Advice needed - what’s appropriate expectations?

Anonymousjpl123

Hi everyone,

I need some advice. My mom moved last November into a “hospitality style” senior living facility with independent living, assisted living, and memory care. It’s one building in a large city. So far it has been great - most residents have memory issues of some kind. She is somewhere between IL and AL - stepped care - medication management, they check on her daily, etc. but no structured care.

Lately as her memory issues have gotten worse, and I have been speaking with staff about how we monitor her needs and the process. They said they do their own monthly assessment and will tell me when they think her needs change, and I should tell them if I think she needs more care.

I was planning to do I tour with the MC director in the next week or so as I know we’re on this trajectory. we aren’t there yet, and overall things have been smoother than I expected (except of course for the disease progressing, which I guess is expected).

Long story short: Wednesday 2 residents tested positive for covid, so they put more safety precautions in place: limiting group interactions, have canceled activities, and serving meals in rooms. This has completely flipped my mother out. At first she was just disoriented and paranoid.

i took the day off yesterday and my niece and I visited. I could not find a staff member to speak with me as they were all busy. She did calm down and seemed so much better when I left.

Where I am screwed is that today, not surprisingly, she is once again freaking out: she doesn’t understand what is happening, thinks the place is closing, says they only bring crappy food to her room, etc. I have called an not heard back yet but told staff I need someone to call me today. Am I wrong to expect them to call me and let me know what’s going on? And to at least check in more on her, and explain what’s happening?

she had a total meltdown Wednesday night (I had a work event and one of her friends she was talked to alerted me Thursday which is why I went). Today, she called and said she’s not staying there. She wants to move in with me.

I was already planning to up her level of care, but short term, how can I help her through this? What can I reasonably ask staff to do? It’s small enough that most staff know all the residents. But they haven’t been communicative with me - if I need something specific yes, but they are swamped.

M1

It's all over the news today that covid cases are ticking up. I'm sorry your mother is caught in such a difficult situation, I imagine the staff are overwhelmed with dealing with the new covid outbreak and that is probably why they are not taking or returning your calls. It happened about this time of year in my partner's MC facility last year--she had it, and could not understand why she had to be confined to her room. She had to be given a mild sedative (lorazepam/Ativan) to calm her down.

Sounds like this is proof that in fact your mom does need a higher level of care--as much as you don't want to think you are there, it seems like you probably are. That's the longer term solution, there may be nothing short of hiring a full-time sitter to keep her calm until this crisis passes. Expensive, but you may not have any other option.

MN Chickadee

A covid outbreak is extremely hard on staff because ALL of their patients are freaking out not just your mom and they have so much more work and protocol to follow. They have confused people trying to escape, they have to put on full PPE to enter the rooms of the positive cases multiple times a day. Also if even one or two of them test positive they can't work for at least a week and given the labor shortage that can really create staffing headaches and mandatory overtime. I would not necessarily base your view of the staff on this week. However given how much a change in routine has affected your mother, perhaps it is indeed time for MC. I'm not sure what you can do in the next week or two while this outbreak passes. Been there done that numerous times and it's awful. I guess try to visit and spend as many hours as possible with her. Does she have a doctor you can contact? Perhaps a short term medication for anxiety and agitation would be in order, just to get through this phase.

Anonymousjpl123

@M1 i know you are right. my mom will lose her mind at the idea. I’m working on cooking up some really good ways to pitch memory care. In fact, I may (not saying I will) visit some other mc facilities and use this incident as an excuse to get her in one. Not sure.

The immediate short-term solution is she’s home with me this weekend. The director did call me last night at 7 (she’s amazing) and we came up with a plan: I will bring her back Monday morning and me, her, and the director will have coffee and explain this is not permanent. The director is calm, my mom likes her; it should work short term.

But she’s going in and out of reality. She is convinced no one has covid, and that they are covering up a murder. That’s why no one can talk to each other and has to eat in their rooms. I have her with me in case I need to bring her to er or Geri psych or something.

@MN Chickadee she does have a doctor I can contact but they have really not been great. That said I can call in an emergency. I’m going to try to keep her calm and bring her back on Monday.

I’m just really hoping this doesn’t last long. In a perfect world, she stays there and we switch to memory care there over time.

I am scared of the psychosis today. Not sure when to call her doctor (which has turned out to be more like a clinic; so disappointed since it’s the same practice I used!). It’s not like she’s violent she just doesn’t want to go back to her place.

M1

I would definitely call the MD first thing Monday morning, if not tomorrow (Sunday). If she's that out of touch with reality, I expect the director's plan for a nice calm conversation about this not being permanent is far-fetched and unrealistic. I'm so sorry, but sounds like you are either in for a longer stretch of her being at home with you, or you need to make the transfer to MC asap. Of course, unless it's at the same facility where she's already a resident, no other MC may take her until she's less agitated, and cleared as not having covid herself.....

Anonymousjpl123

Thank you, and yes. She seems a bit better today. I am praying the conversation goes well tomorrow and we can at least convince her the restrictions are temporary.

I also thought of moving her to memory care there and convincing her it was so she would not be in isolation. Or having someone stay with her during the day.

Having her stay here is not an option. I just have to figure out how to tell her. It would be terrible for both of us.

Thankfully my therapist (which I highly recommend for anyone dealing with this, no shame here) reminded me that trying to be everything to her will not go well for either of us. It snapped me back to focusing on her well being and not whether she is mad at me or not. Whew! @M1 thanks for listening ☀️

Anonymousjpl123

Update update update (hopefully not boring - I am always hoping this can help someone in the future!).

Last night my mom blurted out “I’m ready to go back to my apt” and I grabbed the car keys and flew out the door with her without thinking twice.

When we got there, a few people she knew were in the lobby (it’s not total lockdown, just not encouraged and no communal activities). She slept there.

This morning my faith in the medical establishment was renewed when her PCP called me first thing and talked for 45 minutes about the weekend, saying she spoke with the neurologist and explaining the results, and to say she’s on hand if emergency appt or meds are needed. Official diagnosis after neurosurgeon in a week.

Mom and I also met with facility and resident life directors for an hour. She has agreed to stay. Separately with me, they agreed my mom needs more care. Memory care is on the table, but they recommended she start with someone coming for 5 hours 5 days a week. I called the agency they recommended and they are amazing - my mom and I will meet them together to discuss it. Mom is against it but it’s not really an option.they suggested being honest with my mom about that; the woman said she’ll sit with my mom and make her feel good about it.

What this will cost me is money, but it all feels worth it. We all agree my mom - who dresses and bathes herself, has friends, and was doing well before the safety precautions took effect - needs companionship and structure. It’s a good short term solution while we plan for memory care. I am bowled over. The cost is about what memory care will be.

I’ll get a break during the day, my mom will be less lonely, and the whole thing starts Wednesday. Thank you all for keeping me sane 🥲