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