My mom-in-law is blind and has dementia. It is a very difficult situation. I have had several occupational therapists come to provide suggestions and nothing so far has worked. A lot of the memory aids they use are visual. A lot of the devices available require eyesight. The aids available for the blind (like braille or voice responsive technologies like Alexa) require a cognitive ability she doesn’t have. No one has been able to help her so far and we are coming to the conclusion that only a caregiver can help her.
get help from someone who works with the blind. You will need to know how to assist her properly too. She will need to know how to receive the assistance. I work with the blind and just leading them by the hand does not work. Especially if she has dementia she will need therapy in using you and a white cane.
motherandI: A part of your query would be to know if your mother is of either two classifications, i.e. 'legally blind,' which means she has some sight/commonly known as low vision or 'completely blind.' Nonetheless, you can garner much assistance by working with the COB (Commissioner of the Blind) in your locality. My mother was a legally blind woman and was aided by the COB with a lot of products, such as magnifying machine, hot water teacup adapter and a lot more. Of note, is that she lived ALONE many states away from me and was managing with low vision fine until her blood pressure plummeted, causing me to move there. However, my mother did not suffer from dementia.
There are many types of blindness. If it is central acuity from macular degeneration she may be legally blind, but with the right peripheral cues will be able to ambulate and perform many self care skills. You would need an OT to do a home visit to help evaluate her safety. You should also have her work with an OT trained specifically to work with patients who are visually impaired.
When peripheral vision is lost it is quite another story. The person may still have good acuity but will not be able to move around without physical support. Balance and coordination are usually poor, and fear of falling can actually be paralyzing. She may give up walking or say she can't.
You need her eye doctor to be very clear about what she can and cannot see, and why. There are types of optic nerve degeneration that are genetic and possibly hereditary - you need to know about that too. There is also agnosia, when the patient isn't actually blind but doesn't know what they are seeing and where. There is no meaning and the patient says no when asked if they can see a specific target. Cortical blindness and agnosia are usually stroke related, which can also link to dementia.
If Mom's dementia is significant, don't waste time and money on special optical aids that she may not be able to learn to use. someone with very mild dementia may benefit greatly from a "Low Vision" evaluation and prescription. There are specialists around the country who are trained in this field. Although it can be expensive, this approach may keep her more functional for a few more years.
If she doesn't already, Mom will need full time support for her safety and to prevent anxiety exacerbating her dementia. Start making appropriate plans for her long term care.
This is quite long although it may help others and is a good reference - google for more tips:
Tips Related Specifically to Vision Loss
The degree to which a person with dementia is able to cope is likely to be influenced by loss of vision. Research shows that there are changes in vision and visual processing that may be relevant with regard to a diagnosis of dementia. Tips for making the environment accessible for persons with vision loss such as use of color and contrast may not work for persons with dementia. You may need to proceed by trial and error to determine if tips and techniques for use by persons with vision loss will work with your relative. Persons with vision loss may have learned to rely on auditory signals. Be aware that dementia may have altered perception of auditory signals. Depth perception may also be altered. Shiny flooring may be mistaken for water. Patterned floors are easily misinterpreted and may create fear and anxiety. Keep furniture and other objects in familiar places Use contrasting colors, such as a dark plate for serving mashed potatoes, a white toilet with black toilet seat or a color to identify a bathroom door Help person identify people by telling others to say their names Explain what is occurring, who is with them and where they are Make sure person has regular eye checkups and tell the eye doctor that the individual has dementia. When the person cannot identify an item correctly, it is best to avoid arguing with them, or saying too much. If possible, give the item to them and calmly explain its name and use. Reduce clutter, changes in floor surfaces and busy patterns on floors and walls
Hydration and Bodily Functions
Make access to fluids convenient in order to prevent dehydration. Monitor liquid intake and avoid caffeine. Provide a safe route to the toilet. Make sure clothing is easy to take on and off. Replace difficult buttons and zippers with Velcro fasteners. Limit fluids before bedtime. Consider using a bedside toilet during the night. Remind your relative to go to the bathroom every few hours. Look for cues of needing to go such as tugging at clothing. Install grab bars in the bathroom. Install a raised toilet seat if necessary.
Medication Medication may alter thirst and body temperature. Discuss medication side effects with your relative’s doctor. Keep medications in a secure place. Enlist a home health care nurse or trusted friend or neighbor to administer medication if your relative is still able to live alone. Medication minder alarms may cause agitation and confusion. If your relative has swallowing difficulties, ask the pharmacist if the medication is available in liquid form, patch form or if the medication may be crushed and mixed with food. Keep a medication log.
Mealtime
If your relative is afraid to sit down, place your hand on his/her backside and speak descriptively and reassuringly as in “the chair is right behind you and I’m going to hold your arm for support as you sit down.” Make mealtime pleasant and minimize distractions. Describe food on the plate at mealtime. Encourage self feeding but cut food into bite size pieces to avoid choking. Sit with the person while they eat as a precaution against choking. Check food temperature before serving. Prepare favorite foods to encourage good nutrition. Loss of sense of smell and taste may result in decreased appetite, weight loss and malnutrition. Use finger foods when possible. Serve only one or two foods at a time and limit utensils to one or two.
The Home Environment
Help person identify people by telling others to say their names Explain what is occurring, who is with them and where they are Make sure person has regular eye checkups and tell the eye doctor that the individual has dementia. When the person cannot identify an item correctly, it is best to avoid arguing with them. If possible, give the item to them and calmly explain its name and use. Reduce clutter
Based on her needs, meaning medications, I Love the Hero Pill Dispenser. It alarms when its time to take meds, you can have the app loaded on your phone so you are made aware if she takes the meds.
The beauty is the pills are dropped into a little cup, so there's no tearing opening packages.
She can still have her independence and you can have peace of mind that she's taking her meds.
MotherandI ~ I also care for my legally blind mother (94). One product that has been a game changer is Alexa. You’d have to set it up with your smart phone, but their customer support is awesome. Mom has three devices (Echo Dots). One on her nightstand, one in the kitchen and one in by her “reading chair”. Always an avid reader, Mom really enjoys listening to her audio books. Alexa makes it so easy. “Alexa, resume my book” and Alexa starts up where Mom left off. You can slow Alexa’s pace down just by requesting “Alexa, speak slower”. (Especially helpful for Mom when the reader has an England accent). If necessary, Mom says, “Alexa, go back 5 minutes” (or 10 or whatever) to help Mom remember what was happening in the story. This does cost around $18 a month through Audible, but there are hundreds of free books available in Audible.
In the middle of the night, when Mom wakes up to use the bathroom, “Alexa, what time is it?” since she can’t see to read a clock.
Before bed, “Alexa, set an alarm for 8:00 a.m.” (and, to be on the safe side…”Alexa, set an alarm for 8:05 a.m.” 😉)
”Alexa, call Darlene”. Alexa, call David”. (You can program 10 names and their numbers into her call list). Alexa cannot call 911. The Life Alert lanyard she wears covers that base.
”Alexa, what’s the question of the day?” ”Alexa, let’s play Common Knowledge”. “Alexa, tell me a football joke.” ”Alexa, let’s play Either/Or”
Such a super handy device that helps my mom feel connected. All she had to learn was to start her request with “ALEXA…” and that did take some practice. She’s got it now and Alexa is one of her “friends”. Can’t recommend it enough.
Family Feud is on the Game Show Network at 9 pm Central Time. It is a TV show she can listen to and enjoy without being able to see it. We just have to leave the TV turned to that station, with the volume set and a popcorn kernel taped to the mute button on the remote, so she can watch at night, if she desires. (And bubble wrap over the rest of the remote so she doesn’t accidentally turn it to another channel or off.) She is alone 4 nights a week and manages just fine for now. I stay from Friday morning thru Monday morning and we have a fun weekend.
I’ve learned that I can balance three days on, four days off. I’ve leaned into it and have come to enjoy it. Thankfully my brother and his girlfriend split up the other four days. It’s working for now.
Mom loves to have the newspaper read to her and we tackle the 7 Little Words puzzle. We try to anticipate what advice Dear Abby will give to that day’s question. She’s good at easy crossword puzzles if I say, “Three letters. The first letter is C. The clue is ‘a feline’”
Anytime I feel frustrated or defeated, I try to remember how frustrated and defeated my sweet mom must be, but she never complains and does all she can to help (sets the table, gathers the towels for laundry day, closes all the curtains at night and opens them in the morning). I tell myself “This is a whisper in time”
All the best to you and your Mom. Hope you can continue to hold her hand down this “darkened” path she’s walking, and that she knows, in her heart, she’s not walking alone. None of wants to walk this last path alone…
Here's a sample of Alzheimer's care that Visiting Angels can offer, use this info to Google what they offer in your part of the country and then ask about daycare or special classes for the blind. It might be a miracle, but you could ask Visiting Angels if any of their employees have experience with the visually impaired:
https://www.visitingangels.com/seattle/alzheimers-services?vs_key=fwABAVxwByEoVQDX&gclid=Cj0KCQiA_P6dBhD1ARIsAAGI7HDu1wIC1sJQmQSjs7ur2WYLetrFHinIXG-6_ZJksblCiK7y4IpFX70aAhBjEALw_wcB t Services for the blind (perhaps they can offer an occupational therapist to help you organize your home so that she can be more comfortable and stable):
While I have not personally experienced this, I suggest that you get as many "in home" services as possible to both assist her with staying physically agile, safe and, emotionally affirmed and cared for. These may come in the form of in home physical therapy, occupational therapy and, in home assistants for presence, help with her daily physical needs ( bathing etc) reading to her, keeping her in conversation( stimulating and acknowledging her dignity and respect for her) etc etc. These services can also help you greatly. Also be sure that she is receiving regular visits ( weekly at least) visits from her faith leader of choice or a community chaplain; You also can benefit from the support that they can provide you as the primary caregiver. Check with her insurance, other "grants" from agencies such as those for the blind or dementia related illnesses, or your local agency on aging for other financial assistance to help make these services available if needed. You may need her PCP to write an order for some of the technical services; if so, make the request.
Practice good self care ..... you will need it for the long haul. Best regards
My mom is 99 years old, blind due to macular degeneration and has dementia that surfaced 3 years ago when my dad passed. Before that, she was slowly losing her vision and I tried everything (they were both living at home with me) to entertain and stimulate her senses. Large puzzles, giant playing cards, etc. I did take her to Lighthouse for the Blind and they gave her a bright reading light, exercises to read. and free access to audio books. They also have e readers but that's when they told me they couldn't do anything else to help her. Cognitively, she could not concentrate long enough to learn how to read on a pad. I have learned that dementia also affects your vision (they get tunnel vision) so its a double whammy. I have finally made the tough decision to put my mom in Memory Care. I struggle with the guilt of putting my mom in a "home" and I fight each day with things that I am not happy about in the home. It's a tough road, I wish I could give you better advice. Since your mom is in the mild stage of dementia, do all you can while she still understands to keep her busy and engaged.
I've been taking care of my mother for sometime now and she is legally blind with Dementia and in the beginning the hardest part was for me to accept the fact that I couldn't fix it. I myself didn't receive a lot of education or medical help accept from the primary care doctor's and in the beginning the explanation was ok but as time went on that wasn't enough so I once again was left to figure certain things out on my own. So if you have any particular questions please feel free to ask. I do have some resources that your mom and you can benefit from. First of all try you local School for the Blind and also reach out to your local Department of Aging. One other program that has helped us is called Safe At Home for home modifications. They have put rails, removable shower head, swivel chair in our bathroom. My mom was having a hard time getting up from the furniture so they put in an electric recliner gave her a porta potty a hospital tray and I'm in the process of getting a ramp put outside to transport my mother a lot easier to and from appointments. I pray that the above information helps your mom and you🙏😇 I'm new to AgingCare so I'm not sure how it works as far as reaching back out to the same person, but if I can offer any thing else please feel free to reach out. Have a wonderful day and God bless you and your mom.
With a loved one who is blind, it is easier just to have them remain sedentary because you are afraid they will fall.
I'm writing because my concern is even though your loved one is blind they still need to receive some type of physical therapy. I know of a story where macular degeneration had taken it's toll (during the Pandemic) and the person went from a wheelchair to the bed and back again. Very little mobility.
Pneumonia can set in as well as the body atrophies and then the person can't receive any type of physical therapy--it is too far gone.
When I knew this person they were a size 12 now they wear 22. It's hard enough caring for the elderly but this is a double whammy. Of course the books on tape are ok but you can't have a loved one sit all day and listen to books on tape.
Physical therapy, occupational therapy, sunshine--Vitamin D the whole gambit. It's too easy just to say I don't want them to fall and transport them around in a wheelchair as what would be done in a facility because they don't want a high number of falls recorded on their annual reports. They don't have enough help to walk mother around daily.
You would have to hire outside help to basically walk or you would have to show up and make sure mother gets exercise so her body won't atrophy.
This would happen to anyone if you don't move around at any age.
Can you contact a local School for the Blind and ask them who do you contact for adults who are blind. There must be resources they work with as student's mature. Build your network but maybe have an assessment done. Call a Social Worker and see what they recommend.
This is quite common in the elderly. You also don't want mother to get UTI's from sitting--cranberry juice and water, white "cotton" briefs and a railing around the toilet as opposed to a booster seat on the toilet will all come in handy.
My Mom recently passed. She had age related macular degeneration, and had been slowly going blind for years. It was hard to watch as her world was slowly whittled away by blindness, disability and age. Mom was a trooper. She met most of the challenges head on l. She loved to read. She had to move from books to reading on a pad. When they no longer worked, she got audio books to listen to. We found and employed every modification that we could for her. Check Amazon for merchandise for seniors that are blind. Talk to your local chapter of the National Councik for the Blind for help. It’s so much harder with dementia, but sometimes the littlest adaptation can make her life easier. Check her hearing, and make sure her glasses are the right prescription. You have to get creative with this. Good luck!
She's been going blind steadily since 80, but gave up driving at 81. She was able to live alone in her house until this year, but the conditions were becoming unsanitary and I couldn't make the drive as easily anymore every few days. As she became more blind her short-term memory started to decline more quickly.
There are very few things she can do for herself because she is blind, so someone always has to be with her. However, financially we can't afford much help.
How recent is the loss of sight? If it is recent this can be difficult. And is she totally blind or very reduced vision? I did find a site : Wisconsin Counsel of the Blind and Visually Impaired. (wcblind.org) That might offer some ideas. Contact Alzheimer's Association for more info. They may have resources in your area.
When peripheral vision is lost it is quite another story. The person may still have good acuity but will not be able to move around without physical support. Balance and coordination are usually poor, and fear of falling can actually be paralyzing. She may give up walking or say she can't.
You need her eye doctor to be very clear about what she can and cannot see, and why. There are types of optic nerve degeneration that are genetic and possibly hereditary - you need to know about that too. There is also agnosia, when the patient isn't actually blind but doesn't know what they are seeing and where. There is no meaning and the patient says no when asked if they can see a specific target. Cortical blindness and agnosia are usually stroke related, which can also link to dementia.
If Mom's dementia is significant, don't waste time and money on special optical aids that she may not be able to learn to use. someone with very mild dementia may benefit greatly from a "Low Vision" evaluation and prescription. There are specialists around the country who are trained in this field. Although it can be expensive, this approach may keep her more functional for a few more years.
If she doesn't already, Mom will need full time support for her safety and to prevent anxiety exacerbating her dementia. Start making appropriate plans for her long term care.
Tips Related Specifically to Vision Loss
The degree to which a person with dementia is able to cope is likely to be influenced by loss of vision.
Research shows that there are changes in vision and visual processing that may be relevant with regard to a diagnosis of dementia.
Tips for making the environment accessible for persons with vision loss such as use of color and contrast may not work for persons with dementia.
You may need to proceed by trial and error to determine if tips and techniques for use by persons with vision loss will work with your relative.
Persons with vision loss may have learned to rely on auditory signals. Be aware that dementia may have altered perception of auditory signals.
Depth perception may also be altered.
Shiny flooring may be mistaken for water. Patterned floors are easily misinterpreted and may create fear and anxiety.
Keep furniture and other objects in familiar places
Use contrasting colors, such as a dark plate for serving mashed potatoes, a white toilet with black toilet seat or a color to identify a bathroom door
Help person identify people by telling others to say their names
Explain what is occurring, who is with them and where they are
Make sure person has regular eye checkups and tell the eye doctor that the individual has dementia.
When the person cannot identify an item correctly, it is best to avoid arguing with them, or saying too much. If possible, give the item to them and calmly explain its name and use.
Reduce clutter, changes in floor surfaces and busy patterns on floors and walls
Hydration and Bodily Functions
Make access to fluids convenient in order to prevent dehydration. Monitor liquid intake and avoid caffeine.
Provide a safe route to the toilet.
Make sure clothing is easy to take on and off. Replace difficult buttons and zippers with Velcro fasteners.
Limit fluids before bedtime. Consider using a bedside toilet during the night.
Remind your relative to go to the bathroom every few hours. Look for cues of needing to go such as tugging at clothing.
Install grab bars in the bathroom. Install a raised toilet seat if necessary.
Medication
Medication may alter thirst and body temperature. Discuss medication side effects with your relative’s doctor.
Keep medications in a secure place.
Enlist a home health care nurse or trusted friend or neighbor to administer medication if your relative is still able to live alone.
Medication minder alarms may cause agitation and confusion.
If your relative has swallowing difficulties, ask the pharmacist if the medication is available in liquid form, patch form or if the medication may be crushed and mixed with food.
Keep a medication log.
Mealtime
If your relative is afraid to sit down, place your hand on his/her backside and speak descriptively and reassuringly as in “the chair is right behind you and I’m going to hold your arm for support as you sit down.”
Make mealtime pleasant and minimize distractions.
Describe food on the plate at mealtime.
Encourage self feeding but cut food into bite size pieces to avoid choking.
Sit with the person while they eat as a precaution against choking.
Check food temperature before serving.
Prepare favorite foods to encourage good nutrition. Loss of sense of smell and taste may result in decreased appetite, weight loss and malnutrition.
Use finger foods when possible.
Serve only one or two foods at a time and limit utensils to one or two.
The Home Environment
Help person identify people by telling others to say their names
Explain what is occurring, who is with them and where they are
Make sure person has regular eye checkups and tell the eye doctor that the individual has dementia.
When the person cannot identify an item correctly, it is best to avoid arguing with them. If possible, give the item to them and calmly explain its name and use.
Reduce clutter
The beauty is the pills are dropped into a little cup, so there's no tearing opening packages.
She can still have her independence and you can have peace of mind that she's taking her meds.
Shonda
In the middle of the night, when Mom wakes up to use the bathroom, “Alexa, what time is it?” since she can’t see to read a clock.
Before bed, “Alexa, set an alarm for 8:00 a.m.” (and, to be on the safe side…”Alexa, set an alarm for 8:05 a.m.” 😉)
”Alexa, call Darlene”. Alexa, call David”. (You can program 10 names and their numbers into her call list). Alexa cannot call 911. The Life Alert lanyard she wears covers that base.
”Alexa, what’s the question of the day?”
”Alexa, let’s play Common Knowledge”.
“Alexa, tell me a football joke.”
”Alexa, let’s play Either/Or”
Such a super handy device that helps my mom feel connected. All she had to learn was to start her request with “ALEXA…” and that did take some practice. She’s got it now and Alexa is one of her “friends”. Can’t recommend it enough.
Family Feud is on the Game Show Network at 9 pm Central Time. It is a TV show she can listen to and enjoy without being able to see it. We just have to leave the TV turned to that station, with the volume set and a popcorn kernel taped to the mute button on the remote, so she can watch at night, if she desires. (And bubble wrap over the rest of the remote so she doesn’t accidentally turn it to another channel or off.) She is alone 4 nights a week and manages just fine for now. I stay from Friday morning thru Monday morning and we have a fun weekend.
I’ve learned that I can balance three days on, four days off. I’ve leaned into it and have come to enjoy it. Thankfully my brother and his girlfriend split up the other four days. It’s working for now.
Mom loves to have the newspaper read to her and we tackle the 7 Little Words puzzle. We try to anticipate what advice Dear Abby will give to that day’s question. She’s good at easy crossword puzzles if I say, “Three letters. The first letter is C. The clue is ‘a feline’”
Anytime I feel frustrated or defeated, I try to remember how frustrated and defeated my sweet mom must be, but she never complains and does all she can to help (sets the table, gathers the towels for laundry day, closes all the curtains at night and opens them in the morning). I tell myself “This is a whisper in time”
All the best to you and your Mom. Hope you can continue to hold her hand down this “darkened” path she’s walking, and that she knows, in her heart, she’s not walking alone. None of wants to walk this last path alone…
https://www.visitingangels.com/seattle/alzheimers-services?vs_key=fwABAVxwByEoVQDX&gclid=Cj0KCQiA_P6dBhD1ARIsAAGI7HDu1wIC1sJQmQSjs7ur2WYLetrFHinIXG-6_ZJksblCiK7y4IpFX70aAhBjEALw_wcB
t
Services for the blind (perhaps they can offer an occupational therapist to help you organize your home so that she can be more comfortable and stable):
http://www.blind.net/resources/organizations/organizations-for-the-blind.html
Practice good self care ..... you will need it for the long haul.
Best regards
With a loved one who is blind, it is easier just to have them remain sedentary because you are afraid they will fall.
I'm writing because my concern is even though your loved one is blind they still need to receive some type of physical therapy. I know of a story where macular degeneration had taken it's toll (during the Pandemic) and the person went from a wheelchair to the bed and back again. Very little mobility.
Pneumonia can set in as well as the body atrophies and then the person can't receive any type of physical therapy--it is too far gone.
When I knew this person they were a size 12 now they wear 22. It's hard enough caring for the elderly but this is a double whammy. Of course the books on tape are ok but you can't have a loved one sit all day and listen to books on tape.
Physical therapy, occupational therapy, sunshine--Vitamin D the whole gambit. It's too easy just to say I don't want them to fall and transport them around in a wheelchair as what would be done in a facility because they don't want a high number of falls recorded on their annual reports. They don't have enough help to walk mother around daily.
You would have to hire outside help to basically walk or you would have to show up and make sure mother gets exercise so her body won't atrophy.
This would happen to anyone if you don't move around at any age.
Can you contact a local School for the Blind and ask them who do you contact for adults who are blind. There must be resources they work with as student's mature. Build your network but maybe have an assessment done. Call a Social Worker and see what they recommend.
This is quite common in the elderly. You also don't want mother to get UTI's from sitting--cranberry juice and water, white "cotton" briefs and a railing around the toilet as opposed to a booster seat on the toilet will all come in handy.
You are in my prayers...
If it is recent this can be difficult.
And is she totally blind or very reduced vision?
I did find a site : Wisconsin Counsel of the Blind and Visually Impaired. (wcblind.org)
That might offer some ideas.
Contact Alzheimer's Association for more info. They may have resources in your area.
What parts of caregiving are you struggling with?