Mom personal care: Assisted Living vs. Memory Care

Caring62

We are at a point that changes are needed to support Mom's personal care.  Over the last 3+ years we have been trying to get her to let me and/the Assisted Living care staff help her with this but have been unsuccessful.   Her bouts of UTIs, Candida and general rashes "down there" are increasing due to her inability to clean during toileting and not showering/bathing.  While we know this is not the case Mom says to the doctor and us that she bathes daily.  The doctor knows this is not the case and tells her that she needs to get help with personal care. Over the last several months we see more confusion and angry outbursts w/staff and family when she is frustrated our hurting.  She can get very hostile when anyone tries to help.  

What I would love to know is how Memory Care would be any different when they have a patient who is not cooperative with personal care.  Other than personal care Mom still likes where she lives and enjoys dining with others.  Moving Mom out of her current Assisted Living apartment will be very tramatic for her and the family, let alone much more expensive.  I am trying to understand whether at this point whether Memory care makes sense.

Thanks for your help.

zauberflote

Caring, your mom must be absolutely miserable with all that going on. I won't make recommendations, but I can say that MC is meant to be staffed with carers who understand dementia, and have seen and done it all. 

My mother was in AL for a few years, and this one worked by finding two ADL's which they would help her with, thus qualifying her to live there. She did well, but for the last 6-9 months of living there began to "smell like an old lady". We moved her to a "combined AL/MC", and immediately she became cleaner! The CNA's and aides there knew exactly how to help her. None of the residents smelled dirty. I once witnessed a hilarious exchange between a CNA and a 60'-70's-age male resident who was wheelchair-bound. It was pretty much the exchange I have with my toddler grandchild when I suspect a poopy diaper, only in more graphic adult terms. Both participants were more or less enjoying themselves. 

Your mom's lashing out could possibly be caused by anxiety. Ask her doctor about that. My mom took a tiny dose of Seroquel for the last several years of her life. 

Best of luck!

Emily 123

Hi Caring62,

This is actually an excellent question to ask of any MC residence that you would be looking at.  A good MC will specifically train their caregivers to deal with dementia. Ask what training they require, and how often, of their staff.

It's probably safe to assume that your mother has lost her sense of time and is assuming she is bathing every day just like she used to, so insistence that she has not will cause her to think that people are lying to her, and she gets agitated and defensive. I am assuming that your mother has transitioned to incontinence briefs-if not, then disappear her underwear and pads and make the switch.  The AL could encourage her to change them twice a day by monitoring her changes with daily trash removal.  Likely this will cost you, but worth it.  They did this with my mom at her dementia oriented AL and it did work, but she was a new resident, and didn't give any pushback.  Nonetheless, can't hurt to see if they can add it to her care plan.

 It sounds like your mother's AL does offer enough assistance with compliant residents, but not if your mother refuses.  A good question of any MC would be to discuss what they do in the case of residents with repeated urinary and fungal infections who do not maintain personal hygiene.  How would they write up the care plan? What schedule will they set, what will they require? How determined will they be to get that cleaning done?

If this is the only issue, and cost and the move from familiar surroundings is a concern, and if you could find a personal aide that could bathe your mother that might be a solution. 

This is a pretty common problem--really, a classic presentation--you would find a lot of threads here with a search.  

ButterflyWings

I agree with Zauberflote this seems like a lot for your mom. You mention for sure the painful rashes, etc... plus if she has anosognosia like my DH, she may be totally unaware that she's impaired in any way. So, like Emily said, the thought that she needs help wouldn't make sense at all in her mind, while it makes total sense given what you have described. 

I do not have AL or MC experience as we are now stage 6d at home, but my DH is bath/shower resistant as well. Big time. He is a "no means no" guy in this regard and even our home health aides/CNAs that have been helping for the last month or so, are respecting that. So, I have to "spot clean"/sponge bathe his privates using the adult wipes every time he toilets, due to a yeast infection from (h3ll) that I shared about a few weeks back. Also applying a nystatin ointment barrier at least 1x daily per his doc. He barely tolerates me doing this, but it was mandatory to avoid bigger issues, so I am just matter of fact and persistent. He now has a toilet shadow partner (me). Every time he goes. It is clear that at a point - hygiene issues can cause unnecessary medical problems that then escalate the dementia challenges. 

That downward spiral seems to be in play with your dear mom and it does sound like a higher level of care is needed. With dementia being progressive, AL works for only so long anyway, and perhaps it is time for the inevitable move to MC, or Emily's idea is excellent if you can find someone to come in and help her with this important task. Have you noted any other decline though? 

Having navigated 4+ UTIs in the past 2 years, I can tell you that the behavior issues they cause are WAY off the chart, and my LO did not return to baseline immediately once the meds cleared his infection. So, her lingering non-compliance, anger, and all may lessen if you can help her get a handle on the UTIs alone -- and if so, I'd say it is worth it. She must be miserable and you as well. Wishing you success with your decisions.

quartlow2

MC staff should be more skilled\trained to care for dementia patients than in AL. I echo the previous comment regarding asking about the facility's training program. Ours are very kind and persistent. Patients are checked on regularly throughout the day instead of when called by the patient. You could ask them how often patients are checked on, what their general schedule is and what would trigger additional checkups. Also ask how often vitals are taken and recorded and how do they handle bathing when one refuses. 3 shifts of 24\7 care staff in a care facility can be way more patient and persistent than most people can afford to hire for in-home      care.

Rescue mom

I can only tell you my experience with AL and MC in several facilities, in 2 states.  (It’s much like what some others have said already, just adding another voice.)

AL was fine as long as, and if, the resident was compliant and/or would ask for help with something. If the resident knew to ask for help with bathing or dressing, for example, staff would help, all good.

If the resident did not know they needed help with whatever, or refused to do necessary things like bathe or eat, that’s when MC comes in play. They are more used to dealing with such behavior, and have the staff to deal with it. 

AL often did not have enough staff to best deal with residents who needed extra attention and help.

There’s also a lot of “gray” in those definitions, and in what specific facilities may provide. But in general, MC was needed for people who didn’t know what help they needed, or (in mid/late stage) refused to act in their own interests.

MN Chickadee

This can vary by licensing language, state laws, and by company but generally the MC is going to have staff trained and experienced in dementia care, and a higher staff to resident ratio. That means the staff have more time to prompt people, spend the time coaxing into showering, and just more hands-on and oversight. If they see a rash or medical issue the nurses will be on it with a plan for aides to implement, will check on it, treat it, consult her doctor - I find the extra medical oversight extremely valuable. The training of the MC staff should be much more extensive for MC staff to understand dementia and appropriate communication techniques. MC staff are used to people being ornery about bathing and will often have tricks up their sleeve and approaches that won't be in AL. For example, the staff at my mother's MC were experienced enough to know that while she was resistant to bathing they just had to find what her issues were. Over time they learned she had to touch the water first with her hand to approve the temperature, she is extremely fussy about temp, and that she had thin delicate skin and the water pressure was uncomfortable for her, and they put the shower head pressure on the lowest setting and kind of hold their hand over the spray to divert it even more. Does her AL have any "home care" options? Some places you can hire their aides to come in to independent or assisted living for limited services like ADLs as a stop gap when someone is in between facilities, thus paying out of pocket for the extra time it takes since AL is not set up to have this time. You might ask if there is a way to hire some extra showering help for a few months until you can get her into MC. The fact that she is starting to need help cleaning up after toileting suggests that MC is very appropriate. Most ALs as I have known them cannot do toileting assistance, that would necessitate a move to higher care.

GothicGremlin

I can't really speak to assisted living, but having just moved my sister into memory care, I can speak to my experience with that.

Prior to memory care Peggy was stressed all the time mostly because she was having trouble toileting. She increasingly couldn't locate the shower, or sometimes even the bathroom!  Clothing is mysterious (why can't I wear two pairs of pants at once, asks Peggy).  Or, as she's holding her phone, "which part of this is the actual phone?" Umm, all of it? <- I didn't say that, of course.

Moving into memory care was indeed traumatic for her, but I was there to help ease her in. At first, she viewed memory care as a punishment for doing something bad, and there were a lot of tears. It was tough to convince her that she hadn't ever been bad, and that she needed more care than I, or my other caregiver, could provide. A month and a half later, Peggy's doing well in memory care.  She's kind of leveled out, at least for now. I'm bummed that she's there, but I'm happy with the level of care she's getting - and so is she.  She's actually told me that she should have moved to memory care sooner.

There's a good resident to staff ratio and they are ON it. They get Peggy to the bathroom regularly so that there are very few accidents. They get her dressed in the morning, and change her into PJs at night.  She always tells me how nice everyone is to her. 

Everyone's different so you might have a different experience, but in our case it was a really good call.

harshedbuzz

Caring62 wrote:

We are at a point that changes are needed to support Mom's personal care.  Over the last 3+ years we have been trying to get her to let me and/the Assisted Living care staff help her with this but have been unsuccessful.   Her bouts of UTIs, Candida and general rashes "down there" are increasing due to her inability to clean during toileting and not showering/bathing.  While we know this is not the case Mom says to the doctor and us that she bathes daily.  The doctor knows this is not the case and tells her that she needs to get help with personal care. Over the last several months we see more confusion and angry outbursts w/staff and family when she is frustrated our hurting.  She can get very hostile when anyone tries to help. 

It sounds like her disease is progressing to a point where she can no longer be cared for appropriately in an AL. Does the AL have a geripsych who can consult around meds to deal with her hostility? 

What I would love to know is how Memory Care would be any different when they have a patient who is not cooperative with personal care. 

Generally, the staff at a quality MCF will have experience and training around uncooperative residents. The other residents would be getting and modeling help with their showers which might help. 

Other than personal care Mom still likes where she lives and enjoys dining with others. 

Do you know this for a fact? Have you witnessed it yourself recently? I would be suspicious that mom is reporting something that is no longer happening in the same way she doesn't bathe? IME, when a PWD reaches the point where they're no longer showering, they would not be entirely welcomed by the AL residents who have not had a cognitive shift. My aunt was in AL when she was a more appropriate candidate for MC; she couldn't socialize and converse on their level. At best she was ignored; at worst the meangirls wouldn't let her sit with them. I saw this will dad, too. When my mom wouldn't take him to their house in Florida for the winter after being diagnosed he carried on mightily; he wasn't capable of advocating for her, so it wasn't safe. Dad told me all about daily swims at the pool, playing pickleball a few times a week and dinners with their social group. When I went down to sell the house a few months later, several neighbors told me they never saw dad leave the house in the past 5 years or so. He was reporting on a life he hadn't lived in years. 

 Moving Mom out of her current Assisted Living apartment will be very tramatic for her and the family, let alone much more expensive. 

I'm sure it'll be an adjustment. Medication might help her settle in a bit. We made certain dad's psychoactive meds for agitation and anxiety were adjusted before placement and he settled in fairly quickly. He'd been resisting help with toileting and showers from my mom, but allowed professionals to step in where she couldn't. He was also more cooperative around meds, eating and hydration. Yes, it was about 1/3 again as much as "personal care", but if we'd been able to get him to accept the additional help, the cost would be similar. 

I am trying to understand whether at this point whether Memory care makes sense.

Her situation now is no longer one that is keeping her safe and cared for. It's probably best not to discuss this with her, but to take the steps to move her using some fiblet- calling it a temporary move while her old unit's heater is fixed or a rehab her doctor oredered.

Thanks for your help.

AshleyCD

Hello.  I am so grateful you posted this.  I am in this exact place with my mother.  She had been in AL since March after a bout with covid ramped up mild dementia into moderate.  Fast forward to 1 month ago she fell and broke 3 ribs. Hospital and then rehab for 4 weeks.  She is now severely impaired and has begun wandering as well.  Don't know whether to allow her to return to AL with 24 hour additional care giver and see if she improves or go straight to memory care at same facility as her AL unit.  Her friends will be so troubled in her AL to see her as she currently  is. How often does confusion improve when they return to familiar setting? I was so unprepared for this.  Dad on hospice. 

Caring62

AshleyCD,

So sorry about both your Mom and Dad.   If your Mom is like mine she can be "present" and active in conversations (ignoring the increasing memory confabulation).  However her confusion is growing and along with it increased anxiousness and restlessness.  We are just beginning to think about other potential care settings for Mom.  My prayers go out to you.

To all:

Thank you for sharing your experiences and insights.  You've given us excellent things to consider and questions to ask. I will share with my siblings as we evaluate Mom's next steps.