I keep thinking she'd be safer in a home and then hating myself for thinking it. How do you actually know when it's time?

#1stephen_58(Joined May 2026 · 5 posts)August 18, 2026, 11:05 pm

Some of you will remember me from the thread about shouting at my mother in June. Things did not get better in the way I hoped and I have a different question now, which I have been avoiding typing for about a month.

She has started getting up in the night. Not once, most nights. Twice last week I found the front door on the latch at three in the morning and once I found her in the garden in her nightdress looking for a cat we have not had since 2019. I have put a chain on the door which I gather I am not really supposed to do, and I now sleep with the bedroom door open and wake up at every creak, which means I do not really sleep at all. I am on four days at work as of July and I am worse at it than I was on five.

And here is the thing I actually want to ask. About twice a day now I catch myself thinking she would be safer somewhere with staff and a night shift and proper doors, and it comes with a sort of relief, and then about ten seconds later I feel physically sick for having thought it, because she is my mother and she asked me, when she still could, never to put her in a home. She said those words. I said I wouldn't.

So how do you actually know? Is there a point where a doctor says it is time, or is it just me deciding I cannot do it any more and dressing it up as being about her safety? I genuinely cannot tell which one this is.

#2dee1972(Joined Apr 2025 · 24 posts)August 19, 2026, 7:15 am

Nobody says it is time. I have waited two years for somebody to say it and it turns out they were all waiting for me. That is the first thing to know.

#3tomsdaughter(Joined Jan 2025 · 31 posts)August 19, 2026, 7:40 pm

Stephen, I have been where you are on the door chain and the open bedroom door, and I want to say something about the promise before anyone gets to the practical part.

Mine made me promise too. Everybody's does. What I eventually worked out, and it took me a long time and a lot of sitting in the car, is that the promise she asked for was made by a woman who was imagining a version of a home from thirty years ago, and imagining herself as she was at the time, and imagining me as somebody with a night shift and two spare pairs of hands. She was not asking me to sleep in a chair at my age. She did not know that was what she was asking. I do not think that cancels the promise, but it does mean the promise is not quite the thing you think it is.

The practical thing that changed it for me was a respite week. I booked it as a break for me and I think secretly as a test, and it was awful and also useful in a way I had not expected. She was not happy. She was also, for the first time in a year, not on a floor at four in the morning, and I slept, and I noticed on about day four that I had stopped waiting for the sound. Coming home from that was information. Not a decision. I still have not made the decision, and she is still here, but I know what the other version looks like now and it is not the thing I was frightened of.

The bit I would push back on is the framing of "me giving up, dressed as her safety". Those are not opposites. You not sleeping IS her safety. There is nobody else in that house at three in the morning.

#4Dr Nadia FarhatMedical moderator(Joined Nov 2024 · 54 posts)August 20, 2026, 12:30 pm

Stephen, I will answer the direct question directly, and then I will say something about what you have described, because there is a clinical point in it that matters more than the philosophical one.

There is no threshold at which a doctor says it is time, and I would be cautious of anyone who offered you one. What a geriatrician asks is not whether the person is bad enough. It is whether what they now need can be delivered safely, every day and every night, in the house they are in, by the people who are in it. That is a question about needs against resources, not about severity, and it is why two people with identical dementia can have opposite answers. The needs that most often cannot be met by one person at home are moving and handling that takes two people, waking nights on most nights, leaving the house unsafely, repeated falls with injury, and the carer's own health giving way. You have described two of the five in one post, and the second of them, night-time exit-seeking, is one of the very few that a single carer genuinely cannot make safe alone for long, because the only tool you have is your own wakefulness, and that runs out.

Which brings me to the clinical point. You describe this as having started, not as always having been there. New night-time wandering, with a change over weeks, deserves a proper look before anybody treats it as the dementia simply progressing. Pain, an infection, constipation, a medication changed or added, poor sleep in the daytime, and low light in the evening all drive night-time disturbance and all are treatable, and a person with dementia is more vulnerable to every one of them. Nothing in that list is a reason to decide where she lives. A change over hours or a day or two would be a same day call to her own GP; a change over weeks is a conversation to book this week, and the phrase to use is "new night-time wandering, and I want the treatable causes looked at". Say what she was like in June. Her own clinician knows her and can examine her; I cannot, and nothing I say here is about her specifically.

Three things on the decision itself, if it comes to one. First, the guidance on hospital discharge, NICE NG27, says plainly that people should not have to make decisions about long-term residential or nursing care while in crisis, and the most common way this decision gets made is exactly that: from a corridor, after a fall or an admission, under bed pressure, about somebody who is not at their baseline. The value of having the conversation now, while nobody is in crisis, is that a temporary or respite arrangement can be a trial rather than a verdict. Second, capacity. If your mother can still understand and weigh this particular decision, it is hers, and a refusal she is able to make is not overridden by your exhaustion, however real that exhaustion is. If she cannot, it is made in her best interests through a process that includes her earlier wishes and your views, and you are a consulted party rather than the sole decider. That is a relief for some carers and an affront to others, but it does mean the weight you are carrying is not legally yours alone. Third, the door chain. Restricting somebody's ability to leave is a legal question as well as a safety one, and there are alternatives, from door sensors to night sitting to changes in the evening routine, that an occupational therapist and a needs assessment can put in front of you. Ask for both by name.

On the guilt, which is your actual question. The thought "she would be safer somewhere with a night shift" is an accurate observation about staffing. It is not a wish to be rid of her. Carers experience those two things as the same feeling, and they are not. When home care is no longer enough sets out the five needs, the sums, and who decides, and it was written for the night you are describing. And your own sleep is not a side issue. A carer who has not slept properly in a month is a clinical fact in the assessment of what this household can safely deliver, and it belongs in the conversation with her clinicians, said out loud.

#5K. McAllister(Joined Nov 2025 · 11 posts)August 22, 2026, 4:05 pm

The American angle, since the money here is the thing that makes people decide before they are ready.

I toured three places last year, in secret, on a day my mother was at the day program, and I felt like a criminal doing it. I want to say to you what I wish somebody had said to me: touring is not deciding. It is finding out what the other version costs and looks like, and it took a lot of the fear out of the word. Here a memory care unit was quoted to me at nearly double what home care was costing at the hours I was then buying, and that number did more to settle my thinking than any amount of guilt did. At the hours I would need if she started getting up at night, it flips the other way. So the answer changed with the hours, not with her.

She is still home. The tours are in a folder. Some weeks that folder is the thing that lets me keep going, because I know it is there.

#6stephen_58(Joined May 2026 · 5 posts)September 14, 2026, 9:50 pm

Update, nearly four weeks on, and no tidy ending, which seems to be my thing on this board.

I rang her GP and used Dr Farhat's phrase more or less word for word. It was an infection. Not a dramatic one, but there, and she is on something for it, and the last eight nights have been quieter than any since June. I am not reading much into that, because the nights before it started were fine as well and it still started. But it was not "just the dementia" and I would have assumed it was.

Needs assessment requested, booked for the second week of October. Occupational therapist referral in the same call. And I have booked a respite week in November, which I told her was a holiday for her and which she has not spoken to me about since, so that has gone about as well as Ron's did.

The guilt has not moved. I still think it twice a day and I still feel sick about it. What has moved is that I now think of it as a sentence about staffing rather than a sentence about me, which is Dr Farhat's line and I am borrowing it until it is mine. The chain is still on the door. I am told somebody is coming to talk to me about that.