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?
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.
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.
if she is mentally deteriorating and you don’t see her, you could miss moments with your mom at her best.
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
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.
Thank you for the answer :)
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.
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.
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.
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.
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.
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.
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.
Thank you for the answer :)
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.