My mom (83) has recently been diagnosed with stage 6 dementia. She can no longer live by herself. How do I talk to her about next steps?


I have arranged for in-home 24/7 caregiver service but this is expensive. Once the money runs out, then she will apply for Medicaid. How do I talk to Mom about next steps which will ultimately be a Nursing/Rehab facility? I don't want to put her there but I live out of state and cannot take care of her. There is a good facility in her area that I have already toured - just hate the thought of putting her in a home. She may like the social side of it but I still feel like I am dropping her off and this upsets me. She always said that she did not want to go to a NH. Based on recent events and in-patient care in a Behavioral Clinic - I felt like if she was home in her own surroundings that she might get better - and it appears she has for the short term. But long term care in a facility, I feel, is my next option. How do I talk to her about this? Thank you for your advice.



First things first. Do you consider your mother mentally competent? Is she able to understand the choices being offered her, and weigh up which might be the best option?

Because if not, think carefully what you actually need to talk to her about. For example: it is important to ask about her wishes and preferences in general, and to take those into account when you choose a facility. Does she like peaceful gardens or bustling towns? Which atmosphere fits her personality better - shabby but cozy, or shiny and new but less family-feeling? That sort of thing.

But what you don't have to do is confront her with executive decisions, or try to get her active agreement to something she can't (not won't, can't) understand the necessity of.

It is upsetting when you are forced to make a decision that isn't what your mother wanted and isn't what you want either. But you're both old enough - 🙂 - to know that this is not a perfect world. Finding a good facility, checking it out thoroughly, and organising a smooth transition to it is the best you can do. That's the most anyone can hope for.

Oo. You do have power of attorney, do you?
Helpful Answer (15)
Reply to Countrymouse

It will be easier to do this a few months to a year before the money runs out. Some Medicaid nursing homes are better than others. The best have wait lists so you should have applications in place and jump at the first availability. As self pay for a while, those nursing home may have her bumped up on the list. If you wait too long, she will not have this option

Tell her that the doctor says it is time
Helpful Answer (8)
Reply to MACinCT

I agee, you don't need a lot of dialogue with Mom, she won't understand the choices or need. One thing I would urge you to consider, can you choose a place near to where you live? (Unless there are sibs in Mom's current area). As time passes, there will be more emergencies and having her closer to you will make your life easier.
And I endorse the idea that you move her before her money runs out. The choices will be broader. And memory care will be less expensive than NH (and possibly in home care) so she may have more time.
Does she own a house? If so, the sale of that will provide more time as private pay in her next home. Is she or Dad a veteran? At some point she may qualify for Veteran's assistance.
Helpful Answer (7)
Reply to geewiz

What is very unusual is that she is diagnosed as stage 6. The.medical/memory issues have to have been occurring for quite some time. There are only seven stages.

Get her on wait lists in a number of places. There was a Medicaid facility that we were interested in that had a two year wait list.

Are all her legal documents in place, POA, etc. Have you spoken with her doc? Has she been checked for a UTI? Stage 6?
Helpful Answer (5)
Reply to gladimhere

The option for your Mom is probably going to be a memory care unit. That is what I am facing with my Mom. Something to be aware of, though... -- I was told from a friend and others that the doors to the outside of the unit are locked so the patients do not wander (good thing); but, it does not stop them from going to into other rooms and take things. My friend's Mom did that. (And she was in one of the better facilities.) I have also heard that other patients visit others in bed. This all scares me because I don't want my Mom to live in that environment. So, you may want to check to see how that is handled at the facilities you check out. It is a tough decision.
Helpful Answer (4)
Reply to Mapotter

How do you talk to her? You sit down and gently explain things.

I had to do it with Dad and I know many here have been in this situation. You explain as gently as possible that It Is Now Time.

Good Luck.
Helpful Answer (4)
Reply to RayLinStephens

Following with interest as my situation mirrors this to a T - in about a year or so. For what it's worth, my elder law attorney said to apply for Medicaid when you get down to about $100,000. Having a couple facilities in mind ahead of time is good, so you have backup choices. My brain just refuses to go to the point of having "the talk"; as I said, I think I probably have another year or so before we get to that point. For me I think having that conversation will be more for me to assuage my guilt and to say I kept my mom in the loop, as I'm sure she won't be agreeable to a change! My advice is to just take each step as it comes and give yourself lots of grace. Clearly this is not a decision you are taking lightly.
Helpful Answer (4)
Reply to tornadojan

If she's had behavioral issues requiring inpatient care, I'd consult with doctors to see what level of care she will need going forward. If you suspect she'll need Medicaid, I'd discuss qualification with an expert now, rather than waiting. There are Elder Law attorneys who can assist with this.  From what I have read online, rules vary by state. In my state, most people who have substantial needs for assistance, but, don't require skilled nursing care, require Memory Care. Which is a special unit in an Assisted Living facility.

To me it depends on how progressed a person with dementia is as to how they are approached about changes. Some people are so progressed that they are not aware of their surroundings. They may be disoriented as to place and time and explanations confuse them. Whatever change is made, I'd try to take time off to be with her and provide constant reassurance that she is fine and is being taken care of. My LO needed that constant support and love so she felt safe. I will say that in the right environment (Memory Care), my LO did wonderfully and seemed very comfortable and content. To me the key is finding the right level of care.
Helpful Answer (3)
Reply to Sunnygirl1

It is so difficult trying to arrange care from far away--I commend everything you've done for your mom! If she's been assessed at stage 6, it's likely she is incapable of making a decision like this--if you have POA, you might have to choose for her.

I would highly recommend talking to someone in Senior Information & Assistance/Aging & Disability Resources at the local Area Agency on Aging where your mother lives (if you're not sure, you can check with eldercare (dot) gov to find out who to call). They will know information about facilities in her area, local elder law attorneys you might be able to consult, as well as the Medicaid rules for the state where she lives. It's highly unlikely that her state's Medicaid program would cover 24/7 in-home care, so if she is needing that right now, I think she'll probably need to move into a facility sooner rather than later.
***I always tell people on this site to take others' advice on Medicaid with a huge grain of salt, because each state has different programs and different rules, so their advice might be way off for your situation.***

For instance, where I live (Northwest WA), the few memory care/assisted living facilities that take Medicaid will only do so if someone has been paying privately for at least 2-3 years. Here we call this a "Medicaid conversion." So if someone spends down their money on in-home care and then applies for Medicaid, they're likely out of luck finding a place that will take them. Most of the time in this case they have to move out of the area, sometimes across the state, to wherever will take them. So, if someone thinks that a facility & Medicaid financial help are in their future, sometimes it's best for them to move in now and spend their money down at the facility. This way, they can transition onto Medicaid and stay where they are (important to choose a facility that will allow a Medicaid conversion--I've talked to folks who spent down at a private pay-only facility and then got evicted and THEN had to try and find a place that would accept Medicaid right off the bat... a very difficult and stressful situation I wouldn't wish on anybody!!!) But again, it's important to know how Medicaid works where your mother lives.

Sorry for the really long comment! I wish you all the best. I can tell you are wanting to do what's best for your mom, and wanting to take her wishes into consideration. She is lucky to have you in her life!
Helpful Answer (2)
Reply to richamj

DON'T wait for her money to run out. You may find it impossible to find a Medicaid bed for her that way. Instead, place her in a facility that accepts Medicaid and pay privately until her money runs out and it will be an easy transition to Medicaid. Don't forget to prepay her funeral while she has funds. Also purchase clothing, etc that she may need.
Helpful Answer (2)
Reply to jjariz

See All Answers