Plan B

JulietteBee · March 17

I thought I had more time. I prayed I had more time.😢

I have advocated for mom to get a name for what caused her dementia. Her neurologist believes hers is multi-focal, meaning hers have many causes, vascular being one.

The PA asked mom last month if she wanted to be tested specifically for Alzheimers. To which she said, "Yes!"

Her results came back POSITIVE.😢

Having moved her into an ILF in 2024, I see that I have to move her once again. Plan B has had to be activated.

I would like to say, "Thank you" to everyone in this group who have advised me to have a Plan B on standby. By so doing, I am now able to be proactive rather than reactive.

I tell no lie, though, my heart was shattered, seeing her results.💔

harshedbuzz · March 17

@JulietteBee

I'm sorry for the additional diagnosis. It's surprisingly common. Both my dad and my one aunt had mixed dementia.

https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/mixed-dementia

I hope the information helps you as her advocate.

HB

JulietteBee · March 18

Thank you, @harshedbuzz!

I appreciated the link. Thank you for sharing it. I particularly found the statistics quite eye-opening.

SDianeL · March 18

so sorry. Hugs. 💜

JulietteBee · March 18

@SDianeL, thank you! 🫂

SusanB-dil · March 18

So sorry you are dealing with that.

Same here - dealing with vascular and alz.

brucesdaughter · March 19

Hi…I am really sorry to hear that you are facing this with your mom. Do you mind sharing with me what tests were conducted to confirm her diagnosis? My father just had the blood test that shows he has the double copy APOE e4 allele and he scored high on the likelihood test. Insurance denied the PET CT which would have confirmed Alzheimer’s but the doctor said he really doesn’t need the PET CT to know my daddy has Alzheimer’s.

JulietteBee · March 19

@SusanB-dil, thank you! I am sorry to know I have company in this miserable boat. Hugs to you!🫂

If you don't mind my asking, how fast or slow does those 2 in conjunction with each other, progressed for your pwd? I understand that Alzheimer's sufferers can live in that God-awful place of in between for 10, 15, even 20 YEARS. On the other hand persons with Vascular tend to have approximately 3-5 years.

I hate all versions of this disease.💔

JulietteBee · March 19

@brucesdaughter, thank you! I am equally sorry to hear of your dad. If you are a daddy's girl as I was, seeing your daddy suffer must be downright maddening. My dad died 12 years ago. Thankfully, not with or from dementia.

As far as mom, the PA said he would do the blood test and wait a few weeks before trying to convince her insurance to approve her getting an Amyloid scan. With the blood test being positive, I do not know if he will still try to get the scan approved. We go back next week to learn her next step.

Mom had the Quest "AD-Detect" along with the APOE, TAU, and Amyloid Likelihood. My mom has one copy of E4. Last summer she had an MRI. Those results showed severe, bilateral white matter disease, not age appropriate. When she saw the neurologist to go over results, she was told that she most likely had multi-focal dementia. She had previously failed the MMSE test, as well as, the S.L.U.M S test. Those are 2 in-office cognitive screening tests. Last month she had the 2 hour Neuro-Psych exam.

I hope my answer was sufficient. If there are more questions, feel free to ask. I am pretty much an open book.

How long ago has your dad been ill, or showing signs of decline?

brucesdaughter · March 20

@JulietteBee We are somewhat at the beginning of our journey. My dad is 77 years old and my sweet mama went to Heaven in June 2025. Although he is living alone now, I am only one road away. Daddy had his first MMSE in 2022 and scored 30. He went to a neuropsychologist for the hours long test and it was determined he had mild cognitive decline and a life-long learning disability. In 2024 he scored 21 on the MMSE. In Feb 2026 he scored 22. The learning disability makes it hard to properly interpret the MMSE so that’s why she ordered the bloodwork. He is definitely struggling with short term memory loss but no other signs of dementia. I am currently in the process of setting up as many safeguards as I can think of and taking care of business matters so we aren’t caught off guard. I am glad his doctor told me about this community.

Michele P · March 20

https://alzconnected.org/discussion/comment/268390#Comment_268390

Welcome. The neurologist should order a brain MRI and PET scan to determine a diagnosis. There is also a blood test for Alzheimer’s. There are multiple types of neurodegenerative diseases. A person can have more than one. If you haven’t already done so, get an appointment with an elder law attorney to get legal documents in order while your father can still sign documents. Get a plan b in place in the event you can no longer care for him. This will involve touring memory care facilities and placing him on a wait list with a refundable deposit. Read The 36 Hour Day to plan for what is coming next. Come back here for help and support.

H1235 · March 20

https://alzconnected.org/discussion/comment/268390#Comment_268390

Welcome. Facilities can have a waiting list and when it’s time you are not going to want to wait. I would get him on a list soon. It’s very important to see a lawyer. Will, durable power of attorney are so important. Some have used cameras in the house in the beginning. It’s important to get finances under control. A person with dementia is very vulnerable to scams and could lose everything. If he still has his phone something like a life360 might be a good idea. There is just so mush to do in the beginning. I’m glad you found us. I will attach a few resources just in case you haven’t run across them yet.

Anosognosia and Dementia - AgingCare.com.pdf

DBAT.pdf

understanding-the-dementia-experience.pdf

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

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

SusanB-dil · March 20

@JulietteBee I don't mind the asking at all… glad to help if I can

She seems to plateau for a bit, as is known for with the vascular, but then when it does dip, it's a big one, due to steady decline of the alz. She could plateau for a week or a month, we never know how long any will be. Also because of the vascular, she has had at least one major stroke that she came out of surprisingly without too much affect. But then she is subject to a TIA at any given time. We (family) call them 'steps', and the last TIA, last week, it seems she took 3 steps down and 1 step back up from that one. So that is the new plateau for this week. ~ sigh ~

Yeah - I HATE 'this', too. We all do.

H1235 · March 20

I’m so sorry you are seeing this decline. My mom was diagnosed with vascular dementia 3 years ago (no Alzheimer’s). She is now 81, has diabetes, edema, kidney problems, high blood pressure, thyroid problems…. We were told there is an average life expectancy of 4-5 years from diagnosis and to expect progression to happen in steps. I’m very fortunate that mom has seem very little progression. Given her age, other health issues and the passage of 3 years I am surprised there hasn’t been a drastic decline yet. I feel on edge wondering when I’m going to get that call. It’s nerve wracking. Sometimes it feels like I have been holding my breath for the last 3 years. You have reminded me to enjoy the time I have with her (the best I can) and stop worrying so much about what’s to come.

JulietteBee · March 21

@brucesdaughter, again, I am so sorry to learn of your daddy being smitten by this awful disease.

If no one has told you, you are doing the absolute best that you can do for him. When the days are hard, the burden heavy, and you feel like you cannot deal with it another moment, please be sure to give yourself Grace. Becoming our parents' parent is by far one of the worse experiences to encounter in life, second only to a parent having to bury their child.

The blood test indicating he has homogenous APOE-e4 is very telling. That, along with the likelihood marker being high, is practically the only confirmation necessary. If cost is a factor in his physician's plan to not pursue the PET scan, at a minimum, I'd request an MRI of the brain with contrast.

All the best as you embark upon this mind blowing, heart shattering, physically demanding journey. Getting the legalities done post-haste is very wise.

Check in frequently! When others says "I know what you are going through," they really don't. When we say it, trust me, we do. Remember, Dementia care is not a sprint, it is a marathon. Pace yourself! Breathe! And, make lots of memories while there is still time.

God bless!🙏🏽

JulietteBee · March 21

@SusanB-dil, thank you for responding. In recent weeks my mom has shown profound decline. I guess that would be due to the Alz. After moving her into ILF, I thought she had hit a plateau and was doing quite well. With no new illness/infection , I do not know what triggered this new onset decline. However, this community has equipped and empowered me to be able to be proactive, staying one step ahead of this vile monster.

All the best with mom!🙏🏽

Plan B

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