What to expect

jer210520

My dw of 22 years diagnosed 2019

Lost sex drive although talks about it every so often ( she still knows I think about it)

Everyone feels sorry for me as I loose her. It’s sad but I think it must get unbearable and want to know just what to expect. Everyone just talks generally. She Tomas with me, not necessarily adding to a conversation but knows who I am. She doesn’t drive, gets a bit lost in the house, sometimes paranoid, sometimes bipolar it seems. Not aggressive

Still continent 

So what , specifically could happen? Seems like  it will be more fading . I’m already loosing her. I’m dealing pretty well all things considered.

People who have gone through this- what’s next? What might I expect?

Jer

ButterflyWings

Jer- welcome. Sorry you have joined a club that we all wish we did not need. But it is a true lifeline, many will attest.

You can expect continued progression of her disease, sadly. You can also expect understanding forum mates here who are going through, or have already experienced any and everything dementia throws at us and our LOs. 

Have you read this excellent info yet? If helped me answer some of the questions you have raised about what may lie ahead. Buckle up. Hang in there. Do keep reading and posting. This is the most knowledgeable and experienced group you will find. 

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

Rick4407

Hello Jer,  There are general road maps of the disease and it's progress, but none apply exactly to each person.  Reading here will give you some ideas of what potentials there are and some ability to prepare.  My DW is in late stage 6.  Its been 6 years since diagnosis of VD and then mixed VD/AD.  My DW remains fairly happy and cooperative, but though she has a PhD she can no longer read or follow the simplest of instructions.   My communications with her are at the level of communicating with a 2 year old.  Lots of praise for the smallest of things and reassurance of "we watch out for each other".  Never any criticism only diversion when she does something I don't want.  

I've found "accepting" is the key to my survival.  She is still home now and I expect to keep her here.  But that can change as it does with many people.  I now have a "live in" helper who helps with my DW as well as keeping the house.   

Having a good relationship with her neurologist or geriatric psych helps with delusions and strange behaviors.  It's a difficult road with many unpredictable twists and turns.  Read here a lot.  Good luck, Rick

Crushed

mid 60s makes you 3 years into Early onset. 

here is our story

  My wife showed symptoms in 2009 at 57  MCI 2010 EOAD 2012.  We had 5 "good years" after 2012.  Even in 2017 We had simple careful conversation Friendly marital sex and could travel until 2017  but psychosis, memory loss and wandering led to Memory care placement in in fall of 2017.  (doctors had recommended it earlier) by 2018 she had no idea who I was or the children and had lost coherent speech. She can walk slowly and eat what you put in her mouth .

She was a physician and senior government official in 2010.  she just turned 70

toolbeltexpert

Jer first I am sorry for you and your dw.This disease really takes everything a bit at a time and just when you think you know where things are going they change again. This is a saying I am getting familiar with, when you've meet a pwd, you've meet one person with dementia I understand when it seems like everyone talks in general, but it varies so much from 1 person to another, except for the general decline. As far as your first statement about the lost sex drive, there was a thread the other day where that was a topic. I am in the same sinking boat she knows, just like the house needs cleaning,ect,ect ect. I have learned alot here and recommend reading alot of posts. I also recommend Teepa snow videos. I  think your doing a great job your wife sounds pretty far along and you've done well and we all think along those lines that we want to keep our lo home, if,if,if all the unknown things are not more then we can bear.

Jeff86

Jer—welcome, and sorry you need to be here.  That said, you will find this community to be a wealth of information, support and empathy as fellow spouse-caregivers share their journeys on the AD road.

I think it’s important to prepare yourself as you take this regrettable journey, and this is a terrific forum for learning about the disease.  At the same time, you will read about many twists and turns you and your DW may never experience.  The old saw goes that if you’ve seen one AD patient, you’ve seen one AD patient.  Each PWD’s journey is unique.

That said, it’s important to remember that AD is a progressive and ultimately fatal disease.  So one takeaway from this harsh reality is to do everything you and your DW can do while you can, and to find joy in small but significant moments.  

Good luck and let us know how you and your DW are faring. 

Just Bill

What to expect ? You are going to learn who you are and how you handle extreme emotional anguish. It won't come at you all at once either. Every step prepares you for the next step. It's an evolution. The sicker your wife gets the stronger you need to be emotionally. I am amazed at what was horrific a year and a half ago is routine today. I am humbled by everyone's experience here and consider myself lucky for only having my comparatively easier go at this. But keep yourself healthy physically, mentally and emotionally and you will be great. Educate yourself on this disease so you know everything about it. Embrace it because you are in it.