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She has advanced dementia and is VERY needy. She has lot of anxiety, some hallucinations, and is very confused. She cries a lot of the day. “I miss my mother but she’s passed away.” “There’s people that are going to hurt me. Let’s go.” "I’m having some real problems.” These are all things she says. I know they’re pretty typical. So far she’s been clingy with staff and other residents.


I wanted to see what other people thought of being advised to not visit for two months. The head nurse said it might be sooner but that they would continue to update me and let me know when they thought it would be good time to start regular visits. They obviously said I could do whatever I want, but this is what they recommend. I understand there’s a need for Mom to adjust, but it seems really long. Thoughts?

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My thoughts on this is do what you think is best. As much as they are experienced with this, they don't know your mother better than you do. Use your gut and your own discretion when it comes to this.

My mom did not have advanced dementia and I was still advised to leave her there for a bit before I came to visit. I knew my mom would feel like she had been dumped there if I had agreed to that. So I visited immediately and regularly. Your mom may feel differently but only you can know that. They can't.

That's my opinion for what it's worth. Take it or leave it.
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Is your mother's anxiety and agitation being treated? We found that early on, getting mom seen by a geriatric psychiatrist made everything else easier to deal with. Not because she was "drugged". Because she was calmer and not jumping out of her skin with anxiety about EVERYTHING.

I know that the recommendation is often not to visit at first. We wouldn't have been able to do that.

If you feel you need to go, go and accompany her to activities. Go for a set amount of time. Listen to her complaints and say "I'll take care of that, mom". Don't feed into her delusions; listen, but don't share her awfulizing or drama.

Talk to senior staff about her/your concerns. Asking the aides or med techs won't get you action or solutions. Find the DON and make her an ally.
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Hex6837 Jun 2019
Yes the anxiety and agitation are being treated. She was in a behavioral hospital under observation for a month while they tried and adjusted meds. They have her on four doses of klonopin each day, but she still has anxiety. I’m guessing they’ll have to continue to tweak and maybe up the anti-depressant. They have a visiting Geri psych that comes once a week.

Thank you for the answer :)
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Part of the reason for no visits is so that mom, hopefully, becomes accustomed to having staff care for her. The transition to a facility is tough, especially for those with dementia. They become very anxious and behaviors can become very difficult. Without your visits mom may settle in faster and easier. Each time she is visited the leaving may trigger more anxiety. Staff then starts anew with trying to help her adjust.

Hard decision. My mom really never adjusted and visits intensified her anxiety. Once she even tried to scale a six foot fence! She was sent for a psychiatric assessment the first time after only about a week. Meds were adjusted so she settled down for a bit. Until the next time. Nothing helped, permanently for mom.

You may want to stay away for a few weeks, then see what staff suggests. It is plenty is wait and see. Let mom come to some sort of level of trust for this new group of caregivers, give them at least a chance to see if they will be able to settle her in. Clingy may Actually be a good sign.
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Zdarov Jun 2019
This must have been so difficult for you, I’m sorry. Do we learn to slip out when they’re distracted, like when a nurse comes in to do something, vs. a ‘goodbye interaction’?
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I'm another one who questions the advice to stay away so they can adjust - if you did that to a child or even a pet people would call you out for being abusive. Yes, they need to accept help from the people at the facility and learn to take part in the daily routines there but I can't see how brief, encouraging visits preclude that.
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anonymous912123 Jun 2019
Many times the visitor listens to all the person complaints, real or not, and becomes too involved. I have seen this first hand. I think that there is a learning curve involved and this gives the facility time to establish a routine and help the patient to embrace it. I agree brief, encouraging are the watch words, but, few caretakers do this, it hard for the facility to know who would and would not do this.
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I would give it a couple of weeks, as I learned most fight it at the beginning and we caretakers become a complain port, as they want us to take them out of the place. I think it just adds to our stress and guilt. The staff will have a routine established by then and you can see how you fit in and what needs to be addressed.
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If you can refrain from providing direct care or trying to direct the staff's direct care, then I would say visit. From what I have heard, most of the persistent problems are not with the patient but with the family getting accustomed to LTC.

Personally I would never leave my LO for weeks anywhere without at least a "monitoring" visit. I did monitor my father where I didn't interact with him but came by the facility and watched him for a few minutes on a monitor. Dad was very angry with me for gaining guardianship and forcing him into MC so my visits were usually somewhat upsetting at that time. I did an in person visit at least once a week.

I believe that even in a good facility, patients get better treatment when the staff knows someone is going to be showing up. Years ago when my grandfather's aunt was in a NH, he got a call from the nurse letting us know his aunt was complaining of eye pain and the NH didn't have the staff to get her to the eye doctor before the weekend. Grandpa and I picked her up an hour later and took her to the doctor.
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Zdarov Jun 2019
Lots of good thoughts here! We can look in without it being a visit, and that’s just what I’m going to do too.
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Just moved her in from where? Was she living with you before?

As the unit has actually given you an estimate of between three weeks and two months, I'm encouraged because that says that they recognise that there are huge variations in people's ability to adjust and they are are treating them as individuals. Moreover, it is a recommendation based on their experience of what works best for new residents, rather than some arbitrary rule devised to minimise disruption to the unit's routine. So it sounds as if you can have confidence in them, which is better than how many caregivers feel at this stage of the handover.

Still, although they're the trained experts in dementia care, you're so far the expert in what comforts and settles your mother. If she was living with you, I'm not sure I'd agree that a hiatus like this would be better than continuity of care; it might be better to take part in the unit's routine and gradually wean her off. But I do certainly agree that if you *are* going to visit, be careful to mesh with the team there.
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Hex6837 Jun 2019
She was living at home with a friend. I would come visit and we also had caregivers there. If she was crying she would seek consolation from whomever was closest to her. When she would snap out of it for a little while, she was pleasant to everyone. *Sometimes the caregiver would be trying to get her attention during these periods and she would nod her head at the caregiver and sort of fake laugh then turn to me and mouth “Let’s go, come on.” So part of me feels like when I’m there that thought of leaving lingers in her head. I can see it from the assisted liviing facility’s POV where they want to give the resident the chance to get with the routine without feeling like someone familiar is coming to take them out of there at some point in the day.
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Take the respite you so deserve and stay away as long as you can! When I moved my dad into memory care I stayed away for a month, as was suggested by the staff. It did help him adapt to the new environment. Now he's been there 25 soul-crushing months and I relish when I can go a whole week without having to go there. The routine will get tiresome soon enough, and you've probably been through enough already ;)
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Zdarov Jun 2019
This must be so hard! Wishing you continued strength and patience.
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I don’t think there is any set period for this issue. I had to put both parents in assisted living within days of each other. It was the week from hell. The staff was great, told me to pull back but no set period.

So what worked for me was to pull back gradually, I had to be around the place moving stuff and fixing up the room which I’d do while they were eating. Then I’d stop by the dining room, mom would always yell JUST WHERE HAVE YOU BEEN!? I’d tell her I was fixing a leak/furnace/light whatever at the house.

After a couple of days I would watch them in the dining room from the lobby where they couldn’t see me. I had to fight the impulse to run in and cut up moms food for her and help out. But they had to figure this out on their own.

They sorta settled in eventually, never really happy but accepted their fate. My presence just reminded them of all things HOME and stirred them up. Mom was so mad at me I had to even quit calling for a couple of weeks.

Use your own judgement on this. Few elders are ever happy when they go to care but they usually adjust. Good luck.
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I am the Director of Nursing for an Assisted Living community, what I tell our family members is 2 WEEKS not months. This is a settling in period and the new residents are always going to have periods where they are not happy, I tell our families that when they call them and report things they say we are not doing to call me and let me look into it.  My reasoning for this is that it allows my face to be the one they will come to when they are upset or need something and family members can go back to being just family and not have to be caregivers. 2 months is way too long, to some residents that could make them feel abandoned and I would never want that. I want our families involved with every aspect of care, that is the only way we can all make sure we are doing what we can for our residents.
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I agree with techie, I think its just as much for you as for her. We all tend to "hover" a little. I would ask my RN daughter "what do u think" and she would tell me to complain or not.

I feel thought 3 weeks to two months is long. I feel they are like children. You were their everything and now they may feel abandoned.

I never visited in the morning. Too hectic, with getting the residents up and dressed for breakfast, med passes and before u know it, its time for lunch. Mom never napped so I would go in the afternoon sometime. She was not able to carry on a conversation so I didn't stay long. Just so I knew she was OK. Never in the evenings because again, they r getting residents ready for the evening.

I may give them a week. Then call and see how Mom is adjusting. I may go 2 weeks but not longer than that. I would learn the routine. You really need to adjust to the facilities way of doing things. When I started visiting, I would not make it more than an hour. And let the aids do their jobs. If Mom needs changing, have them do it. Change of clothes, let them do it. Show Mom that these people care for her, not you. You just visit. This is now Moms home. She is a resident not a patient.

Maybe make a list of Moms likes and dislikes. My Mom was allergic to deodorant. At the NH I found an aide had used their brand of deodorant on Mom. Made me mad since her box of toiletries was right there next to her bed with the deodorant we found she could use. With a note on it. Took the tube out to the head nurse and told her it was on the list I gave them what Mom was allergic too. The aides needed to use the items I provided. If she had broke out, it would have taken a while to clear up.
So, you do need to be present and 2 months is a long time to let a facility have complete control. Thats my opinion.
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I can understand the rationale behind this but think that 2 months is way way too long. With all of the concerns about things happening in NH that are not on the up and up, and I have personally seen some of these things, I would have to be there to observe how my hubby was doing even if I was out of his sight for a couple of weeks at the most. And I could do that. The thing is too, to not show up at he same time every day, but to stop in unannounced at different times. It tells alot. There are alot of good facilities out there, but the ones we hear and know about that are not up to par are the ones we worry about. If hubby ever needs to go to one, they will know that I am aware and visible.
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Two-three weeks is not an abnormal recommendation. Whoever mentioned that part of that time is to allow caregivers to get used to the facility as well as the resident, was spot on.

Two MONTHS on the other hand... I have never in our many experiences, experiences of those close to us, or experiences I have read about more tangentially, heard of that long of a wait to visit. Others may have different thoughts, but this would be concerning to me. I would want a *very* sound/detailed rationale as to what benefit that particular period of time would hold... especially for someone with memory issues.
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I agree about treating her anxiety and mental distress. Does she take medication for this? Mental pain is just as serious as physical pain, imo. I'd explore it with her doctor to see what is available. That might help her feel better.

I didn't visit for about 2 weeks after my LO was placed into MC. I think it was fine. It's a personal decision, though. I don't think I'd wait much longer than a couple of weeks though.
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Hex6837 Jun 2019
Yes she does Sunny. She’s on anti-anxiety, anti-depressant, and an anti-psychotic. The facility’s Geri psych is going to have to tinker with the med mix some more.

Thank you for the answer :)
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No way. 3 weeks is too long. At most I'd wait a few days only then begin going regularly. You should visit as frequently as you want or can. Now, you can stay out of sight for a few weeks so she doesn't spot you, but I would still go and check on things. There's no reason why you couldn't do this and stay 20 minutes or so at a time to make sure things look right with the facility and interactions with staff. I'd also make myself known to the staff, telling them you and your sister will be dropping in on alternative shifts for example and so they'll get to know you. Be communicative and polite with staff, but not overly friendly. If you see anything wrong, or neglectful don't hesitate to address it with head admin. If you see something good and she's getting good care when they don't know they are actually being observed, compliment them.
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Could you share what anti psychotic Med she is on?
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We waited a little over a week; and, boy, was it hard!! Mama was mostly OK at that time. She, too, has become very attached to the staff. That's a good thing, although I sometimes get a little jealous. Silly as I am so thankful to the staff.

So, we were lucky that the facility let us come after a week. I hope you don't have to wait 2 months. That seems very long to me, especially if your mom knows you.

Best wishes. Karen in Texas
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i would not wait to see her - time is too limited. The nurse has a different point of view - and this isn’t her parent.

if she is mentally deteriorating and you don’t see her, you could miss moments with your mom at her best.
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Don't listen to them. You need to visit at least twice per week until your mom is acclimated and to make sure she is being properly cared for. Don't let them start telling you when you can and can't visit your mom. Be prepared to speak up for her, often. Also, prepare to replace her clothing many, many times as they and other items mysteriously go missing.

If it was possible I would have kept my mom at home with me and not put her in a facility at all. I tried taking care of her myself for 10 months and almost collapsed in the grocery store with her. I was exhausted beyond words and had no other choice. It takes a team of people.

Also want to warn you that as this horrible monster progresses she will be kicked out of memory care and you'll need to find a long term facility for her. They will pull this stunt during a hospital admission. When time for discharge a nurse from the memory care will need to assess your mom to be able to go back to the facility. They will say "She has to go to rehab for 20 days before she can come back." At 20 days they will reassess her and say "She needs more care than we can give her so she can't come back."

This recently happened to my mother and it caused instant chaos to move mom's things out of memory care and into storage. This circus began at noon and it was 9 pm when I got home.

Just be prepared for a whole lot of bull dealing with these facilities. We've been through three of them in this Alzheimer's journey. One of them almost killed my mother during a rehab stint after she fell and broke her hip in the memory care unit ending up in a wheelchair the rest of her days.

So, don't let them tell you when to come back and see your mom. They will do her any old kind of way knowing you won't be there to check on things. If you wait, when you do get back your will find your mother just about robbed blind of clothing and items. Guarantee you that nobody will know a thing about what happened to them. Yes, my mom's name was on everything. Still, they are gone and no one knows nothing.

At the first rehab my mom was in, she went in on a Thursday and I was with her. I went back Saturday and every stitch of clothing that was inventoried on a list that Thursday was GONE! Nobody knew nothing. My mom has had several thousand dollars worth of clothing and items taken from her. I visit frequently. Sometimes I'd go in and another resident is wearing my mother's clothes and mom's closet was full of clothes that didn't belong to her. I was absolutely livid.
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Marisky Jun 2019
My mom has been in memory care for a few months. When she was admitted the admissions director told me not to leave anything of value because the residents go “shopping.” My mom “shops” as well. I’ve seen others wearing her clothes and her wearing others shoes that don’t even fit! Oh my! I do have a question: I’m anticipating the rehab scenario you mentioned. Is your mom now in a nursing home? If so, how did you get her into one on short notice? This is worrying me because I know it’s coming, and nursing homes around here are VERY hard to get in to except for the horrible ones.
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I agree with ZenZen and the others on not waiting that ridiculous amount of time (weeks to months.) Omigosh, no. A few days is reasonable, or even "maybe" a week. But you have every right to visit when you choose. You be the judge of when is a good time to be there. If you like what you see of their care and your mom's adjustment, trust in their care of your beloved mother. But they need to be transparent and communicate with you on her progress. Maybe be low-profile in some of the visits, just observing what is happening in the facility. Gauge how she is doing and gauge with yourself how often you can tolerate the crying jags, outbursts, etc. That all should determine how often you visit. Big hug to you all.
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Everyone’s adjustment period is different. Some a week, others a month. But I do not think 3 months is reasonable, not to mention 3 months of rent you have to cough up. That is A LOT of money.

My husband took a week to adjust but I visited him every day after work to make sure he was looked after properly. After two months with various issues at the facility and with our finances, I pulled him out. That was 2 yrs ago. Had he still stayed there at $10k a mon, we’d have burned a quarter of a million by now. We don’t have even a quarter of that in savings.
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Although, Dear, It does seem very Extreme in Between, Being Mom has Dementia, They want t be Sure she is Adjusting to th eCertain Routines and pocedures, Medicine, People surrounding them and the Professional Ones, hun. This takes Awhile so Smile. You canno tImagine many of the people on Here who have Complained incessantly because of Facilitie who didn't do this and they are Now Suffering in Silence. Hang in There, These people Care.
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I would seek a recommendation asap from a neurologist who specializes in advanced dementia. That sounds like a long time.
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I am sure every facility is different but when my Mom went into Memory Care, I asked what they recommended for visits. They told me that she seemed fine and I should come as often as I wanted. I assumed that meant they were able to tell the difference between someone who might have trouble adjusting and those who wouldn't. But, even if they told me to wait a couple of months, I wouldn't have stayed away that long. A week or two seems most reasonable and, as someone already mentioned, you can go and check it out without her seeing you. At least you'll see whether she's dressed appropriately, is clean and if she seems happy. This transition is hard on us too!
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I'd say two months is too long. If it were me, I'd want to visit every week to see how she's doing, but she may ask to go "home" and you'll have to be prepared to respond. I've heard residents in my mother's memory care unit who have been there for more than a year also ask to go "home" from time to time. This comes from anxiety and a wish to go back to the way their life used to be. Are they recommending any medications?
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My my mom is going through the same thing and I'm thinking about this option also. But there is no way absolutely no way that I would stsy awau for 2 months I'd be visiting her still everyday. I don't care what they would say God forbid something happens and you haven't seen her in 2 months are break your heart.
If they if they don't like that I would find another place it's your only mom
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gdaughter Jun 2019
EXACTLY!
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My experience with my brother was - When I had to place him in a Nursing Home he was terrified. I stayed with him for about a week, going home around 10pm. During that week I slowly lessened my time there, or left for a few hours here and there. It also gave me a chance to help him meet other residence (he has gotten very shy). I am not sure if the NH wanted me there, but I could not leave him crying with fear. It all worked out great. He is now active and participating with activities and eating in the dining room. I do try and go every other day to make sure he is being taken care of properly. I have had many issues with this. I have tried to move him into another facility, but I realize it isn't going to happen any time soon. When I visited other NH's and fill out the applications, they always seem positive they can help him. After they have contacted the NH he is in, I never hear again. I call 4 places weekly for about 6 months. Now I am trying to make the best of where he is and be informed of everything medically and psychologically being done to him and for what reason. They don't likeit because I want blood reports, culture results, kidney numbers, hygiene, etc. Finally they are also accepting me and my advocating for my brother and have the information ready. It has been a long journey.
I can not stress enough about following up daily with her care. You don't have to let her see you going there if that is their rule, but I would make sure of how her care is being administrated and that you are very visiable.
I am not trying to bash Nursing Homes, but it is what it is. Our loved ones need care and we want it done. I found out that my brother wasn't getting showered or shaved because they came in the afternoon to do it. He is no good after 2... so he refused for WEEKS. Even being in advanced stage of dementia they let him make that decision not to shave, shower or brush his teeth. The solution was simple - I asked them to do his hygiene in the early morning. It worked, but had I not advocated he would probably have fleas!!!
If you have questions about this maybe seek advice from a senior therapist or her neurologist. Good luck. You have tons of support.
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I just put my mom in memory care at a veteran's home, and I have been there every day since. I think this is a very strange call? Seriously 2 months? I really question that. It is YOUR mom, and you can and should see her as much as YOU want. I wonder what they are hiding? I would go. If they insist, I would consider looking for a different home. Good luck.
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I would think, like someone else said, she is your mother and you should be able to see her whenever you want. She may think you abandoned her, this is not good.
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You have to balance you needs & hers - the reason for the wait is so that she will integrate with their routine & start going to activities that are designed to help them - if you are too much there then she won't try join in - tell her to go to those activities as you won't be there until after & you want to hear what she has been doing

Even bingo has benefit ... it gives number & letter recognition as well as special - so encourage her to join in everything - my mom's room was across the hall from the recreation dept. & they got her into doing 9 activities a week excluding religious so she was doing something every day
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