a whole smegload of books preloaded?"
I feel weird about recording my voice when I could just call her, but making my own audiobook is a great idea.
posted by hermitosis at 1:40 PM on May 22, 2007
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posted by vytae at 9:32 AM on May 22, 2007