So unsure what I’m supposed to do to help. It’s MCI right now, but what exactly does that mean?

OPKansan

My husband is 70 and was recently diagnosed with “MCI due to Alzheimer’s” after going to the doctor after experiencing memory issues. He had an MRI, then PET scan, which led the neurologist to his diagnosis and starting Aricept. (This is our first week on it.) (The dr also suggested he think about infusion therapy, which he has adamantly said he won’t do.) He was also told to stop drinking — a habit he’s had since age 19. In the last month, he’s reduced his nightly beers to about 3 from 5-7. That’s been due less to the dr’s orders and more due to our MANY discussions (and my many tears) when he’s way overdone it the night before. He says he knows he needs to stop and will limit it to 1 a night until he runs out of what he has in the fridge. (I have my doubts.)

Anyway, I don’t think he truly understands his diagnosis. Yesterday, as we were discussing his appt today for his annual physical, he was saying he didn’t understand why he even needed to go for the physical. I said he needed to have his blood work checked — cholesterol, thyroid, etc. And I said he also should make sure he mentions to his GP about his recent test results from the neurologist. He said, “What do I need to tell her about?” I said, “Make sure she knows about your recent diagnosis.” He said, “Diagnosis?” I said, “Your diagnosis of MCI due to Alzheimer’s.” He said, “But I don’t have Alzheimer’s, right?” I replied that’s what he should talk about with his GP because I’m not entirely clear myself (despite a LOT of reading); I know he has MCI but the wording his neurologist used — “due to AD” — isn’t anything I’ve read online. (That MCI CAN lead to AD but it doesn’t always.) But I told him that my understanding is that if he improves his diet, exercises, gets enough sleep, takes the Aricept, and stops drinking, that those steps can significantly slow the progression “of his disease.” I think he hadn’t paid attention to what I was saying until I used the word “disease.”

Last night, I couldn’t sleep as I contemplated our future — both the near future and far. I don’t think he truly understands what the future can be if he doesn’t change his habits. And while I want to talk to family (his kids, my son and his wife, who is a DPT, and his brother), I don’t want to burden them any more than I have to — my son’s expecting his first child and they all have their own burdens.

So, he came home from his physical earlier today. (He wouldn’t let me go to this appt with him. He said I stressed him out too much at the appt with all my questions and “throwing him under the bus” when I offered extra information that he hadn’t supplied) I asked if he had talked to the dr about his condition. “My condition? You mean my sleep apnea tests?” (He recently had an in-clinic sleep study to see if that’s a concern; we don’t have results yet.) I said, “About your diagnosis.” He finally seemed to get it, and said, “Well, she has all my notes, and we talked about my new drug.” Sigh. So, no, he didn’t ask her anything and she didn’t offer any suggestions. And I looked up info online last night when I couldn’t sleep that really didn’t confirm for me whether his condition will for sure get worse or could potentially remain the same and/or improve if he does what he should.

Sorry for such a long note. It’s my first one on here, and I’m just already overwhelmed with what is worth worrying about and what I should just put aside. Any advice is greatly appreciated!

Embee45

My first suggestion is to talk to an attorney who specializes in elder care law and get all the legal paperwork ready while your husband still has some cognition. Like medical, financial POAs and updated will etc. If you don't already have it.

I always go to doctor appointments and don't have pushback, at the very least call ahead and let the doctor know that there is MCI. Because of the MCI he won't remember all his conditions so it's not always that he doesn't want to talk about it, he can't remember. Also it's really hard to admit a weakness, like the disease. We all want to be "perfect" especially to the outside world.

Investigate everything possible to get yourself help and support. Cultivate some activities that you do on your own to get a break from the constant stress. Find friends who will just listen to you vent and not offer you advice. Remember everyone's journey is different so what works for one will not work for someone else, that's why you need to try every possibility

Sending good vibes to you on this journey.

OPKansan

https://alzconnected.org/discussion/comment/281307#Comment_281307

Thank you for you support and advice. I do have lots of outside activities and friends with whom I can talk. I guess I need to lean in on those.

I decided not to push back on going to this particular appt simply because we HAD just seen his PCP back in March—the first time we addressed his memory issues—and this was just the basics (blood tests, etc.). Also he’d been so ticked at me after the recent neurologist appt where he said I’d “thrown him under the bus.” So I wanted to give him his space and some autonomy. But there’s no WAY I’d let him go to any future appts without me.

He is so funny and loving and is easily handling our finances, ADLs, shopping, cooking, etc. Right now, in fact, he’s researching buying a new car and is contacting our financial advisor about moving the money out of our investments to pay for it. He’s totally focused on the task, watching YouTubes about negotiating tactics (as it’s been a few years since we last bought a car). No one who doesn’t basically spend 24/7 with him would notice any memory or cognitive decline. And I’m familiar with the needs to seeing an elder care attorney eventually due to my mom’s declining cognition and health before she passed. So, I know that’s in our future. The neurologist said to come back in 6 months, and I intend to use that appt as the start of addressing when we need to start taking those types of actions.

He’s going to take a short road trip to go fishing with his brother in a week or so, and I intend to let his brother know about his current status ahead of then so he can use the time together to talk to my husband. (His brother was the one who convinced him to get the PET scan because, after the MRI, he didn’t think he needed it. He told his brother the MRI had been “inconclusive,” which wasn’t true. I think the neurologist simply described what he saw on the scans in such a matter-of-fact manner and in terms that made it seem like no big deal.)

I guess my current status is that I’m grieving a future that might not even happen. I know I need to prepare for a possible future in which his cognitive decline progresses, but I wonder if I can give myself the next 6 months to not worry, hope for the future, live in our current happiness and contentedness, and watch how he does now that he’s started taking the Aricept (and I’m working with him to increase his health in all the other ways the doctors have suggested).

Gig Harbor

If his PCP knows he is on Aricept she knows his diagnosis. Do you know about your finances and do you have access to all passwords? You need to start checking them frequently to make sure he is not making mistakes or changes that don’t make sense. Eventually you will need to take over everything. I agree with Embee45 about seeing an attorney to make sure everything is in order. Possibly use his time away to do that. With Alzheimer’s you need to plan ahead and often need plans A,B and C because you don’t know how quickly things will progress. If you feel you can’t speak freely in front of him when you go to his Dr. appointment send a letter ahead so the doctor will be aware of your concerns. Planning ahead will bring you a level of comfort. Good luck.

trottingalong

I’m with Gig Harbor. You really don’t know when or if things will change. Speak to an elder attorney while hes gone fishing. Knowledge is strength. They can appear fine one day and the next do something very out of character. Think hard about a new vehicle. With a diagnosis of even MCI your insurance may not cover him in an accident. Electronics can get confusing to a damaged brain and cars are full of buttons to be pushed. Driving is not just about getting lost, it’s about confusion and responses when behind the wheel. Just last week an elderly man was backing his truck to pick up supplies and hit the gas peddle instead of the brake, crushing a young father who’s in critical condition.

MaryMN

https://alzconnected.org/discussion/76996/so-unsure-what-i-m-supposed-to-do-to-help-it-s-mci-right-now-but-what-exactly-does-that-mean

While a diagnosis of MCI can be caused by many things (such as alcohol use, sleep apnea, and vitamin deficiencies) that do not cause a progression to full on dementia, the fact that the neurologist diagnosed him with "MCI due to Alzheimer’s" means that your DH definitely has Alzheimer's. The purpose of administering the MRI and PET scan would have been to confirm this. While leading a healthier lifestyle help may slow the progression of the disease, his abilities will continue to decline because there is no cure. Others have given you excellent advice about getting your affairs in order. Sorry that you've joined the group that nobody wants to be part of, but you will find support on this site. Come back often.

Lethe

Welcome and sorry you need us. I agree NOW is the time to see an elder attorney and set up DPoa, health care Proxy etc. This can be time consuming and I realized with my DH who was also diagnosed with MCI at the time, that he really wasn’t retaining any of it. The reason to do this now is so that he will understand as much he can and be able to give his consent. If you wait too long it can get into needing conservatorship which is a much more difficult process. Also, since he is the one managing finances now it may be a big learning curve for you once you need to take it all on yourself. The other thing I will say about this is that his brain is broken and there will be a disconnect where he sounds/seems “normal” but then you realize after the fact that there is nothing “mild” about mild cognitive impairment. It’s a lot to take in initially but I’ve learned so much here. Ao come back as much as you need to.

brupt30

I think that neurologists are loathe to diagnose anything other than MCI in the earliest stages even when they are sure of more advanced progression. It was very confusing to me early on, since my DH's behavior seemed to be much more in sync with dementia. Depending on where you find information, MCI is supposed to be stage 3 before dementia, and actual dementia begins in stage 4. So…a diagnosis of "MCI caused by Alzheimer's" (a form of dementia) seems almost contradictory to me.

Maru

@MaryMN is correct. Your neurologist said MCI due to ALZ…which means that he AlZ but is in the MCI stage. I keep a copy of the DBAT test in my files as a handy reference to what stage my DH is in. This is a free downloadable test…just google DBAT and you will find it. Doctors mostly use mild, moderate, severe staging but as a caretaker I find it helps me to know what behaviors I can anticipate and be prepared. Try not to freak out (it is a scary diagnosis) and read everything you can on Alz. Watch the Youtube videos, esp, Tam Cummings, Teepa Snow and Natalie Edwards.

I have been going in with DH to the doctor for a while. In the beginning it was "to take notes on what the doctor said" so that we wouldn't forget anything.