Dad not going home: how to be kind
January 23, 2020 8:33 AM   Subscribe

So my dad’s second stroke, in early December, wasn’t nearly as bad as it could have been. But he was already dying of congestive heart failure and is on oxygen constantly. How do I tell him that he won’t get to go home?

My poor dad is now stuck in the one place he never ever wanted to end up, a nursing home. His home was not safe for him before and it’s absolutely unmanageable now. A physician has written a letter explaining that he can no longer make decisions for himself. I have his power of attorney form. His landlord is eager to sell the property where he was living until recently.

When I visit him he is filled with talk, often unintelligible, about what he wants me to do with his cars or his other things In anticipation of his return. But he’s not going to return because I am not going to allow him to return. No medical professional believes that is a good idea. He is nearly 90 and so frail he would simply end up in the hospital again, possibly in much worse shape.

Have you faced this situation? How did you respond? How did your parent or loved one respond? My dad has told one friend he may be stuck there. And that’s true. But I haven’t said those words yet. I know it’s important for people to have hope but my dad was miserable when he was living at home. The fact that he’s miserable in this new place is in no way surprising. But it breaks my heart anyway. I’m super sad about this and really wrestling with how to talk to him about it. I would be grateful for any wisdom or experience you can share about any aspect of this situation.
posted by Bella Donna to Human Relations (21 answers total) 10 users marked this as a favorite
Best answer: I have been in your shoes. Having such a talk with my mother (at an early stage of dementia) was very harmful and I wish I had avoided being explicit.

Since then, having gained more experience with dementia, I now embrace an approach where I don't tell everything I know, and to let some things be questions for others (doctors, etc). "I don't know right now", "The doctor will tell us what she thinks, when she is ready" and a redirection ("Is there something we can do to make this place more comfortable and happy for you for the moment?").

My best wishes to you; it's the hardest thing I've ever done.
posted by Riverine at 8:43 AM on January 23, 2020 [74 favorites]

Is hospice an option at this point? There may be a hospice inpatient facility where he could be enrolled and admitted. He would be well cared for and you'd have the peace of mind that things are the best they can be in this situation.
posted by sandpine at 8:47 AM on January 23, 2020 [8 favorites]

Nothing to add to riverine's comment other than wishing you strength.
posted by lalochezia at 9:01 AM on January 23, 2020 [4 favorites]

Best answer: I agree with Riverine -- defer and deflect. Otherwise, every conversation will be about when you are going to sign the paperwork to get them out of there. The decision really is coming from the doctor's best advice, so go with that.
Be careful about other medical and social team members who may get their hopes up about leaving "in the future." That just leads to a hard letdown and puts you as the bad guy forcing them to stay.
Better to be settled in a good location than shifting a person with fragile health from one place to another during one crisis after another.
Spend your time being a loving relative and leave the medical care to the professionals.
posted by TrishaU at 9:03 AM on January 23, 2020 [6 favorites]

My situation was similar to yours. I did the "defer and deflect" strategy with my father, when he was first admitted to a nursing home. He kept telling me to set up a family meeting with the doctors, so we could all come up with a discharge plan. I kept saying that I would take care of it (of course, I never set up the meeting). After about a month or two, he stopped asking. It was difficult, to say the least.
posted by alex1965 at 9:08 AM on January 23, 2020 [5 favorites]

If he has cognitive decline, yeah, defer and deflect. If he’s in his right mind, it is worth discussing with doctors and geriatric experts to at least consider having the difficult truthful conversation with him - there is an ethical obligation with regards to honesty and respect for someone’s integral personhood, although this ethical obligation may indeed be overshadowed by other obligations of kindness and humane treatment.
posted by The Last Sockpuppet at 9:13 AM on January 23, 2020 [37 favorites]

Best answer: I think the kind thing to do is let him make his plans for now. Don't do most of what he wants, of course, but listen with interest as he tells you and even take notes and lie a little, if you have to.

My father is in probably his final decline right now, and I'm not there so it's easier for me to be a bit cold and rational. I've had to remind my mother that the rules are different at this point: She doesn't need to be honest about everything, and should assess these situations in terms of how much anxiety an answer will create or avoid. I certainly spend my share of time daydreaming about things that I'm probably never going to do, too.

It's a little bit easier at this point to tell him we don't know yet because we don't, it's been hard to get him stable enough to figure out what all is going on, but my gut tells me that he's not going home in part because it just wouldn't be possible for my mother to care for him at home, but also because he's not going to get better.

Your dad likely knows, deep down, that what he wants and what is possible aren't compatible. He's probably grieving that a little, and if he was younger and a little fitter it might be appropriate to have the hard talk to help him process it, but you're likely going to end up having to break the news to him over and over. I would deflect until he asks straight out: I'm not going home, am I?

I'm sorry. This sucks and I hate it, for you and for me.
posted by Lyn Never at 9:15 AM on January 23, 2020 [7 favorites]

Response by poster: Quick note: He is in a hospice program at his facility. The hardest part, which I forgot to mention, is that his housemates are about to be evicted. I know they will come and tell him (they visit him) and he is also a hoarder so I feel like it will take an active campaign of lying to avoid the truth that his home is going to end up sold and his stuff is going to end up elsewhere. He doesn’t have dementia but he has absolutely had a cognitive decline. Apologies, no more thread sitting after this.
posted by Bella Donna at 9:30 AM on January 23, 2020 [4 favorites]

Best answer: "Okay, Dad, thanks for letting me know."
"Okay, Dad, I'll look into that."
"Okay, Dad, yeah, I'll make a note of that."

The thing is, he might never agree he's not going home because that also means facing death. I think you can understand what is happening even if he doesn't or won't. I don't think he has to.

I think what's really important is that you say to him what you want to say for you. Make sure you've told him you love him, or what he means to you as a dad. If you're not a person who regularly communicates this way with him, tell him positive things he means to you (my mom got some relief in telling her mom she forgave her).

Hospice should have some social workers or therapists that support families, right? I would talk to them about this. You need to take care of your own grieving too. It's okay not to have a big hearth-to-heart with your dad right now. That is not cruel. It's a kindness.
posted by bluedaisy at 9:53 AM on January 23, 2020 [3 favorites]

Best answer: One thing I would do is talk to the staff at the nursing home about how they would handle this conversation. They see a lot of patients with various conditions and types of cognitive decline, so they may be able to offer specific suggestions about having this conversation with your father.

If your father is lucid but impaired, and capable of remembering the conversation and retaining things from day to day, I think I would simply approach it like this:

"Dad, I love you, but it's not possible for you to live alone again. [reasons] Right now, you're just not healthy enough to live on your own and the doctors have indicated that isn't likely to change.

I love you, and I wish I could make this happen for you. What can we do to make the best of this arrangement so you can get the care you need and be as happy as possible?"

Also, talk to the hospice folks and see if they may have a therapist who works with people in hospice. If you can enlist help from the facility and hospice services, by all means do so. They may have insight that will help you. If you can talk to his friends and set some ground rules for their conversations it may help. Not saying they need to lie, but if you can guide them to focusing on the here-and-now visit and not bring up or dwell on the housing situation that might make things better.

This sucks, and my heart aches for you. My father suffered vascular dementia and memory loss, and then his wife who was his primary caregiver passed away this summer. I had to have these discussions with him, about why he couldn't just come live with me. It's wrenching, heartbreaking, and so difficult to navigate. It's so difficult watching your parent lose the ability to care for themselves. Worse still to be making decisions for them because of that.

Be kind to yourself, you are in a position too many of us wind up in that nobody should ever have to deal with. Feel free to MeMail me if you need to vent to someone.
posted by jzb at 9:56 AM on January 23, 2020 [12 favorites]

Best answer: Oh God this stuff is so hard. I’m so sorry.

I just went through this with my father last year: I hope something in his story can help you.

My dad also always totally hated the idea of assisted living and initially he didn’t want to move from his house, where he lived alone, into assisted living near family. I wanted to respect his autonomy and he was in a slow decline; there was no crisis. So I just raised it as something I thought made sense, and left it for him decide. At first he said no but 24 hours later he said yes, because he knew he wasn’t doing well by himself.

What surprised me was how incredibly quickly he adapted once the move happened. He loves having other people do the cooking. He loves not having to keep on top of paying the bills. He loves that he never has to think about his medication: other people bring it to him and he just takes it. Basically now he gets to spend all his time reading and listening to music and watching TV, and honestly that is what he wants to do. I would say that today he probably gets half his pleasure from reading, and the other half from a multitude of tiny things like a cup of coffee or a glass of wine or a warm blanket. This is a guy who was incredibly physical and outdoorsy (cycling, canoeing, swimming) his entire life and now he is just .. not.

The minute he moved into the facility, he immediately let go of a whole bunch of stuff. At first I would update him (that I had listed his house, or shipped some memento to my brother or something), but it quickly was obvious he didn’t care. His world got really small really quickly.

I feel like a thing I have slowly learned is that he’s not the person he used to be. That person *would* have hated assisted living. But my father today actually does not: he is mostly grateful and happy to be taken care of. Every now and then I’ll see a flash of how he would’ve felt decades ago — like, he will complain about some rule, or say that a particular administrator is ‘bossy.’ But even on the rare occasions when that happens it feels like muscle memory: there’s no conviction or real emotion behind it; it’s just how he’s used to talking.

So I guess if I have a takeaway that might be it: the older person has changed and is still changing, and it helps to try to stay open to that rather than fighting with or worrying about someone who really doesn’t exist any more.

Sorry — that was longer than I expected! I hope something in it is useful for you and I hope for ease for you and your family.
posted by Susan PG at 10:15 AM on January 23, 2020 [28 favorites]

If there's any way to speak with the housemates privately, and emphasize that discussing eviction/selling of the house is going to put stress on your dad, try that. Defer and deflect is an excellent strategy for right now. I don't think this is as much "an active campaign of lying" as it is being evasive, in order to treat a cognitively-impaired person in hospice with kindness.

And yes, please be kind to yourself, too. I'm sorry you and your dad are going through this.
posted by Iris Gambol at 10:18 AM on January 23, 2020 [3 favorites]

Hospice programs, hospital based or otherwise, are usually structured such that they have resources for caregivers in addition to the person receiving hospice care. They will likely be excellent resources for planning this conversation.
posted by ocherdraco at 10:23 AM on January 23, 2020 [3 favorites]

Oh shit, that's...a lot harder.

If they're being evicted, this sounds like a situation that was probably on the brink of occurring even before the stroke? You may have to discuss this with him, maybe framing it in terms of "the landlord has swooped in and this is all in motion already and there's nothing we can do". You may have to negotiate a period of "but where will I go?" in a more deflect-y way, but if he's going to get this information from somewhere it should probably come from you.

It can be hard with hoarders, there's a lot of anxiety tied to My Stuff, and I imagine this means a crapload of work for you behind the scenes. You may still need to info-manage what you can on that end.
posted by Lyn Never at 10:39 AM on January 23, 2020 [5 favorites]

One key issue is: if you tell him, will he remember because if he won't remember you need a different strategy since it will come up again and again and again. I think the common position is that there is no reason to force the truth on someone who doesn't have the mental capacity to process the news and move to acceptance.

If he will remember, and he will find out, then I would certainly tell him that the landlord is selling the house and (if at all possible) that you will put his stuff into storage (or maybe just his "good stuff") for now. (Talking as someone who paid a lot of money to postpone emptying and selling a house until her mother was ready to accept that was necessary.)

Finally, if your father is able to understand, you should think about his character - is he someone who wants to know the truth, even if difficult or is he someone who prefers to deny and deflect in his own life? My husband's parents had been super clear that they are a family that values truth, especially around medical issues and death/dying, and we have been respecting that even if it would be easier on us to protect them and not watch them deal with the pain of knowing that they were/are aging and dying. On the other hand, other families work differently but you need to think about your father's preferences, not yours.
posted by metahawk at 1:30 PM on January 23, 2020 [3 favorites]

Best answer: Phrases you could try: “I’m looking into that” or “I’m taking care of it.” My mother visibly relaxes upon hearing this and has eventually let go of some nagging worries.
posted by Riverine at 5:05 PM on January 23, 2020 [3 favorites]

What @jzb and @ocherdraco said. I would encourage you to talk to some social workers who work in grief counseling and maybe even some of the folks in hospice about this. They'll have seen similar things and they may also have suggestions for how to proceed as well as ways to talk to someone who is in cognitive decline while also making decisions for him.

Best of luck, this sounds so damned hard.
posted by mulkey at 7:38 PM on January 23, 2020 [1 favorite]

Active lying is too difficult. But although you may have to tell him that his landlord wants to sell his home, you don't have to tell him that he will never be leaving the nursing home. You may need to listen to some distress and directives for you to prevent the landlord evicting him but I would have no hesitation in providing ambiguous reassurance that you will act without actually acting, and then trying to redirect. And when it comes down to it throw the landlord under a bus, 'there was nothing you else you could have done'.

You will probably need a practical plan for his stuff, which takes into account that the housemates will know what you have done about it. If he has enough money to pay for storage of it, then it may be worth doing so.
posted by plonkee at 4:09 AM on January 24, 2020

Bella Donna, I am so incredibly sorry you're going through this. I wish I could say something, anything, to be helpful. But all I have is a huge amount of sympathy for what must be an incredibly awful time. I'm so, so sorry and I send you energy and strength and admiration.
posted by widdershins at 7:30 AM on January 24, 2020 [3 favorites]

Best answer: What would you want him to do if your situations were reversed? Promising to do things you weren't going to do would be very upsetting to me if I were your father. I think it's OK to be truthful but put things on his doctors: "If the doctors say you can go home, you can." It also might help to talk in hypotheticals, especially since he's already guessed he may be stuck: "Well, I don't know how your recovery will go, Dad, but if you are stuck here what do you think would make that more tolerable for you? What would you want to do about the house and your things if your doctor says you can't go home?" Allowing him some agency is itself a kindness.
posted by shadygrove at 8:26 PM on January 24, 2020 [1 favorite]

Response by poster: Many thanks for all the warm, supportive, and helpful responses. This morning my dad told me he’s getting worse week by week and will never go home. This afternoon he told me he thought he would get better and be able to return home. Luckily, and miraculously, my dad’s landlord has decided to rent to his housemates so my dad can go home if he actually ever gets healthy enough to return. He won’t, but this means his housemates will still be able to visit him and he can still imagine a future at home as long as he chooses. Thanks again for your collective wisdom and kindness. Every answer was valuable to me.
posted by Bella Donna at 7:40 PM on January 26, 2020 [2 favorites]

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