Am I out of line?

Lisablock02

Hi, community. I'm currently unable to sleep. My Mom (75 years old) came to our house after an unidentified cognitive episode in February. She was diagnosed with Alzheimer's a few weeks later. As her identified POA, I, along with my brother, got to asking our mom her wishes and taking action to find a place for her to live, sell her house, car, straighten out her finances, protect her accounts from the ongoing fraud that was happening, and ensure that she is getting all of the medical care that she needs. I am doing this alone as my mom is single and doesn't have a "tribe" around her. She moved to her AL home mid-May and has now been there two months, with two weeks of that time spent visiting a sister. I work two jobs, parent three kids, and we are going through the loss of my father-in-law. This entire thing has been a lot.

Today while at work, I recieved a text from my aunt, where my mom is spending a couple of weeks for a visit, that apologized if she was stepping on our toes, but that she believed that my mom is unhappy, she found a place for her to live close to my aunt (an hour and a half from me) and she took my mom to see it and talked to someone and they are expecting my call. I have been totally blind sided by this. I have not received anything from my mom, my mom is a negative and generally unhappy person, and these transitions, along with the personality changes of this disease, have made her difficult to be around and make happy in any shape or form. I know this. But I'm struggling with this situation. It feels wildly inappropriate. I don't have a relationship with this aunt; my brother and I were not talked to about this, and I'm feeling manipulated and pressured out of nowhere.

I am struggling with balance. With questions of am I over-reacting to this? I am also completly at a loss as to why this would be appropriate. How can I manage her needs and coordinate her care from so far away? It is hard enough and labor intensive enough with her 1 mile from my house. I don't want to damage one of the only relationships my mom still has, this relationship with this one sister, but it feels like an ignorant, disrespectful, and inconsiderate attempt to follow the whim of someone who isn't going to remember the things that are making her miserable in a week or two. My mental and emotional reserves are so low, and I am empty. I struggled to even respond to this text (which I eventually did with a: Thank you for this text, my husband's father is actively dying and I can't address this right now). Above all, I want to do right by my mom, and I recognize that if I am tasked with being the one who advocates for her and ensures that she has what she needs, I need to be able to see her regularly. It is important to me to bring each decision I make to her as long as she is able to engage in conversation with me, so she feels like she is making the decisions…apparently, I am not wanted or needed? I'm also not at all sure that she would be happy anywhere. I am wondering if I task her and my aunt with re-assigning a new POA if she wants to move? I really derailed my entire life to make sure her affairs were in order and all of the things she needed to have done were done with her input and direction.

Am I overreacting?

SDianeL

no you are not overreacting. Your mom’s sister doesn’t understand your Moms illness. I would call her and explain in detail your Moms behaviors and then firmly tell her that you are making decisions based on what is best for the future care of your Mom as the disease progresses and she declines. Moving her away from you means you will not be able to make sure she is being taken care of. Ask that she please stop discussing it with your Mom. Do you know what stage of Alzheimer’s your Mom is in? Can she really reason and make good decisions that she will remember? Or is it time for you to just make the decisions on her behalf?

cdgbdr

You are not over reacting. In order to manage her care well, it is best to have her nearby. You could fib and tell your aunt there is a contract or lease through next May. I doubt your aunt wants POA if she knew what it would entail. Your plate is full and you're doing a great job for your mom.

harshedbuzz

@Lisablock02

I am so sorry you are dealing with this situation on top of everything else going on in your life right now.

You are not wrong— auntie overstepped egregiously. As the first degree relative and POA it is entirely your call to make. IMO, a PWD needs to be near the POA full stop.

One thing that I have noticed as a care giver and decision maker for my parents, was the amount of interference and opinions offered by people of their generation. I think sometimes they project the losses associated with dementia on themselves making it all about them. That may be what you're seeing here. Or it could be the kind of poor judgement often seen in early stages of a cognitive shift.

I would get your mom back in the AL near you and then tell Auntie this is not open for discussion. You and your brother made a plan for mom, her doctor supports that plan and that mom deserves POAs who will likely outlive her. If she keeps it up, I would consider putting her on the "no-fly list".

HB

psg712

You are NOT overreacting. Agree that your aunt does not have a good understanding of your mom's capacity for sound decision making. Nor does she understand the responsibility she'd be taking on if your mom were to move to her "jurisdiction". You are your mom's advocate; don't abdicate to an older family member who is acting on emotional impulse. She no doubt loves your mom and is reacting with grief at the changes she sees in her.

Your text response to her was admirably restrained. I gather that there is some difficult history here if you don't have an ongoing relationship with your aunt. Does your brother have perspectivethat may be helpful to you?

When do you plan to bring your mom back to her facility? I would say soon would be best, as your other family circumstances allow. I'm sorry you are dealing with this extra stress in a time of loss. Hoping that your father-in- law passes peacefully and that you somehow get some rest. I know that is hard to come by.

H1235

You are not out of line! I liked cdgbdr suggesting that she is in a contract at her current location. Even being early on with dementia, your mom is not going to be able to consider all the complex details that are involved with the decision to move her. She probably also lacks empathy and is unable to understand what you are going through to take care of her. I think your aunt is probably also oblivious to what it takes to care for your mom. I would not give this move a second thought. Your aunt is out of line. If this means she doesn’t speak with you again so be it. You need to do what is best for your mom. I think that means having her near you so you can manage her care properly. If your mom gets mad, well that’s the dementia not you. My mom sounds a lot like your. I am generally the one that takes the blame for things. It’s so hard. Don’t second guess yourself.

Quilting brings calm

Everything you listed as reasons to keep her where she is is totally valid. Get your mom back in her AL, thank your aunt fur her concern … and then do not allow your mom to travel from the AL to stay with anyone again. Your aunt can come to her to visit or they can talk on the phone.

ARIL

I am so sorry you are dealing with so many hard issues all at one time. It’s a lot, for sure.

Yes, auntie is out of line. Yes, your mom needs to be close to you.

So sorry for all the loss and all the stress. It does seem to be how most of us experience this: too much, too many things all at once. Take a breath. Remind yourself that you are doing your best—and your best is plenty good enough.

ReineckeB

The disease causes them to lie sometimes. My mom will tell people that she is unhappy and that I don't take her places and that I don't get her the things that she wants. It is so hard! Because I do work very hard to make sure she is getting cared for. She lives with me and my family and we are always doing our best to get her things she likes and take her places. So I talked to the geriatric psychiatrist and she said that will continue to happen because of her brain being damaged. She said to be very careful to not take what she says personally and to let other people know the situation so that they don't try to step in and make the situation worse. Your aunt definitely does not have the right to move her! You are the POA and you are doing the best for her. You are not over reacting or over stepping. I am so sorry! This really is so hard! Taking care of a parent is a 180 shift and it is exhausting for sure.

Lisablock02

Thank you for this assurance. I appreciate your perspectives as they help me ground my own. I am trying to compartmentalize as we deal with my FIL's passing (last night - aggressive glioblastoma - peacefully and in his sleep) while trying to stabilize my own mind so I can focus. I did end up getting a few hours of sleep and am feeling a bit more grounded today.

I have a rough draft in my head of a very firm and clear message for my aunt setting the boundary of what our family process is and if she would like to be of support or assistance, she is welcome to meet with me in person or set up a phone call but text messages and preemptive decisions that usurp our family process are not welcome and will not be tolerated. I am also considering handing off further communication to my brother or even my husband (when we are past this particular season) and making communication with me by "appointment only". This has been ridiculously stressful and confusing. I do not have mental capacity to manage this kind of behavior.

I also appreciate your points in maybe discussing the harm in visits. Where does a person get good literature to hand to someone to explain what is happening to the Alzheimer's brain? I do not have what it takes to deep dive into explaining what is going on to my aunt (and let's be honest, to my mom as well). You are all right - my mom isn't able to think things through, she isn't able to manage or handle these decisions and if family members can't be trusted to navigate her needs appropriately.

I am a mental health professional. I have worked in child welfare, the medical field, and now in clinical outpatient therapy. I have never dealt with anything like the Alzheimers brain. I can't imagine what it is like to loose your mind like my mom is….but it's also a whole new level of insanity on this side of the experience as well.

Thank you. (deep sigh)

Lisablock02

https://alzconnected.org/discussion/comment/248757#Comment_248757

"PWD needs to be near the POA full stop." Thank you…this felt very abandoning…like my aunt just expects me to let go of my relationship with my mom and let her live a life without me and I just write the checks. This was very hurtful (although I am guessing not intended and probably due to selfishness and shortsightedness).  

"One thing that I have noticed as a care giver and decision maker for my parents, was the amount of interference and opinions offered by people of their generation. I think sometimes they project the losses associated with dementia on themselves making it all about them. That may be what you're seeing here. Or it could be the kind of poor judgement often seen in early stages of a cognitive shift."

Thank you again for another perspective. She is 1 of 9 siblings, all of who are "Senior Saints" and ALL of who were clear upon my enacting the POA that this is "Your (my) show kid."….this text is so very violating feeling. Poor judgment has been an issue for YEARS with my ultra independent mom. My brother and I waited as long as we possibly could to step in - and she is very unaware of the depth of her impairment and her personality changes. Everything is someone else's fault, and she needs to "straighten them out"…..

H1235

This is an excellent article about dementia. I would not expect your aunt to read it and suddenly understand. There are people that just seem to live with their head firmly in the sand. In my experience trying to get through to them is a tiresome battle that will not be productive. But still I hope you find this helpful.

understanding-the-dementia-experience.pdf

This is a great staging tool. It’s shared often on this site.

DBAT.pdf

psg712

https://alzconnected.org/discussion/comment/248805#Comment_248805

Great ideas. I especially like the rough draft of message for your aunt, setting boundaries while still allowing her to offer support. Maybe this message could also help other family members who care but don't know how to show it.

I also find it exhausting to try to explain Alzheimers thought processes or behaviors to others who care about my mom but have unrealistic views of what she can understand or participate in. Sometimes I just have to let them believe what they want to, as long as it isn't disruptive to mom's routine.

We've talked recently on this forum about the challenge for those who work in health care to handle our own cognitively impaired family members. It's a whole different world, one we thought that our professional backgrounds might prepare us to navigate. But when it's your own parent ... mind blowing and heartbreaking.

SDianeL

The book “The 36 Hour Day” is a good resource to give or recommend to people who need to understand the progression of the disease.

Lisablock02

@Everyone - Thank you. Your responses have been so very validating. Things have progressed wildly. As I said in the initial post, Aunt took my mom to visit another assisted living center near her during a visit. In the meantime, I was at home parenting my children and supporting my husband through the loss of his dad. On the day of my FIL's death, I received the note that they had gone to a different AL center during the visit.. I asked for some time and space to deal with the death, as well as my brother's and my options about this, in an email. My "mom" wrote a $3000 check to the new place, and she and my aunt planned a move. I have POA, but I legally cannot stop these things - she can undo anything I attempt to do. Due to my situation, I was outmaneuvered. My mom is moving an hour and a half away. My brother, my husband, and I have spent HOURS talking this through and putting our boundaries in writing. I fully anticipate this to blow up in one way or another - but I think I have to let it happen. She is still in the stage where she can function enough that she can royally mess things up due to memory and confusion, but is being enabled by someone who does not understand how impaired she is. My mom continues to refer to her condition as "memory issues" and will not use "Alzheimer's". I think this is a combination of denial (a lifelong habit) and her actually not remembering the diagnosis. This really does feel like watching a train wreck and not being able to look away. I plan to let her new AL facility know that I am POA and they can reach out to me if they need anything, and I am going to have to start directing my mom's demands for support to my aunt.

Again, I so very appreciate you all providing some validation. I was so intensely triggered over the past month. Since getting that text, I think I have been in "fight or flight" mode constantly. I can't think or make sound decisions in that kind of mental space. Because we have three kids at home, my husband was covering my responsibilities at home and couldn't be there during these moments - my brother is 9 hours away and is supportive of me, but not accessible in the moment when these things come up. Dealing with a death in the family at the same time put way too much on me all at once. It was too much pressure, with too much emotional reactivity. I know that I have not failed, but I also know that this is not what is best for my mom - and she doesn't know it. At least she will be kept physically safe by being in another AL facility.

SDianeL

https://alzconnected.org/discussion/comment/251859#Comment_251859

thanks for the update. So sorry. This must be so stressful for you. Soon your Mom will need memory care. I would discuss that with the AL facility to see if she can age in place or will they have to move her. Do they have memory care adjacent to the AL? Please keep us posted. It may help others in this position. 💜

H1235

I know this sounds harsh, but I took all access to money away from mom when she moved to Al. There was a resident account at her Al that I put money in for hair cuts and special activities. She could not be trusted to make sound financial decisions. I think it is very unusual for someone in Al to have a checkbook or debit card. So who is paying the rent for the Al each month? I would recommend you take away her access to money. Don’t tell her you’re taking it. Let her think she lost it. Do you think your aunt would take her to a lawyer and have her change her will or change her DPOA to your aunt? I have a niece that is awful. Mom will do anything for her. I was so worried she would take mom to the bank and convince her to give her a bunch of money. Since the bank would not deny mom access to her money (even though I had a letter from two doctors saying she was not competent to make decisions). I considered closing the account and moving her money to a different bank without telling mom. Thankfully the niece moved out of state. You need to protect your mom from herself. I know all this is easier said than done. It is so hard to know what to do and then to have your aunt throw a wrench in things. What a mess. Like it’s not hard enough already.

psg712

100% agree that she should not have a checkbook, credit or debit cards, or anything more than a small amount of cash. She is a prime candidate for theft or a scam. Who signed all the documents for admission to the AL? If it was your mom, AL management needs to be informed immediately that mom does not have capacity to sign legal/financial documents. On that basis alone, you could challenge her move if you so choose.

If aunt is so determined to have your mom close to her, send her a list of everything she will be responsible for. This could include keeping her stocked with personal care supplies, being there (or transporting her) for medical appointments, meeting her at the ER for any emergencies (no matter the hour)...whatever tasks you would be doing if she were living close to you. You are raising your kids. You cannot make a 3 hour round trip for every issue that arises.

I know this sounds harsh, but if you really think this move is a bad idea, don't help her to do it. Other than handling the finances, let mom and aunt arrange all of the moving - packing, hauling, setting up her place. Maybe that's too rough. But aunt needs to know what she's in for. Mom's care won't get easier as time passes. You have too much on your plate as it is. And you are right - this arrangement will likely blow up at some point and Mom's needs will be back on you. I'm sorry that you are going through it this way.