When I started this blog I wanted it to be among other things a place where those of you caring for elderly parents could vent, talk about what it is like to care for a parent, share thoughts and ideas, make it kind of a support group for caregivers, and last but not least ask others for advice and to share information.
Currently one of my good friends and a favorite poster here, Lady DR., is going through a very traumatic situation with her mom and she needs our help. Both she and I want to know if anyone of you out there, those that are reading but have not posted, new folks to the blog, or those of you that have posted before, have ever dealt with an elderly parent facing going blind. Lady DR would like to talk to someone that has gone through the experience.
Here is DR’s situation. Her mom is losing her eyesight with her right eye failing the fastest. The Mom is taking injections that may or may not work. While the doctor is positive, he has given neither DR nor her mother any guarantees. The doctor has also referred DR to The Commission on The Blind. The Doctor and The Commission on The Blind have suggested to DR that they need to start planning NOW. DR’s mom kind of refuses to talk about the possibility of losing her eyesight, which not only concerns DR but also makes it very hard to plan. In addition, the vision issue has blindsided DR because everyone thought it was solved. It becomes even more of an emotional situation when DR recalls that her mom has told her several times that losing her sight is one of her major fears.
I cannot imagine how I would feel if my mom were losing her eyesight. I know I would be both frightened and lost. I would not know which direction to turn.
OK, everyone chime in here. If you have advice and don’t feel comfortable posting on the blog email me at williamjdahn@aol.com and I will forward your email to DR. Here are the questions:
1. Have you ever dealt with a parent or anyone losing their eyesight and if so do you have any
advice for DR?
2. Have you known anyone that has dealt with a relative that was losing their eyesight and if so,
how did they handle it?
3. Do you have any words of wisdom for DR?
4. Know of any eyesight support groups for people dealing with relatives losing their Eyesight?
5. Even if you haven’t dealt with a relative losing their eyesight do you have any words of
wisdom for Dr.
First thank you Lady DR for allowing me to post this on my blog for feedback and discussion. And thank all of you in advance for your advice and compassion.
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28 comments:
Bill, thank you so much for posting my questions here!
Just a couple notes to clarify. Mom has had macular degeneration for years, wet in left, dry in right. The left eye has been 20/100 for some time, but the right has held steady at 20/30 since the cataract surgery 4 years ago. Monday it was 20/60 and they found the vessels in the right eye are bleeding and the left eye has also started bleeding again she's had the injections in it before). Her vision is basically dependent on the right eye. Those of you familiar with MD know they can give no guarantee or prognosis. If the injections work, they may be able to bring the vision back up some or at least stabalize it where it is. However, once deterioration starts, there's no way of knowing what the progression will be or how quickly it may occur. Mom may be good for several years, with injections (please, God), or we could see rapid failure. Dr. R is basically saying hope for the best, plan for the not-so-good.
The concern is what happens if Mom can no longer read her med labels or fill her insulin syringe, among other things. She refuses, so far, to see an elder law atty to discuss her options, possible programs, home health care, assisted living.
Any suggestions, any experience will be much appreciated. As Bill said, this blind-sided me/us, as it was totally unexpected. I think I'm still absorbing it.
Hi DR
Thank you for the clarifications. One of the caregivers for dad had M.D. and it went fairly slowly, took maybe three years before it hit full force.
My heart goes out to you and yours!
Bill
DR, I'm so sorry this is happening to your mom, and by extension, to you. Since we've talked elsewhere, you know I have nothing to offer beyond the special vitamin concoction, which may or may not slow the process.
One thing I think I would do if faced with this, and mom still fairly mentally agile, would be to get her a small CD player and a few books on CD that would be of interest to her. Work with her on learning the various buttons while she can still see, so if worse comes to worst, she'll be familiar with it. Same for a radio. Get one with pushbuttons and set them for her preferred stations so that she can learn the buttons before she needs to rely on them solely by touch. One of the residents where my mom lives is functionally blind, and she depends on her little radio and is lost when the batteries run down until someone replaces them. I think it's company for her, and in fact, radio serves that purpose for me a lot of the time when I'm not reading or doing something that requires concentration. If her hearing is impaired, work with her on using earphones.
I'm sorry that all I can think of is worst-case preparation stuff. I wish I had something more hopeful to offer, and I do hope none of this turns out to be necessary.
Lady dr, I'm so sorry about your mom. We've not experienced anything like that, but I know how I'd feel about losing my sight. My 88-year-old aunt has lost most of her hearing, and I know how frustrating that is for her. Fortunately, she moved to a retirement apartment complex 5-6 years ago, and is very happy there.
Her not being willing to acknowledge the problem makes it ever so much harder for you.
My friend's mother had resisted leaving her home, although she obviously needed to be in some sort of assisted living facility. Finally she had a medical problem that required her to be in the hospital. And after that there was no possibility of her returning to her home. And, surprisingly, she seemed to accept the situation quite willingly, and has never even wanted to return to her old home.
If your mother is a reader, pat's idea of recorded books is great. I know that's something I were facing losing my sight.
In any case, Dear Bill has made this a forum for you, and you can come here to vent, if nothing else.
Hugs!
Here are some easy and cheap suggestions on everyday needs based upon my experience with serious optic neuritis (as part of MS and from which I have largely recovered). Some depend on residual vision.
(1) As long as your mother can remember which med is taken when and can perceive color, large bright colors are your friend. Buy some wild nail polish colors. Paint the meds container in colors based on whatever system works. (When you take it, which med it is, etc.)
(2) For oven temps and things, use the same polish and make large dots. Blue could be 350 degrees for example and green could be 375.
(3) Textures (as in fabric) also can be used in some places. A programmable phone can have a button covered in velvet, for example, and that button can be programmed to call 911.
(4) If she is using money on her own, fold her bills differently. Turn down one corner of $1 bills, two corners of $5 bills, etc.
(5) For the insulin syringe, you might be able to use distance in some way. You might have a "guide" and require that the plunger be pulled back to match the "guide" to the space from syringe to end of plunger. (But I'm not sure about this one. You might have to experiment and it does not solve the problem of being sure there is sufficient liquid in there unless someone else checked vials regularly.)
What other types of issues are you thinking about right now with the vision?
Thanks, again, Bill. Mom's left eye went quickly, which is typical of wet MD. As I said, her right eye has been good until now. As I understand it (Dr. R is very good at educating us), wet moves much more quickly than dry, which can remain stable for years. So, the fact the right has now gone wet is the issue.
Pat, thnks for the suggestions. Mom is taking the recommended vitamins and supplements, as prescribed by the specialist and her opthomalogist. I'll try aging to encourage her to use books on tape. Our library has a large selection and Martha said the CoB also has a large library. So long as she can watch her sports on the big screen TV and read her country music magazine with a magnifying glass, she doesn't seem to miss reading, like she first did, but I've put that on my list, as an option to promote. The CoB will help with things like large button phones and marking stoves and other items in the house and with magnifying tools, so as long as she has some sight, she can maybe continue quilting for the grandkids. They have a waiting list and we're already on it, altho Mom's not yet aware of this. It's hard to deal with someone who doesn't want to think about needing such considerations.
Mary Z, thanks for the good thoughts. I'm sincerely hoping Dr. R will be able to find a way to introduce practicalities, as he said he'd try to do. I'd as soon not have to do a hospital visit to accomplish the purpose (wry s), particularly as I'd like Mom to have some say in where she wants to go and what she wants for amenities. One reason we need to see what benefits are available to supplement her limited income and how assets are treated and so forth. Maybe it's my management analyst background from a previous lifetime, but I do much better when I have facts and figures and contingency plans in place before they're needed. Had to do that once and it was not a positive experience.
Thank you all and I hope we'll hear from others here. I suspect one of the things many of us are dealing with -- whether posting or lurking -- is the issue of getting our parents to at least think about/talk about contingencies. Often equally true of long distance sibs or those in denial. It's all part of the issue.
LadyDr, I am so sorry to hear of this new concern with your mother. Even though my grandmother went blind it was due to other reasons and was back in the early 80's and she was in her late 90's and so nothing was done. Even though she felt she did well in the situation, my Aunt(her daughter and caregiver)had to live with all the problems that came with it. Eventually, she went to a Nursing home, which was devasting for her. So I am sorry I don't have much advice for you on that subject.
I will pray your mother's eye will stabilize and it will be good for several years. Hopefully too you can do some of the things I have read here so far to prepare her and yourself.
God Bless
I missed most of the chat in the "other place," so I'll post here. Walt's mother has lost her sight to macular degeneration. For her, it hasn't had the practical problems that you are concerned about for your mom because she was already in an assisted living facility when she lost her sight (she has some peripheral vision, but the care givers take care of giving her her meds).
It has been great frustration for ME because she lives very near Lighthouse for the Blind and I suggested many times to her kids that they visit there and get information on assistance for her, which they resisted doing until it was too late. Many of the things Ellen suggested are things I've suggested as well, all ignored. I think they were in denial about how bad it really was until it was too late.
Kudos to you for facing this head on while there is still time to get things in place for when the inevitable time comes.
If this eye situation with me turns out to be something more complicated than cataracts, you can be sure I will be at the nearest facility for help for the blind while I still have vision left.
Pat
CD's are a great idea!
Bill
Mary Z
Thanks for chiming in! I've been missing you. Hope things are good with you and John.
Bill
Hi Ellen
You are amazing! Those are absolutly great suggestions!
Bill
Dona
Thank you also for jumping in.
I'm sorry your grandmother went blind no matter the reason or the age it had to be hell to deal with!
Bill
Hi Bev
You are a great one to help DR here with both your own problems and you mother in law's problems.
First, I am praying that yourm eye situation is just cataracts or even something less! You deserve better after all that you have been through.
Second, I am really glad Walt's mother was in assisted living while she lost her eyesight but think it is tragic that they waited so long to seek help!
Since DR is so willing to talk about and face the problem head on, I wanted her to do it here.
Hi DR
No thanks required. You are helping us by bringing this out in the open.
I wonder if you shouldn't now investigate guide dogs. Check your local Lions Club the usually can refer you to an organization that has the dogs.
Bill
One more thing, that Bev mentioned about her MIL... it is my understanding that usually with AMD, you do retain some degree of peripheral vision, which would certainly help you get around, but would not be any help with fine focus work like reading. It's something to ask the doctor about and not take my word, but I do think you can expect enough vision to walk around, however carefully.
Hi Pat
Good pickup from Bev. I hadn't noticed that comment!
Bill
Lady DR... I am also saddened to hear about the new issues with your Mom. My Mother is loosing part of her eyesight, but it's cataracts she refuses to have removed. So, from things she says, I'm guessing her vision is mostly cloudy or the day seems darker than it is. She'll make comments about me reading in the dark when I'm reading the newspaper and the ceiling light is on. So, not the same issue at all.
A suggestion for meds: We prefill one of the Sunday thru Saturday / Morning, Noon, Night and Evening type of pill containers for Mom. The caretaker now gives them to her, but before that, having the meds prepared that way made it easier for her to "remember" what she had taken for the day. Most of them have raised letters, so I would think one could count over Sunday being column 1, monday column 2, etc.. and the raised letters for time of day.
Would her insulin be availble in an epi-pen? One of those could be used easily as the number of clicks and the rotation of the plunger determine the dosage.
My father's mother lost her eyesight when she was still living alone. This became a major concern when she laid a kitchen towel down on the stove, and the gas flame was burning. She could tell there was a fire, but was helpless in putting it out. Luckily, a neighbor could see the flames through the kitchen window when he walked by. Her sons moved her to assisted living then. She didn't want to do that, but gave it and ended up enjoying the new living arangement and friends she made.
From what I understand, the Commission for the Blind here has support groups, so Goggle that agency in your area. Hopefully they'll have something!! IF not, check with the eye doctor, they should have some sort of connection you could look into.
Know I'm sending you strength and your Mom healing wave lengts. My heart goes out to you... (( hugs ))
Hi Kaye
Good suggestions. Mom uses one of those types of pill boxes also. We get them at The Dollar Tree for a buck.
I'm sorry your mom is losing her eyesight and wish she would consider cataract surgery. I can't help but worry if the clouded vision doesn't make her more of a risk to fall.
They also now have insulin pumps that automatically pump insulin into the body at a pre-set level, the doctor has to prescribe it and you have to get approval from the insurance company ahead of time but it would be a God send for someone going blind.
Wow what a scary experience for your father's mother! That definitely would have been a motivation to move into assisted living.
Thanks, Kaye.
Ellen, thanks for some great suggestions. I'm saving these. Right now, it's not an issue, but that could change in 6 weeks to 6 years. As of today, she can read everything, sometimes with the help of a magnifying glass, but it would be good to get her accustomed to color coding and touch, which was also suggested by the lady at the Comm on the Blind. I keep thinking I'm on top of things (koff), then something like this comes along and I'm standing in my yard, yelling, "Help!" And thank goodness all of you step forward.
Dona, thank you for your prayers and your caring. I guess one of the frustrations is not having any idea where this may go and no "plan B" so to speak. You know, it's strange, but I can easily accept Mom in assisted living, with some degree of independence and space, but not in a nursing home, where she was confined to small quarters and little privacy. My main consideration is continuing her independence, whether at home or assisted living, for as long as possible and that's going to require some cooperation on her part. I'm not sure she realizes that as yet.
Bev, I'd forgotten you m-i-l lost her sight to MD. And your comment that she was already in assisted living adds to my feeling that this is something we need to look at NOW, even though, like Walt's sibs, mine refuse to believe this is something we need to even consider and Mom keeps saying it's not necessary, for various reasons (which are a whole 'nother subject of discussion). I really have two major concerns -- her meds and her insulin requirements, especially since she's been running high the last few weeks and way high the last few days and I've had to go down and fill the syringes a time or so. I have hopes that home health care might deal with these issues and let her stay in the apt a bit longer, but the other side of the coin is, as you and others say -- might be better for her to be comfortably placed in assisted living before we reach that point. Please hold good thoughts that Dr. R has the opportunity to talk "straight" to Mom and get her to at least consider some options, while she still has sight. We won't know for another three weeks where the right eye is going, but my gut is telling me we can't continue to dawdle on this, as we've been doing. If I've no support from my sibs (so far they haven't even responded by email or phone to my last six weekly updates or the two msgs about what's going on), I'm going to be going it on my own. I'm like you -- tell me I've a potential problem and I want answers and contingencies. Unfortunately I seem to be a changling in that respect. Some days I suspect I was adopted. Good point on the peripheral vision. If she could still get around with her walker (mobility and diabetes are right up there with vision), it would be helpful and if she was in assisted living, make a big difference.
For you, my dear, I'm hoping cataract surgery is the answer. I had both eyes done a year ago and the whole world looks different!
Bill, I like the idea of a dog or guide dog, but Mom's mobility is such,,, at this point, she wouldn't be able to take it out for walks or even "duty jobs" unfortunately. Personally, I think she'd benefit from a furry companion and they are allowed at her apartment, but she's thus far refused to consider it. Since we're Good Sam members, we might be eligible for one of the dogs they train for the blind and deaf, which would be another resource besides the Lions.
Guys/Gals, I can't tell you how much it helps to hear from all of you and to have so many positive suggestions to consider and so much support, encouragement and prayers. I keep telling myself this isn't a panic situation, but I also know we've been putting off contingency plans for too long, given the heart issues, diabetic complications, mobility issues. The MD is sort of the kicker. I'll keep checking back.
Bless each and every one of you!
Hi DR and everyone else.
Just wanted to mention to all of you that if you have anything going on in your life that you need help with or would like some input on I would be happy to make a day "feature" to get input for the readers and posters of the blog. It doesn't have to do with eldercare either, it can be anything.
DR, I am not going to post an entry today because I want to leave your entry up for another day.
We have had a great response and got some outstanding suggestions. Even though we got both already I guessing there may be more out there!
DR nursing homes are nightmares and can often be a dangerous place to put our relatives. In Oregon there hasn't been one nursing home that is complaint free. Part of the problem is that State and Federal laws only require nursing homes to have one nurse for every 25 patients which results in really bad care. Assisted living centers are usually really well kept places with caring staffs that only results in a lot of complaints from the residents about food, not being home, etc. but no complaints about care. No wonder you are comfortable with an assisted living center and not a nursing home.
I am going throw out a term here. Tri-level facility. A tri-level facility is one that offers independent living, then assisted living, and then full care. So once you mom moves in she won't ever have to move again.
DR, with the right guide dog, the dog would take her for walks. This assistance dogs do many things. They can handle a wheelchair, hear for a deaf owner, predict seizures and sugar lows. They are amazing. Don't let your mom not be able to take the dog for the walk hold you back.
My prayers are with you and yours!
Bill
I hear you on the nursing homes, Bill. When Mom came out of bypass surgery, I had 24 hours to find a rehab center. I selected one on the hospital's list, after a tour and interview of the place. Unfortunately, Mom didn't go into the wing I viewed, but the one mostly populated with Alzheimer's patients and I discovered she was being kept severly sedated. That's the one we hauled her out of in an ambulance after 36 hours.
NHC was an excellent facility, but it wasn't assisted living, it was shared rooms, shared TV, no privacy, etc.
Assisted living would be my choice, if finances can be managed, and moving her before she loses her site. The tri-leve facilities sound ideal, since she's pretty much capable of being on her own now, but that could change at any time. Again, finances are going to be an issue and we have to get her to the point of discussing that.
Good point on the guide dog. I don't know if she'll buy off on it, but it's certainly something I'm going to keep in mind, particularly if the time comes when vision fails and the guide dog can work with someone using a walker, especially if we can reach the point where Mom can stay in the apartment with home health care as needed.
You've all been so helpful! Thank you. I hope at some point I can help answer questions for others.
Just to chime in with one more heartless comment, DR. When the time comes for you to discuss this at length with your mom, lean heavily on the fact of all the things you currently do for her and what might happen if you were incapacitated. Or you could follow my lead and just break your ankle, which might show her how much help she needs. She really should go into assisted living at this point, and I hope you can convince her of that.
Hi, Pat -
Uh, I'd just as soon not break anything or get sick at this point, thankyouverymuch. Right now, I'm holding hopes for the app't with Renfro and him making some points. If that doesn't work, there's just going to have to be a heart to heart. If we can keep her in her apt with home health care for a while, that's fine, but she's going to have to agree to see someone who can tell us if that's affordable and what's affordable with assisted living. Contrary to popular opinion on the parts of others (un)involved, we cannot continue down this same road. Especially since we're now looking at blood sugar spikes for no known reason. And you're being realistic. I've always liked that about you (g).
Hi DR
I want to thank you again for allowing me to put your concerns and questions out there for everyone. It helps all of us.
Even the Alzheimer's wings of assisted living centers are the pits. That is where dad was for a while. So sad because most the residents never had visitors. When dad was in rehab after his first stroke there were three to a room. It was a terrible facility but the only close enough to us that insurance would help pay for.
DR you are helping us every time you post!
I hope your meeting with Dr. R goes well and you tips and answers.
I am scared for you that if you continue down the same path your health will take a significant turn for the worse. We shouldn't have to wait for something traumatic to happen for us to make changes. For Pat a broken ankle. For me a cancer scare. Don't wait that long to make changes, OK?
Bill
Pat
Facing reality isn't heartless it is really necessary with aging parents.
Bill
My daughter has some macular degeneration and I'll find out on the 29th if it's worse or holding at the same level. From what the doctor tells me, its a slow process or it can be a fast one. They never truly know. I'm not much help though because I do most everything for my daughter anyway given the condition she is but her school and MHMR is aware of the issue and have the resources standing by when or if we need them. Wish I could more help to you, Lady DR.
Hi Symply
I'm holding good thoughts and prayers that you will get good news on the 29th and I know everyone else is too!
Hugs Symply.
Bill
Thanks, Bill
I'll deal with whatever comes, as usual. : )
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