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My wife was diagnosed with early onset dementia about 2 years ago. I have been caring for her at our home until Nov 2020 when we moved into an assisted living retirement community with the intention of moving her into their memory care facility when I am no longer able to care for her. I am now having second thoughts as her glaucoma has gotten to the point where she can no longer see except for a narrow band directly in front of her. I am now thinking because of her slowly losing eyesight that memory care will not be what she needs. I would like some guidance as to where she will get the best care as a person with dementia and glaucoma. Any direction will be greatly appreciated. Thank You, Fred.

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If you will all indulge me, I would like to explain vision loss from glaucoma:

Try covering one eye and holding the tube from a paper towel roll over the other eye. That is what you can see.

Can you walk about your home like this? Can you find and read a newspaper? How will you find your toothbrush if it is moved, or you absentmindedly put in in the medicine cupboard instead of leaving in the holder by the sink?

Now imagine that tube shrinking and cover the end with waxed paper. That is what vision loss from glaucoma is like.

Now take your glasses and cut a nickel-sized piece of black construction paper and put it over the center, covering your eye. If you move your head you can see around it but things are blurry. That black spot will grow, and eventually most of your lens will be black but you will still be able to see around the glasses. That is what AMD is like. It is devastating to be sure, but not as debilitating. You can't see any detail but you can still see where things are. Also, AMD does not cause total blindness unless there are cormorbidities.
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Llamalover47 Apr 2021
DrBenshir: That is very much accurate on dry Macular Degeneration and wet Macular Degeneration about them being non life threatening.
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Glaucoma is a slow process unless she has angle closure glaucoma and has had precipitous loss of sight. You need a better glaucoma specialist STAT! Perserving residual sight is critical to your wife having any functionality. Dementia is a tremendous impediment to learning the technology needed to support a blind person. FYI this is much worse than AMD, which causes loss of acuity but leaves you with enough peripheral vision that you can ambulate and perform many ADLs in a familiar environment.

Fred, whatever you decide please make sure your wife will be comfortable with and trust her caregivers, since she will be completely dependent. There will be unseen hands touching her and even feeding her at some point. Gentleness, compassion and affection will be needed as much as caregiving skills. Your wife will be their "baby" and you want her treated and cared for as the delicate dependent she will be.
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Imho, an individual who is sight impaired from Glaucoma (low vision leading to eventual complete loss) may have been able to adapt to the slow loss IF they did were of lucid mind. Even so, your wife MAY have learned some adaptation over the years (think number of steps to her restroom/toileting, etc.) My mother was classified as "legally blind" from wet Macular Degeneration. The legally blind classification meant that she had some vision. Even so, she was able to live by herself in her own home as she adapted to her low vision. In addition, she utilized the COB (Commissioner of the Blind) to acquire a magnifier machine (not a hand held device), assists for making hot tea and other assistance. Contact your local Commissioner of the Blind as they are an extremely valuable resource.
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I think for her own safety she should be placed into a caring facility. There is too much risk to keep her at home and impact your life any longer. I have a feeling that with the glaucoma a skilled nursing home would be the best choice. Good luck.
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You have several options. If she is placed in memory care unit with smaller footprint and less people, she may be able to navigate well. She may also do well in a private care facility (like a house converted into a care home) if they are trained to handle advancing dementia. If she is manageable in the evenings, she may do well in an adult day program with a consistent routine and a sitter at night (option my MIL has).

Please research the options available in your community with an eye to the types of care each provides and the cost. Also talk to your insurance provider about any coverage for these costs.
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If at all possible, she would be better off in her own home around familiar surroundings where she will be happy, feel loved and feel safe.

If you cab arrange it, bring her home and hire help
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Geaton777 Apr 2021
Bev, they are both in an AL facility. That is their home now.
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Speak with your assisted living facility. They may be able to handle your wife's situation. Usually the next step after memory care is skilled nursing, but that may not be necessary. Your facility may have occupational rehabilitation facilities to teach her how to cope with blindness. But with my mother, who has advanced dementia, she has difficulty learning new things. My mother also has glaucoma and she takes medications for it. She is not communicative, so it's difficult to know how much she is seeing. She stopped wearing her glasses about a year ago.
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It sounds like you are doing everything right. Ask her Dr for his opinion on MC vs SNF.
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My godmother was in a facility with ALZ and blind from macular degeneration. It’s the safest place to be.
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One other thought regarding the glaucoma. Before you make your decision, perhaps you can find out if surgery, as opposed to or in addition medical treatment, (drops) would be an option for your wife. Although medical treatment might still be needed, it might be less--and also slow down the progression of the glaucoma. Normally, I'd expect this suggestion to come from the ophthalmologist if there were any possibility of surgery, but he/she could have thought it wasn't worth doing because of your wife's dementia. On the other hand, even if drops and oral medication are needed several times a day, a memory care should be able to handle that without problem.
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I think you need to talk it over with her Doctor. The glaucoma and reduction in sight is going to be frightening to her, on top of the confusion of dementia. I suspect your current plan is the correct one, managing her dementia care will include dealing with her sight. Managing her sight in care will not deal with her dementia.
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My mother has macular degeneration and is blind for all intents and purposes. She's in memory care and receives excellent care, because dementia is the health issue I chose to be the most important one to treat. Her caregivers have seen it all, so vision issues are something they're accustomed to dealing with.

The most important thing I've done with my own mother is to write out a short biography of her that also includes information about her health issues and how to deal with them on a practical level. I asked the administrator of her place to make sure everyone who deals with my mom -- from director to housekeepers -- read it and understand what she needs when dealing with her. She is also nearly deaf and won't wear her hearing aids any longer, so she's easily startled. It's important that anyone who is approaching her not suddenly touch her without making their presence known first.

The staff at your wife's place will be perfectly capable of handling her issues, but it's vital that you inform them of her special needs and what she requires to make life easier for her.

At some point we loved ones get to a point where you have to decide which issue is the most important one to work with in order to ensure quality of life. My mother has dementia, heart issues, and vision and hearing issues, among others. None of them will get better, so two years ago I moved Mom from a skilled nursing facility that treated her like she was sick to a memory care where she's treated like the intelligent, funny woman she's always been who also happens to have some other health issues. It was the best decision I ever made, and I think you need to decide what treatment will best help your wife to enjoy the most quality of life.

I'd also check with the Braille Institute (BrailleInstitute.org) or the American Foundation for the Blind (afb.org) to get ideas for ways to help her. Before the dementia got too bad, we got my mother a Merlin reading machine so she could read as long as possible, a large button phone from the phone company (they're free under the ADA), audiobooks and a player from the Library of Congress (also free), and large print calendars to allow her to keep track of the days.
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