It will be easier to go from the hospital to rehab , and in rehab be assessed for what he would need at home.
But for right now, hospital. Lack of O2 also tends to produce behaviors that aren’t typical for your Dad. It’s hard. Pace yourself, and give everyone grace to get through the day. (Hug) for the journey
edit to add: questions to ask —- how does he qualify for rehab and who decides that? how is discharge decided if his O2 doesn’t improve? what should we look for as worth an ambulance or doctor, and what is the new normal?
Thanks for the good thoughts and good info, all. It’s been a hectic few days.
First, re: rehab…the admission would still be based on the original hospital stay (surgery) - apparently there is a 1 month window for that. But it isn’t really an issue as he’s been in the hospital since Friday anyway, and is weak enough that I think he would be eligible based on the this stay anyway.
Re: the low oxygen. No one has really given us a great answer on the cause. He does have A fib, so that could be it. He had some fluid on the lungs, so they began treating him for pneumonia. When I arrived at the hospital yesterday, he had been moved to a private room as they detected a C-diff infection. That would likely explain the lack of appetite (he isn’t really eating, claims everything tastes awful and he has no appetite). They are weaning him off the anti-seizure med (Keppra), as he is not tolerating it well (that may be contributing to his depression). He keeps telling us he just wants to die. I am not in favor of prolonging a miserable existence for him, but it seems like the things that are issues now are not insurmountable.
I think the hardest part of this is his behavior toward my mother. He is so unbelievably cruel to her when she’s at the hospital, and when she’s had enough and steps away and goes home for a bit, he’s upset at her for staying away. She really can’t win. I’ve tried talking to him about it, but he’s still not totally rational. He is ok with me, and seems to find it comforting when I’m there, so needless to say, I’ve been at the hospital the better part of the last three days. I’m actually happy to be at work this morning! I will go after work to relieve my mother and try to coax him into eating some of his dinner.
I know. They’ve been married for 61 years, this is definitely the “…or for worse” part of the pact.
Though the update as of this morning is that she was there yesterday evening and he was pretty pleasant to her, and mostly lucid. He said something to the effect of, “I think maybe I’ve still got a little life left in me yet”, willingly drank an Ensure shake and said it was very tasty. So maybe things are starting to turn around a bit.
I would focus all your time on the husband to wife strife on your mom. Let her know that what he is doing is not ok, that she is NOT to feel bad or hurt and BUILD. HER. UP. Acknowledge that perhaps he cannot realize his comments are inappropriate but that you and the family know who she is and how she supports him and that you love and care for her!
My MIL is sometimes unbelievably cruel. We now tell her we’re leaving and will return later. There is no fixing it when she gets mean, and the cruelty hurts us far more than us removing ourselves from the situation hurts her.
Glad to hear there is a bit of optimism. But gosh, lots of challenges too. Just make peace with the fact that you are doing the best you can to help them.
I am away from my laptop and can send you a private message in a couple days … but this is very much my parents’ experience when Dad had vascular dementia caused by diminished lung function. They were married 67 years and he was so mean to her — just her —- at times. In hospice, the staff could hear him (there were essentially baby monitors) and the staff would intervene. Sometimes a third party does the trick.
Reassure your Mom that this is not her real spouse (I am guessing his behavior is new) as often as possible while giving her permission to take a break. And remind your Dad that he isn’t dying, he’s just in the hospital getting better. My father really did think he was dying (that day) and I would hold his flailing arms and say “nope you are just in the hospital for now”
It is tremendously hard. Kudos to your family as they navigate all this.
I think that’s a great idea if the nursing staff can somehow listen in.
It seems like it can be addressed with the nursing staff or the social worker
My mom also was mean in her last hospital stay. She said things to my husband and I that she’s never said before. My mom always liked my husband and was very nice to him. She was mad we didn’t just leave her to die because we asked the front desk to check on her.
My mom was complicated though so I wasn’t that surprised. She could be mean to my sibling also.
I remember when my mother was in her 80s and had a broken arm, she was so nasty to my father who was taking care of her. Telling me things like I don’t know why I stay with him (mind you they had been married for over 50 years at the time). I think some older people just get like that.
Overnight, with assistance from the nursing staff my father called my mother at 3am, 5am and 6am demanding that she come get him. I guess my time in the golden seat is over, as he ranted about me to her and how I hadn’t done anything. Complained that my D20 only spent “eight minutes” visiting him yesterday (she spent an hour). He was furious at all of us, except, ironically, not at my brother (who he has had a very contentious relationship with for decades)
I can shrug all of that off, but when I went to see him today, he was in and out of a very light sleep, talking somewhat incoherently, but it sounded like he was telling someone (us?) all of the things we needed to clear out of his closet (“you can donate this sweater…”). When he woke, he told us he felt very calm about dying. When I was leaving, I told him I’d be back tomorrow and he told me not to rush back. If a person is able to will themselves to die, I do believe he is going to do it.
My mom and I had a long talk, and although we believe that he can recover from the current issues, if he has no will to live, we need to try to honor what he wants. She is going to speak with the hospital about enacting a DNR, in line with the wishes outlined in his living will.
Since every day seems to be a completely new chapter in this story, I suppose it is possible things will be different tomorrow, but that’s the latest.
My mom had a DNR but for her last hospitalization my sibling decided to go with DNR-CC, comfort care so mom could be comfortable instead of agitated. Which she was.
The staff was able to give her some medication to help her be calmer. They treated any infections but no other treatment. I’m glad my sibling was there and was sure in the decision. Because I wasn’t there yet.
Mom had many issues, many issues that treatment for all of them would have been overwhelming for her.
But…there are times where you think things are desperate but they do improve. Almost overnight you are past that crisis.
I’m sorry that the staff helped your dad call your mom so many times. That’s crazy. And don’t let how your dad is now cloud your mind. He’s not himself right now.
I am also surprised they helped your father make those calls. When my father was in the hospital he was calling me at 3 am The thing was he was calling me to tell me that nobody was answering the nursing button when he pressed it (like what could I do about that 1 1/2 hour away from my home.)
I mentioned it to the nurses and it stopped, I think they simply put his phone out of reach when he was supposed to be sleeping.
Keep in mind that DNR is not a simple thing, you need to have it done correctly. My father’s is DNR and Do Not Intubate (DNI). When I discussed this with a doctor, they said for somebody his age you needed both.
My MIL has been on hospice care for four years.We have been through so much with her during that time. She has gone through periods of just wanting to die, periods of not caring about anything (just sleeping in a recliner or bed all day) … and now she is in a period of being fine with dying but not actively wishing for it. It’s been difficult on everyone, and it changes often.
I am so very sorry about what all of you are going through. Your dad is very agitated and frustrated that I think he doesn’t really see how he’s behaving. I am sorry about your mom too. Virtual hugs to all of you.
My dad had vascular dementia and was in and out of the hospital a handful of times during his last 3 years. Once he called me 3 times one evening, with the help of the staff: First time I’m lost in a neighborhood that I don’t know. Second time he said he’s in jail and can I get him out. Third time he said do you think it’s ok for me to stay here, I don’t know where I am or why I’m here. Each time I explained he’s in a hospital to get better and I will see him in the morning. I cried after each call. He wasn’t angry, he just sounded so lost and was trying to warm up to me with a slight humor in his voice so I can help him.
He said (died 2022) and my mom (still living) talk often about how they don’t want to suffer and rather die. Unfortunately, life doesn’t work that way and somehow they recover a lot or a little, but they do improve as @deb922 mentioned earlier.
All of this is really hard. We can have all the plans to do everything right or good enough, but things happen. I am glad that you can share your feelings here. I am truly sorry.
If there’s one thing I have learned from this community, it’s that every day, every hour, can be different. All you can really do is the best you can in the here and now.
@DeeCee36
Sending cyber hugs as well. You might not feel them on your skin, but I swear you can feel them in your heart. It is so hard. All of it. No matter the outcome.
I feel like I have been dominating this thread lately, and I cannot tell you all how much I look forward to the day when I can contribute as much support to this thread as so many of you have shown me…when my family is out of crisis and I can use my experience to help someone else navigate their own.
So with that, here’s another update. Physically, he is on the mend, but psychologically things have continued to deteriorate. He is sobbing, begging us to let him die, has refused to get up for PT, repeatedly pulled out his oxygen cannula, stopped taking food or liquids and has refused his antibiotics. He had another psych eval and they have decided to start him on anti-depressants. I’m not sure how they are going to administer them. He has continued to say hateful things to my mother, and on her way out of the hospital yesterday she was distraught and took a fall. Thankfully, she seems to be ok (just very sore), but she is unable to get to the hospital today. I just got a phone call from the hospital asking for permission to lightly sedate him and give him an anti-anxiety medication.
I am planning to go the hospital after work, but am thoroughly dreading it. I am just praying for his suffering to end, one way or the other.
I am not in favor of prolonging a miserable existence for him, but it seems like the things that are issues now are not insurmountable.
my father called my mother at 3am, 5am and 6am demanding that she come get him. I guess my time in the golden seat is over, as he ranted about me to her and how I hadn’t done anything. Complained that my D20 only spent “eight minutes” visiting him yesterday (she spent an hour). He was furious at all of us, except, ironically, not at my brother (who he has had a very contentious relationship with for decades) 