Mom not adjusting to “temporary stay” at Memory Care. Staff wants to stop fibs and say she is staying. How can we ease her transition?

One thing to keep in mind is change is hard at any age but add dementia on top of that. I’m not sure if the memory care place your mom is at looks like a hospital… hospital bed, etc. Some people relate to being in a hospital as being sick and my mom was convinced she was not sick. Add the confusion of someone always coming in with “meds” and not understanding this new environment. I think we’d all “want to go home”.

My mom didn’t settle into memory care either and it’s still a work in progress. In the first month, my mom was packing her suitcase and any shopping bag I had brought in with clothes. I found that taking her suitcase away and asking her if I could borrow her shopping bags at least stopped the packing. Also, if you’re having issues with her getting upset because she wants to “leave” with you, I found either having care staff distract her when you’re about to leave or I tell my mom I have some errands to run but I’ll be back soon, helps take away the distress of “being left behind”. I avoid saying goodbye to my mom at all costs.

I really feel for you. It’s an adjustment not only for your mom but for you and your family as well. There’s a great book that really helped with suggestions for me and it’s called “creating moments of joy” by Jolene Brackey. The chapters are small and you can flip to any part of the book for guidance. It helped me understand a bit more.

Good luck! This stuff is so hard to navigate through. You are a great carer and advocate for your mom.

This is going to sound terrible, but once I knew my mom was safe and cared for, I stayed away for a couple of days because I was exhausted. I also thought she should get used to the routine at the nursing home without me popping in randomly. When I went back to see her, she was all settled. She said, "I can't believe I had to go so many miles away from home to find such nice people." (I did have to move her from her home state to mine.) Then, she gave me the biggest hug she ever gave me.

Often this is a 'figure out as you go along.'
At times, the hard reality is there is 'no easy' or easing in for this kind of adjustment.
- Expect she will continue to express anger, frustration, disappointment at you/the family. She is confused and scared - perhaps getting varying information from different people/staff - or it is simply a matter of her wanting to go home and focused on that.
- While easy to write, not easy to do: Do not take her responses personally and try to emotionally/psychologically detach yourself from her reactions.' This DOESN'T MEAN to not feel compassion and caring for how she is and how she feels. It means to give yourself 'room' (a buffer) to be more present with her due to not taking in / absorbing her frustration, while taking care of yourself, TOO (important).
- And, then it would help you to realize you are GRIEVING this situation, her loss of independence - so allow yourself to feel the grief - and perhaps talk to a social worker (on staff) and/or get a therapist to help you through this period.

I know this sounds like a very tall order (above) if not contradictory.
The key is to figure out how you can function for you - and to be there for her, which means knowing what / when to let go / and when to be present.
I know this is what you are asking us ... how to ... what to do?

I think we all need to find our own ways which certainly is not easy at all.
We stumble, make 'mistakes' (in our loving intentions) ... they aren't really mistakes ... most of us are on a path without any preparation, education, or knowledge of how to proceed. Coupled with that, we are EMOTIONALLY connected so it isn't 'just' academic.

* Lean on friends and support (church, networks, therapy / therapist).
* Hire an ind med social worker and see what s/he says.
* Get volunteers to visit as a way to distract. (Caregivers are wonderful, although a volunteer is different)

What I might tell her-
- The MD wants to observe her for a couple of months (not 90 days). That is mostly true.
* Expect she'll say NO and insist on going home.
* And know that its OKAY to say, I don't know now ... I don't have an answer to that ... I am working on it" ... "that's a really good question." This is being honest.

Know when you can use logic (if at all) and when you can't. Like explaining why she can't go home. It causes a 'tug of war' - I'd suggest:

Using REFLECTIVE LISTENING into your communications / conversations:

You say "I hear you want to go home ..." [then stop]
You do not argue; you do not agree or disagree.
You let her know you are listening to her.
You try to RE-DIRECT / change the subject / focus.

If I were you, I would get a book(s) (and google / You Tube) elders in memory care with OCD or words like that and see what comes up. TEEPA SNOW is also an excellent website / webinars as she is one of the country's leading experts on dementia and how to communicate with those inflicted . .

Using reflective listening, non-verbal communication, re-directing is key.

And, be kind to yourself. This is very hard with no cookie cutter answers.
No one has 'THE ANSWER' - we figure it out as we go along. And, she hurts and will continue to hurt - until she adjusts to her new environment.

If my mother, I would try to get medication to deal with the OCD.

Gena / Touch Matters

I know a lot of you will not agree - but IMO we live is sad, sick society that embraces what is essentially imprisoning vulnerable dependent people (often with people who are far worse mentally), instead of caring for them. Barring extreme situations, families should be caring for our elders, whether they have dementia or not. Ask yourself this: If it was your child, would you institutionalize him or her? If not, why are you institutionalizing a spouse or parent?

In any case, I would be honest with your mom if she is capable of understanding. Failure to do so is a betrayal of trust. If there are alternatives, provide her the options.

Thanks everyone, such great feedback and clearly a common challenge many of us have to work thru. We are taking it day by day. My brother and I are both uncomfortable telling her this is permanent at this time. Visits vary day to day, some good, some not as good. I work hard to go in with distractions prepared, old pictures, UNO, bring my dog, etc. I brought her brother for first visit yesterday. She knows his face and that he doesn’t live far from her, but not who he is. As we looked at pictures she was surprised she had 2 brothers, and she said your my brother? You knew me when I was a baby? Last week she was saying she was there another month, yesterday she said she was leaving today. She is definitely less agitated with the medication. I spoke with staff yesterday and she continues to participate in every activity, front row lol. She does ask when she is leaving between activities but not as persistent. It is progress. I know she is safe and I do think all the activities are really good for her. It was a necessary decision. I would not have described my mother as a happy person at home, so I don’t expect her to be happy here, but hope we can get to a point where she is comfortable. Thx

How well do you know your Mom? When she was fully capable, how did she want to handle bad news? Was she the "just tell me the bottom line" kind of person or did she see the world in dreams and flowers? I would use her previous preference as a guide on what and how to do.

Another aspect is that if you have billed the stay as a temporary stay, of course she is going to ask you to go home. Of course she is going to have all her things packed up. You would too, because the stay is temporary.

With dementia and staying in an institution, time is warped. Just think of yourself on a cruise...they have those rugs in the elevator that tell you what day of the week it is, for a reason....because you lose all sense of date and day. That is maybe what she is going through. I went though a little bit of confusion about dates once I retired because I did not have any "day of the week" markers so I totally get how easy it is....and I don't believe I have dementia yet...

As for being ocd, in working with a lot of retired folks, ocd seems to be the general ailment that we all have. I have my own theories as to why elders (of which I am one) are more ocd than in our younger years. On the other hand, I also wonder if it is my peer group that I hang with.

In either case, now as I'm writing this all out, I'm thinking that you may need to level with your Mom, in the way she has handled news in the past, that she is there permanently. Then I would help her make the adjustments to live there, including taking her out for car rides (put her in the back seat with the child-proof door locks). Make it look like being at the Memory Care center is a positive thing and visit her more. I suspect she is just really, really bored.

What are you doing with her home? I turned my Mom's place into a rental and told her it was to help with the costs of the MC. Whenever my Mom wanted to go back home, I told her "nope....we are making money off your home by renting it"....and that seem to make her a little more accepting of the MC.

Just some ideas. I don't know if there is a right way or a perfect solution. However, I do know, dementia or not, what the elderly people really want, especially those in managed care, is just to talk to someone, be heard....and to enjoy life. Ask your Mom, what would she enjoy doing now...and see if you can make some that happen. It is okay to say "no", however, use your creativity to see if you can make part of it happen. It is possible that all she needs and wants, is just something to look forward to.

I have been having issues with my dad at his memory care too. Probably about 3 weeks ago, my dad hit a couple people. I know that's the disease and Sundowning. When that happened, they were going to send him to a hospital outside our county. The paramedic called me and told me where they wanted him to go. It was the week of Thanksgiving. So for close to a week, he spent it in the ER I put on the contract. He had just been released that day for a med check. They did a psych check I guess this time. In December, the hospital admitted. The following day, they released him that Monday. A couple days later, he had an appt, and I found out that he had fell sometime. I never got a call about that fall. At that time, this was from Dehydration. Then the following week when he was discharged again, the doctor was all over me about Hospice. Like it was my fault I sent him there. His primary doctor wanted him to come. I stopped by last night after church. He was in bed. He has a full day with therapy and a party. Sounds like my dad is starting to get there. Slowly but shirkey. I hope so! I'm about ready to have a care meeting soon! That might be a good option for you too. I'm considering looking for another facility but not sure and it would be costly too.
Good luck!

So sorry you are going through this. I am going through the same. My mother is in a memory care unit and it has been two years. They have removed her clothing from her room, and lock it in an office closet. She has no comforts of home, photos, pictures nothing, because she insists she is not staying. Her confusion is on going, a long with a warped sense of time which causes more anxiety. She doesn’t even know where she sleeps every night. This is truly the most heartbreaking thing, and I never wanted this for my best friend. They keep trying to adjust medicine and we all hope for the right combination. I dont know when this will change. You cant transition if you’re in denial that there is anything wrong. I have good visits, and some bad. Hoping for the day I can take her out again without too much anger upon return. I guess I am seeking the same answers as you. Hang in there…

Not an easy k ok e for anyone

While her resistance may be difficult to manage, helping her feel heard and respected during this time can make a significant difference in how she adjust to her new living situation.
she may be feeling abandoned /isolated - maybe to reassure her you have not abandoned her and visiting but it isn’t safe for her to live at home
maybe she needs more personal things around her
I would speak to a doctor and hear how they recommend to handle the transition
maybe it’s the place and another might be better suited if possible
I think a doctor should be consulted
transitions for anyone are unsettling
even a child at a new school could cry themselves silly until they settled in and made a friend
maybe that’s the key
find a friend for her there
I recall a brother going to a new school when we were younger - first day
he stayed of course but mid morning thought I’ve had enough of this and left! The school was in panic - they didn’t see him leave - alerts everywhere while one ran to our house - and it was a good run distance to find my brother had just gone home - and my mother had let him in and made him something to eat!!
then he was taken back! And asked not to do it again lol
Sometimes the transition is quick- sometimes not - he made some friends then loved school

My mom also has dementia and had to move to memory care in February. It is best to be honest with her. Right now she is focused on when she gets to leave. She will adjust to staying. She won't stay mad if you just tell her the doctor said she needs to.
I know this is hard. I am my mom Legal Guardian. It isn't natural for us to become the parent. Just make sure you keep telling her how much you love her and only want the best for her.

Laurie

KCsMom: An individual with dementia does not have the capacity for logical thought processes.

How old is your mom? Does she use a telephone? Have many visitors? Make sure she doesn’t have others discussing going home with her if you have that type of control.

How long have the memory care workers been there? Would they be around long enough to even know if their theory worked? I find workers come and go. The facility is being paid to take the heat.

Do what you think is best. All dementia patients are different. At different levels, different personalities etc. it is truly not a cookie cutter world as much as we try to make it that way.

I bet if you interviewed a good number of the other patients about when they are going home they will tell you soon. (No one will thank you for doing that).

We have had other posters who reported their LOs are packed and ready to go home. Some of them ARE home.

At least your mom has some busy work to keep her occupied with her packing.

It has only been 6 weeks. Hold fast to the 90 days. It isn’t uncommon to take much longer to adjust no matter what you tell them. She has had a major shock. Can you even imagine?

Everyone in that place is going home at the end of their shift.
They can suck it up and defer to you. “ Your daughter is working with the doctors. “These doctors like to be very sure their patients are well enough to go home” or “I heard your daughter say the doctor wanted at least 90 days to make sure you are on on the right med. “.
Acknowledge her concern, then distract. ‘ Let’s go join in this activity yada yada yada.”
If she is able to learn as they seem to think, then she will learn to not ask them because they always say 90 days.

I’m glad the meds are helping today. Consider doing something for your own anxiety. It’s taken me three years to accept I have no choice but for my DH aunt to be in a NH. Therapy helps. I needed it to even go visit. And Aunt told me to go live my life. She’s an easy case. Another time I saw the realization on her face when I brought her fresh laundry. I would have preferred to be told to go to hell. Look at how this country is torn apart over rights. Everyone wants their rights…even the demented. But they aren’t getting theirs either.

And speaking of, I can’t imagine a worse hell than being in one of these places but the reality is we haven’t come up with anything better. With dementia they at least have a buffer. You and I are going in cold turkey and have to take it on the chin but we are leaving w/o them and that has to be enough for today. Time will dim the memory of a previous home. You should also give yourself 90 days to adjust before you tell her anything different.

For what it’s worth, I’m not that fond of social workers either. Have one in the family and she doesn’t have a clue.

The same with many facility medical staff who have worked with NH. They breeze in and out if you can see them at all. They don’t want to “catch old or demented” it seems.

Sorry I’m so negative. There just is no “one and you’re done” for dementia. Pro or con on this topic, it will simply take time.

And to make it worse, I doubt seriously that the memory workers don’t already say whatever they choose in the moment. And then close ranks when you try to get to the bottom of almost anything. But best to kiss their behinds and carry on. Bring them something nice for Christmas, etc.

Perhaps her home gets a leak next hard freeze or whatever reasonable delay you can think of. Lots and lots of damage. Mold etc. There are many things that require upkeep on homes to be discussed. But you know your mom best. Don’t forget that. For now I would be consistent on the 90 days.

Wishing you peace.

I'm so sorry you are going through this. Last year I was going through the same thing. My mom just turned 103 on Monday. It’s crazy !!! I've been taking care of her since 2008 when she moved to an independent senior living facility near my home. Fast forward through broken ribs, a fractured hip, fractured knee, 2 bowel obstructions and cognitive decline. She had 24 hr in home care and she still said she was fine... Last year it became clear from a medical and financial standpoint that she needed to move to a NH. We told her it was to get rehab and then we would see how she was doing. I told her in the morning that the doctor was recommending it. We put her in the car and we just did it. I really think it was the only way... I posted at this time last year because every time I visited she yelled and screamed that she didn't belong there and wanted to go back to her home.
I have to admit it was one of the hardest experiences of my life. I knew in my heart she was where she needed to be but that didn't make it any easier. My advice is to just keep telling her the doctor thinks she needs to be there, redirect conversation and smile. Over time she will adjust to the routine, start to participate in activities and hopefully be at peace. It took 9 months for mom to finally accept her living situation and that it was her only option. It was a long time of hearing complaints at every visit and it definitely took a toll on me but I knew with certainty that she is getting great care, eating regular meals, bathing 2x a week and receiving the medical attention she needed. I'm very blessed to have her in a great facility.
A book that was recommended on this site call Mother Lode by Gretchen Staebler is an excellent resource. Blessings to you and your family... try to be kind, loving and patient and know that there are many of us struggling in the same situation. You are not alone.

Things will most likely change with her adjustment, then change back, and change again. It's really just impossible to figure out the right things to do. I told my mom when she went to assisted living that she was going to live there. She got mad, but within a week she said she had been thinking to put herself there anyway, which was not true, as she didn't have the capacity to figure any of it out, but it helped her to think she was in charge. It was true that she had agreed to go, but then changed her mind about it. The day her caregiver and I took her she'd agreed. Over the years she'd sometimes think the facility was her house and wasn't sure why all those other people were living in her house. Sometimes when I'd visit she'd be ready to go "home", with a bag packed, waiting for me. I'd take her for a drive to the mountains and back to the facility. She'd thank me for taking her home. One thing that may help is to give her a choice when you can. For instance, would she like cake or brownies? Would she like to wear pink or tan today? Would she like to sit with Gladys or Mattie at dinner? Would she like the quilt or comforter on her bed today? Front or back porch for a little visit? If all the little things in life get to be her choice, the big thing about where her home is might not be so important. In other words, deflect and deflect and deflect some more. But I do like the fib of the doctor's orders and used it a lot. When she could still use her phone, though, she'd sometimes call her doctor to ask if it was true that he ordered her to do whatever it was I fibbed about, as there were times she was on to me, but mostly she'd agree to do what the doctor ordered. Good luck. I hope your mom settles soon.

You have to make decisions based on where the best care is for your loved one (LO). You cannot base it on what they think they “want or need” because they cannot understand at all what they “need.” You have to make decisions without their input. Make sure you have your POA in place for health and financials so you can make the best decision.

Please tell your mom it's temporary. Your mom has Dementia and she does not want to lose control over her life. Sorry, but you have to lie to them sometimes. I went through a similar situation with my mom. There is a fixation for certain things. Your mom will be fixated on something else. This will pass.

KCsMom This is exactly what I am currently witnessing with husband. We (our 2 sons and me) moved my husband into memory care about 6 weeks ago. I was very frank with him that I could not take care of him at home anymore and this is his new home. He is not adjusting well. Two nights ago he called 5 times in the middle of the night. I turned off the ringer after the first call. When I visited him yesterday, he did not remember calling. He wanted to know when he was coming home. I reminded him that this is where he lives now and that I cannot take care of him at home. He was obviously shocked at the "news". He appeared crushed. He said he thought he was coming home after he worked out a couple of issues. Even before the onset of Alzheimers his preferred coping style was denial. I was in charge of the unpleasantries in life.

I spend a lot of time at his memory care, getting to know staff and residents and the routine. I have observed that most residents cope in this way. While talking with one resident yesterday, she spoke of her boyfriend and their future plans, her nursing career, the sheltie they were going to get for their new place. I made a slight misstep when asking about her past nursing career. She corrected me saying she is still a nurse. I quickly recovered saying, "of course, once a nurse, always a nurse!"

Thanks to this forum and my recent experience with MC, I remind myself often that I am in the depths of grief as is my husband. Trying to deny the reality of it is a fool's mission.

I don't have advice for you. I just offer our story so that you know you are not alone and you are doing the best you can. When I think of many people with whom I have been acquainted that walked this path alone with their person in isolation, I realize we are very fortunate to be able to have memory care as an option.
You are providing memory care for Mom out of love. You are bearing the emotional unpleasantries out of love. She is lucky to have you as a daughter. May you find peace in this.

I was able to get my mom settled when I got her a companion. My mom is a nurse and MC is a lonely place because she could not talk to others and they could not talk to her in a way that made sense. She understands words and knows when she hears things that don’t make sense. I introduced the friend as a friend of mine and we visited together where I had to leave for a phone call. The friend asked mom is she could come back and now 4 years later, mom and the friend are content. Friend is not just a sitter. She does mom’s laundry, changes the bed, paints her nails, showers, lotions, takes her to the events, reads to her, talks with her, listens to mom and works 5 hours a day (lunch and dinner). When she leaves, mom is in bed with eyedrops and brushed teeth. The others in MC are not as fortunate as my mom and a few others-the one/one care has been provided by my mom’s husband who took care of her financially. It is so worth it for her to be in a bubble of bliss.

Your mother will be living out the rest of her life in a memory care facility. She's still an adult and based on what you say here, is not so far gone with dementia that she's an invalid.

Tell her the truth that the "tenant" you used to pay was a caregiver and you can't afford it anymore. Tell her that she can't live alone anymore and where she is now is her home now. It's good that she's a social person and takes part in the activities the memory care offers. If she's allowed to continue believing that she's only temporarily there, she won't let herself truly accept the reality that she lives there now.

Let me tell you something. I did caregiving for seniors with every kind and level dementia for 25 years. The lying is usually worse than telling them the truth.

There are harmless delusions that you can go along with. Like the one lady I worked for who believed she was secretly married to Elvis Presley. So we'd go along because it made her happy. Then there are the delusions that you never validate because that only fuels them. The ones about everyone stealing, or neighbors spying on them, or letting someone believe they're going home when they're not.

It's better to just take the reaction and vitriol they will throw at you. They may even turn on you. The anger and rage means they understand they're staying. Then they have a chance to acclimate to their permanent home and even have some quality of life there. They never do when they think they're going home.

This is so sad. I wouldn't come straight out and say she is staying. I would handle this very gently. It can be confusing with mixed messages coming from staff and the social worker. I have to be honest, I'm not all that fond of social workers at times if ever. They tend to complicate matters. I've dealt with them in the past.

I think you are handling it well. Your mother will eventually accept being in the Memory Care unit.

Sometimes there are no easy yes or no answers to these situations other than allowing time and acceptance to take place. It is hard for both the loved one and the family members to separate. Watching our loved ones health and minds deteriorate is difficult.

Thanks everyone. They increased her dosage of antidepressant and it seems to be having some effect at least today. She was much less agitated and didn’t immediately demand to leave. It came up but she seemed to be accepting she is there a couple of months. Will take some time to see if meds continue to help. If she is calmer no reason to rush the discussion of staying longterm. Fingers crosssed.

When I placed Mom in an AL she was entering at least her 6th Stage. She had lived with me almost 2 years. We told her she was going to a new apartment and would meet new people. She excepted that.

Six weeks is not a long time to adjust to the MC now being her home. I may go with the MC before a SW though. Maybe it would be better if she is told this now is her home. She probably will be mad but may adjust. When she confronts you, you say for now this is how it has to be becausevshe is not safe at home, Everyone is different. You can't lump people together.

Sadly, dementia thinking is not predictable and people who have dementia often struggle with sadness, depression, anxiety, fixations, regardless of where they are. Assuming she is told she’s there to stay, then she may fixate on convincing someone she should not stay. So, it probably doesn’t matter. Settling in and being happy never works for some people.

Can you not just say that she has stay there until her doctor says it's ok for her to return home? That little "fiblet" has seemed to work for many folks over the years.
And as you know there will come a time that she won't remember what you've told her anyway, so it may be worth a shot.

I think you need to tell her even more of the truth. You “were paying a caregiver for a year to do groceries, make food and spend a few hours with her daily at home”. The caregiver was NOT “a paying tenant”, you were paying her. M is not able to live at home, and you are not able to care for her. You lied to her.

Perhaps this “would devastate her”, but only the truth is going to make things clear to her. Not understanding reality isn't doing her much good either.

Tell her the truth . Stop giving her false belief that it’s temporary , in this case it’s not helping.

She will likely continue insisting she can take of herself . Prepare to keep having the same conversation that she needs to stay for her safety .

I also think you should be truthful. However, be prepared that she will continue the think she is only temporarily there. And this may be on a continuous lopping scenario whenever you visit. With the dementia it may be progressing and entirely not evident yet. The truth may not stick with her although it is best that she be told the truth. Whether it be the dementia or her denial of the truth it will always be difficult because she will not want to be there ever.

I am in a similar situation with my uncle. He has been in a long-term care since July after 100 days of rehab that wasn't successful in him gaining mobility. Due to dementia or denial as a self preservation mode, he is incapable of realizing that he is not well needs to remain in the NH. Every time I visit he is insistently saying his is improving, walking and going to be going home in a few weeks. I have told him the truth and he gets sad, mad and then denies he is not mobile. Then the next visit he never remembers our previous conversation and the loop starts over. It is exhausting and it never changes.

Thank you. I don’t expect miracles either way, she is going to be angry regardless. If truth helps ease the repetition in her head, that would be a win.

I think if one medication isn't working you may be stuck with trying other things, so partially you are stuck with any answers that modern medicine can come up with.

There is no real transition for some. Ever.
I am afraid I am on the side of the staff. I don't believe in lies to elders and think it adds to unrealistic hope and more confusion. I can't say that telling the truth will make a difference, either. Sadly, this is the face of worsening dementia.
I wish I had better things for you. But lying to you and saying "Oh, this will be better in a month or two" just prolongs things. Doesn't it?

I wish you the best. I am so very sorry.