Your state association for the Blind may have resources to help your Dad. (I spoke with the NYS agency about what could help my father. But, let it be said, he didn’t want “help” from an organization for the blind.)
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Has he tried wearing an eye patch on 1 eye to help with the double vision? He can alternate which eye he covers to help with eye strain.
That’s lovely that you were able to do that for him. My FIL lived 7 hours away in a different state so reading to him was not an option. In addition, my FIL would have been mortified if one of his son read to him.
Years ago (many, many years ago) my grandmother used to get cassettes from the assn for the blind after macular degeneration robbed her of the ability to read. They also sent the machine to play them. I’m pretty sure, but not positive, she could request certain things be recorded (in her case The New Yorker) though as I write that it seems implausible.
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I know a retired attorney who volunteers to read and record the newspaper & perhaps other things for the library of the blind. I know many people who enjoy audiobooks, especially in the car and on long commutes.
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Local and Preferred have started thinking about Mom’s continued gradual decline and whether there is going to be a need to move her to a facility more appropriate for memory issues. Problem is, there is only one, there, and it puts her not inside a 30 minute drive for either of them.
So I scheduled a tour in my small city, of the best regarded of the 3 highly rated memory care dedicated units here. I want to have a basis for comparison, told my sibs, and know it is unlikely we will move her here (where she would be 6 minutes from my front door)
I felt guilty. Pushy. Over reactive. Not in my lane. Then this morning we got an email from the admin at Mom’s AL:
"This morning at 5am we had a fire drill. Unfortunately, it did scare your mom, and she fell out of bed. She has a large bruise on her left wrist. She can move her wrist. Also, a bruise starting and rug burn on her forehead. I did let [her pcp] know of this incident.
Would anyone be able to bring in body pillows we can put under her fitted sheet at bedtime? I think it wouldn’t hurt to try this and hopefully prevent a fall throughout the night."
Feeling less guilty.
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I think we may have turned a corner for the good with my mom. Her attitude is sooo much better, and she is almost back to herself. Her voice has come back on line and while very raspy and sometimes hard to hear, she can communicate pretty well, supplementing with her writing.
Her cough and secretions clearing is much better, indeed removing of the trach helped with the production of secretions, and while she says the cough hurts now, she doesn’t cough as much. It feels like after a bought of bronchitis, just painful/sore from all the coughing. She has been cleared to go to regular rehab! They are basically waiting for the new facility to approve her and have a bed open up. She can tolerate three hours a day of therapy, which was one of the threshold requirements, but that does not mean she can do much at all. She can barely stand, only for a few seconds, and with help. But that counts toward the three hours. She still has a catheter and cannot go to the commode yet, which is very frustrating for her. She also has double vision and has been wearing an eye patch for a few weeks, which helps, and we have not even asked the doctors about her prognosis for that, so we have no idea if this is permanent or if it will eventually fix itself. She can see and read fine with the eye patch, I went so far as to buy designer eye patches so she can start choosing colors.
I feel like she has stopped digging a hole, and has started to climb out of the hole, but there is still a pretty big mountain left to get back to where she was. The nurse told us it was going to take 3 days for every day she was in bed to get back to normal. So that means about three months of rehab. I am sure she will only be in the facility a few weeks, so some of that will finish at home but it is indeed a relief to have her out of the death spiral.
She also was very unhappy the last few months living at home with my father’s 24-7 caretakers. I suspect that will have to be addressed, she may not want to go back home, and maybe independent living/assisted living may be a better fit for her. She still writes loves notes to my dad though so maybe she will be better able to balance her resentment of the strangers in her home to be around him. They have been married for 55 years, so her living apart from him is actually probably not a realistic option.
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You have nothing to feel guilty about. IMO this is your lane!
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Check it out soon. Are you only continually patching the same eye? Or alternating?
They make prism glasses and even stickers placed on your regular glasses to help with double vision–much better for your eyes.
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I love this update!!!
There are so many parallels between our situations, and reading this gives me some hope.
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We’re certain now that husband’s aunt & uncle should probably no longer be driving. And definitely shouldn’t be driving on road trips…
I checked in via text msg w/Aunt yesterday evening. Here’s what we learned:
- What is normally a 5.5-6 hr drive took them almost 12 hr. So they left our house at 6:30 pm and got to their destination at 5:40 am. Allegedly with only stopping for gas and bathroom breaks.
- …so this means, essentially, that they were probably driving, at best, 40 mph most of the time. More likely 35 mph. On a major freeway with a 65-75 mph speed limit.
- Uncle’s CPAP mask that was allegedly left at their place? It was in their car the entire time. In a grocery bag.
- Uncle was so manic about the CPAP mask that he stayed up all night the night AFTER they arrived home…because he was so wound up about it all.
- Aunt, once again, reminded us of how she can’t handle the AZ hot weather and she DID her time in AZ when she was a kid for 4 yr, thank you very much, and she’s glad that WE like it here but she could NOT do that weather. For the record, we’ve been hearing this story from her literally every time we see them for the past 24 years.
3 yr ago when my MIL passed away in early September (and it was still warm then), we had to listen to 4 days of constant, “You don’t understand…Aunt is very prone to heat issues. She could die from the heat.”
Before anybody suggests that we do stuff like make anonymous reports to their local DMV or anything, we are not going to do that. We’re staying out of that circus.
Meanwhile, we learned from SIL & BIL that Uncle told them (again) that going to my daughter’s memorial service was really hard for Aunt because she had a miscarriage many years ago. Thankfully, Aunt & Uncle didn’t unload about that to us. We’ve known about Aunt’s miscarriage for a very very long time. We understand that it’s devastating. But at the moment, I don’t have the spoons left to care about Aunt’s miscarriage from, like, 40+ years ago.
I’m pretty sure this past weekend is the last time they’ll ever be traveling to our state. Their current living situation(s) are not practical or sustainable given their growing number of health problems. They won’t listen to reason, are stubborn, and are determined to do what they want.
(thanks for listening to me complain about Husband’s elderly relatives, they are a handful)
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Our family has progressed to the next stage of caregiving—the father-in-law is currently in “rehab” (a nursing home) for the first time. We’re pretty confident they’ll let him go home in a week at latest. I’m just posting to vent, because I know that the best advice for me and my husband is, “say nothing, stay out of it.” My mother-in-law is completely enabling my f-in-law’s fantasy life in which he thinks his heart failure will be improved and he will go back to walking. Meanwhile, the nursing home is teaching him to transfer himself into a wheelchair because if he continues to try to walk places, he’s just going to fall down regularly until he breaks something. Even more interestingly, he has hidden from us (until my husband saw his medical sheet after being put on the care team) that he has celiac disease. He eats gluten without restraint and always has. He tried to claim he’d not been diagnosed with it and “didn’t know why that was on the sheet.” But he tried to lie about not having heart failure just weeks ago! He has passed cognitive tests–so please don’t suggest he’s losing it! 
He and m-in-law are acting so irrational and crazy. What really gets me is that my daughter was hospitalized with anemia and intestinal hemorrhage less than a year ago. Not a peep about celiac out of this selfish guy. He has a Ph.D. and knows perfectly well how people should behave. Other people, right? My husband and daughter are going to get the celiac test. But f-in-law still won’t admit it, and we aren’t going to even try to talk about it. Argh! What do people think life is for? It’s baffling.
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Just gotta say a couple things got put on my mom’s chart which were entirely untrue and no matter how much she tried to correct them it never went away.
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I won’t tell you all the other details–I’ll just record for public amusement our endurance of years of seismic explosions of public farts after dinner–with barely an apology, let alone an explanation. 
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ugh, the driving dilemma is the hardest. My father should have stopped driving a solid 2 years before he actually did. He was constantly getting lost, driving 25 mph on highways….when it progressed to 3-4 fender benders in the space of 6 weeks (finally totaling his car), he conceded to stop. I had a hard enough time broaching the conversation with him as his daughter, so I can certainly understand how as a niece-in-law it is not something you care to get involved with.
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My FIL is legendary for gate-keeping important health information (like, it would have been nice to know that he was diagnosed with Gaucher disease before we decided to have kids, as just one example). It is so selfish and infuriating.
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Don’t worry. Not until my D came down with breast cancer did we know the extent of my in laws family history with cancer. You know, when we had to all do a family tree for genetic testing! My immediate family are the only ones who have done genetic testing even though my D and H have a genetic mutation. They could test without charge, they just have declined to do so.
My mil also never had my fil tested for Parkinson’s because their PCP told them he would have to stop driving if they went to the neurologist. That is the story from her. When he was ill and going to skilled nursing, the prognosis was Parkinson’s and not a stroke. Mil said she guessed she was in denial. Before that she yelled at my fil that he wasn’t trying hard enough.
Denial is very powerful. And very human.
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Before dad died, we asked and they tested him for the genetic form of COPD, since he had chronic bronchitis. Turned out negative, but it was good to have the info, in case it helped any of the rest of us. It’s irksome and selfish when relatives don’t share medical information that COULD help other relatives. I’m sorry for folks who have this issue. We know most of the medical history of our relatives and thankfully it has been pretty good.
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I wish there was a magical phrase, and an indicator warning light would go off when the ability to be rational is about to leave the building.
I am fighting this fight with a very judgmental woman who could always see in others when they stayed longer in their big house than they should, and/or refused help, and has become that person. Maybe you should start making and leaving lists of all the things people are doing for them in their ‘independent’ life, (a white board to help the magical fairies all stay organized?) and realization will start to trickle in.
Someone advised me to enlist the help of the primary care physician, so have a video appointment next week. Expect it to somehow get cancelled, and suspect he is in the dark as to her true condition, so not very hopeful.
Best of luck, it is going to be a process!
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