Not Eligible For Infusion Treatments

jbn78 · May 6

My 75-year-old dad was diagnosed with vascular dementia and Alzheimer's three months ago. We were hoping he could do the infusions, but have learned he can't today. This feels almost as bad as when he was first diagnosed. He has APOE 4/4 and signs of one Superficial Siderosis on his ARIA MRI which makes it too dangerous to do the infusions (possible brain bleed).

The neurologist said he is at stage three. He said not to be so 'concerned' with the vascular dementia since it has a slower progression, and Alzheimer's can progress quicker. My dad is incredibly healthy and has all the lifestyle things in check (healthy weight, diet, exercises, optimist, very social).

We are looking into a clinical trial at NYU.

How do I put this into a time frame? I look online and see different ranges. I've seen stage three is 2-7 years and stage four is 2-4 years. At stage five, things seem drastically different. My dad doesn't want to live to the final stages. Do people find in stage five their loved ones don't know their family anymore?

jgreen · May 6

Dear @jbn78

Welcome. So sorry you have to be here but glad you found us.

Every patient is different, and disease progression is different. The staging helps me know what to expect and sometimes how to handle different behaviors. But I do not use it as a timeline to determine how long my DH will be with me. He is a solid stage 5 and at times I see that stage 6 is around the corner. He recognizes me as his ‘safe person’ and on rare occasion I will get an ‘I love you’ from my husband of 52 years.

Is your Dad living with you? You need to think about getting his affairs in order with powers of attorney, advanced directives and healthcare surrogate. Get with an Elder Care Attorney as soon as you can. This will be expensive but these professionals know your state and how to protect your Dad’s assets so he has options in the future. I went alone the first time so I could talk with the attorney and discuss our situation, then took DH with me to the visit where we signed the paperwork.

Do not make promises about ‘final stages’ with him. Just let him talk and if you need, tell him you will do what you can to keep him comfortable and safe as this nasty disease progresses. There is no sense in you feeling guilty if the time comes he will do better with professional help in a facility such as memory care of skilled nursing home.

There are books and online professionals that give good advice and resources - Tam Cummings, Natalie Edmonds, Teepa Snow, and Camille Sinclair to name a few. The book “The 36-Hour Day’” is a nice reference.

I hope you will come back and let us know if the clinical trial works out, and also how you and your /dad are doing.

Timmyd · May 7

"Do people find in stage five their loved ones don't know their family anymore?"

My wife is in early stage 6 and absolutely knows her family. She rarely is able to come up with the correct name. She cannot tell you her relation to the person. However everything about her reaction to family indicates that she knows these people are special to her, she appreciates their presence, and she is sad when they leave.

sandwichone123 · May 7

In Stage 5, my dh knew who I was, but I wouldn't have bet he had my name. I never asked. In early Stage 6, a nurse asked him, "is this your wife?" and he responded, "I WISH!" which I thought was sweet.

BPS · May 7

My Wife is stage 7 and most of the time she knows me, sometimes she knows some of the rest of the family. This disease is so unpredictable, my wife is in MC and I don't think there are any two residents that have the same symptoms. Some wonder all the time, some sleep most the time, some rarely talk and other talk all the time either repeating them selves or not being able to be understood. All the guides on staging are good because they help prepare you for what might be coming but even with all the information it is a guess on how each person will be affected. My wife has followed pretty close to the average time frames but others have gone much quicker or much slower. The not knowing is part of what makes this so hard.

harshedbuzz · May 7

@jbn78

It's hard to predict how dementia will play out for any given individual.

Cobbling onto BPS's observation about stages and symptoms, it's important to remember that a PWD is considered to be in the latest stage for which they have a symptom/behavior.

In stage 7, dad's swallowing became an issue, and he died from complications of aspiration pneumonia. That said, he knew mom and me, and he was verbal to the point of conversation. He was hazy on other family members and once mistook his Japanese American urologist for my son who looks like Ed Sheeran. And a lot of what he said was conflated to a large degree despite his grammar, vocabulary and fluency being intact. I had lunch and a nice conversation with him hours before he died. The SLP testing his swallowing was shocked when I told her that my sister he claimed to have visited him earlier had passed 25 years ago.

My friend cared for her mom in a house she had built to include a granny suite. She devoted herself to mom and yet her mom didn't recognize her. She knew she lived with her daughter but in the moment thought my friend was her "favorite caregiver". She used to tell the "FV" all about her brilliant and kind daughter and how the aide should stick around until the daughter came home because she was sure they'd become friends.

Auntie didn't recognize me; she thought I was my mom and as such was always delighted to see me. Mom was generally with me on visits, and I have no idea who auntie thought she was.

HB

Goodlife2025 · May 7

My DW is in stage 5 still knows all her family and some friends. But couldn't look at her cameras, a pair of pants, or the coffee table and tell you what they were. As others have said the staging tools are just a guideline and every PWD is different yet still a part of this group. Keep reading and coming here there is no better help when it all seems overwhelming.

Not Eligible For Infusion Treatments

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