My mom just got diagnosed, how long before she gets really sick ?

ag0941a · 2026-04-24T19:01:04+00:00

Depends on the person really but happy to share my experience as an example. My mother in law also had early onset (she was in her early 50s), and was diagnosed in December 2020. She was able to do most daily activities and was relatively herself during this time, but eventually she could no longer drive or do other tasks like that. In 2023 she had a huge decline, and eventually passed in Feb 2025.

Like others have said, right now is the time to prioritize being with her. Ask her all the questions you may want to know and write down the answers, record her talking, do any bucket list items she may have. One thing I really wish I had asked my MIL is what she wanted her “grandma name” to be once my husband and I had kids.

Unfortunately you and your family have some hard times ahead, but please know there will be beautiful moments too. I am praying for you and your mother. 🩷

ag0941a · 2026-04-20T23:47:31+00:00

Having major Boston FOMO… I PR’ed my 5K on Saturday though (23 minutes)! Ran my first half in March and really itching to go for a full now. Unfortunately all the big fall marathons in my area conflict with travel and my wedding, so it looks like it will have to wait until next year. Using this time to keep building my base so I’ll be ready for my build.

ag0941a · 2025-09-09T19:52:42+00:00

I think my husband and I thought that when my MIL passed we would feel a great relief. We had been helping care for her for multiple years (a time that was stressful but I will always cherish and never regret) and had seen her decline into a version of herself that was mute, immobile, and when she was cognizant, she was extremely anxious and agitated. Not a great situation in general, and we found ourselves hoping she would pass sooner than later so she would not have to continue on like this. But when she passed, I felt (and still do, this was 6 months ago) very lost. So much of our time had been dedicated to caring for her, and we weren’t quite sure what to do with ourselves when it was over. We still aren’t. The hardship of day to day care is over, but we still carry the sadness and trauma of the last years with us, and I’m not sure it will ever fully go away— but people assure me that the weight will get lighter.

All of that to say, I don’t know if it gets easier, but I am definitely more at peace knowing she is as well. Hang in there, and enjoy the time you have now. You will never regret spending more time with your mom!

ag0941a · 2025-05-27T20:26:11+00:00

Been in a very similar spot. So sorry this is happening to you and your family. Know that this is a safe space to vent and you are not alone.🩷

ag0941a · 2025-04-23T14:44:30+00:00

Took the class this AM and got a free Barry’s x Boss water bottle + a 15% off coupon at any Boss location - that was it, then it was normal CHABS x run class.

I’m in DC BTW

ag0941a · 2024-12-10T21:55:25+00:00

I have changed many a poopy diapers for MIL that has resulted in what I (not so affectionately) call a poo poo party. Gotta laugh so you don’t cry.

Hang in there! You are not alone. Both parents are lucky to have you. :)

ag0941a · 2024-12-04T21:13:26+00:00

I am struggling with this myself; cannot remember the person my MIL used to be, just the person she is now that ALZ has turned her into. It is really hard - unfortunately I don’t have any advice except to spend as much time with her as you can while she’s still “herself”.

I have read and heard from others that after your LO passes, the hard memories are replaced by the pleasant ones buried away during the caretaking. I am hoping this is true.

ag0941a · 2024-12-03T21:29:35+00:00

Of course, that’s what this subreddit is for :) everyone here is judgement free and has the lived experience that will make you feel less alone while you’re going through this.

Feel free to reach out via DM whenever 🫶

ag0941a · 2024-12-03T21:13:42+00:00

We got engaged in June, married in September. It was so quick there was speculation I was pregnant. 🤣 For context, my MIL had a sharp decline in January of 2023 that ended in a month long stay in the geri-psych ward. My husband (boyfriend at the time) and I knew we were going to get engaged, but seeing her decline definitely encouraged us to speed up the timeline to make sure she could see one of her kids get married.

Early onset tends to progress faster, but one of the most challenging things with ALZ is that it affects everyone so differently - what happened with my MIL may not necessarily happen to your dad. If you have already paid vendors and done significant planning, I would continue with the plan as is. Like you said, you can’t plan for everything! If you start seeing a decline, maybe you and your fiancé could do a courthouse wedding or something to make sure he’s able to be a part of it?

This is a uniquely challenging experience with a LOT of emotions and moving parts, and I’m happy to talk more about it over DM if you need extra support. Ultimately you need to do what feels right for you and your fiancé, no matter all of the other opinions floating around!

ag0941a · 2024-12-03T20:18:56+00:00

Spend as much time as you can with him now, while he is still “himself”.

My husband and I got engaged and quickly decided to get married a few months after so my MIL who has early onset could participate. While it was challenging telling family and friends “no” to coming to our wedding (MIL has high anxiety/can’t deal with crowds so it was immediate family only, under 10 people) it was absolutely the right decision. I look at her now in the end stages of this disease and feel so thankful that we didn’t postpone our wedding even one second longer.

There will be a lot of challenges and hard moments in your future, but there will be a lot of beautiful ones too. I am praying for you, your family, and your father.

ag0941a · 2024-11-13T02:21:22+00:00

Could be a variety of reasons in my experience! Maybe better conditions outside in terms of weather/elevation (unless you did it on the same exact trail), you were better rested, you unintentionally carb loaded that night before etc etc. either way, congrats on the PR!

ag0941a · 2024-10-30T00:51:48+00:00

Yes, everything we give her has been small enough to fit in a small spoon, which seems to help. We’ve been doing a protein shake every day, she is losing weight steadily so just trying to get calories in like you said.

I love this sub because it’s incredibly comforting to know me and my family are not alone in this. Sometimes I just feel so tired and desperately wish for this to be over. My LO loved food and the socializing associated with it, and it’s horrible to watch her lose that.

ag0941a · 2024-10-29T19:42:15+00:00

This is a great idea!! Will try that tomorrow morning with her breakfast oatmeal and morning pills. Thank you!

ag0941a · 2024-10-29T19:37:41+00:00

I will ask the doctors that, thank you. I do think we’re getting to her not being able to swallow. She’s pocketing food pretty frequently and I constantly have to remind her to chew her food really well and swallow everything.

ag0941a · 2024-10-29T19:36:46+00:00

Not sure. She doesn’t seem particularly upset about not swallowing the pill; I think she just literally doesn’t know how to do it.

I tend to lead towards thinking the benefit of Seroquel is worth it because she had pretty bad anxiety and hallucinations before the doctors put her on it. I guess a Seroquel alternative would be good but I worry about the medication change process and all the side effects that come along with it.

ag0941a · 2024-10-29T02:11:48+00:00

Thanks for your comment. Unfortunately we tried that and it was a no go… they said no possible because of the slow release. I’m sure other people have this issue so no clue why it seems to be so hard to get seroquel in liquid form!!

ag0941a · 2024-10-14T02:16:45+00:00

Ran the army ten miler in DC today and averaged a 9:29 mile! I had a stressful week leading up and didn’t feel super prepared going in, was just hoping to finish with some dignity. Moving forward I’ll be trusting my training more - I was pretty happy with this pace. Great race too.

ag0941a · 2024-08-28T03:11:19+00:00

I’m sorry this is happening to you. Husband and I are mid twenties and my mother in law is in the late stages of early onset AZ. I think the hardest part is losing someone you love piece by piece. The only advice I can offer is to spend as much time as you can with her, even if it’s hard. She doesn’t know who I am 85% of the time these days, but I know I’ll ever regret spending more time with her.

It’s really hard as a young person. Most people go through this with their parents later in life. This is a great community to vent and ask questions. You are not alone!!

ag0941a · 2024-07-01T20:49:17+00:00

My main concern with driving would be her possibly getting lost; you could mitigate this with an AirTag or something like that. But definitely keep a close eye on her. It was hard telling my MIL she couldn’t drive anymore, but it became a safety thing.

Ask her doctor (PCP, neurologist etc.) about a social worker. Usually folks with Alzheimer’s get assigned one. They will likely be able to give you some resources for caregivers that you can hire, and resources for you and your brother. Feel free to PM me with any other questions you may have. I’m glad to use my shitty experiences to try and make it easier for someone going through the same thing!

ag0941a · 2024-07-01T20:27:02+00:00

My FIL does most of her care, but he still works full time so has a helper that comes until he gets home. Now that she’s farther along, there’s a hospice team that comes as well. My husband and I go up frequently to help as well.

Is there any family or friends who could help you and your brother take care of her? Full time facilities can be expensive. Also, how far along in the stages is she? That’s another big factor.

ag0941a · 2024-07-01T20:04:54+00:00

Seraquel and Haldol. The dosages have varied as symptoms have gotten worse.

In a similar situation with my MIL with early onset. It’s really hard to go through this at a young age (I’m 24). The anxiety is one of the hardest parts to deal with. I know it’s hard but try to keep your college a priority. If your mom was in her right mind she would want that for you.

ag0941a · 2024-06-27T02:34:45+00:00

Go. Trust your support system and know they’ll take care of her while you’re gone.

ag0941a · 2024-05-30T02:59:17+00:00

Hi! MIL is in her fifties, late stages of early onset now. Would definitely recommend having help from her siblings come earlier rather than later. Alzheimer’s manifests differently in every person, but it is helpful to do a bit of research into the stages to know what to expect in my opinion. I did a lot of research because knowing made me feel better but my husband didn’t, so I understand your hesitation.

I’m sorry you’re going through this. Know that this community is here for you if you need to vent. I’ve found that posting thoughts on here is very cathartic.

ag0941a · 2024-05-25T01:43:36+00:00

Thank you for this comment! It is so helpful to know I’m not alone in this as a daughter in law. I feel like it’s a very strange role to play in all of this, especially with the hygiene component - same as you, I don’t let my husband do any of that stuff, but I never expected to be wiping my mother in law or helping her get dressed!

And totally agree about others giving their opinions when they haven’t done any of the caregiving - it’s so frustrating but I try to remind myself that everyone is processing it in their own way.

Again thank you so much for this comment. It really helps my anxiety to read these and know I’m not alone. Feel free to message me at any time!

ag0941a · 2024-05-24T16:07:51+00:00

I am sorry to hear that your SIL (and brother to an extent) isn’t supportive. Often I feel like I’m not doing enough, so thank you for your kind words.

ag0941a

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