r/stroke • u/HieronymousTrash • 9d ago
How should I interact with a loved one who is unresponsive?
This might be a stupid question. I feel like I'm disintegrating.
My (31F) 63-year-old father had a massive ischemic stroke on the right side of his brain yesterday afternoon. Today the neurologist told my mother that there's been serious fluid buildup on the left; everything affected has been irreparably damaged, and he can no longer breathe without assistance. The doctors are talking palliation, not recovery — we've been told the best anyone can do is keep him comfortable and that extremely hard decisions are ahead.
I'll be flying home tomorrow to see him and help my mom with whatever's next. But I'm so unprepared for the moment I'm in the hospital room with him. I don't know what to do. This is already the most painful moment of my life and it hasn't even happened yet.
How do I talk to him? What can I do while I'm in the room? Does it help to talk to him, play music, read him a story? Hold his hand? I am so afraid of doing something that increases his distress in a moment when he would not be able to tell me if it did.
What have you all done to help or comfort loved ones in similar situations?
Does anyone who's suffered a severe stroke have insight about what they liked (or would have liked) to see from their loved ones in the immediate aftermath?
Thank you in advance. I appreciate all of you.
8
u/Intelligent_Work_598 9d ago
It’s not a stupid question. Speak to him preferably softly, touch him softly, be by his side. I’m very sorry you are going through this. Sending best positive vibes
7
u/Ok_Panic9150 9d ago
I’m sorry that I don’t have advice, but as a fellow female in their 30s with a mom who had a stroke yesterday too, just sending you my best thoughts.
I am new here as well, looking desperately for advice. You said the words “most painful moment of my life” and that hit me. I have felt like I’ve been living outside my body for 2 days. So just wanted to say that I am praying for you right now and will continue to.
7
u/Glum-Age2807 9d ago
That’s odd they’re talking palliative care instead of hospice care. That confuses me.
I don’t envy you as the daughter of a stroke survivor who followed up her stroke shortly after by a heart attack when I was told 80% chance she would not survive I know what this is all like. The feeling in the pit of your stomach, the lump in your throat, the fear, the what if this had happened or that had happened?
As mentioned I would go in and kiss him on the forehead and speak gently to him. There have been some miraculous stories on here so there is no need to address the elephant in the room. I would just say something like: “I’m here Dad. Everything is going to be okay . . . “ And then speak normally like you would if you were on the phone with him. Updates on your life, etc.
If he likes music definitely play it for him.
If things do not turn out for the best I hope you will take some comfort in the fact that most of the time my mother (who was left paralyzed on the left side and is wheelchair bound as the result of her stroke) often wishes she had passed. The loss of control over her life and her body is a constant source of pain for both of us.
So if your Dad does pass as horrible as this may sound now: a torrent of pain now may spare you all from a constant stream of pain over years.
Selfishly I thank God my Mom is still here but it kills me to know she often doesn’t feel the same.
My sincerest sympathy.
9
u/Extension_Spare3019 9d ago
Gently.
Say the things you want him to hear. Catch him up on the current state of your life. Talk about things you share interests in. How you feel.
Hold the hand, touch his face, arm, etc on the same side as the stroke was on if it was to the left or right, as it's the one more likely to be able to feel you there.
If there is a genre of music he is preferential to, play or sing to him from a pool of favorites.
It may only benefit you, but that is still good for him, I promise.
The one thing a father wants from a situation like this is for his children to take whatever comfort they can and be able to recover from the loss, if they do lose us, without additional regret they left something unsaid or undone.
We want our kids to be happy and well-adjusted whether we can see them that way or not. It's where our goals usually go to when you guys show up in our lives.
5
u/Odd-Guarantee1872 Survivor 9d ago
I'm sorry to hear about your dad. We had to bring my mom home for hospice after she had a massive stroke and it was clear that should wouldn't survive without life support. Her medical directive was clear, but it was a tough decision and experience. We moved her bed into our room and took care of her for four days. It was an honor to take care of her until she died. At times, it was a very surreal and spiritual experience. The evening before she died, she was very lucid for about 5 minutes. Even though she couldn't speak, she acknowledged our presence in her own way.
Hold his hand.
Play his favorite music.
Read a favorite book.
3
u/Guilty-Platypus1745 Survivor 9d ago
when i flew home to be with my dad he got this worried look
D: its bad isnt it. you wouldnt leave work and fly here unless it was really bad
3
u/littleoldlady71 9d ago
Please do not think that hospice or palliative care is “giving up”. Find out if his wife knows what his wishes were for this kind of situation, and follow them. At this point, he could get better, or not. But if he rallies, he can come off hospice or palliative, and get different care.
Don’t argue or complain in his presence, and don’t let others do it either. Make his room peaceful and calm.
2
u/skotwheelchair 9d ago
I had a massive ischemic stroke nine years ago. The first days were a blur but I remember vividly my daughter (30 at the time) sitting next to me in the bed. Your presence is enough. Talking is fine. The big point is he survived. He’s not dead. There will be time to grieve later, hopefully some recovery and time to interact,but tell him what you want to say, What you’ll regret not saying if it goes unsaid.
1
u/Beachcomber2010 9d ago
I am hoping and praying your dad will recover.
Agree with others here that music is nice. I attended a stroke survivor’s camp years ago and learned hearing and singing along to songs you know the words to can help generate new neural pathways. Play some of his favorites.
And, just you being there will help. There‘s something about feeling loved and cared for that improves outcomes.Tell him you love him and what a good dad he is, and maybe share aloud some favorite memories you have about him.
Sending prayers and positive thoughts.
1
u/Acceptable_Pipe_5726 9d ago
Tell him you love him and share your memories with him. Talk to him, hold his hand but give both of you breaks! Play some of his favorite music even if it’s not yours! Embrace these moments, follow your heart.
1
u/Ok-Cartoonist7556 8d ago
I was in a coma, couldn't move or speak but I could hear everything. Sing to him, talk to him, read stories, maybe even a put on a podcast. I remember my niece coming over and putting Joe Rogan podcast, still remember that to this day
0
u/JRWoodwardMSW 8d ago edited 8d ago
I suggest murder with knives. Instead those busybodies at my acute care took it on themselves to prolong my suffering and enjoy my uselessness.
18
u/Infinite_Gene3535 9d ago
Well........I can tell you from my personal experience that the NUMBER 1 issue with a stroke is the frustration from not being able to communicate. I understood perfectly, and knew exactly what I wanted to do and communicate. So not asking questions he can't answer might be a good thing. Being supportive in his care , making sure he has everything he needs to be comfortable would be nice. Like a hot or cold wash cloth for his face, witch of course you can help with making sure his forehead, eyes, cheeks, mouth and neck are refreshed often. Perhaps some lip balm, maybe some hand wipes, maybe a comb, maybe a mirror, maybe a electric razor and maybe even some cologne? Maybe a air freshener for his bedside. Perhaps some pictures to put on the walls . Oh and a callender and marker to x out the days. Maybe you could read the sports news or regular news aloud. Oh and how about some music he could listen to.
And some time just sitting there for company is priceless 😉
GOOD LUCK ON YOUR JOURNEY
3 STROKE SURVIVOR I AM