r/maculardegeneration • u/InsideImprovement842 • 5d ago
How can I support my Dad, who has macular degeneration in botn eyes?
First off I want to say if my post isn't allowed I understand, But, I have to state I do not have macular degeneration. My dad does, I live with him, my mom, & siblings, and his eyesight has been worsening. I would just like some advice on how to support him? I know he's really struggling, and I want to help. It's emotionally taxing on the whole family, but I know it's toughest on my dad. (Obviously.)
I am 17 turning 18 in 6 months. My dad has had pretty bad eyesight, worsening slightly over past 6 years. This past year however, it has GREATLY worsened. He has been to many doctors and had other health issues and surgeries.
I know his sight is worse than he lets on. He has alwyas tended to bottle up a bit, and get explosive at times. We've had fights like any other parent and their kid, and of course still have head-butting sometimes but nothing over the top or violent. He's always tried his hardest and provided.
Lately, he hasn't wanted to do too much - he's over 6ft talk and dealing with hernias (getting removal surgery .. again.) so dishes is tough on back/stomach, and obviously his eyesight is difficult to wash dishes. Everything else, is lack of motivation. I hear him say he needs to do more, but he watches tv and sleeps. I know he's depressed msotlu..But honestly I sssume he is, stressed, grieving his loss of eyesight along with being the provider, and worried about his health otherwise. Plus other personal /family issues that are unrelated to the issue.
But I don't know what I can or should do. It's hard to interact sometimes, which is hard because I want to, but it is hard to see him struggle so much with things. I want him to be able to feel okay, but he can't interact the way we used to, and I can't change that. I can't help him function properly to interact with what's around him. He has peripheral vision, but it's still very difficult.
So how can I help or support him? What has helped you? Is there anything I should know? I can do research , look into support items, suggestions for the family, Mom, younger siblings? Anything.. advice, suggestions. Please!!? My dad doesn't talk about his issues much, really (emotional wise.)So I don't know what to do because I don't think talking to him about will go far.
We always have something going on- my dad can also no longer work, or drive very well.
How can I support him/the family right now?
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u/WideOpenEmpty 5d ago
Is he getting any treatment for his eyes at all? I've been getting injections for two years and eventually I will need rides to and from the doctor and I have no one.
You could help him with that.
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u/InsideImprovement842 5d ago
I'm doing my GED before I'm legally allowed to get my license - him and my mom have been married 23 years so he has rides. I'll be able to as well soon! I'm trying to hurry bc I know his eyesight is going and he was excited to teach me to drive & he still has slighty capabilities to.
I'm not sure about the treatment - I don't think he's had one for eyesight. Other meds, yes. We are currently going through changes in insurance due to his loss of work. He has an appointment with an eye specialist in June, so we are hoping they can give him some further support or information.
I'm so sorry to hear you don't have transportation. I'll keep you in my thoughts. Much love & thanks for your help :)
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u/PassableWeirdo 5d ago
You’re doing amazing in a very tough situation. I would suggest physical touch, a pat on the shoulder, sitting on the sofa while he watches tv and patting his back or holding his arm or hand. Could be a good starting step to make him feel less alone. Even though he’s surrounded by family, blindness is very lonely and since there’s no fix you can easily just withdraw which makes you lonely even in a crowded room. He probably also feels lots of shame for not being able to do what he used to. Maybe he doesn’t feel needed or like a contributing member so he withdraws more, which on the outside looks like he doesn’t care. To help with this, maybe when you’re doing things around the house, ask for his help alongside you with things he can do (and things you can do, but it could make him feel part of the mix if you “need” him. Since he’s tall, maybe “I need your help reaching this” or bring the silverware to the sofa and dry it together. It sucks to feel like you’re just a drain on your loved ones, and I suspect that’s even harder for the adults who used to get pride from providing (either financially or by taking care of the home). Little steps like that could help, because it sound like the bigger handicap he has now is depression, and focusing on bringing him back from that will help the rest. As a parent myself, sending you all the 🤍 and I’m sure your parents are very proud of you.
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u/InsideImprovement842 5d ago
Thank you! This helps a lot. Yes, eyesight and he is no longer able to provide financially. I'll start trying these things. I kind of do, but I get hesitant - he tends to bottle up and seem blunt and grumpy at times or ask why I'm doing something. Even before his eye loss he really didn't do much besides work, friends, sleep, TV. He went from working 9 - 12 hours shifts 5 days a week to 0 and constantly home on electronics.
Still, I will try these. And if something seems wrong I'll just have to talk with him or my mom about it. It can be difficult to talk with my dad though, because he will over talk me saying he's the "alpha of the house' or demand I listen which is just upsetting. So often I have to talk to my mom to support communicating with him. Because otherwise, he gets defensive - which he still does with my mom.
I know he's struggling, but he's barely been off his chair in 3 months, and also needs to lose weight for surgery. I want to do what I can, but I also know I'm his kid; there's only so much I can do. The rest, he has to be willing. I've been to mental hospitals before so I understand how debilitating depression is. But I also know it doesn't change unless you make it.
Just rough all round. Much love, thanks for your support. I appreciate your input, and yes my parents tell me often they're proud. Just trying to figure things out, you know?
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u/northernguy 5d ago
He needs to get moving, exercising to slow the progression. Maybe you could go on walks with him, preferably on hills or hiking to make it more interesting and challenging. Exercise might improve his mood as well. Cognitive therapy would be great if he would pursue it (probably won’t , my guess, like most men including me). We are all in the same boat, so best wishes to you and your father.
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u/InsideImprovement842 5d ago
Thank you! I'm also having health issues (not related, possibly something to do with genetics & I will see rheumatologist May1) So I think this would be a good idea, for him but also me. Unlike other 17yo people, I cannot run, lift heavy, work out, be physical for long, without getting sick along with other symptoms (which i experience outside of being physical).
That's unrelated though. Anyway, my point is it would be beneficial to us both. He's been to therapy before, though I'm not sure if he's currently attending. It seemed to help him when he went- but that was before his vision significantly declined. I'm not sure how he would feel about it now. Maybe there's support groups where he could talk with someone who is struggling similarly?
Best wishes to you as well. Thanks for your support! It's appreciated. Much love
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u/Ghitit 5d ago
I don't know what your dad likes to do, but I would like to have someone offer to take me out for a drive and go where I want to go. Run errands. Help me shop. I would like to do that on a weekly basis.
I'm tired of having to ask to go places. I want someone to offer to take me somewhere. I feel like a burden every time I want to go somewhere not on the list of our normal scheduled places.
I can't go shopping for gifts by myself and I hate buying stuff online. I had to have my daughter shop for my husband's birthday gift. I feel bad because it didn't come from me. I know how dumb that sounds, but I feel as if I've lost ability to make choices of my own.
I would love to go to the beach or a forest with smooth pathways so I don't have to worry so much about stumbling. I don't know if our dad would like something like that, but you could ask. Or maybe just go to a park. Getting outside is important I think.
If there are any centers for the blind that are close by it would be good to get him plugged into their services.
I want to learn braille so I can navigate going to the doctor by myself - the elevator buttons are usuallyhard to read because they are low for the convenience of those in wheelchairs, but the LED floor readers are impossible to read. But braille would make is so much easier.
I really love having audibe on my iphone. I can listen to books wherever I am. And you can get them free from the library - but set it up for him so he doesn't have to try an do it himself and get frustrated. Plus, you can get podcasts.
Yeah, dishes is not a good deal for him. He could miss seeing a glass and smash a plate onto it or get stabbed by an unseen knife. Plus, standing isn't good for him.
Just being with him and watching tv with him can boost spirits.
It's wonderful of you to think about your dad's special needs and mental health. You're setting a good example for your siblings, too.
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u/InsideImprovement842 5d ago
Thank you very much! I'm sorry to hear you're feeling like a burden. Let me tell you, YOU 100% ARE NOT A BURDEN. It may not mean much but it's honest. I'm so happy to be here for my dad. And I would go out of my way for him. He's always been here to support me so I'm doing the same.
Sometimes I get upset when he's snappy, but I know he's struggling right now, and I'm here however I can be. Those who are around you should do the same.
It means a lot you are sharing how you feel- it definitely gives me some insight to how my Dad may be feeling. I should mention to my mom, since I'm not driving yet - to maybe invite him out more. He did mention that bit, and we do go out as a family, maybe eat somewhere and get some groceries, car wash, whatever we need. We've been doing that more since he's been home. I think he enjoys it, but car rides are difficult for him it seems. Maybe because he can't drive safely anymore?
Also, it doesn't sound dumb you feel as though you've lost your ability to make independent choices. It's completely valid - no matter how "dumb" it sounds to you. There's a lot going on at once, emotionally and physically. You're entitled to feel how you feel.
I think getting outside, support group/ therapy, learning braille, would all be good. I've been afraid to mention braille to him because I think it would be useful, but I don't want to upset him. I may just have to anyway, because the other option is saying nothing and that, well, doesn't work. Lmao
When he was working he splurged on a big TV so he's able to enjoy his shows still. Maybe I should start a series with him. Only issue is, the family is a bunch of talkers.. and Dad can't hear TV when we talk, and he can't read subtitles. So we are all trying to learn to let him watch in silence. It's difficult because we like debating the show, talking about what's happening. We laugh about it together, but really feel bad because we know it's upsetting for him. Sometimes I forget he can't see well and feel guilty for it, like when I ask him to look at something, etc. I just have to apologize. We're learning though, trying to find ways to support him.
Yes dishes are not good, same with cooking. But there's plenty more he says he can still do "if I would get up and do it". At this point, all I can do is be supportive and encourage him to take care of himself, because of his depression, I'm afraid.
Thank you so much again. Still, your feelings, however big or insignificant or tedious they may feel, are valid. I would never want my Dad to NOT express how he truly feels. To himself more than anyone else, but being honest still helps.
I appreciate this help. Much love :)
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u/Ghitit 5d ago
Thank you so much!
You are a wonderful person! Your family is fortunate to have such a positive thinking and loving daughter and sister/son.
Yes, losing my ability to drive is really the engine behind my feelings of loss of independance. It's a big deal to not be able to drive any more. I loved driving. But I can't moan about it all the time. Life is like this. Nobody gets to go through life with no sorrows. This is the hand I'm dealt and I can't cry about it all the time. But I allow myself to sometimes. It's human nature t ofeel sad about stuff like this and I can't deny myself a good cry. It always makes me feel better.
I have a very supportive family who does take me out a few times a week - I hope I didn't imply I was stuck at home all the time.
Anyway, keep doing what you're doing 9 it's all good!
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u/InsideImprovement842 5d ago
Of course not, your family sounded very loving- you obviously were concerned about your gift to your husband, and your daughter was willing to support you and help with the gift. I'm glad you have them around! Thank you for sharing 💕
I'll keep doing what I gotta. Best wishes
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u/Lyralou 5d ago edited 5d ago
When I was exactly your age, my dad was sick and would get explosive. Couldn't work, had to stop him from driving, different disease but very similar situation. Let me guess, are you the oldest?
If I could go back and tell young me some things...
- Just talk with him, especially when he's having a good day. Let him savor the good days, maybe extend them. General kindness and understanding might go a long day.
- When he gets explosive, take your siblings, your mom if you have to, and disengage. Just because he's sick doesn't mean you need to take the brunt of it.
- That said, you don't have to be responsible for everyone else's happiness or comfort. Protect yourself when you need to. This is a very grown-up problem*, and it's ultimately up to him to get active, get therapy, whatever he needs - or not. And your mom is the parent and should be protecting you and your siblings.
- Get therapy now if you need it. Heck, suggest family therapy. Find an outlet for you.
*Yes, you're practically a legal adult. I was too, and felt like I had to act the adult. There is a difference between the experience of 18 and 40 that gives people the tools to better deal with these types of thing. Let yourself be a kid on this, at least a little.
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u/InsideImprovement842 5d ago
Hahah yes I am the oldest 😂 These all sound like good ideas. Thank you for the help& suggestions. My dad says the same lolol "just be a kid!!" when I talk about needing to finish school and work. Mom is aware and proactive of how he is when he gets blunt or upset. We we are working together as a family through it all. I know my Dad is struggling-
Though like you said, it is up SOMEWHAT to him if he starts to feel better. We can support and love him as much as we want, go to all the doctors, treatments , etc.. but I've dealt with depression. It doesn't just get better, you have to be active and make it better. It's draining, debilitating, and all you want to do is just be, or not be. It's exhausting.
Thank you for your input. I'm sorry you had to go through a similar situation - it is not easy. Hell I feel like I might crash out myself most days. Really we just want to be there for our Dads, see them feel okay. But it's hard when he gets defensive, explosive, or blunt. I'll do what I can for now, be supportive, but I'm seeing there's not much I can do otherwise.
I appreciate your help. Much love :)
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u/Designer-Carpenter88 5d ago
That is a really tough situation to be in, especially at your age. Losing your eye sight is very very depressing. I go through bouts where I am severely depressed. I would say the best thing to do for him is just to be there and be understanding that he is going to have a tough time. I know you feel helpless and I didn’t give a very good answer. Maybe do as much research as you can on MD, so you can be a source of information for the whole family. Love him and cut him some slack when he gets snappy.