How can I deal with undiagnosed, unrecognized, likely dementia?

@doclarrea thanks for sharing and suggesting! My plan is to have a private appointment with our mutual Nurse Practioner soon, to explain my concerns and relate some of the changes to her. Then at least there’ll be a starting point. She barely knows us as we were just assigned to her care a few months ago but he’s seeing her soon for a physical problem so I think it’s a good time.
It’s so helpful to just hear these comments from people out there experiencing similar situations.

@judimahoney just wanted to add, I am registered with an dementia support group. (They have virtual meetings and I’m not comfortable with that. Also, I feel like I’m jumping the gun because the changes I see in him are not severe.) I also have a seniors’ mental health support person who emails and calls regularly, to monitor the situation.

@sunnygardens What I find with this disease is a lot of denial. My neighbor tried to convince me his wife had some aging memory loss when she was in the middle to late stages of Alzheimers. That was really sad to watch. And why, I mentioned to you earlier, I wouldn't ask his friends, anything. That just raises a flag, gets others involved who you will find, will turn the other cheek (for the most part) and not want to be involved. I think that Nurse Practitioner you mentioned is your shoe-in. So leverage her for help. Then you can figure out, what you do, where you go, what legal help you may need since you're not married, and I'm not sure you're thinking about any caregiving at this point. When you don't know what you don't know, it's really hard to figure out what to do. Trust your gut. I think you know, you need to at least get help in getting him to a doctor for some diagnosis. I say this all the time, probably more for me.....courage to take on what we need to do, clarity to know what to do and when, and God's light in helping us work through it all. Best, Karla

PS, what I noticed with my husband's early on memory loss, wasn't just normal aging. He would have issues "sequencing" his thoughts, there was delayed thinking and/or answering, forgetting much more than names. Where I noticed it too, he started losing things and couldn't backtrack. Then he started asking me the same questions over and over. I would see him do things that weren't typical from before. The biggest sign, however, was his inability to "understand" and/or work through situations, like we had done together in the past. I knew what he was experiencing was more than normal aging. Hope this helps. Best, Karla

@kjc48 oh my gosh, Karla……you’re the only person to tell me these things. This is so similar to what I’m seeing!! He gazes at me with a blank look during conversation. When I finally asked him about it multiple times (started out by asking if he could hear me), he finally said it seemed like it takes awhile for him to comprehend what I’m saying. I’ve noticed cognitive delay for a few months. This is new. Also, he refuses to go for a hearing test but lately, he often seems to not hear me at all. Even from a few feet away. I have to repeat a lot. He seems to have almost zero awareness of consequences, for even small things. (The other morning, the dog vomited on a polyester rug. Thinking to spare me the job [serving time in a week], my friend cleaned the rug with something, and removed almost all the color. Left a ring of water stain. ) He leaves for his snooker club in the hot afternoon, knowing it’s expected to be quite cold in the evening, wearing very skimpy summer clothes, with no sweater for later. This happens all the time. Little things like that……which don’t really cause trouble but aren’t normal for him. Once he didn’t gas up the truck, beginning a four hour drive home on familiar roads. At some point got worried abt the fuel gauge. Took a wrong turn and got lost, where there were no gas stations. He had turned off a short way BEFORE the known stations. Then he forgot to eat so he got all vague and sort of……couldn’t think clearly. All in the same trip. In the same roads we’ve/he’s been driving for over 25 years.
There are all these LITTLE things.
Yes, he asks questions over again but mostly because he forgot. Or he goes and does some task, makes mistakes over it, and when I comment, he says he “didn’t think/realize/know”. Except he did.
Hearing your similar situations helps me feel less like I’m imagining things.

@kjc48 yes, you’re right about telling friends etc. I fear they’ll talk to him about it before I do. I fear they’ll feel differently about him. I don’t want to tell his friends or contract his estranged sons unless there’s confirmation from a doctor.
What you don’t know is the cause of major stress, for me! In my life, knowledge is power. With knowledge I’ve can think about options, set goals, make informed decisions.

I didn't contact my husband's son, or mine from a previous message, until after my husband's diagnosis, and then I asked my husband how he wanted to handle it with his brother, sister, and his kids. Two of the sons weren't talking to him, so I haven't dealt with that yet. I really left it up to my husband. Then we called my son and his son together and we talked about my husband being diagnosed with some memory issues. We talked about the lequembe infusions and what they did to help get rid of amyloid plaques which could worsen over time. So we played it cautiously on the phone so it didn't make everyone fearful. Especially in a blended family, where it's a second marriage and kids from the first marriage get territorial. As for his friends, I wouldn't talk to them unless, at some point, he wants to talk to them. I think it's the addage, treat people the way we would want to be treated. A medical situation is confidential I think, especially as something as scary as a progressive disease, where there is so much uncertainty.
I wouldn't want my husband telling others or poking around asking friends if they noticed something was wrong with me. What you can you do, get yourself as educated as you can on the disease. Be aware of his behavior which you are. Utilize the resources you have like that nurse practitioner. She may be able to get your roommate to do things you can't do. Fear is often denial. Even when I talk to my husband now, about his memory loss, I'm careful what I say, because he pushes back. That may not be fear, that may be his hope, why he's doing the infusions. It's funny, I worked for IBM for 31 years, and we were real good at solutioning, and business cases, et al. This ambiguity - in the form of early on, mid or late stage - is hard to navigate so how you can help your roommate, I think, is that nurse practitioner who can be a Godsend for you, in helping you navigate initially. Your roommate is lucky to have you. You care and when you do talk to him, and offer to do things, tell him how much you care about him. Sometimes love has a way of helping others - especially when rigid and/or in denial - see that you only want the best for them.
Good luck, Best, Karla

@sunnygardens From what I just read, your other text, what you are describing are not little things. The blank look, I didn't mention that but yes, I get the same thing. Forget to eat. Remember, they can't logically reason, so wearing the skimpy clothes, he's not even thinking about the weather, and/or what he will need later on. As for the hearing aids, yup! that's the same thing that happened with my husband. They have to wear their hearing aids. I'm dealing with eyesight now, because mine refuses to wear transitions on glasses, yet he needs them for both distance and close in. He can't see now very well. I'm trying to remember, how quickly it came on. In 2024, he was hacked into. Someone got access to his PC, I think from all the clicking he was doing and confusion on goggle. That took us months to resolve. He was pretty confused at that time. Then losing things, he left his backpack in the hotel parking lot at night....phone was continually getting lost. He was having tech issues, confused, pushing buttons, bills were late and/or double paid. At least he acknowledged it took a while for him to comprehend what you are saying. I think you have your answer. Try to get him help leveraging the few resources you have, and then figure out Plan B. My husband is 78 years old and they caught his memory loss early - why he's doing lequembe. Good luck. Hope this helps. Karla

@kjc48 thanks again, Karla. Hearing these real life bits from a real person are so helpful and encouraging. I will certainly use our NP, as you suggested. Your situation sounds so similar to ours, it helps me realize I’m not imagining things or going loopy myself (yet!).
🌻 Sunny

@sunnygardens
Hi, I know what you mean about jumping the gun regarding some of the discussions at the support group. However, I stay and listen because I know what's to come and want to learn from the more experienced folks. Fore warned is fore armed.