Is mom ready for MC? How advanced is her Alzheimer’s?

Hihosteveareno

Hello and thank you for this valuable community. I’m new to these boards and am appreciative of the discussions.

I think that my 88yo mother has moderate to advanced Alzheimer’s. I haven’t figured out what stage she is in yet. She lives in AL and can generally care for her personal functions. Her memory is shot. She can recall me and my family, but cannot remember 2 minutes ago. She gets confused and lost in her building, but otherwise enjoys the socialization and activities (even though she cannot remember participating). However, she gets agitated at the staff, and makes comments about harming herself.

The facility wants to move her to MC but I don’t want to. I feel she should be in AL as long as she is social and can take care of her personal needs. I also feel they should be able to handle her tirades. She sees a psychiatrist who has evaluated her, and has prescribed meds for anxiety.

It is an incredibly difficult decision knowing where the right placement is for her. I trust the psychiatrist, but sometimes I feel that the facility has other motives.

I very much would appreciate your comments no matter what. I previously posted this issue as a reply to another discussion, but am starting a new discussion to get as much feedback as I can. Thanks for reading. 💜

M1

Welcome to the forum. Honestly, it sounds like it's time. The level of care should be aimed at her worst days, not her best.

My partner's two MC facilities both have AL wings as well, and MC residents can participate in some AL activities if they are appropriately accompanied. You might ask about that, if that's a concern.

Many threads contain links to Tam Cummings dementia stages, look for that and it may help you (or someone will repost for you).

Emily 123

Hello,

If the AL side isn’t locked down she’s a real risk for wandering, and she does need to be in MC given that she’s getting lost inside the building.

The facility has the right to determine the level of care they feel is appropriate based on what they can provide, the experience of other residents, or if they feel behaviors put someone at risk. They may not have the staffing resources on the general AL side to handle her outbursts without impacting the needs of others, and aren’t likely to recognize your mother’s triggers in time to redirect her. Plus, the general AL staff may not have the training to work with dementia patients that MC staff do, and there’s probably a better staffing ratio on the MC side too.

There’s probably a description in her intake paperwork that outlines what issues will allow the facility to recommend discharge or higher level of care. I’d also take a look at her care plan, which you should be signing off on every 6 months to a year. Agitation that’s consistent and disruptive out on the AL side is more of the type of behavior an MC should handle.

They might be more willing to keep her on the AL side if the behaviors were under better control with meds. As M1 wrote she might still be able to participate in AL activities, but needs MC levels of supervision to support her better. Another option they might listen to would be to have an aide come in, but that would probably be contingent in being able to have them around during the times your mother has outbursts. Can you tell what it is that triggers her?

Anonymousjpl123

Been there, done that. It is very hard to know what’s right. I feel strongly that safety comes first.

My mom moved to MC and it’s been a constant source of second guessing, but that’s all about me. I know this. For example, my mom - like a few others in her place - can occasionally come home for a visit and we do go out together. She’s not as advanced as some others there.

I often question whether I moved her too soon. However, what others have said about placement for her worst days is true and here’s why:

• Some days, my mother is so disoriented she absolutely would be a danger to herself (leaving, sharing paranoid thoughts with other AL residents, getting lost, hurting herself, anxiety to the point of needing more than staff can give)
• She cant socialize on bad days at all
• Many days she doesn’t know who anyone is
• She has had 2 UTIs, 2 falls, and is incontinent

Where she is now, the staff know her and can handle her good and bad days. A doctor and nurses are available on site. She would be “allowed” to live in AL with an aid, but I cannot imagine it. I can imagine a lot of how it could go wrong - for a lot more money.

Now, she can visit me and I can visit her and it’s not all about “managing” her. Which forces me to deal with the grief of it all, but is so much better.

You will have regrets and misgivings either way, because there is no “right” answer. Everyone is different. Some will say keep her in the less restrictive environment as long as possible, others will say get her the care she needs. But…what I also remember is that MC is where my mom is going to wind up eventually. Now, she loves her mini studio, knows the staff, and can stay there with no worries even as her disease progresses. Sure, sometimes she hates it but that would be anywhere. Fortunately the MC where she is is virtually indistinguishable from the AL side in look and feel. There are a few others who are more or less at her level, and they do have activities.

We do our best and there’s no perfect or right way. I would consider what she needs, visit the MC, pay attention to what the staff are saying, and talk to her psychiatrist. Then you can make the decision. I’m with you and hoping you can find some peace.

Hihosteveareno

https://alzconnected.org/discussion/comment/196402#Comment_196402

Thank you. I appreciate you taking the time to reply. I have a copy of Tam Cummings worksheets, and find them helpful. Thanks again.

Hihosteveareno

https://alzconnected.org/discussion/comment/196408#Comment_196408

Hi @Emily 123 and thank you for your comments. I need to step up my participation in her care plan. She recently had her anti-anxiety medication dosage increased, so we’re waiting to see what that does. Her anger comes from fear and confusion. She wakes up disoriented and confused from the very vivid dreams she has. She’s scared about what’s happening to her (to the best she can understand it). And she has very negative thoughts about the MC residents, often referred to them in very negative inappropriate terms. What a mess. Thanks again.

Hihosteveareno

https://alzconnected.org/discussion/comment/196414#Comment_196414

Hi @Anonymousjpl123 and thank you for your comment. I can relate to a lot of it. I second guessed moving mom to AL in the first place, and that turned out to be the right decision. Perhaps this is a similar scenario.

She certainly is identical on all your bullet points, with only one UTI, and 2 or 3 falls. Bottom line I'm getting from all the excellent replies is that I need to take action and see what MC is all about at her facility.

I am curious about your comment, "...and it's not all about "managing" her." Are you saying that your role in your mother's life has become "easier" with the move to MC? Currently, my life is difficult. I have to block her constant calls frequently. I have to deal with the nurses there constantly. On a personal level, I would honestly like my role to be less chaotic.

Thanks again.

psg712

My mom has been in MC for only 10 days, so I'm new to this setting. Perhaps it's my "honeymoon" phase, but I do relate to the comments by Anonymousjpl123 that I am spending less time "managing" - for example, making sure her teeth are brushed, prompting her to wear weather-appropriate clothing, encouraging activities (she really didn't have capacity for AL activities anyway), making sure she didn't get hold of dangerous objects like razors or cleaning supplies ...and so on. In MC, these issues are taken care of. For the most part, I can just be her daughter. And yes, it is a new phase of grief as I am not as distracted with practical things. But she is where she needs to be, and I am grateful for the time we have together while she still recognizes me and wants me nearby.

harshedbuzz

@Hihosteveareno

There are a few old truisms that inform this decision.

Carre needs should drive placement.

Care has to be set for mom's cognition and behavior when she's having her worst symptoms.

Behavior is communication.

And, by the time most families have accepted the need for AL, MC is likely the better choice.

A hospitality model AL can work for a pleasantly befuddled resident in the early to early-moderate stages. Beyond that, MC is the appropriate option. IME, MCFs tend to have more favorable staffing levels which means more attention. They generally have dementia-informed design and failure-free activities which can be less anxiety-provoking than those in AL. Additionally, staff tend to not only be better trained to manage PWD, often they're in dementia care because it's a niche for them.

On of my aunts went to AL when she was more appropriate for AL. I think the decision-makers didn't realize the scaffolding they provided and had a rosier view of the bigger picture than was warranted. One of the issues I haven't seen others mention is the social piece. It's likely other residents are there for infirmities that aren't related to a cognitive shift or are in very early stages. What I saw with my aunt, who couldn't keep up with the conversations of the other ladies and could sometimes be belligerent, was that she was not included by the others. IME, elders without dementia really don't care to socialize with elders who do. My aunt was kind bullied by a band of AL-meangirls who wouldn't let her sit with them and accused her of being stupid or of cheating at games.

One risk of insisting she stay is that she may be asked to leave for behaviors and then you'll be moving her again.

My other aunt was in a CCRC that offered different levels of care. They were flexible about her attending activities and outings with the AL folks even though she was officially a MC resident. She was unfailingly pleasant, so she tended to stay most of the day in AL. It was the best of both worlds for her as she got more attention when she needed it.

HB

Tam-Cummings-LLC-Handouts.pdf (tala.org)

Anonymousjpl123

@Hihosteveareno I am so glad the comments are helpful. This community has absolutely been a lifesaver for me - there is just incredible support here.

In terms of “managing” my mom - yes, that is exactly what I meant. When she was in AL, I couldn’t block her calls because I was so worried about her. I can’t explain it: the staff were mostly hands off, and while she had some friends she really, really struggled. She would call in a panic about random things. One example: one day she claimed she got a letter from the US census saying She was responsible for submitting census forms for everyone in the building. She talked to residents and staff in a very panicked manner, called me 300 times, had had her friends and staff call me. After work I went over, and she couldn’t find the letter. She eventually calmed down.

The next day, the exact same thing happened again. All day. The staff said she seemed more disoriented than normal, thought I should have doctor check for UTI (there was none). That kind of thing happened at least 3 days a week.

Now, these issues still happen and she has progressed. But I see her, interact with her, as a human being. We have great days and rough days. But our visits are visits, not endless work, worry, and stress. Coping with a crisis. We have gone out, even took a drive. But mostly I’m happy she is safe with as little stress as possible. The disease is bad enough. And I can breathe.

Hihosteveareno

https://alzconnected.org/discussion/comment/196606#Comment_196606

Thank you again. After taking the assessment you posted earlier, I'd say mom is in or rapidly approaching late stage 5. She has almost all the characteristics of the early stage 5, and some of the late. I feel I can manage my stress by realizing that her disease issues are taken care of by the caregivers at AL. I can choose how to deal with her on the phone or see her when I want. She won't remember anyway if I see her or not.

I have a meeting with the staff at AL do discuss when, where, and why we will make the move to MC. I haven't even seen that part of the facility yet. I still want to put the move off as long as I can, but am keeping an open mind thanks to some good people around here.

Thanks again.

CaliforniaGirl-1

When our LO moved to MC, we pushed back and commented that there were people who were more advanced their cognitive deficits still in AL. But it came down to the facts that our LO wandered, tried to exit and had no idea of the address if she got lost, was less amenable than most to redirection, got agitated and upset in her confusion and went into other residents rooms because the footprint of AL was too large and was unable to make the independent choices needed to thrive in AL. It was really the wandering, being difficult to redirect and exit seeking that made it necessary. She didn't join in the activities because they were too advanced and had difficulty making friends (although she made one). We resisted the move (like everyone) but in retrospect that was about us and our vision for what her life would be like and not what she really needed.

She has thrived in MC. The increased care levels meant she was getting better care. She started eating better and more once she wasn't faced with all those choices.

There are ups and downs and it hasn't all been rosy all the time. But my LO was recently hospitalized and in rehab and staff members from her MC came to visit her and called to find out how she was. And when she went back I was dreading another long period of adaption but she has been happy to be back in a place that feels familiar and has so much more independence in a setting where they are organized to care for people with dementia than in the rehab where they were great but in order to keep her safe had to limit her independence.

MC doesn't have to be cold, depressing and joyless. If the one you are looking at is not a welcoming, sunny environment where you feel confident that your LO is being treated like a person who is a resident of a community then look for another. There are going to be enough challenges and heartbreak as the disease evolves and there will always be issues to be negotiated with any communal living setting providing care. Being unhappy about the MC to begin with is just going to make it even harder.

You want to be confident enough that when they call and say something is going on with you LO or that they want you advice on the best way to approach something with you LO that you trust where they are coming from. Because those things will happen.

Hihosteveareno

https://alzconnected.org/discussion/comment/196696#Comment_196696

Thank you for your very helpful response.