Advice/At Start of ALZ Journey

Jenflex

Hi all, I’m new to the board. My mom is almost 78, lost my dad to small-cell lung cancer after a 57-year marriage back in February.

(Mom has had a lousy year, not to put too fine a point on it.)

Prior to Dad’s passing, my brother and I had noticed Mom starting to repeat stories and be more emotionally volatile. We were concerned since our grandmother (Mom's mom) had dementia. Since Dad died, it’s become increasingly clear that there is definitely a disease process at work.   

I am now responsible for helping Mom make sure bills are paid (have DPOA), and generally stepping in to the areas where Dad would have taken care of mom.  Bills have not been going well…she cannot maintain a checkbook register or pay bills online. I also have serious concerns about her decision-making.  The home she’s in has deferred maintenance, and we’ve had some providers come in to do different types of work…she trusts EVERYONE.  They are “so kind, and I can tell they are really good people.” (When I express concern, I am either overstepping, or else I am being mean.)

Mom is moving out of the home she shared with Dad next week, to a condo. She refused to consider an independent living community, and we were lucky to find the place she ended up buying.  It is all one level, and there appear to be good neighbors. Although the condo isn’t an ideal place, it is better than her being alone and isolated in the old home, so against my brother’s and husband’s preferences, I supported this.  However, I share their concern that the condo will not be sustainable for a long period of time.

Mom has an appointment with a neurologist on 7/2, to assess cognitive decline.

I would like advice for knowing what to look for, what to do, and how to know when it’s time to draw a line and insist on a more structured living arrangement. 

[Deleted User]

The user and all related content has been deleted.

Jenflex

Thank you for your response. You're not saying anything that I haven't thought myself.

The things that are better in the new place are some you note (smaller footprint, and no lawn care, for example), but also some that you couldn't know:  she will have neighbors, and she has agreed to move out of the large home. 

Mom functions fine with all ADLs. She is active socially with her group of friends, and believes all her issues are due to her grief.

The escalations I've observed center mainly on IADLs that she didn't complete before Dad passed.  For these (things like the bills, or selecting service providers for complex needs), he was her coping strategy.  She isn't learning these.  But she manages her meds and is cooking fine; no issues with these.

Mom is also strong-willed (runs in the family, I admit!) and has been very definite on what she WILL and WILL NOT do. And, the type of independent living arrangement or CCRC,  that would have been ideal, has a very long waiting list. 

Given what appeared to be two bad options (supporting the condo decision, or watching her dig in her heels in the home until things were much more advanced), it seemed better to take a step in the right direction; i.e., the condo.  With this, she is willingly moving out of the home, and we've been successful in getting a lot of downsizing accomplished.  It's also sustainable for her financially, which was not the case in the home she's leaving.

I'm also, frankly, concerned about her pulling the DPOA.  She just signed it in March, and until/unless we have a letter from a physician stating that she's not competent to revoke, I'm concerned about that outcome. 

Last nugget here, is that Mom has already cancelled a neuro appointment.  She "just couldn't deal." I know it's that she doesn't want to know what is going on. If she cancels this next one, I will do exactly what you describe, and schedule it and take her.

I know I'm going to tick Mom off and hurt her feelings/upset her along the way, and I can live with that (she says now, naively). However, I don't want to be harsher than I have to be until it's time.

Appreciate the opportunity to step through what's happening in this context.  I'm trying hard to find the right balance between doing what's needed/making the decisions mom needs, and that Dad would have wanted me to make, without handling it in a way that increases anyone's suffering unnecessarily.

MonicaG

Wow. Your situation is so similar to mine! My mom is also 78 and lost her husband in Feb 2020 due to stomach cancer.  There were definitely signs but I chalked it up to her being so stressed about her husband dying. So the ALZ symptoms were masked I believe and also looking back, it’s like so clear now. But anyway, my mom is also in a condo and it’s all older people. When she first moved in, she was still driving and working. So things were ok.  It got bad when her driving privileges got revoked and she can no longer work. She was bored and lonely. Me and my sister were spinning our wheels trying to keep her busy and nothing was ever good enough. She couldn’t understand why she couldn’t drive. It got so bad with her being really, really angry that doc put her on Seroquel. Her mood is better and so is her concentration. It’s like a miracle. She accepts she can’t drive, nor handle her finances and she likes where she lives. We also tried to talk her into AL but she got super angry. Depending on how independent your mom is, she will probably do ok with some minor adjustments. My mom was also making some very bad decisions and so you will basically need to micromanage her finances and really keep an eye on her stuff.  My mom gave out 4 credit card numbers, signed checks totaling $1300 in one week to an addict in our family.  Believe me, it’s been no picnic. She’s been diagnosed stage 4 so she’s in that middle ground. I also put life 360 on her cell phone without her knowing it, but that certainly isn’t full proof. Also, make sure you have keys to her condo. As for structured living, she needs to be declared incompetent. If she starts wandering, or leaving water running, stove on, things like that. My mom overtook her medicine and couldn’t get out of bed. So if your mom takes pills, make sure to get the pill organizer. My sister and I felt she needed MC but she absolutely refused. It got really nasty. The only thing keeping her out of MC is the Seroquel. It’s a day to day thing with that cloud of uncertainty hanging over your head. I get counseling for myself because it’s like dealing with a stranger now. Expect a lot of “flipping the script” I call it. One day she hates her condo, next day she loves it, I need a haircut, I didn’t want a haircut, etc. those are the things I can think of now. Also, if you read other posts of other people’s experiences, it helps a lot. Good luck at the neurologist.

Jenflex

Thank you so much, Monica!

Stuck in the middle

Hi, Jen.  Welcome aboard/

I think the time for a more structured living arrangement for your mother was probably about two years ago.  Your father filled that need, but now you and your brothers need to take over.  I wouldn't leave a six-year old home alone, nor would I a woman who can't write checks and "trusts EVERYONE."  That level of poor judgment tells more than a psych eval, in my opinion.

She is fortunate to have you to help her.  Again, welcome

Jenflex

So I think this starts to get at some of what I am asking. As DPOA, my job is to help her live her life; not live it for her. What should I be looking for with the neurologist to ensure that this is objective? What questions should I be bringing up at the neuro?  And, if the neuro isn't sufficient, where do I go there?

Mom is very high functioning in some ways, and has a band of friends who are fiercely loyal to her. I need more than just my interpretation...I need the DPOA to be irrevocable, for starters.

M1

Hi Jen, don't be surprised if she balks at the neuro appointment--this happens frequently.  You might head it off by a fiblet of some sort, such as:  required by Medicare or won't fill prescriptions unless you go, or insurance will be cancelled if you don't go, something like that.  You probably want to put your concerns and observations in writing, and give them/send them to the neurologist's office ahead of time, as that can avoid uncomfortable conversations in front of your mother.  Most people with dementia don't recognize their deficits (look up anosognosia) and will insist they are fine; it's the families that complain and realize something is wrong.  If you read a lot of threads, you will see that most of us do not discuss the diagnosis with our loved ones, either. 

I agree with the other posters that the ship for independent living has probably already sailed.  Your dad was probably providing "cover" for your mom's failing functioning--we all do that, to some degree, but the sudden loss of that scaffolding makes the deficits very apparent.

Read your DPOA papers carefully.  Does it require a trigger, or not?  Some do, and some do not.  A letter from her PCP or neurologist can obviously be helpful.  Many of us set up online billpaying and redirect mail, so that she doesn't even get paper bills.  If you are not already a signatory on her bank account, you can investigate that also.

I wish you luck; there are lots of experienced caregivers here.  Read a lot of threads and you'll pick up lots of information.  Taking over is not easy, but safety is key.  

star26

Hi Jen, It sounds like you want the neurologist, geriatric psychiatrist, and/or neuropsychologist to do standardized testing so that you have objective assessments of your Mom’s cognitive skills in addition to what you’ve noticed. You can request this if they don’t automatically recommend it. (And hope your Mom agrees.) The various skills tested (safety awareness, visuospatial skills, short term memory, attention, problem solving, abstract and concrete reasoning, etc.) relate to real-life activities such as handling finances, driving, cooking, handling meds, etc. So, this may give you the objective information you are looking for to back up future decisions that your Mom or others may not like. Whenever the MD thinks that your Mom is no longer capable of handling the bulk of her own affairs, such as her finances, get it in writing. You may never need it, and it might not be enough to solve a dispute about revoking the POA, but it’s good to have. Only guardianship gives you “irrevocable" protection, and for that she needs to be more advanced than she is right now. 

If she were my Mom, I would stay in the condo with her for at least a few days after moving in. Then, stop by unannounced frequently. You might also stop by occasionally when she’s not home to look things over. Cameras, an extra smoke detector close to the stove, and a medication organizer are other ideas.  If you spend enough time there doing regular observation and light detective work, I think it will be very apparent to you, as it was to me, when that living arrangement can no longer continue. Planning ahead such as researching where you would want her to move if/when needed, and maybe even get on a waiting list when you think the time might be approaching, can save you some stress down the road, especially if there's a health crisis that progresses the disease faster than expected. I think it's a good sign that she was reasonable enough to sign a POA and agree to downsizing. 

MN Chickadee

Get a good elder law attorney. When your (stubborn) PWD is with-it enough to possibly arrange revoking the POA but not with-it enough to live alone safely, you want an attorney familiar with your situation should things go haywire. 

Having read your second post here, I get where you are coming from. I would also consider it a step in the right direction to get her out of the house and to a neurologist, given the delicate nature of all this. I would tread water and do whatever it takes to get to that neuro appointment date. The documentation from them will help a lot should she or anyone else try to change the legal paperwork. Plus you really do want a formal diagnosis. There are many forms of dementia and knowing what it is or likely is can alter medication and treatment plans. 

I would second what Star said to stay with her a few days. A PWD in nearly any stage can find ways to get by in their routines and familiar surroundings, but take them out of that and all bets are off. It's the same reason her deficits became more apparent when your dad passed. I would not assume she will function at the same level in a new condo. Definitely have extra monitoring to see what is happening after the move. Sounds like you have to take it slowly but stay alert and ready to pivot on a dime. 

[Deleted User]

The user and all related content has been deleted.

ButterflyWings

Hi Jen -

Great advice here. Definitely note what Victoria said about "friends". Do keep a close eye on that. And, "she's fine now" can change on a dime. I would visit for a long weekend and just observe. See what she really is doing when left alone. You might be very surprised (and alarmed). The time to put guardrails in place is before someone drives off a cliff, right? 

I learned here that your taking the lead is not something you are doing to her, you're doing it for her. Don't ask, don't tell works best at my house. DH is strong-willed and debating doesn't help him or me to keep the stress level down and cooperation level high. Diversion and distraction becomes increasingly the kindest, most respectful and comforting way to support our LOs when dementia comes to town. So very sorry you are going through this, as your mom did with her mother (?) I am so sorry for the recent loss of your dad as well.

My route to diagnosis with a resistant PWD LO, took more than a year. We knew something was happening and off and on, he would realize it too. I urged him to seek answers in case there was something treatable. Turned out not to be the case, but at least we got answers. Now, he is blissfully unaware of the race to the bottom that AD is dragging us toward as he now has anosognosia 100% of the time - just oblivious to the fact that he is impaired. All the resources and wisdom on this forum, helped me understand that his brain is broken and he can no longer be in charge without serious risk to himself and others. 

Even without DPOA, you would realistically need to help think for your mom, and just do it. Her reasoner is broken so don't go down that road. Surviving this (for you and your sibs) requires a major brain shift for us as caregivers/carepartners for sure. But it is what it is. It won't improve, only progresses. I'm sorry to say but that is our reality. Driving and finances are serious danger areas for the stage it sounds like your mom is already at (bad grammar, sorry). 

Here are my go-to articles for you and your family.  Best wishes.

-Anosognosia is a real thing. This article helped me a lot.  6 Ways to Help Someone Who Doesn’t Know They’re Ill: Anosognosia in Dementia – DailyCaring

- Read this excellent article and share with interested family and friends:  

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

Sjodry

Jenflex,

Welcome. I am sorry for the loss of your dad followed by the realization of your mom’s situation. You are getting great information here and this site will likely prove to be one of your most trusted resources on this journey, as we have all had or are currently living the same experience.

I would echo what others have said about planning ahead. What can be challenging and misleading for many is what Victoria 2020 referenced in her post, about the separation of the familiar and capable mom from the declining mom. There can be a tendency (or there was for me), to minimize the challenges your mom is facing. 

My mom lived in a different state by herself and long distance conversations seemed fairly normal for quite some time, when in reality, she should have been in assisted living. After moving her to my state (PA), and seeing her and her deficits frequently, I still had a difficult time realizing when it was time for memory care. 

At some point on this journey (if not already), you will realize that you have had a role reversal and you are now the parent. You must make decisions for your mom as if you are making them for your child, because in effect, that is what this disease reduces our loved ones to.

You said something that struck a chord with me. You have a mom who sounds similar to my mom. My mom was always capable, independent and had a mind of her own. “Digging her heels in” and declaring what she will and will not tolerate..made it hard for me to make the distinction between the mom I had always known and the mom being driven by dementia.

You are approaching this in the right way, educate yourself as much as possible and definitely plan ahead..as the future arrives much sooner than you think.

Best of luck to you.

Take care.

Sandy

harshedbuzz

Jenflex-

This sounds like a difficult situation all around. In my experience, the early-middle stages were the most difficult to navigate with my dad who had a challenging personality as his baseline and a wife who vacillated between denial and passivity. TBH, acting on behalf of a PWD is loads easier once they're a little more impaired.

Had to asked earlier, I would have sided with your husband and brother on the condo. If she does in fact have dementia, the condo would be a less than ideal choice in terms of asset management because of the fees associated with selling it/renting it sooner than you might expect to cover costs at a facility or in home aides. Fees to the realtor, staging and transfer fees will eat up 12-15% of the sale price when you sell. 

Since you have the POA, the next step is an evaluation with a neurologist who specializes in dementia. Since you've rescheduled, best to not remind her. Just take her, when you get there, if she protests perhaps suggest that it required for her Medicare or that her trusted PCP wants her to see a specialist for her grief. Whatever it takes. 

Bring a bulleted list of concerns to share with the doctor before he sees your mom. Ideally, they'll take her to one room for a quick cognitive testing and you can talk privately. Make sure the HIPAA forms are signed at checkin. If you have an appointment where mom is being asked questions, sit behind her in the doctor's sightline so you can nonverbally confirm or refute her answers. 

I think one thing that people new to Dementia World don't fully appreciate is that the disease doesn't just impact memory, it also impairs critical thinking skills and executive function. These are the skills we hone as older teens and young adults that render us independent adults. If she's already struggling with bills, she's past being safe from scammers and unsavory people who would befriend her and take advantage. Alone in that condo she could be giving spammers her personal financial information or sending donations to any sketchy group that asks. My dad lost $350K in the market daytrading because my mother refused to shut down his computer access. You don't get a do-over for that kind of thing. That money was needed when he went into a MCF and will be needed should one of her medical conditions require care.

As for her friends. It's great for her that she has them. But they're a double-edged sword. I had a lot of issues with friends- for one thing they were in denial that dad had any issues. I walked in on him hosting neighborhood happy hour wearing just a bath towel and they were all OK with that. Dementia is the Bogeyman under the bed for the elderly; they will defend their friends' behavior to the end lest it touch them even tangentially. If found my parents' Florida friends attempted to interfere with sensible decisions that needed to be made. I had to block a couple of them for that reason. 

" As DPOA, my job is to help her live her life; not live it for her."

As POA it is your duty to make decisions on her behalf that protect her personally and financially. And that may make you unpopular. 

In your shoes, I would get on the CCRC wait lists. She may be too impaired (most screen their prospective residents for cognitive decline ahead of moving in) to be accepted into such a community once a slot opens. I would also tour and research SNFs and MCFs. She could need a SNF after a qualifying hospitalization and you will be asked to give the name of 3 to the social worker with the discharge team. And it would be useful for you to have a few MCFs in mind should that be her next move. 

Arrowhead

Having POA is a good first step. I think you should totally take over her finances. Get her checkbook and passwords to bill paying sites. Have all of her bills and legal stuff sent to your address.  

Being perceived as overstepping or being mean is better than not having things get done what needs to be done. You will have a clearer idea of that to do and what to expect after you are done with the neurologist. 

Jenflex

First off, thank you to everyone. I had high hopes for finding help here, and those hopes have been exceeded.  I very much appreciate everyone, and to the limits of my ability, please know I will pay it forward.

I especially appreciate the note about the particular challenges of the earlier stages. After spending a day with my mom today (I forgot to mention, I'm a LD POA...and I'm out of vacation time after this week), it's very clear that there is a risk of her pulling the POA. I'm thinking that is my biggest concern at this particular moment.

And, although I believe Mom's primary circle of friends are trustworthy and good to/for her after spending time with them today, it's clear that Mom's sister is "stirring the pot" in a way that is going to be increasingly problematic. It's the same story Victoria mentioned. 

I also appreciated the advice on handling the neuro appointment and laying the groundwork to get a diagnosis ASAP as well as some more specific assessments. I had already begun keeping an emailed list of issues and notes, and I will continue with that. I had begun to read about anosognosia, and I'm definitely seeing that. I just balanced Mom's checkbook, and there are missing entries again, so I will also start absorbing the finances...carefully.

Being long-distance stinks...making it worse, I'm the key breadwinner in my household, so taking time off/stepping back from work is not an option. (It goes without saying that Mom won't move closer to me!)

Although my brother's local to mom, his circumstances are not allowing him to be as active in caring for mom as it looks like she'll need, so I think I'm going to need to look for some other elder care resources to keep an eye on mom more often. (Suggestions for this are most welcome....) Brother and I are aligned on direction, but he just hasn't been able to step in as needed, and I don't foresee that improving.

If I could ask for additional advice, it would be where to start looking for a good elder care attorney in Central Ohio.  I've met Mom's attorney, and she seems very nice, but EC isn't her specialty, and she goes to church with Mom.  My network is all in Illinois, but I know state law can vary and I would rather have someone local to mom.

God bless you all along this journey, and thank you for making my path a little easier.

star26

Yes, good idea to get a different attorney. Here's a link to the Certified Elder Law Attorney (CELA) Search from the National Elder Law Foundation (NELF). This designation is the best you can get. 

https://nelf.org/search/search.asp?txt_statehio

Post here as often as you need!  

harshedbuzz

How long distance is she? For now, a Geriatric Care Manager local to her could be eyes and ears on the ground. These people are often MSWs who have narrowed their scope to geriatrics. 

Eventually you'll want to move her closer. As time passes and the disease progresses, this will become easier until it isn't. Unfortunately, something like a fall/broken hip can remove that option in a heartbeat so you want to hit that sweet spot where she's confused but ambulatory.

Some people have had their LO for a "visit" and then put off returning them to their homes because of COVID, snow, a dug up sewer line, termites, etc. One woman here had to extract her dad from a girlfriend who was spending money like it was her job. She stayed for a while and slowly shipped all the things he'd need (clothing, medical records, documents, financial papers, etc) north when he napped and packed her car with a few changes of clothes. Her son flew to join them and second day there went out for breakfast and just kept driving until they were at her place. I recall it as being well over 1000 miles.

HB

Cynbar

I want to add a note to the discussion about friends. In my experience, although occasionally the friends can be a problem, more often it's the relatives who somehow manage to get a foot in the door. For instance, the friend may have a granddaughter looking to make some extra money, and push her onto your mother. Before you know it, the granddaughter is giving your mom a sob story about her sick child or broken down car or whatever, and the money starts flowing. Just keep your eyes open for anything starting that sounds like that, it's a frequent scenario. The friend is often not even aware of what her granddaughter is up to.

Another thing about friends --- be careful of putting too much responsibility on them. They are likely elderly themselves, and they are friends. not relatives. I have seen case where relatives expected the friends to help out and keep an eye on everything, and it's just not realistic and may lead to lots of hard feelings. A geriatric care manager is an excellent idea, it can be a little pricey but will have a professional overseeing your mom's care.

Jenflex

Thank you all so much!  I have a call in to a local CELA, and I will look for a Geriatric Care manager. Agree with Cynbar that the friends are OK, it's my aunt who is the problem..and the myriad of "nice" predators out there. I feel better about the progress that's been made, and am staying eyes wide open about what's ahead.

Mom and I live 7 hours apart. My company is generous with PTO, but I have burned through more than 6 weeks this year, and DH and I need to save some time for self-care.       :S

Lindsay22

Hi Jen, 

I agree with many of the things here, especially the difficulty of the middle stages since there are many things she still believes she should be able to do on her own.  My mother tried to physically fight me when I took one of her credit cards.  Not pretty.  

The only thing I would like to add is that perhaps you could pass a caregiver off as a "housekeeper".  This worked with my grandmother.  Since your mom still doesn't need help with many daily living activities perhaps having someone come in a few days a week to keep an eye on how things are going and do some light cleaning would be possible. 

Also, if you can get access to online banking at least you will be able to monitor what is going on with finances and then slowly transition some of that away from her.  My mom actually still has her debit card but she doesn't know that it has a $200 daily limit.  Awhile back I took mail from her place and changed everything to paperless billing with my email address so she never even sees those.  

Of course these are work arounds and short term solutions (which I know you know) but they have helped me to manage. 

Jenflex

Thanks, Lindsay.  I am kind of headed in this direction right now. The main thing Mom is afraid of  (her words) is losing control of her finances. She said she is afraid of me. 

But I think there is a lot I can do to mitigate risk...she uses a card for all purchases, so I will use the POA to dial back the credit limit. I already have access to online banking and bill pay, so that's a step in the right direction, and I have access to my dad's old email so I can use that as the POA email account for bills...most already go there, anyway.

I'm also thinking about opening a separate account under the POA to start to sequester her most liquid funds. I have talked with her investment rep, so she can't liquidate the IRA or other account without me being notified...it's the spending accounts that are the most at-risk.

I have a call in to a CELA, to see what I can do to protect against the POA going to my aunt inadvertently, and am looking into a GCM, and am using everyone's guidance to prep for the 7/2 neuro...this is all so very, very helpful.  I think I can set up the GCM as an "advocate" for mom, since she feels afraid of me and of losing her autonomy. I think that will be seen as a benefit, not as a takeaway.

Mom moves to the condo "for real" on Wednesday, so I will be here to see how she adapts, for at least a day or two. And we're just 2 weeks out on the neuro. So progress has been made.

Again, many, MANY thanks.