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Mom Diagnosed with Early Onset at 60

oliviaelliott
oliviaelliott Member Posts: 1 Member
edited February 27 in Caring for a Parent

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.

Comments

  • JulietteBee
    JulietteBee Member Posts: 405
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    Member

    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
    ileanabeatriz Member Posts: 7
    First Comment
    Member

    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
    SDianeL Member Posts: 3,059
    1,500 Likes 1,000 Insightfuls Reactions 2500 Comments 1,000 Care Reactions
    Member

    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
    H1235 Member Posts: 1,638
    500 Insightfuls Reactions 500 Likes 1000 Comments 250 Care Reactions
    Member

    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.

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

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

  • highdeserthopeful
    highdeserthopeful Member Posts: 5
    First Comment
    Member

    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 🙏🏾

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more