Mom Diagnosed with Early Onset at 60

oliviaelliott

Hello,

I am new here and looking for advice.

My mom had been experiencing some forgetfulness the past couple years. She lost her job about a year ago because she couldn't handle the tasks required of her. My brother and I tried to get her to go to the doctor multiple times for diagnosis but she refused until… she was a victim of a bitcoin scam that lost her a significant amount of money. This made me realize I needed to step in and insist upon doctors appointments. Since the scam she has been diagnosed with early onsite Alzheimer's.

I have accompanied her to all appointments with her PCP and neuropsychologist. Now I am assisting with the necessary steps to get her an appointment with the neurologist.

She lives alone and has no other support. My brother hasn't wanted to talk to me about it and acts a bit like it's not happening. My mom still drives, shops for herself, and takes care of herself fairly well.

I have gotten Durable Power of Attorney documents notarized. Fortunately, she is happy to hand over all information pertaining to financial accounts so I am able to assist her with bills and monitoring activity. I am looking into applying for SSD and I am getting her taxes filed. I am checking in on her everyday by phone and visiting her at least 3 times a week to hang out and assist her with technical issues. She was a problem solver for 30 years in her IT career, now I am helping her figure out her phone.

I guess my question is, what else do I need to do at this point?

Also, how quickly is this going to go downhill? She is starting medication and we are going to ask about the infusions (I really don't have a lot of information about this yet) when we can finally get an appointment with the neurologist.

I am scared to think about when she can't live on her own, but am I getting ahead of the situation?

It's been a whirlwind few months. I'm trying not to freak out while being a rock for her but I also get irritated at times and stressed trying to manage her life and mine (I'm back in school at 42 pursuing a new career.)

Any advice or guidance would be appreciated. I have no one to talk to about this that understands.

Thank you.

JulietteBee

My heart hurts for you, as it hurts for us all.

I believe you have taken care of all your early steps. Sadly, now, you wait. With the earlier steps, you were playing offense. As her decline progresses, you will find yourself playing defense to a vile disease.

Come here to vent, and seek help in strategizing, as various issues arise in the future.

Whoa! I didn't see if she signed an advance directives/living will. While she has lucid times, seek to know what she wants you to do when she is unable to speak for herself. Also put your name as her emergency contact with all doctors. Also, sign up for portals at all medical facilities; doctors, pharmacies, hospitals, health insurance company, even social security.

My mom is 84. I am her DPOA & Healthcare Surrogate. I have access to her portals, from which I can read her doctors' clinical notes, request referrals, request medication refills, and communicate any concerns with the doctor, prior to an appointment.

Your mom needs to draft a will. If not, when she dies, she will be claddified as being intestate. Her entire estate will have to go through probate which is handled by her state. Her assets can be tied up for upwards of a year. Get yourself & your brother's name added to all her bank accounts as PODs (payable on death) recipients. If she has CDs, make sure they are all assigned a beneficiary.

ileanabeatriz

Before we had to take away car keys and move to 24 hour care I installed video cameras around the home (not bedroom or bathroom) and trackers on the car and keys/wallets etc. This helped monitor safety and progression of the decline. Life360 with phone in car also gives you real time readout of risky behaviors and also will call emergency services in event of accident. God bless and good luck. POA was a key and very useful move.

SDianeL

welcome. Sorry about your Mom’s diagnosis. I would not wait to make arrangements for her care. It’s not safe for her to live alone. She could start a fire and not know what to do. If she takes medications she could forget to take them or take them multiple times a day. Alzheimer’s is more than memory loss. They lose executive function and reasoning abilities. She could wander off. With a diagnosis in her medical record, if she is in an accident even if it’s not her fault, she could be sued and lose everything. Her insurance could refuse to pay. I would move her in with you or into memory care sooner than later and stop her from driving for her safety. Unless you are with her 24/7 you can’t really telll where she is cognitively. PWD can showtime for short periods of time. Stay with her a week including overnight and you will get a better idea of where she is. There is no way to know how the disease will progress. Here is an assessment tool that will show you where she is now. https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

H1235

Welcome. It’s great that you are getting things done. There is just so much to do in the beginning. I have a brother that prefers to keep his head in the sand too, I sympathize. I agree with SDianeL. I was told care level should be just one step ahead of their current needs. She may be fine using the stove today, but will she still be ok with it tomorrow and how are you going to know when that change happens before a fire. People with dementia often have anosognosia. This is an inability to recognize their own symptoms or limitations. It can be very dangerous. She is not going to come to you and tell you she can’t do something. It’s easy for this self confidence to give you the illusion our loved one is capable of more than they really are. My brother said mom was able to do her own laundry, yet I discovered she had run the washer twice and put no clothes in, I made sure she got a new toothbrush every 6 months, when we moved her I discovered she hadn’t actually replaced her toothbrush in 2 years. There are so many little things that we just assume are being done. What kind of access does she have to her finances? What is to stop her from being scammed again? Even if she only has access to a small checking account, she could empty it. You may want to put a hold on her credit. Some have tried to take out a lone to buy a new car at this stage. Driving is about way more than memory. It takes good judgment, reaction time, understanding of complex traffic laws, visual and spatial perception and so much more. I can understand you don’t want to take the car away too soon, but you don’t want to wait til there is an accident or someone gets killed. There is a lot on the line when it comes to driving. And like I said earlier just because she is ok driving today doesn’t mean she will be ok tomorrow. Dementia only progresses. Mom’s neurologist told us she shouldn’t drive and was not safe to live alone. Maybe ask the neurologist their opinion on these things. In my opinion it’s not too early to start thinking about what happens next. Some assisted living facilities can have a waiting list to get in and they can be very expensive. 24/7 in home care is even more expensive. You might want to start thinking about what she can afford. Will you need to sell her house to cover her care? Would she qualify for Medicaid? What does Medicaid cover in your state. When we moved mom to Al I found she enjoyed being around other people and even just having a reason to get dressed in the mornings. She was down and depressed being alone all day. I will attach a few resources. The more you can learn about dementia the better.

DBAT.pdf

Anosognosia and Dementia - AgingCare.com.pdf

understanding-the-dementia-experience.pdf

https://www.medicaidplanningassistance.org/medicaid-eligibility-income-chart/

https://www.consumerfinance.gov/consumer-tools/managing-someone-elses-money/

highdeserthopeful

https://alzconnected.org/discussion/75462/mom-diagnosed-with-early-onset-at-60

I just turned 43, same boat with dad. Except he has Dementia, early stages, and he's vulnerable, been taken advantage of, and pride wont let him accept that truth or changes or see consequences anymore. I was not ready for this part of life 🙏🏾

dballou

I am so very sorry that you are having to go through this. I'm 36, and I’ve been navigating a similar path after my mom was diagnosed with Posterior Cortical Atrophy (a form of Alzheimer's) at age 57. Initially we thought she was just having vision problems, but after visiting her we realized it was much more than that. While my sister has distanced herself, I worked with my aunt and uncle to manage my mom's transition from living independently to moving across the country to be near family. After a year of struggling in her own apartment, we successfully moved her into assisted living by reframing it as a "new apartment" that offered freedom from chores rather than a loss of independence. She has been there for seven months now, and while the move was the right choice for her safety, she continues to experience a steady decline.

I think it's important to start talking to your mom about assisted living options now. As someone else mentioned in their reply, the decline can happen rapidly, so something that your mom is able to do today she might not be able to do tomorrow. My mom was convinced she was still able to cook for herself, but I would FaceTime her and ask her to show me what she cooking and she would have the wrong burner on, or no burners on at all. You should also look up what anosognosia is. Your mom might not even be able to recognize her own limitations, this will also make it extremely difficult to convince her that moving into assisted living is for her benefit. Initially my aunt and I discussed me moving in with my mom full time for a year before moving her to AL, but ultimately we decided that it was better for both my mom's and my well being if we moved her in to AL sooner rather than later. Another thing we learned is that people with dementia need stability and routine and the more the disease progresses the more jarring any kind of change will be for that person. So, while it is never going to be an easy decision to make, it's better for everyone to make the decision sooner rather than later.

However, I think it's also important to note that no 2 people's dementia presents in the same way and your mom's decline could happen quickly or take time. Both my mom and my grandma have Alzheimer's. My mom's decline has been rapid and tumultuous, my grandma's decline has been more gradual and linear. Ultimately you are going to have the best insight and judgement on what is right for your mom.

I also just want to let you know that there are plenty of frustrations that come with caring for someone with dementia, especially someone so young. There are times when you will get angry with your mom and your mom will get angry with you, she may even lash out in ways you have never experienced before. But it's important to keep reminding yourself that the anger, confusion, sadness, or whatever other extreme emotions she has, they are not your mom and they are not a true reflection of how she feels about you. Recently my mom has been struggling quite a bit emotionally and lashing out at me more and more, but I have to remind myself that this disease is destroying the parts of her brain that made her who she was. Usually within a few days I will be talking to her again and the kind, loving mom I have known my whole life shows back up and tells me how much she appreciates me. This is not going to be an easy journey, but at the very least you have some community here that understands what you're going through.