Early in journey and feel it is progressing faster than expected

kozakh

My wife has been diagnosed with early stage Alzheimer’s. She is on Leqembi infusions (7 complete), aricept but feel she is progressing. She is still working part time at Trader Joe’s and they are so accommodating…that is great for her to keep her going. She drives pretty much locally.

Has anyone’s LO been on Leqembi…did it help at all? How far in?

I feel like a failure when I hear other’s stories. Their LO are further in, more challenges vs mine that feel so minor and am frustrated, angry, afraid.

I commend everyone on this group…you are an inspiration. Hugs and prayers to you all.

ARIL

So sorry about your wife’s diagnosis. No experience with the infusions, but lots of experience of being overwhelmed while understanding that other people’s situations are often harder. And mine used to be harder than now—I sometimes wonder why I am not able to snap out of the funk, the frustration, the distress.

You are not a failure. Neither am I. We are human, doing the best we can—and this whole thing is really, really hard. People here understand that. You are among friends.

PS Got some worries about the driving, even if your wife seems safe locally. Check your insurance coverage: many people on this forum report that their insurance would not pay out if there has been an Alz diagnosis.

SDianeL

welcome. Sorry about your wife. I don’t have experience but you can search the forum for posts about Leqembi and read them. The search thingy is at the top of the page.

harshedbuzz

@kozakh

Hi and welcome. I am sorry for your reason to be here but pleased you found this place. You said

I feel like a failure when I hear other’s stories. Their LO are further in, more challenges vs mine that feel so minor and am frustrated, angry, afraid.

This isn't a race to the bottom. Every stage brings heartbreak and challenges. Each PWD reacts differently to their losses.

I can't speak to the infusion medications in terms of efficacy. But papers I have seen suggest that women might not benefit from them to the same degree men do.

HB

Maru

https://alzconnected.org/discussion/74432/early-in-journey-and-feel-it-is-progressing-faster-than-expected

I think most of us feel pretty overwhelmed in the beginning; the diagnosis itself is enough to produce that feeling. Then, the guilt comes in…should I do this or that, I lost patience, I'm not doing thi right, am I making this up…

We do the best that we can, learn as much as possible, get ourselves and the house prepared for what may come next. My DH is approaching or is in stage 4 and I have put a waterproof mattress protector on his bed, bought puppy pads and absorbent pads for the bed. I am making dietary changes as he tells me what it is that he no longer likes. I am looking at assisted living and memory care and will get his name on the waiting lists…just in case. We have POA and medical POA ready and signed.

When things get tough, you can cry or scream here and no one will judge you. I hope that you have some one who can emotionally support you.

JJ401

Sorry you have the need for this group.

Unfortunately, neither Leqembi or Kisunla (which DH is on) stop progression. They only slow it. So you will continue to see progression, just at a slower rate (hopefully). I'm just banking on more functional time at home.

When to stop driving is always a hard decision. You don't want to take away their independence, and you want to stop them driving before there is a catastrophe. A co-workers father only drove locally, yet ended up 100 miles away. A friend's husband got into three accidents in a week (thankfully just small dents and scrapes). Local driving does not mean safe driving. Your wife's driving may be safe today, but there will come a time (maybe soon) it isn't. Ride with her frequently so you can keep an eye on her ability.

Keep reading here. It's great information for the future. Ask questions. Vent. This group is a full of caring people who are here for you.

Timetoponder1949

My husband is receiving Lequembi infusions. He is closely monitored and has recently paused treatment due to several micro bleeds. We begin again mid November. He also has been diagnosed with primary progressive aphasia., We drive two and a half hours twice a month for infusions. I cannot say the infusions are helping but it gives him hope that he is in control or at least trying to combat this diagnosis.
Right now he does not agree that he should stop driving. I am not sure how to tackle this because he believes his driving is fine. He will not listen to reason.
He will not agree to be evaluated at a driving school. He feels it is not necessary because he thinks he drives without an issue.
If anyone has thoughts on this I’d be appreciative.
This is my first post.
Thank you.

ronda b

Try using the ins. Company will not cover him if in a wreck. Whether it's his fault or not d/t his diagnosis. Which you could be sued .

Elizabeth607

https://alzconnected.org/discussion/74432/early-in-journey-and-feel-it-is-progressing-faster-than-expected

My husband has completed 36 biweekly infusions and has begun the monthly infusions; his second monthly infusion is tomorrow. AD still progressed, perhaps not as quickly if he didn't have the infusions, but we will never know. He thinks it has helped him. The time period in which he had the biweekly infusions didn't make him "normal." He still needed help with day to day activities He also takes Donepezil, Memantine and Rexulti. He hasn't driven since shortly prior to official diagnosis (January 2024 after 6 months of testing). He had a few fender benders and the Dr. said to give up the keys.

SDianeL

https://alzconnected.org/discussion/comment/256994#Comment_256994

welcome. You will never get him to agree. He is unable to realize he has a disease. You can’t reason with someone whose reasoner is broken. You must take charge and take away his keys or disable the vehicle. He could hurt or kill someone or himself. Insurance could refuse to pay if he’s in an accident. Read the book “The 36 Hour Day” which was recommended by a nurse.

kozakh

https://alzconnected.org/discussion/comment/256804#Comment_256804

thank you. I will check with insurance company.

kozakh

Thank you so much. Her psychologist keeps asking her to talk to me about looking at memory care facilities. It is very hard for her to hear that. I have broached at least our need to prepare to move closer to my work (45 min now), something one level and smaller.

kozakh

Thank you

H1235

https://alzconnected.org/discussion/comment/257186#Comment_257186

There can be a waiting list at facilities and some can be long. She may not be willing right now to face that a facility may be necessary and down the road she may no longer even acknowledge she has dementia. You could end up with problems if you wait for her to help you plan for her future. Lack of ability to plan and executive functioning are common even in the early stages of dementia. Time is also difficult for a person with dementia. After diagnosis my mom had no sense of urgency about anything (even getting to a doctors appointment on time). She seemed to think she had all kinds of time. She did not understand the need to plan for the future. I recommend you come up with a plan B on your own.