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?

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?

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?

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.

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.

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.

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.

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.

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!

I agree with ROBINR - find a place close to you - mom was 3 hours away then 40 minutes now 4 minutes which is so much better for us both - you can visit regularly - even a 5 to 10 minutes on your way to the grocery store means much to them - also the more often you visit the better care they get -

Forget about what she said in the past because she is remembering what nursing homes used to be & will think about "a warehouse for people who have no family who loves them" which is a direct quote from my mom - they are so much improved now a days - there are activities, outings & others who lived through the same times & grew up with the same songs

I fully believe mom is better taken care of than I could do - it takes 2 PSWs to shift her with a lift so there is no way I could do this - she goes to 10 activities a week plus religious ones - she has a smile on her face most of time & you can't ask for more

Talk to her about the next steps in terms of your needs. You simply can’t do 24 hour care by yourself for any length of time. I had promised my MIL to care for her at home until she died, which is what I did for my own mother. However my mother’s death was quick, and Dora’s took years. I started with Dora, and I was in serious pain helping her to toilet and shower, because of my own scoliosis back pain. Dora loved me, and that was how we both managed doing something that neither of us wanted.

Hopefully you have all the DPOA and medical directive paperwork behind you.

The ideas that some suggested about seeing if there is any Medicaid facilities located nearer to where you are, then you can visit on a regular basis and help her in any way you can. It might be good to locate several - there are so many people needing services these days that despite new ones opening they are full with waiting lists!

Also, although some 'nursing homes' have memory care units within them, you should look for any/all AL/MC that accept Medicaid, and sooner is better than later (due to waiting lists, Medicaid process, etc.) It isn't clear sometimes when others in this site refer to nursing homes whether they are lumping in AL/MC or not. In my understanding, a true nursing home is for those who not only cannot take care of themselves, but also require more skilled nursing care. If mom needs oversight and a safe place, MC might be a better fit. Visit any locals ones like you did for the one near to where she lives. If possible, take her on a visit too. Many people, especially the more elderly, equate nursing home with the dreary places of the past. Many of the newer ones are quite nice and rather than all old people sitting around watching TV, they have activities, bring in some entertainment, sometimes take the residents who can manage out on a day trip, etc. Yes, there are residents who require much more oversight, but until the person truly needs nursing care, shoot for the MCs. Get on multiple waiting lists - this could take months and you might have to settle for first available!

I have read post comments that mention places that are also AL/MC that are more "home" based, where there are a small number of residents (6-8?) who live in a home converted to MC/AL. I do not have any experience or knowledge about them other than what others have posted, but it is something to consider.

When choosing places to get on a waiting list, ensure they will take Medicaid and start the Medicaid application process asap (enlist Elder Care Atty?) as it will take time to process. Also check the places at different times of the day to get a better feel for what goes on - better to choose wisely the first time, because it is very hard on dementia patients to move. Moving more than once is not a good idea. Best to move once!

As far as discussing with mom - it really does depend on how much she can understand AND retain. If she is truly a stage 6, I wouldn't think she would have much short-term memory or reasoning left. But she is your mother, you would know better than some test what she can "manage." If she is truly adamant about not going, again, try a visit so she can see that they are nice places, and shift the decision making to the doctors or some other entity. Make it sound like it might be a temporary move, doctor's orders, until she reaches some level (shifts the blame AND gives her some hope of returning - this is not likely to happen, but giving someone hope is better than dashing all hopes!) Suggest it as a "vacation" to come visit you. There are numerous ways that you can approach this without mom having to make this decision. Our mother, despite going for years to the luncheons to check out places, and many times saying she had to do this or that, in case "I gotta get outta here", which was her way of saying going to AL, was dead-set against moving in with one of us, or an AL facility, or having one of us move in. No Way Jose. We tried bringing in someone, starting easy with 1 hr/day. THAT lasted about 2-3 months. In her head, she was "independent", "can take care of herself", and "can cook." None of these was true, it was only a left over self-assessment from years prior!

One last suggestion - if you do start considering places local to where you live, would it be at all possible to bring mom to your place, with some in-home care (presumably you are still working) while waiting for space to open up? Although it is better not to move multiple times, this could be an extended "visit" with you (are there other family members near your location?) If she owns her current residence, you could then look into having her possessions moved to storage and prep the home for sale. The proceeds, if any, would help in the 'spend-down' and initial monthly costs of the facility.

Whatever you decide, you'll need to do it soon, if she really is a level 6. Setting up her room with enough of her current BR items plus anything else that is comforting to her if there is room will help make the transition a little easier. If she is still aware enough, despite the dx, she may need some anti-anxiety meds for the initial months after the move to help calm her, but don't go there unless it seems needed. As for you, you have done what you could to keep her in her home. You are looking out for her and trying to do what is best. There is no room for guilt! Just find the best place for mom, and the easiest way to transition her to that place. Then visit often, keep her focus and thoughts away from "home", shower her with love - she'll likely enjoy your visits because you will see her more often if you can move her closer to your home!

Best of luck!

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.