How Long

CindyBum

I'm sitting in the neuropsychologist office, having sat through the first set of questions to my DW for what I imagine will be her last evaluation to get a diagnosis. Like I need one -- she couldn't tell the Dr. what month or day it is, she can't drive or work her phone, and her speech is more halting and her ability to understand what I say worse every day. But here we are, and here I am, still needing this last smack across the head to maybe get out of my denial that I'm losing her.

And, I find myself today, like so many of my days, wondering how long on so many fronts. How long before she slips away completely? How long can I possibly work when I know I'm using up all my patience at home and getting more short with people at work? How long until they fire me because I've been short with the wrong person? How long will I have to change her clothes and then diapers? How long will she live? How long can I manage to care for her at home? How long can I afford to have her in a facility? How long until I have a semblance of a normal life again? How long will it take me to build a new life after she's gone?

Of course, I'm going to have to take each of these questions day by day, sometimes minute by minute. It really tells me about how anxious I am for this all to be over, and yet I don't want to lose her yet. I hope I can make it through with love and care for her, and occasionally for myself. Not sure I can right now. I am a walking train wreck.

northernlady

I'll join you on that railroad track as we just recently discovered by darling husband's diagnosis.

We aren't alone

No question is too simplistic

Some questions have no answers

Change (mostly yours) is inevitable and comes when you are least prepared.

Sending love and hope.

Buggytoo

Your questions could be the chapter titles for a book for those of us on this painful journey. I share your worries and sadness and send you prayers for strength and support.

Jeanne C.

CindyBum - I feel your post in my heart. Some days it feels like I've got it under control and some days I feel exactly like you describe. His home aide called out again, so I'm on day 6 of nonstop care for my husband. All the meals, meds, bathing, diapers. I've given up on meals out with him because he doesn't care and I get no joy from it. I did get him out for an hour this afternoon to visit my cousin/his best friend. Just talking to someone else about nothing in particular helps. We're coming up on a string of nice days, so I'll be able to get him outside. And honestly, he's fairly easy to care for.

But this is about you, not me. The diagnosis is, in some ways, the hardest part (at least it was for me). Figure out what you're dealing with. Make sure your documents and finances are in order. Put together a plan. Then a backup plan. And a plan C. And take a deep breath and find some time for you. None of us have a crystal ball, but backup plans give us that safety net.

Sending you strength.

charley0419

Like you Cindybum I wonder myself everyday, it about 15 months since my wife diagnosed moderate on set dementia, has short memory loss a lot, confused hasn’t cooked on 2 yrs. And no driving. But does everything else alone. but I do find in last month short term is worse. I pray she’d stay like this but I know better

Quilting brings calm

Remember one thing: if you’ve seen one dementia patient, you’ve seen one dementia patient. Just because one patient has symptom x and declines at a certain pace, doesn’t mean your loved one will follow that exact path. Prepare for the worst, but that doesn’t mean it’s coming towards you.

trottingalong

Your “how longs” are what so many of us ask. My pragmatic mind tells me no one knows. The part of my brain that wants concrete, factual answers, wants my questions answered. Some days I don’t care, and take it hour by hour. But other days I fear the future, the unknown, the loneliness, isolation and the inability to care for my DH appropriately.

LJCHR

I loved Quilting brings calm response: if you’ve seen one dementia patient, you’ve seen one dementia patient.

How true this is. If there’s one thing for sure I can tell you about dementia/Alzheimer’s is there are no instructions you can follow-everyone is different.

CindyBum-I feel your frustration. Try as we might, it’s hard not to be sad and worry what tomorrow, next week has in store for us.

We are so blessed to have the support and experience of each other.

wizmo

Asked this question at multiple points along the journey and always get vague answers especially for life expectancy. It is true everyone is different and averages don't help much. At diagnosis they said range is 2-20 years, early onset unlikely to make it to the far end. Here we are 7 years in, firmly into stage 6, just placed in MC. Averages run 2-3 years but there are folks here who experienced less than a year and others going on 7+ years in MC. That varies a lot partly based on how long caregiving could be maintained at home. Rate of change is not constant; progression can accelerate, decelerate, hold steady for long times.

How long could I keep DW at home? Until I couldn't. I did not know what that limit would be until I got close, had to start making contingency plans and judge when to activate before it was a crisis. Family told me I was not recognizing a crisis in progress (mainly for impact on me), it was just a matter of degree.

Surround yourself with all the support you can gather. So thankful for everyone here.

Crushed

How long is the wrong question. How I get through the day is the question.

DW started showing symptoms in 2009 57 years old

MCI in 2010 58 years old

EOAD 2012 60 years old

Memory care placement 2017 65 years old

Lost any idea of me 2018 66 years old

Wheelchair bound 2021 69 years old

2024 71 years old

Just get through today

CindyBum

Thank you all for your kind, compassionate responses. Helpful, as always.

I'm told we'll have the report by the end of the week.

janjanjack

I’m new….my husband is 57, just diagnosed with MCI, pet scan positive for amyloids. Wanting to start treatment….we are in shock….not really any memory issues….more balance, he can’t ski

John1965

Long time listener, first time responder. (Just kidding, I’ve been here for almost 10 years but haven’t participated in about 2 years). Diagnosis of MCI was 1/15, and next week marks 10 years since AD diagnosis. DW was 50 at diagnosis. 7.5 years “retired” to care for her at home. 2.5 years (so far) in memory care. I sense that the end is in sight, but youth and physical health might make it another decade. As much as I love her, I’d rather she die tomorrow than live with this awful disease another week, month or year. If there’s one thing that I would do differently it would be to avoid a for-profit memory care facility. Take care of yourself and do your best to take care of your loved one.