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LINDA165 Asked May 2021

Will my mother ever stop asking when she is going home from memory care?

Over a year ago we got final diagnosis that my mother had emerging Alzheimer’s with very high anxiety. She lived alone and I lived nearby. My mother was given many different medications over this time period to try and calm the anxiety but nothing worked well. I got services in place and had aides during the day, no one at night as it was too costly. I stayed many nights until it got to a point when I couldn’t function myself and couldn’t leave her alone. She constantly said she couldn’t breath and had anxiety attacks. She wouldn’t listen to the aides and called me non stop all day while I was working. She had very bad OCD tendencies that made every aide have a difficult day. At the end my mother called 911 a couple of times within a week and by the last time we had her moved straight to a MC facility that my sister and I picked out ahead of time.
I feel overwhelming guilty as my mother never said a proper goodbye to her home of 50 years. She is now doing better with anxiety due to yet another med change as well as being surrounded with care people so therefore not so scared. However, she begs to go home daily and wants to know when she is leaving. She seems so much more lucid now but as your visit goes on with her you know she has short term memory loss. It is unsafe for her to live alone, myself and my sisters cannot live with her. She cannot afford 24/7 care at home. I feel terrible everyday as we clear out her house to sell so we can pay for MC.


What can we say to my mother so that she tries to adjust to her new home? I want to visit her more often but find it very stressful lying to her and spending most of my visit talking about her wanting to go home. I know she is safe here but still feel like I am failing her by not following her wishes. I am an emotional wreck most of my days and can’t get through selling the house. How am I to know I made the right decision? Will she ever adjust? She’s been there 2 months.


Thank you all for listening.

Kantankorus May 2021
You may be placing too much emphasis on your mother's pleas to return home as they may be simply another OCD association with every time you visit - your appearance could be determining the same response by default.
While her concerns may be real, they may not be as ever present as you suppose (- that part rests within YOUR psyche). Sometimes it gets stuck in a loop from some trigger which does cause anxiety but often from the incongruous juxtaposition of disparate memories (the same happens in wanting to see long lost or long since passed loved ones). Acknowledge the comment and change the subject to happier thoughts - it is you who is being tortured and this can play on your mind unduly.
Be at peace with yourself as her placement was not of your making but out of necessity and concern for her safety. I do the same for myself as my father declines toward his own placement in a facility. Ultimately it is his determination when home care is no longer viable - and he won't need to say a word. I will act in his best interests as 'needs' overshadow 'wants'.
BTW, 2 months probably feels like a few weeks to your mother - you, on the other hand feel the full torment every single day. You are a loving daughter - be kinder to yourself. Your regular visits to your mother is worth so much more than the house which is now being put to better use in serving her needs.
LINDA165 May 2021
Thank you so much for your kind advice. I will take it to heart.
BarbBrooklyn May 2021
There is a point with dementia patients where there is no "good choice"-- just the least worst one.

You can no longer give your mom what she wants, but you have gotten herr what she needs. She is doing better in this new environment, with more people around and better meds. THAT is cause for celebration

"Mom, the doctor says it isn't safe for you to live at home any longer". That's not a lie, is it?
LINDA165 May 2021
Thank you. Yes that is out go to phrase. I’m sure I’ll feel better as time goes on

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Abell01 May 2021
I’m sorry. I understand your pain. I have been battling the same guilty demons. My mom fell and broke her hip and had to be moved out of her house. With dementia and a broken hip she needed more care than I could provide working a full time job. She asked me many times a day when she was going home and I explained every time that this is your new home and cried all the way home. I beat myself up thinking I should have never moved her out of her house, maybe she would have healed quicker and better in her house. It has been just over a year now and she is finally adjusted, settled and doing so much better. Just this past week I was looking back at that difficult time thinking it would never pass. But it did. And it will for you too. My prayers are with you, stay strong.
LINDA165 May 2021
Thank you. I am glad your mom has finally adjusted
texasrdr22 May 2021
After 5 years of personally caring for my 91 year-old mother who has moderately severe dementia, I made the agonizing decision to place her in Memory Care. I found a lovely, highly recommended facility about 5 miles away from my house. She has been there 2 months now and seems to have adjusted nicely. She is never in her room (I have a camera) and seems to have made some friends, The day we took her there, we told her that her doctor said she had to be there and get stronger. She said she was “not going to spend the night”. When I left her that first day, she was sitting at a table with others eating a snack!! I visit at least 3 times a week and when I leave, she walks me to the door, we hug and I tell her I will be back soon. Mind blown!! She has aphasia and can not really speak in understandable sentences, but she is sweet and kind and all the caregivers adore her.

is everything perfect? Absolutely not. The laundry folks have lost some of her clothes (all clearly labeled). It took a month before they gave her a shower even though I continually asked why there were never any wet towels. I have taken over her laundry since the first week so I know there are no wet towels in the laundry! A lot of things that they promised they would do for Mom in the way of care (podiatrist, physical therapy, dentist, etc) have not happened. Communication is not happening from them to me. Seems I am always on the phone to find answers to my questions.

We are currently paying about $6k per month and Mom isn’t even there! She fell hard and broke her hip last Tuesday and is still in the hospital a week later. We are not sure that her facility will be able to provide the level of care she will need. Depends on how rehab goes.

I think I made the right decision for Mom. She now has a schedule, 3 meals a day and others “like her” around for socialization. I hope she is able to return there after rehab.
LINDA165 May 2021
I am happy for you that your mom adjusted so quickly. Time to be a daughter again
IamAmy May 2021
As to the guilt about her not saying a proper goodbye to her home, she wouldn’t have been able to say goodbye with her decline while she was still at home. It isn’t necessary that she say goodbye to it all. I understand your sadness at this but you should not feel guilty. She was spinning out of control and likely becoming a danger to herself or others. Do you tell her the truth about going home? I don’t say that’s the answer because it probably isn’t but have you tried that? “Mom, this is your home now. I know you miss your old house but this is where you live.”
She may never stop asking about going home. My dad still asks when he’s going home (to the house he was born and raised in) and he is still in the home he bought 40+ years ago.
My dad also has OCD and his obsessions come in endless questions repeated over and over. Right now his obsession is about going “home”.

cweissp May 2021
I'm sorry for your stress. It is hard. While it is hard, you have nothing to feel guilty about. You are making the best choice of a lot of bad choices - so please take it easy on yourself. If the facility she is in, takes care of her and keeps her safe as possible then she is in the right place. You are still her caregiver - you are there to love on her and advocate for her to make sure she is getting the care she needs, difficulties are smoothed over and make sure issues that arise are addressed by the facility. Instead of you and a few in-home aids, she now has attention and care by a team of caregivers 24/7.

As far as her returning home, she may ask that for years. Tell her she is in a new home, that her Doc said it was unsafe for her to live in her home. Then try and direct her attention elsewhere if possible. A friend of mine told me a story of her mother in a care setting always telling her caregivers that her husband (who had died years earlier) would be by to pick her up and take her home. None of the caregivers disabused her of this idea.

Hopefully your mom will adjust to her new home and be distracted with activities and new friends. I wish blessings for you and your entire family as you journey though this new phase of your mother's live.

disgustedtoo May 2021
"What can we say to my mother so that she tries to adjust to her new home?"

You indicated it's only been 2 months. This is common. Some adjust, but often home becomes some other home in the past. There really isn't much you can say to get her to "adjust", and she won't remember what you said!

"I want to visit her more often but find it very stressful lying to her..."

Please don't call it lying. We often suggest therapeutic fibs and then work on redirecting focus. Always blame someone else, like a doctor. You can tell her the doctor wants her to build up strength and eat healthy for a while. Leave the "potential" return vague, esp if you use the doctor excuse. Soon. When the doctor feels you've recovered. Something like that, then change subject.

"...and spending most of my visit talking about her wanting to go home."

This is what you need to learn to avoid, or get around as soon as the topic comes up. Change subject. Suggest a walk, snack, beverage, bring small gifts like magazines and get her interested in these, to get her focus off "home."

"I know she is safe here but still feel like I am failing her by not following her wishes."

No, no, no, no, no, you are NOT failing. It wasn't safe for you or her, or financially feasible to allow her to remain in her home. Sometimes a parent will ask their adult kids to promise to keep them home. One should not agree unequivocally to this. Say I will do my best until it's no longer safe for you or me to do that. Some adult kids feel it's the only "right" way to do it.

You didn't say how often you visit, but perhaps you should cut back for a few weeks. Maybe go once/week, with small gifts in hand to distract her, pix of various relatives or places you all went on vacation and reminisce with her. Avoid any with images of the house or rooms. Bring fav beverages and/or snacks to occupy time and keep her focus off the home.

"I am an emotional wreck most of my days..."

You are beating yourself up unrealistically. You KNOW that the situation was untenable. Both you and she were suffering trying to maintain her at home. You also have seen improvement. While the medication likely helped some, understand that at any time she will regress more and make it even more difficult for you to provide the care needed. She is in good hands and is doing well physically, so take that as a positive sign. YOU are beating yourself up for being unable to control the situation, but there's no way to control it.

The going home request happens often, to most people who have to move to MC/facility. Over time, "home" can become any number of places in the past. First 9 months in MC, my mother hounded YB to take her back to her condo. Out of the blue, her requests became focused on her mother (gone 40+ years) and our previous house (sold 25+ years prior.) I could tell by various comments that she was "living" at least 40 years ago. It's mostly the dementia talking. I am sure that most of our LOs who end up like this would NOT want to be doing this to us, were they not being directed by dementia.

Take a breather. Learn how to "redirect" your mother. Get her focused on something else and don't discuss "going home." If she asks, one response saying it'll be when the doctor feels you are stronger and then work like hell to get the topic onto something else. If you allow the discussion to continue, it will only agitate her and upset you.

"How am I to know I made the right decision?"

You KNOW deep inside it was the right decision.

"Will she ever adjust?"

Some never really do, but generally most will forget as they drift back in time. More and more recent memories are forgotten and only the longer term memories will still be there. Eventually even those will get lost or confused.

It took my mother 9 months to forget her condo of 25+ years. Over time she even forgot that, or at least the topic didn't come up. Keep her "busy" talking about other things or doing activities with her when you visit.

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