Just starting out with wife having EO AD

Jack Z.

My DW had a PET scan last month which found that she has this terrible disease.  I shouldn't be surprised as her father has AD as well.  We have a follow up appointment with our neurologist next month and will discuss treatment options.  Keeping a brave face...

aod326

Hi Jack. It's horrible for you both to be confronted with that. This forum is an amazing resource for practical tips and tricks as well as moral support. I wish I'd found it much earlier in my DH's EOAD journey. Pretty much everyone on here will tell you that you will learn way more from here about how to handle dementia, than from doctors, whether they be PCPs or neurologists.

I feel like I'm about to kick a man when he's down, so I'm sorry if this sounds harsh. There is no treatment for AD. There are some medications that can potentially delay the progression of symptoms, in some patients, for a period of time. They are very far from universally effective, although more chance of being effective in the earlier stages than latter stages.  There are medications that can treat some of the specific symptoms such as hallucinations, rage, etc., which make AD less awful to manage. (For the caretaker as well as PWD.)

One other thing, though. AD isn't usually *diagnosed* via a PET scan. It's usually observation of symptoms over time, performance on cognitive testing; then maybe followed up by a PET to spot amyloid plaques. Maybe the diagnosis is premature?

This group is amazing. None of us wants to be here, but we'll support you through this, as you support your wife.

ChicagoGal

Hello to everyone on this Caregiver Board.  My mom saw her primary doctor yesterday and the doctor prescribed Memantine for mom.  Mom is 87 and her memory has been getting worse and worse.  I am wondering if any of your LOs have seen an improvement from this drug.  Also quite concerned with the potential side effects.

French

Hi Jack, we are several eoad spouses here. EOad has specificities (symptoms are progressing a little differently, but more importantly, we are young, sometimes still working and with children at home. My case), but in fact the comments from everybody are useful here. It helps me a lot.

Cobalt

Early Onset is quite a shock.  For us, we had been searching for causes for 2 years before we got a diagnosis.  But in a way, it was a relief to know what was going on.

For us, it was cruel and and sad because my adult son with severe disabilities has had me and caregivers for a number of years now.  "Now THIS?"  aaargh. He's 42 and it's been a long 42 years.  I've gotten positive benefits and support over the last year here in this online forum, so I hope you will keep coming back. Things seem to change all the time:  new successes and new setbacks.  We work on quality of life, and that includes for all of us.

Jack Z.

Thank you all for your kind words and for not sugar coating anything.  I saw what my DW's mother had to deal with caring for her husband.  

Did you find that your SO's symptoms were worse on some days compared to others or was it a steady significant decline?  My DW's are like a roller coaster.  Newest change has been anxiety in the early afternoon with lot's of tears that ends a couple hours later.

Thanks in advance!

HeartOnSleeve2210

Hello! I'm so sorry you and your wife are going through this. My Grandfather has had ES AD for about three or four years now, and I am still coming to terms with the fact that one day he will look at me and not know who I am. Thankfully it's mostly his short term memory that has been affected right now, and I am incredibly happy that I have the time with him that I do now. As to your second question, I have definitely noticed that my Grandfather has good and bad days. Thankfully, most days are better than others, but it really depends on the day. Some days he can tell the best stories from his childhood and others he has a hard time remembering what he did that morning. It really just depends on the day. That's what I've noticed. Best of luck to you and your wife on this journey!

Arrowhead

If you have not already done so, get all of your legal work done now. Wills, Trust(s), Power of Attorney, Medical Directive, HIPPA. It must be done while she still has the capability of making her own decisions.

GothicGremlin

Hi Jack -- I'm in a similar situation as you. I'm not a caregiver for my spouse though, I'm a caregiver for my younger sister.

As I worked backwards, I think she was at the mild cognitive impairment stage back in late 2015 (when she was in her earlier 50s), and was probably in the earliest stage of Alzheimer's by 2017. After an appointment with a neurologist, and then appointments to have an MRI and a PET Scan done, she was diagnosed. This was in Aug. 2018, so right about 3 years ago.

Today she's at late stage 6, leaving me just stunned at how quickly her disease has progressed.

Everyone progresses at different rates, and I've always heard that those with early onset progress the fastest. I'm not sure if that is true, but it's certainly what I've seen in my sister's case.

This is my long-winded way of agreeing with Arrowhead - get all of the legal, medical, and financial tasks done ASAP. I did all of that within the first couple of months after my sister was diagnosed. I waited just a little while longer with the will because I didn't want to scare her.

In terms of symptoms, it hasn't really been a roller coaster. It's more like I'll see a symptom once, and then it goes away, only to return in force later on (like incontinence). I'd say it's been mostly a slow, steady decline. That said, this whole summer has been a nightmare. She's declined from about late stage 5-early stage 6, to late stage 6 in about two months. I had her checked for a UTI, did blood work, etc., but she's physically very healthy.

This forum has been invaluable. There is just a wealth of information here.

I've also found charts with the stages very helpful. Here are a few that I use:

Stages of Alzheimer’s & Dementia: Durations & Scales Used to Measure Progression (GDS, FAST & CDR)
https://www.dementiacarecentral.com/aboutdementia/facts/stages/

The Functional Assessment Staging Test (FAST)
http://www.mciscreen.com/pdf/fast_overview.pdf

Clinical Stages of Alzheimer’s
https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

The site below has also been quite helpful. I go back to it often. It's helped me to understand her behaviors, and adjust mine so that I don't inadvertently cause a meltdown. It really helps to have some insight as to how someone with Alzheimer's is perceiving and moving about in the world, and how different that is from the way that I perceive and move about in the world.

Understanding the Dementia Experience
http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

This book was recommended to me by my mom-in-law, and it's quite good. I highly recommend it.

Somebody I Used To Know by Wendy Mitchell
https://www.powells.com/book/somebody-i-used-to-know-a-memoir-9781524797911

Wendy Mitchell was diagnosed with early onset in 2014, and she's still on twitter!

I read this book out loud to my sister, and we discussed as we went along. Doing this gave my sister a chance to talk about what's happening to her, and gave me a chance to listen and to understand.

I hope some of this is useful for you.

Jack Z.

Thanks for your advice!  I am going to set up an appointment with my attorney to get a power of attorney done first for our financial matters.  My financial planner advised me to get this done right away so I can make decisions for both of us on our IRA's etc.  We already have a will but I believe a Living Will and Medical POA are needed as well.