When to move to long term care/Memory Care?

vab2024

Hi everyone,

I'm new here. My 72 YO mother has been diagnosed with MCI/probable early stage dementia. While she can still generally care for herself (she lives alone and cleans/grocery shops/cooks for herself, although I take care of all her finances, medical care needs and any and all tech/mechanical logistics). She's getting increasingly irrational and resistant to help with daily living (for example, doesn't drive and had a hard time using Uber app the other day, and is resistant to me helping her). She is very much in denial about dementia, insists she doesn't have it even though the neurologist who assessed her told me she suspects she's already crossed over to the mild dementia stage. Given her deep desire to remain independent yet resist my help (I'm her only child), I want to be prepared for the time when she needs to go to a full time long term care facility / memory care. A few years ago when her brain was healthy, she had told me if she ever got dementia, she wanted me to put her in a facility and not ruin my life trying to care for her. I'm trying to hang onto that, even though I'm currently feeling heartbroken, extremely anxious and fearful for the future, and very emotionally drained.

My question to you all is: when do most dementia patients need to have 24/7 care/go into a facility? Is it during the moderate stage? Should we wait until she starts getting lost (another huge fear of mine)? How do you know when it is time to get them more supervision, especially if they live alone? Also, how long does the progression to that stage take for most patients?

How long do most people need in LTC/MC (trying to plan for how to pay for it)?

Thank you so much for any advice. I'm so grateful to have found this forum.

Emily 123

Hey there vab2024, Sorry you ended up here, but welcome.

Your Mom gave you the gift of telling you what she wanted for your life and for hers when her thinking wasn't obscured by this disease. She understood what she was telling you then. She must love you very much, and have known that it's easy to tie yourself up in knots second guessing these care decisions. That clearheaded mom didn't want you 'feeling heartbroken, extremely anxious and fearful for the future, and very emotionally drained.'' Not on her account, she didn't.

I think you have to go with what you see and what you suspect. It wouldn't hurt to start looking around at what's available locally and start to get a feel for different communities. There are lots of threads here about what to look for.

Patients can 'showtime' outsiders and their healthcare providers so that they seem more in tune with things than they actually are. Does your mom have a power of attorney (POA), so that they can work to make the decisions that need to be made on her behalf to keep her safe? You did say 'we'--is there another family member available?

There is a grey area where the person needs to have consistent supervision, but they are still able to manage their day to day ADL's with support. AL's, CCRC's and group homes can handle that, but the potential for wandering means the facility should have a way to address it--at my mom's they have a key-fobbed entry, so regular AL residents come and go but dementia AL and MC folks stay put unless escorted.

It sounds like she has anosognosia, which is the inability to understand how much the disease is affecting her. Since short term memory loss prevents her from retaining information, she now lives in a world where there's a kind of time warp--she can remember older memories more clearly, but can't hang on to recent events. She can't sense time passing, so may be thinking those older memories are current ones, or that she's doing her usual routine tasks because she doesn't remember NOT doing them. That becomes an issue if she then assumes she's taking her meds every day, or showering, or that the meat she put out to defrost two days ago was something she did this afternoon, or she thought she turned off a burner but didn't.

The anger and irritation are because her capabilities are dwindling and she's being challenged on a day-to-day, task-to-task basis to keep up with things . It's becoming a struggle for her, and she's failing at doing things that used to be easy. At this stage in the disease 'less is more' becomes true. Less choices, less chores, and less things to remember will make life easier for her. You've done a great job in supporting her, but it may be that the disease is progressing beyond what you can reasonably provide at this point.

Others will have good advice and next steps, I wish this didn't have to be so hard for all of us...

_______________________________________________________________________________________________

The staging tools at the back of the handout below are helpful, but not every person will check off every box in a stage, and they may straddle a stage for awhile. Plus every person with dementia is different, because our brains are all wired differently. I did find it helpful to see what was upcoming, and to have a better feel for Mom's challenges. I did realize she was further along than I would have thought once I lived with her.

Tam Cummings assessment tools/AD checklist

https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

I really like this 'moderate stage' video as it also pulls in information nicely about the mild stages too. Moderate stage: https://www.youtube.com/watch?v=6cZTgG6kDjs

Stage 4: https://www.youtube.com/watch?v=coiZbpyvTNg

Talking to a person w/ dementia. https://www.youtube.com/watch?v=ilickabmjww

Talking to a parent: https://www.youtube.com/watch?v=oiUpztj2DkQ

M1

Adding my welcome. There is no perfect time, and with anosognosia, you are not going to be able to reason with her and get her to consent to a move. You don't want to wait for a crisis; it sounds like she would benefit from assisted living now (most people wait far too long). Assuming that financing is not holding you back, it would make sense to go ahead and research facilities near you, perhaps looking at any that have both AL and MC options.

You will need power of attorney to make a move against her will-if you don't already have it, consult a certified elder law attorney ASAP; this person can also advise you about her finances. Be prepared to have to use a white lie to accomplish the move-something along the line of a gas/sewer/radon leak that's going to require a long time to fix, or you needing surgery such that she needs a temporary place to stay.

None of this is easy, sorry you are facing it but this forum has a wealth of support and practical ideas.

vab2024

https://alzconnected.org/discussion/comment/196149#Comment_196149

Thank you so much for the advice and your kind words (I needed to hear the first part especially). Luckily I got POA (both medical and financial) three years ago after I found out from 23andme that she carries two APOE4 alleles, and was at very high risk of dementia. So I've been preparing for this for years, including by moving her to within 30 minutes of where I live so I can help care for her. I set up autopay for all her bills and take care of all tasks that require higher cognition. Her current diagnosis is technically still MCI/stage 3, though I suspect she's already at, or will soon be, stage 4/mild dementia. I'm hoping to be able to keep her living at her home for another 2-3 years/while she's in stage 4 as long as it is safe to do so. Afterwards, we'll need to move her to MC (my husband's mother also has AD so we know what's coming). That said, we know we won't be able to move her in with us, mostly because I think i'd fall apart emotionally and need to keep my mental/emotional health too, and looking to my own future, I need to ensure I don't take on advanced 24/7 care tasks now that put me at an even higher risk for getting dementia myself as I age (I already have the genetic factor, though luckily lower risk than hers thanks to a normal allele from Dad). I appreciate all the help!

Do you have a sense for how long they usually need MC/LTC so we can plan financially? Thanks again!

vab2024

https://alzconnected.org/discussion/comment/196153#Comment_196153

Thanks so much for your advice! I have POA thankfully. I think she can still remain living at home for a while, she hasn't yet done anything (like missing medication, as far as we can tell) or getting lost to put her safety at risk. I know it's important to her to remain in her apartment for as long as possible, and I'd like to help make that happen. There's a well rated adult care facility near her that I'll speak to soon, hoping they can help her stay at home for a couple of more years. We'll see. Thank you so much!

psg712

Emily and M1 have given a lot of great advice.

Her trying to get an Uber sounds scary to me. You really don't want her to ride with a stranger when her judgment is impaired.

vab2024

https://alzconnected.org/discussion/comment/196179#Comment_196179

Thanks for your concern. I tied her Uber account to mine, so I can track and see all her rides. She's been using them successfully for the past 2-3 months without an issue. The latest problem arose because she couldn't figure out how to use the app one day.

Emily 123

Hi there vab,

The Tam Cumming's checklist has a guesstimated time for each stage at the top of each stage header. That said, rate of progression will vary but I can state my understanding & experience.

The current thought is that progression through the stages occurs consistently as a gradual downward progression IF it's Alzheimer's. In that case about the same amount of time is spent sliding through each stage.

Autopsy remains the definitive way to diagnose the disease, but memory loss early on and an inability to retain recent information is a hallmark of AD. Since everyone's brain is wired differently, one person's dementia will be unique to them, which you may see in comparison to your MIL. They may retain some abilities very late through the stages, and lose others earlier. The advice is to stage and guardrail them to the most advanced behavior, because initially you may see the behavior crop up quite randomly. For my mom, her stage 5 kickoff was not being able to look at the weather outside and choose clothing correctly.

Disease: Underlying disease or acute illnesses can affect stage progression, giving you a preview of what's to come. My mom (94) had her thyroid removed a long time ago, and her dementia at age 90 caused her to forget to reorder her levothyroxine prescription, creating a spiral of worsening cognition--she was taking her daily multi-vitamin and so thought she was taking all her lapsed meds for the day. This Fall she had covid which she was slowly recovering from, now the flu and a UTI, which has pushed her solidly into stage 6 in terms of being 'lost' in her own world and not able to cue into conversation consistently. I'd say she's doing about 2.5 years in each stage, but it's hard to say.

Our family, like many not in daily physical contact, began to realize that something beyond age related memory loss was occurring in stage 4. Stage 3 can have such a subtle onset that unless you live with the person it would be hard to recognize its start and guesstimate how long stage 4 will last. I think you're right, and may be that your mom's confusion with the Uber app is a stage 4 behavior since it's a recently learned tech 'memory'. That doesn't mean she needs MC right away, but she may need more guardrails set up for her physical needs to mirror the good things you're already doing for her--for instance, if she's taking her own meds, set her up with a memory clock (see Amazon for 'dementia clock) and a pillbox with AM/PM meds. I think it's a good plan to go talk with the AL/MC. She might make a very easy adjustment to an AL with a fairly minimal care plan in place given her level of functioning . Adapting to a new environment will become harder for her as the disease progresses and her short term memory stops working. It might be better to go earlier while she can develop a routine, make friends, and then age in place there.

Whether you want to identify it as such or not you're already providing significant scaffolding . Technically, it does seem like you're supporting stage 4 already. You're doing great at being a supportive prepared caregiver, but like you mentioned, she didn't want her care/oversight to dominate your days. You know your mom, but what she gave you was the permission to make the call based on how her care was affecting you and your own family (and by extension, hers). A heavy responsibility, but one she wanted you to make.

You may want to discuss finances with a CELA (certified elder law attorney) or a financial planner to get a sense for what options you have.

Good luck with all of this--it's very hard.

vab2024

Thank you so much @Emily 123 , this is such helpful advice and information. I'm so incrediblly grateful to have found this forum. I'm sorry you all are also going through this. Did your mom go into AL/MC in stage 4 or 5?

I'm quite torn about this, because she loves her condo and is still generally able to live there safely and care for herself on a day to day basis; it is within walking distance of a senior center where she takes classes and has friends. I'd like her to be able to remain in that arrangement as long as possible while it is safe to do so, yet ensure I move her to AL ideally 6 months or so before she needs MC so she has some time to adjust, yet doesn't have to suffer the loss of her current life (which I know would be very hurtful to her) until it is truly necessary to do so. As you said, it's not an easy thing to gauge. I think I will at a minimum wait for a definitive stage 4 diagnosis, and also discuss with her neurological team for some personalized assessments of when they think would be a good time to move her to AL/MC. Thanks again for all your super helpful advice!

Emily 123

Of course! It's great that she's able to enjoy herself and has an active lifestyle! Mom was stage 4 when she came to live with me in April of 2020, while we waited for the covid vax, got her thyroid levels back in balance, and had her assessed. That took about 9 months, by which time she was dipping her toes into a stage 5 behavior.

vab2024

Thank you! That sounds like fast progression to stage 5, but I'm assuming she may have been well into stage 4 by April 2020 if she has progressed at around 2.5 years per stage? I'm hoping my mom, if she's somewhere between stages 3 and 4, may still have a couple of years before going into AL/MC.

Hihosteveareno

Hello and thank you for this valuable discussion. I’m new to these boards and am appreciative of the discussions and the links that were posted in this thread.

My 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. Thanks for reading.

vab2024

https://alzconnected.org/discussion/comment/196379#Comment_196379

hi @Hihosteveareno and welcome. I'm sorry for what you're going through. I'd consider having a neurologist/dementia specialist evaluate her. From what I've learned from the videos above, it sounds like your mom may be well into stage 5 if not 6, at which point, my understanding is MC is best and safest for them, as they'll be cared for by people equipped to handle it. At my MIL's MC, they also have activities for them that are more appropriate to their level of cognitive capacity. I hope this helps!

housefinch

@Hihosteveareno As hard as it is to hear, I agree with above comments that your mom likely needs more supervision than AL can safely provide. She sounds like she needs MC. I would not assume the facility has financial motives, necessarily—your mother, in MC, with 24/7 supervision and less stress on her limited executive functioning capabilities, might even stop having tirades. She may be agitated now because she’s so stressed out trying to function in an environment that is not meeting her needs. Typically family members want to believe their loved ones are higher functioning than they actually are. Her behavior may be communicating she is in over her head in AL. I would definitely be sure that MC can accept her with her current behaviors. Some MC facilities will refuse to accept patients with significant behavioral issues unless they are stabilized first by geriatric psychiatry, sometimes in the psychiatric ward of a hospital.

housefinch

@Hihosteveareno you may want to start a new post with your question—you may get more answers and views that way

Hihosteveareno

Thank you all for your valuable feedback. I hear what you all are saying and appreciate it. I will follow up with the AL and MC DIrectors and keep an open mind. I think the suggestion to start a new thread may be useful as I am getting a great experience from all your experiences. 💜