Memory care vs. skilled nursing, questions re care?

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Memory care vs. skilled nursing, questions re care?

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My Mom has FTD / Dementia (not the language type...hers manifests with extreme apathy and memory problems). She lives in our home...I'm daughter, plus my husband and our young kids. Mom fell in March and had two subsequent spinal (neck) surgeries. She's back home and we're currently fine using a home health aide and that is working for us. But, looking ahead, I'm wondering how well Memory Care may be able (or not able) to work for her. When in the hospital, she wouldn't feed herself due to the apathy / lack of initiation...I had to spoon-feed her the entire time or else she wouldn't eat (or drink). Once home, right away she was back to normal and feeding herself (just more slowly than before). So, I think her mind connects "being in bed" with the conclusion "I will do nothing"...and this is indeed what she was doing three years ago when she first came to live with us - not getting out of bed for days at a time (overflowing diapers and all) until we realized we had to literally help her up from bed, due to this mental block of being in bed and wanting to not get out of bed or do nothing. (It's not depression, it fits well with what many people experience with FTD.) So, we always get her out of bed and then she has to start her day (which has been our routine for all those three years).

My questions:
1. If we move her into Memory Care, will they make her get out of bed each morning and then initiate the rest of her care (even if she says "no, I don't need a shower"..."no, I don't need to be changed"? When I've toured a couple of places, they make it sound like they probably will, as long as they don't determine she's just "having a bad day" and needs to stay in bed. (I know they're trying to be patient-centered, but I'm not sure they're all experienced with her level of apathy.) I want her to always get up, because I know she needs that. I'm hopeful I can express that to them and they'll make the daily effort to get her up (and get her toileted/showered and down to the dining room)...but is that expecting too much of Memory Care...or will her lack of self-initiation lead to them saying she belongs in Skilled Nursing?

2. Would Skilled Nursing (if she ends up there one day) spoon-feed / give sips of water to her? I know the hospital won't do those things, so I'm guessing they won't, either? It seems cruel to consider, but would they just say "she won't feed herself, so she either needs a feeding tube or else we can't do anything more" ?? I'm assuming she would only end up in Skilled Nursing if she were to become bedridden due to her neck or something else.

Thanks for the feedback! Mom still has so much physical strength (walking well, etc.) at this point, and I know she's not in need of Skilled Nursing because of that, but I'm not sure how she will fare in Memory Care.

Care Decisions Dementia Behaviors Frontotemporal Memory Care Skilled Nursing Facility

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My moms MC is good…not perfect but safe, active and she appears to accepted the change well. What we all want is a normal parent and that will not happen again. I am learning she will not be the perfectly dressed, coifed and spoken woman she had been until 87 years old. At 90 she is more like a 4 year old. My mom still walks about and talks in confusing sentences. She appears content. That is a good thing..Good luck.

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momdaughter82: Perhaps your mother requires memory care.

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This is to provide a different approach, though it may be confronting. Your mother’s behavior is very much what would have led to a peaceful earlier death a couple of generations ago. She stays in bed, doesn’t want to eat or drink, and is not uncomfortable or complaining. She would gently fade away if you didn’t force the issue, or place her in a facility – and there your question is really whether they would ‘force the issue’ enough.

It may be worth thinking about what you, M, and your family really want for the remainder of her life. It’s a tough call!

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I do understand what you’re saying, but my Mom is only 66 and otherwise (I know dementia is still a big deal on its own!) in decent health (no diabetes or heart issues…relatively strong muscles). It just seems cruel at this point to leave her to die, when she has a good appetite when made to get out of bed. But yes I understand the struggle with leaving someone to their own devices, vs. intervening. For her age, though, I think it would be neglect. But with dementia, it’s difficult to know what to do all around, many times!

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Hello,
Our mom had ALZ and we finally had to place her in MC. At home she didn't have any initiative to get out of bed or do any activities of daily living. At home if you woke her up and sat her up with the regular expectation it was the routine to get out of bed each day, and helped get her dressed she would at least go sit out in the living room then eat /feed herself some if you brought her some food. The MC we chose was wonderful! They would do exactly this each day. They would brush her hair and talk with her about the day ahead, dress her letting her make the choice of shirt, and 'brush' teeth all before heading out for breakfast each day in the common dining room of MC. Then go to the common gathering room. Then a nap before or after lunch. More common room, dinner, then bedtime where they changed her in to night clothes, got all her meds, and wished her peaceful sleep. Some days she was coherent and held a convo like normal, many days she wasn't there. As more absent days took over, we were so thankful to have her in MC. She had a safe, gentle, peaceful final decline. She had been in hospice for over a year. I believe that MC extended her life (of good days) and gave her much better care than at home.
I hope my experience is helpful, it's a hard decision. Best of luck

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Thank you, that was very helpful to hear…just what I hope for my Mom. 😀 I’m so glad your mom was blessed with good care for her final years.

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I think if you find good memory care
tour the place talk with them about your moms’ needs … they’ll do their best for her. I’m sure she won’t be the first or only one not to want get out bed… they encourage normal routines
showers getting dressed going dining room for meals …they encourage social activities singing baking chair exercise socializing… of course each client different but they encourage alot
interaction games etc … much more than you or caregiver can do at home !
iMHO

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As a caregiver for hub and a retired RN mine is in a MC and best decision for all. His mc is based like a dementia village in Europe and approach the whole resident and their needs. They have OT/PT/ST working with them to help reinforce skills and try to get them more involved. Where he needs help esp with ADLs they encourage and help as needed . They have tried to get him to participate and sometimes he does but mainly he walks a lot goes outside in courtyard and loves watching oldies like gunsmoke. The dementia has him not remembering like has he eaten that he needs to drink fluids or shower or toilet wash hands or brush teeth. His attention span is very short and he now functions like a 3 yo . He doesn’t know letters numbers and to try a puzzle it can’t be more than 10 pieces tops. When he was still at home he’d sit for dinner but then get up just after sitting and roam not remembering it’s dinner and he sits in recliner staring at tv. Sundowning and roaming outside at 230am sleepwalking was unsafe and the pool in backyard was a big safety hazard. I found adult day care for him and a brain fitness program but not secured units and when he went to bathroom he’d end up in parking lot.
here’s my reality and I can tell you are in the same boat… we all are… we become so focused on our loved one that we end up not taking care of ourselves. You can’t do all or be all. They call this a journey for a reason… there is an end but only God knows for how long. We tend to think things will be better or if we do this or that it will help. The reality for me was nothing helps as the disease progresses. It’s not like a cancer where they fight but they are still who they are. My hub is not who he was. He doesn’t know me or the kids and for his safety mc was the answer. I go once or twice a week and he thinks I’m there all the time. He would want me to live too and take care of me and that was a hard thing to start. But he’s very happy eating what he wants and they are a wonderful caring group that is like family. He is a DNR because there is nothing that will reverse or cure this and his cardiologist told me that should something happen they will have to do something fast and to reverse decisions made in that case would take time and energy and cost to stop ie usually court. I would say I do not feel guilty at all but initially I had alittle remorse but I now see importance of caregiver groups and individual mental health therapy. It’s all about making memories and cherish them. Mine was caused from an auto accident TBI by a distracted driver and this is our now retirement… he would want me to live life and that’s what I’m doing now . It doesn’t mean I don’t care he is my one and only and yes I am trying to not be bitter but I do hope karma bites… in the end all we can really do is love them keep them safe and take care of ourselves and the rest of our family. We are the legacy🙏🏻

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Yes, I agree that probably all our loved ones would want us to live our lives well, too, if they were able to understand their situation…and ours. It’s sad to know she’s past that point and can’t grasp how difficult it becomes for her caregivers…although my Mom says thank you quite often for the help and that’s so great to hear. But I know my Mom from ten years ago would say “put me in a home!) if she knew what was coming. I’m thankful there are decent places out there, for the moment we decide it’s time. Blessings to you, so sorry for all you are going through with your dad. May God give you peace.

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My personal experience with my mom in MC and mom-in-law in SNF saw much closer attention paid in MC even though the SNF was one of the preferred in our area. While both delivered decent care, there was more personal attention at the MC facility.

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Should want to ask of the facility she's gonna move in to and then again following up. How do you do that? Ohio is starting to make a law to put cameras in the room. On memory, how did they measure it? I got a patch started to get them here on heresay. Say but they don't measure em. I used to be in science and usually when you got something like that. You measure it before and measure during and afternoon to see if you're accomplishing anything. Otherwise the patches or treatment are just billable hours.

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In assisted living, memory care, and skilled nursing my mom was required to be up in the morning and in the dining room to eat three meals a day, then in the common room for activities or tv, even if she needed help to get out of bed and into a wheelchair, which thankfully she didn't need until the final months of her life. She could go back to her room for a nap after lunch, but was otherwise to be out in the common room, even when she was in the end not able to socialize. I think it is required to have people up, not like hospital, where patients are mostly in bed. In skilled nursing they fed her if she didn't feed herself, but I don't really know about memory care for feeding, since Mom was there during Covid lock down and I wasn't allowed to visit in the common room. Ask them if they will feed her. It should be in the contract if they do. They should go over all that with you before she is admitted.

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Thank you for sharing. That's helpful to know, it sounds like your mom was in some pretty good facilities. I will be adding that feeding question to my list to ask.

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I think that the answers to your questions will vary widely according to the type of place you choose for your Mom.
I would begin to explore and tour with your husband. Many ALF has both MC and ALF as well as a sort of in between.
Most memory care will not force elders to do what they don't wish to do, nor force them to eat when they don't wish to. I do think if that kind of care is expected you may be left with keeping your mom at home with you.
As the aging process moves along toward end of life seniors stop eating very much at all and sleep more. It is a part of the process. There is enough of loss and of "trying" and the time becomes more a journey toward peace.

Do visit and ask. It is the only way to find out.
Hope others have some ideas for you about their own placement of family members.
Best of luck.

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Thank you!

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My mother’s MC doesn’t make my mother do anything she doesn’t want to do.

She stays in bed all day, and has to be coaxed out for meals. She doesn’t participate in activities. She’s pretty cranky, so I can understand why the aides just give up.

I think this is something you may have to keep a close eye on, unfortunately.

I frequently bake and bring treats to Mom’s nurses and aides. You may want to do the same. It’s human nature. When we get treated well, we treat people well, back.

Best wishes to you and your mom. ◡̈

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Thank you for sharing. Yes, this is exactly what I'm afraid will happen. Although, my Mom is thankfully NOT cranky (at least at this point), just (in her words) "lazy," so possibly we'll have her disposition on our side. Good tip to bake treats for the nurses and aides, I'll keep that in mind!! :)

Best wishes to you and your mom, I'm sure it's a lot to continue to navigate!

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The apathy's a result of her disease, so Memory care's probably a better fit, as a good MC staff should be trained to handle her behaviors. Ask what their staff training entails. Keep an eye on the staffing ratios too--my mom's first facility lost their RN Director and went down the tubes fast--nowhere near enough staff to keep up with the resident's needs.
Each facility is granted a license by the state to provide services, and within that, a facility may be licensed for a more intensive level of care but may not be able to be staffed to provide it, and so they set limits on what they can provide. You can search your state's website for what's considered MC vs nursing care. In my state, AL's will not hand feed or do pureed foods, but that's usually something a MC would be expected to do, but you must make sure that they will. Another cut off is whether a non-ambulatory person who needs a hoyer lift is nursing care or not. Ask them what percentage of their patients they've had to transition out to a nursing facility (all the places I looked at said they were staffed so that they took their dementia patients to end of life), ask if they will alllow in-house hospice. Basically you want to go in, explain your mom's presentation, and clarify what behaviors or physical requirements would cause her to be moved from MC to skilled nursing.
Your mom should be assessed for intake by the facility's nursing staff and they will work with you to come up with a care plan (that should be updated every 90 days or as needed) that supports her ADL's, so getting her up and out should be detailed on the care plan. It might look like ''Mrs. Mom has trouble initiating getting out of bed. Staff will assist Mrs. Mom when needed to get out of bed each day to attend breakfast.'

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Thanks for all the helpful thoughts and info!

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There are ways to help your mom with memory and routines and increase independence, including toileting. I work with individuals to maintain independence, most of these things you are stating are not having the environmental cues needed.

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Honestly asking because I don't know and maybe there's something I've never tried...how do you cue someone to drink...without saying "let's take a drink" all day or actually handing her the water time after time? She constantly says "in a minute" or "give me a minute" or "I just had a drink" or "okay" over and over and over...all without actually doing it. She has major issues with perseverance and, as I said above, apathy/initiation...plus memory. She can't really develop new habits, due to her dementia.

For toileting, we have a 2 hour timer but she NEVER gets up to go when it goes off...the timer has ended up being for me, lol...and I go over and convince her to stand up, then we go together and I assist. EVERY aspect of her life is limited severely by the apathy/initiation problems. But maybe you have new ideas, please share! I have had several PT/OT's come in over the past few months, but so far no one has had any new ideas. Dementia is tough!!

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She can feed herself (just doesn't drink water a lot) when she's NOT in bed, lol. Out of bed she does great!! She's not quite ready for Medicaid (in spend-down mode right now) but yes I'll keep that in mind, to have her assessed by the doctor when we're at that point. The neuro-psychologist said (a couple of months ago) that Memory Care was appropriate for her, in her opinion. I'm just unsure how either MC or SN would do with her apathy...??? Maybe the only way to know is to, at some point, give MC a try.

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Elizabeth Y is spot on. Since you are in spend down mode, you may want to consider a facility that has both MC and skilled nursing so when and if the time comes for a needed transition either because of advancing disease or finances transition will be easier. This will also allow you to have more choice of facility. Admitting to SNF while on Medicaid is limited. At least in my area, admission while you are self pay is much easier.

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Talk to her doctor about having her assessed for LTC (which is covered by Medicaid). If she can't feed herself, I'm not sure she's a candidate for MC, but it may differ by facility.

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Memory care vs. skilled nursing, questions re care?

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