The good news: my father is truly eating again, and doing the exercises the PT and OT have prescribed for him in an attempt to get strong enough to stand and walk again. His mental state is mixed. He is clearheaded more than he isn’t. He is mostly pleasant and kind to my mother. It doesn’t seem that he is in any imminent danger of dying.
The bad news: It is possible he is going to live with a very poor quality of life. I’m not sure he’s going to ever be able to walk again. He is so very weak. This is obviously the biggest determinant of what kind of future he might have, so there’s a lot of emotional weight for all of us riding on this. He has made some progress. He can stand, with assistance, but only for a few seconds. Aside from that, he is still unable to read, which I would say next to walking is the single most important thing to him. He is pretty depressed, obviously, but also seems to have a lot of anxiety - he is catastrophizing everything.
My mother is so worn out. I’m really worried about her. She has major caregiver burnout and I’m just so worried about her physical health, too. Yesterday (Father’s Day) was a very tough day all around. I went to visit, but she was very low, she’s starting to envision a future that looks like her present situation for the rest of her life.
I am just trying to help in the ways that I know how (sorting out logistical issues) ,but none of it really addresses their real problems.
I am so sorry. He sounds like he is in the same situation as my MIL. It is just the beginning of his rehabilitation, so it’s difficult to know what is ahead. For my MIL, the point where your dad is now is the best it’s going to get for her … but she was already in bad health before her broken pelvis, and she’s 99. Your dad’s path forward may include progress that seems impossible right now. We never thought MIL would be able to stand on her own at all, yet she worked hard & it happened.
I would encourage you to keep faith that things will improve, but plan for a worst case scenario if the future doesn’t bring much change. Think about how the burden on your mom could be reduced, which may require changes that are hard to think about. Changes to the house to accommodate a wheelchair? Extra help in the home? A move to assisted living? Whatever it might look like, it is good to think about it in case changes are required. But again, the coming weeks could bring positive changes in his situation, as well.
Can someone please supply the exact words that will convince the parents that they need to be in assisted living or have daily in-home care? Something that will prove to them that what they think is their “independent and need no help” lifestyle is possible only because magic fairies (their children) run around doing everything for them both in the foreground and the background? Sigh. Rant over.
We’re working on that. Not audiobooks, per se, but the New York Times, which he read religiously, in its entirety 7 days a week before his vision problems developed.
My parents are ridiculously technologically-challenged. My father never wanted anything to do with any of it, and my mom tries, but struggles mightily. I think she can manage pulling up the app on the ipad and pressing play for each story he wants to hear. I don’t see a scenario where he would ever be able to navigate the device on his own (even before his eyesight failed).
In addition to all of the other things I’ve mentally added to the list of how to age differently than my own parents have, in order to spare my kids some of this hardship…staying current on tech is high on the list.
The Times has two podcasts each morning - a headlines one and the daily which is more in depth about one story - I wonder if there’s a way to set those up for him to play each morning? I know the tech issues are not trivial!
Make the type bigger on NY Times website on ipad? He could call up the front page and then touch the article to open and control size of type. (Or you may be able to teach mom)
remember you don’t have to solve every problem at once.
We found it useful to pick one target that seemed achievable and work on that. of course, that requires the patient to be willing to try quite a few things that don’t work until a solution is found…My parents have a “radio” that is actually an mp3 player with the simplest of buttons. You load it with a thumbdrive/memory stick with whatever you want, so an audio book or podcast would work.
If tackling an iPad, remove every nonuseful app, or drag them all to a secondary page, leaving the barest of essentials on the landing page. An Alexa is a good idea (my inlaws love theirs) just be careful how you set it up.
Stay positive in person, scream in a pillow when needed, cry in the shower when helpful. You can do this!
He has double vision and depth perception issues (if you go to hand him something, he reaches his hand a solid 4-6 inches to the right of whatever you are handing him). I think manipulating an ipad is a bridge too far for him. My mom can do it…though, I spent way too much time yesterday updating the OS on her old iPad (that I had given her when she was in rehab years ago to watch netflix)…only to find that the iPad can’t support the OS that the NYT app requires to run. It was that kind of a day. I’ll probably give them the newer iPad my daughter uses for notetaking at school to use for the summer to see if they can manage it before I run out and get them a newer one to use for themselves.
Our local library system has started a digital navigator program. You make an online appointment and can have 45 minutes to have your tech questions. One appointment per person per day. My friend has been having them weekly and gotten passwords sorted out and is better able to use her technology. She finds them more helpful than Genius Bar. Maybe your library has a similar program and you can ask for help with your folks.
I was thinking that if he derives joy from reading the paper, he may not adapt to the spoken word way to get it. Project it onto a TV? Just more thoughts. Can you ask him if he’s willing to try audio before you put your mom through this learning curve?
These are all good questions, and I appreciate your thought and concern
I did play him David French’s opinion column from yesterday. I was actually just playing it to make sure I could access it. I went to shut if off after a minute or two and to my surprise, he was like, “I want to listen to that!”.
I put the Youtube app on their tv and his aide has been finding all sorts of content for him to watch and listen to. He is seriously like Rip Van Winkle…he has had no idea that any of this stuff existed as he was too busy eschewing anything modern for the past 35 years.
I realize how hard it is to watch a loved one’s interests and options narrow. My dad and stepmother outlived all their friends and close family age peers. My father loved to read novels but by the end, I could see that it was getting harder for him to follow a simple plot line. OTOH, neither was particularly depressed (thank you, Lexapro) nor expressed any suicidal thoughts. He died at 91 and she at 93.
My father has only one doctor that he really, truly trusts (his oncologist). He has a routine check-up scheduled for next month, and if he is not able to walk at all by then, our goal is to get a ramp in place and secure transportation so he can get there. I’ve advised my mother to call the Dr. beforehand and talk to him about what is going on. If there is any hope of anyone being able to convince him to try an anti-depressant, it is this doctor.
I am sorry about all that your dad and mom are going through…others have similar point of views, advice. I understand completely about how frustrating it is for your dad not able to read. My FIL was a daily WSJ reader until his eyesight got very poorly in his last 2 years of his life. He did not want to explore other options, like getting an online subscription to see it on a laptop or iPad. He didn’t want to explore audio news or even books. He just didn’t want to manage any changes and my H did not want to push the issue when he was so not receptive.
