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She’s been in MC for two months now. Every time I visit, several times a week, she wants to know when she’s going home. Other times she lets me know she is NOT staying much longer. Because I had read its best to be evasive, I tell her that the doctors are adjusting her meds so that she won’t be so confused. Some people tell me I should just come out and tell her this is your new home. I really don’t know which way would be best. I’ve told her several times that she had had strokes and it has effected her, she forgets. She can forget something in five minutes. I feel telling her every time I visit that she is not going home will just keep her agitated. Mom has always been very controlling and a difficult patient. Always expecting everything to be her way. Please share your thoughts, I just don’t know what to do.

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There are differing professional opinions on how one should respond to “wanting to go home”. Where is home? Is it a specific place? Is it a mixture or mingling or several places? Is it not even a place but a remembrance of a happy time in your mom's life? To someone with dementia, it may be none of these, but more so a feeling of comfort, security, and safety. Even if you could actually take your mom back home, wherever that would be, she would not recognize it and still be confused. So her need to go home may really be a feeling of anxiety, discomfort, confusion or not feeling safe.

Some experts say that honesty is the best policy. BurntCaregiver has a great story of what can happen when you tell the truth. Read her reply to LoopyLoo on July 18. The truth can cause an immediate traumatic reaction for a LO, and result in a more rapid advance in the dementia symptoms. Of course her situation is different, but the LO's reaction can be similar. Simply telling them they are home may cause them to deny that this is home and become argumentative.

On the other hand, some clinicians say it's better to answer with some creative fibbing, so as not to cause a traumatic reaction. But your mom may not over react to being told this is her new home.

So with that said, and all the various posts and options you've rec'd, you still have to decide for yourself what to do. She's going to continue to ask no matter what you say, and you will continue to have to answer, so I would choose the option that will give you the least angst, if that's even possible.
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Reply to sjplegacy
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I would give it longer. My Mom really didn’t get oriented until 3 months in, and didn’t start settling in to a routine until 4-5 months. What about telling her that until they get things sorted out with how her strokes have affected her that you chose the place she liked best, and will this be ok for now?
My Mom believes that she looked at all the places we considered (we did drive-bys) and I just kind of ran with and embellished that assumption, and when we talk it through— are the staff ok?… food is good?…this was the nicest place we looked at…—then she kind of works herself around to accepting it. I do offer that if she truly doesn’t like it, I can start to look at other places, which makes her backpedal. For her, being in control is a big issue, so I offer options. What does the staff think would be helpful?
Clarification: Mom is in the AL side of a dementia focused facility, so she does have some autonomy, and she did want a place of her own prior to her move, so the underlying mindset may be different.
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Reply to ElizabethY
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I think being evasive and deflective is the best kindness. My mom now forgets things within minutes if not seconds but 90% of our talks she wants to know when she is leaving, how, where, etc....her great plan is to come ‘sleep on my floor’ and ‘sponge off on you’. She tells me she is in prison etc...etc....it’s not awesome to say the least and virtually every single time we talk, which is most every day, I make something up. Usually along the lines of ‘you’re in a temporary’ place, or, ‘that’s a lot to figure out, we don’t have to worry about that today ‘. Another magic word seems to be ‘pre-arranged’. Like, ‘Don’t worry, everything is pre-arranged’ Then I try to deflect to animal stories or chocolate ( doesn’t always work but worth a shot )

Then she forgets what I said so it’s Groundhog Day all over again. but mom lives in the moment so I figure let’s aim for better moments for BOTH of us - which means I fib daily. But these fibs prevent worse moments so why not?

You’re doing the right thing! I think there is just no way to feel good about any of this. Sometimes it’s about picking the least lousy choice.

big hug!
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Reply to Madisoncuckoo7
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Mom in AL for a little over 3 months. She still wants to go 'home'. Luckily for me, she remembers that she sold her home, so I just tell her every time, I'm looking for a place for you, Mom, but you need to stay here until we find the perfect place. This seems to relieve her some, although she will fuss at me about not looking hard enough! I think she actually knows somewhere deep down in there...that she won't be going home...but it's sort of like a broken record...she just keeps saying the same thing...perhaps because she can't think of anything else to say...you know?? She has started on the Seroquel (due to excessive agitation and constant pacing, which is super hard on her hip replacement and causing her ankle to swell) and I do believe that has helped her calm down. My Mom is the most impatient person I have ever known, so I take my daughter with me and she starts talking about something and then all of the sudden my Mom is bored with it not being about her, and she's ready for us to go. If you don't laugh, you'll have to cry....I wish you the best on this journey!
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Djntx22 Jul 20, 2021
This sounds so much like my mom. She refused to go to the doctor about her memory issues and how she was feeling before she ended up going to the hospital. For four months she complained of feeling like she was going to pass out( most likely lack of oxygen to her brain), my dear sister that was living with her was run ragged. Mom wanted her by her side every waking moment, which was 24/7 with just brief cat naps. She refused allowing my sister to hire help. We called hospice out, she refused their help. It got to a point she told us her brain wasn’t working right, she was seeing people, children, animals, and more. We called an ambulance, at the hospital they ran tests, MRI, pet scan and said it looked as though she had multiple dementias. We then placed her in memory care, my sister was close to nervous breakdown from caring for her, she has PTSD, living in fear of being put back in that situation. I just never know how long I can get away with saying they are adjusting your meds. I realize that she forgets, however she gets very angry and says she’s leaving it’s taking too long, she wants to go home. She too paces, suffers from extreme agitation, at times given serequile as needed. I wish I could come up with more ideas of what to say to her. Thanks for the support!
DJ
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If your mom forgets something five minutes after it happens, what good can come of telling her she's never going home?
Telling her that will just upset her then she probably won't remember why she's so upset and agitated. That kind of upset can really set her functioning level back too. Not to mention making the jobs of the people who take care of her at the MC a lot harder.
I know it's hard to not tell her the truth but it's for her own good.
MJ1929 makes a great suggestion about putting it on the doctor about having them clear her to be discharged.
If you can distract and deflect her when she starts asking about going home, a therapeutic lie is the right thing.
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Reply to BurntCaregiver
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Put the onus on the doctor. "When the doc clears you, we can plan to go home."

Deflect, deflect, deflect.
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Reply to MJ1929
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My mom has been in mc for about 9 months. It’s so hard. She is always asking when she can go home. It’s probably one of the hardest fibs for me. I try to answer I don’t know or the dr hasn’t said yet. She’ll say call the dr and find out. I’ll tell her ok, or dr’s on vacation, or you have an appt in a couple of weeks. These answers were suggested by her dr.
Sometimes she says you know I want to go home, I keep it simple and say ok, I know, and change the subject. I know it’s the hardest thing, the guilt is real, but I know it’s best for her.
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Djntx22 Jul 19, 2021
That’s exactly how it is with my mom. In the back of my mind I feel like she’s not going to keep excepting that answer, that they are adjusting her meds. I do realize that she has no concept of time and does not realize how long she’s been there. I want to thank everyone who’s answered so far it’s reinforced my decision not to be “honest” with her.
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No. She won’t remember you told her it’s permanent. And in that moment you do tell her, it can be traumatizing.

When my friend’s MIL with dementia kept asking where her dead husband was, they’d tell her he’s in Heaven. She’d immediately burst into tears, like hearing it the first time. After that, husband was “at work” or “at the store”. She’d keep asking but it at least stopped upsetting her.
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BurntCaregiver Jul 18, 2021
LoopyLoo,

I had an old dementia client whose husband died. She couldn't be taken to the funeral and we told all the people who were coming to visit to please not express their condolences her or mention anything about it. We even kept the large-spray funeral flower arrangements out of her sight so she wouldn't ask about them.
Everyone did great and were careful to not mention her husband dying.
Except for one friend who showed up to visit her about a month later. She came in with tears in her eyes, hugging my client and saying how sorry she was.
My client was hearing it for the first time because she had pretty advanced dementia.
She got hysterical, crapped herself, and her friend left. This set her back for several days because she was upset and couldn't remember why. We had a terrible time getting her care, feeding, and medications done.
It's best not to tell them. When she'd ask about her husband we'd tell her he went to visit their son who lived in another state. Or that he was still in the rehab for his broken leg (which happened about 40 years before).
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You are not being “evasive” when you reassure her by deferring her train of thought. You are being kind and thoughtful and you are accepting her as she is, in her illness.

The people who say you should tell her THE TRUTH may never have “lived” with someone experiencing dementia and experiencing resettlement in new surroundings.

Sometimes “going home” lasts for several weeks to a few months, but ultimately her MC WILL become “home” for her.

I wouldn’t bother to talk to her about the past, including the strokes, and it’s totally useless to discuss not going home.

Your safest course is to be where her conversation goes, state clearly and concisely why it’s not happening today (see some sample below) and move on to a different subject.

”I had the floor refinished in all the bedrooms and we can’t walk on it yet”.

”The lawn was treated for beetles and it’s toxic for the first 24 hours”.

“The neighbors said they’re having a party and we wouldn’t be able to sleep because of the noise”.

”The road is being resurfaced and it would be too far to walk”.

Literally ANYTHING that comforts her and gives her a sense of peace IN THE MOMENT. She will be likely to forget what you’ve said quickly, but the anxiety will have passed, at least for the moment.

If there is a geriatric behavior specialist associated with her AL, you might want the therapist to see her. A trial of a small dose of a medication(s) may be very helpful.

For your own comfort, remember that she is NOT living with the personality that she had before she became ill.

Most of us have gotten through this to the other side, and you will too.

Hope you and she soon find peace in her knew surroundings!
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Djntx22 Jul 18, 2021
Thank you Ann. I had read before I placed her in memory care that it’s best to be evasive and just come up with excuses, not to keep telling them that they can’t go home. What throws me is that some of the memory care people who give tours tell me it would be better for her to know that this is her “new home,” they feel she will start to accept it as home and start participating in activities. However my mother is not the social type. The other people in the memory care are in way more advanced stages, they scare her. She doesn’t want to be around them. On top of that she has Parkinson’s like symptoms, she doesn’t really get up and about that much. Just an occasional walk around the facility. I just don’t see the point in telling her that is permanent, it would be devastating for her, she would also be madder than heck! She’s a real fighter. Like I said her memory is so bad she would forget very quickly. Why put us both through it. Again thanks for helping me to not second guess myself.
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I think it is perfectly moral and ethical to tell them a therapeutic fib about their stay if this keeps them in a calm state of mind. If they're in MC it means they don't remember, so even if you did tell her the truth on one visit -- and she got upset about it, which she most likely will -- then you'd have to replay this every time you visited her because she's going to keep asking (for now into the foreseeable future). I'd tell my LO something that would satisfy them in the moment. Your LO can't process the truth, so I believe it is cruel to do this to someone. I realize that telling a "lie" doesn't feel like a mercy, but in these cases it is. This is certainly a hard emotional thing. I wish you peace in your heart as you decide how to handle it.
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My 95 year old dad has been in memory care for 5 months and he still asks about going home. There is physically no way for him to do that and we are preparing the house for sale - he hasn't lived there in almost 2 years. (It is not wheelchair accessible.) I've been told to change the subject but he is persistent. I usually just tell him that his needs are greater than what could be given at home and that the people in his facility take good care of him. Although you can't reason with a dementia patient.
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