Parent Resistant to AL move

AnonyMis

Hi all, would so appreciate some advice. My parents both have dementia: dad is early/middle stage 5 and mom is stage 4 (tam cummings). The last couple days we as a family have talked to her hours about finances. Her anosognosia is off the chart (it feels like). She feels like she has no control and is so sad and angry. She ran from the house and my daughters found her hiding in the yard a couple houses down the street. She tried to "run" from the discussions a couple times. In the past she has threatened to lock the doors if we have homecare help. It is time for them to go to assisted living/MC. We're just not sure what to do knowing that she will fight it and literally scream and yell and throw a tantrum. Advice, please. The whole situation is so heartbreaking. How would I actually get her to go?

Iris L.

Others will come along with good advice for you. But for now, your immediate task is to CALM your mom and to try to regain her trust. Soothe her the way you would soothe a small child. She is rightly afraid of being abandoned. For now, don't mention assisted living until you learn the tactics used by the more experienced members. Just try to have a pleasant, calm and soothing weekend. Engage food treats if you can, also music.

Iris

Quilting brings calm

Hour long conversations are maybe not a good idea. People at these stages get anxious after just short conversations. Long ones are just too stressful. I’m sure you were trying to reason with her and logically explain things… but she no longer thinks logically.

There are some ways to get your mom to listen to you about getting her POA, getting joint checking etc… if she’s calm and if she’s normally a reasonable person. You have to present it in a way that she thinks you are doing her a favor rather than taking something away from her. However My step-dad won’t give me POA because he is stubborn and paranoid.

one way to get them into AL/MC is to present it as a temporary move while extensive repairs are done at the house

M1

If you have power of attorney, you just move them with no discussion ahead of time. If you don’t, you need to come up with a plan for getting it. There are many common sayings on these boards, and one of the most common is that you don’t try to reason with someone whose reasoner is broken. I know it seems harsh and breaks the dynamics of how you used to talk to your parents, but the only rules that apply are that safety drives the decision making, and you plan for their worst day, not their best. Sorry you are dealing with this, it’s never easy.

SkyeHooks

You can appeal to their better nature. The health needs of someone they love.

When my parents needed to move in with me, my sister told my Father that Mother needed help to get well. My sister pointed out that she was sleeping too much and not eating enough. Mother needed to go to a place where people could help her anytime she needed help. Father somehow recognized that she needed help when he could not recognize that he needed help, too. My sister told him that Mother also needed him to help make her feel secure while getting help. She would be afraid to go alone. My sister explained it all as simply as possible. Quietly. Easy concepts. No talk of money. Just one person asking him to help his wife get better.

Emily 123

Hi Misa.

It sounds like the disease has progressed enough that it's time to pivot, and one of the goals needs to be keeping her calm and emotionally stable if you can. No more planning discussions--she can't juggle all the information because she can't remember more than a few pieces of it at a time. Conversations should be short and benign. Remove anything that triggers her or makes her anxious, like bills, etc--out of sight is out of mind. Reassure her you love her and agree with whatever memories or information she shares with you. Just let her be right, even if her memory's a bit off. Your family will have to start doing the prep work to find a place. A lot of times that means working in the background to make things happen.

I know that's tough--we want to please our parents, and we want them to sign off on decisions we're making for them. But. If she's forgetting day to day things, she won't be able to assess any AL's/MC's, and if she's reluctant then it will make for more wear and tear on everyone emotionally. Frankly, I talked my mom around to thinking she chose hers because I kept pointing out the features I knew she'd like and acting like we'd visited a bunch of places together.

What about making the reason for moving all about your dad's needs? That a downsizing move is something to help take the burden off her?

AnonyMis

Thank you ALL so much for your insight and help. My brother and SIL were here for their annual visit. My mom's sister is also visiting and adds an incredibly challenging dynamic to try and care for my parents. Brother and SIL are calm and patient and good mediators. In some ways I'm glad they spent so much time "trying" to give mom a chance to voice her feelings. It actually gave them a chance to see how much her disease has progressed, sadly. I mentioned to them that mom's cognitive state doesn't allow her to reason like she used to. They had good intentions but it was exhausting and a mess. Fortunately, my brother and I do have POA. I'm just thinking ahead about how I'm actually going to get her out of the house. She blew a gasket at things we had already discussed before (credit cards/not driving). I have talked to her about both calmly and patiently several times (because she forgets) over the last several months. I think it was more difficult for her to hear my brother and SIL agree about everything I had already said. We are hoping to tour some facilities next week. I'm concerned about when I actually do have to move her there is going to be a literal screaming/running away incident again. Again, thank you for all of your advice.

harshedbuzz

Hi and welcome.

You are past talking with your mom/parents. That ship has sailed. She no longer has the cognitive skills to participate in such topics and discussions and going through the motions has stressed her to the point that you have collectively activated her flight-or-fight response.

Stop talking. You are not going to gain your mom's acceptance of what you need to do next and you certainly aren't going to get any gratitude for taking the necessary steps to keep them safe and cared for. Let that go.

If you want to try in-home help, you may want to introduce it as a friend of yours who needs work and is going to treat mom to some housekeeping-- your treat. She may go along if this is presented as a situation where she's helping someone.

Or tour MCFs (because mom has shown you that she requires a locked unit for her safety), pick one and make it happen. You'll likely need some sort of fiblet to accomplish the actual move and kick the can down the road when they start angling to go home. We did the "fancy rehab" for dad's unsteadiness on his feet, others have used pest infestations and sewer line failures to get their LO to a "senior hotel". If the house will be sold, move mom and dad out, then prep and list it. They don't ever need to know their beloved home is gone.

Meds might help. I would get your mom in with a geriatric psychiatrist for medication management to relieve the anxiety she is feeling and can no longer process.

Good luck. The middle stages were the hardest for me.

HB

Emily 123

Hi Misa,

When you look at places, it might be good to explain your concerns about your mom's reluctance and see how they handle their intakes.

This is always helpful for everyone to read, if they haven't already.

https://www.smashwords.com/extreader/read/210580/2/understanding-the-dementia-experience/Medium,Arial,Black,White,One-and-a-Half

These might be helpful as well...It's always good to hear from multiple perspectives as families try to navigate the challenges.

How To Convince Someone With Dementia They Need Help: https://www.youtube.com/watch?v=ncKhXQtnyfI

Talking to a parent: https://www.youtube.com/watch?v=oiUpztj2DkQ

5 losses: https://www.youtube.com/watch?v=awBm4S9NwJ0

Stepping Into Dementia’s Reality: Advice From Teepa Snow | Brain Talks | Being Patient:  https://www.youtube.com/watch?v=EOCZInnLQd0

jfkoc

Please re-read Iris. Calming the situaion is the most important right now. Then read what everyone else has posted. Stop talking about the situation with your mother. The ship of reason has sailed.

Please read the POA and be certain that it is durable. Then start putting together your plan B.

Goin to look at facilities will only give you limited information. You can start your research using your phone. There is a post regarding what to ask which someone will hopefully pull up. I will add that you want to see a copy of their contract, know the exact training program they use and look at their license with the state to certify the services they provide. Looking bright and cheery and good food is the frosting on the cake. You have to do the digging for the facts. Oh, you can also google to see reviews and do try to talk to some family. The parking lot is a good place for this.

Placement is a big deal...you only want to do it once!

BookBuffBex

I moved both parents into AL about 8 months ago following a hospital stay by my dad. I hired a consultant to help me find an AL that could best accommodate them both (Dad has more serious physical health issues, Mom has dementia/non-specified ALZ). They are very co-dependent so I was able to get mom to agree to move in order to continue living with dad. I did not take either of them on the facility tours. Initially, mom was told it was temporary while dad was rehabbing. She talks about "when things calm down, we should all find a place to live together". She also has severe anosognosia. The plus side of this is that she doesn't remember from one moment to the next. So if you have to lie to get her to AL, she won't remember. There are lots of "tricks" I've seen people on this board suggest for getting a loved on to AL - from "it's a vacation resort" to "we're going out to dinner". Find the one that you think will work best.

Since your mom sounds like a bit of a flight risk, you want to be sure to choose a facility where she can't get out easily.

Good luck!

MP8

I had a similar experience with my mother. I found that the facilities I visited were very helpful with ideas on how to handle fierce (and I mean fierce) resistance. In the end, I finagled it with using a respite care room, which I told her was a hotel that would help with her medication, and that I needed to go see my daughter across the country to help because she had a health issue - fiblet, but every time my mother started getting upset, I'd alert my daughter and she would call and say how much she needed my help. (My mom was living with me, so that made a difference in the explanation; since your parents are still in their own home, this may not work for you.)

Once she got there, she actually loved it. I know not everyone does. The things she insisted on doing at home - very dangerously, like trying to cook, use the disposal, go out on her own - vanished.

I moved her directly from the respite room to a room down the hall after a couple of weeks.

Several people on this board recommended calling the 24-hour help line (800.272.3900) and the social worker I spoke with was VERY helpful, also.

Hope your move will go as smoothly. But I hear you - getting her there was exhausting, frustrating, and frankly, really scary.

ButterflyWings

MisaW- huge hugs to you. I almost lost my mind trying to survive middle stages with my one LO - cannot imagine two at a time! That must take co-dependency to a whole new level. With anosognosia and denial (two completely different things) operating to mask dementia progression.

I can't add a single thing to the excellent advice our forum mates have given you, so forgive me for repeating or restating it. This is super important feedback from people who know, because they have been there and literally done exactly what you are needing to do now.

Yes, to job#1 at Iris said, reassure and calm your mom and restore trust if you can. Not by reasoning with someone whose reasoner is broken. As the other members said, Stop Talking with them about things they cannot grasp or help with anymore. And in stage 4 and 5 that means everything basically. You are in big time fiblet land now. As they say, that's it and that's all. It is compassionate and wise to give whatever answer brings the most comfort. Pretend you have your fingers crossed behind your back if necessary to feel better.

Neither mom nor dad is in charge anymore. You are. So please don't let dementia drive the train anymore. They gave you all their decision when they made the POA determinations and now are relying on you to fulfill the trust they placed in you at the moment they signed.

I understand the desire for other family to experience the reality for themselves. But if they are still in denial at all, or not in agreement with how you are ready to proceed, you will still have to do what is necessary for safety of both LOs now. Thank goodness you have POAs done. Is it shared? Or one of you is primary and the other is backup? Read it, as Jfkoc says. Maybe a free consult with a certified elder lawyer (CELA) is still in order, to understand exactly how to quickly move forward to do what must be done to move them to a safe, secure, supervised new home.

I'm sorry you are joining us in this 'elite' circle of families with the worst disease of all. There unfortunately are millions of us. What a blessing that your family has you to step in and step up. You can do it. Don't ask, don't tell worked best for me.