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Husband developing memory issues
Hello everyone, I am new to this site as I look for some information, advice, and support with my husband's changing memory issues. I have read many of the posts and appreciate the sharing of stories and the compassionate help provided. This may be quite long, but here goes!
My husband is 76, I am 74. Over the past three to four years, I have noticed his occasional unusual memory lapses, which I had hoped was normal, age related memory loss, though I was concerned. For instance, we have walked our dogs on the same daily route for many years, and several trees were cut down around the corner from us. We love trees and were sorry to see them go. A week later, I commented on how I missed the trees, and he said there had been no trees there. This was a very different kind of forgetfulness in that he simply had no concept of there ever having been trees there before. Life moves on, and occasional things happened, like forgotten conversations. But in recent weeks these incidences have become rapidly more common, almost daily, and my husband gets frustrated and angry with me as I try to figure out what is going on. A few days ago, he told me "Hannah's car is parked outside". I said " who's Hannah?" (we don't know a Hannah). I looked puzzled and after a few back and forth questions and answers, as he got increasingly frustrated with me, I realized he was talking about our neighbor Rachel, who we know well, socialize with, and talk to often during the week. When I asked if he meant Rachel, he looked confused and said, yes, it is Rachel...who's Hannah? Also I'm now regularly seeing forgotten conversations about anything from casual to important, forgotten by the next day.
I was able by chance to talk alone with his PCP, who was subbing for my PCP for a check up I was having. He asked if I wanted to get my husband in for testing, but I'm not sure if we are there yet. For one thing, he denies that has memory issues, and insists that I am wrong. It is also the case that this is not all the time, and he frequently has a better memory than I do. Some days are fine. But I don't forget conversations or the names of people in our close circle, or to get the chickens in at night, which he has done for 30 years.
I am feeling anxious and with a sense of dread as things are quickly changing. I have a lot of lifetime experience with dementia.
My grandma and mother-in-law both developed dementia and both suffered for 15+ years. I was not the primary caregiver but the daughter of one and daughter-in-law of the other, and was a support, shoulder to lean on, and compassionate listener for most of my 20's and 30's, and then my 50's and 60's. My husband was primarily responsible for his mother's care for the last years, although she was not living in our home. Both ladies followed a similar path, becoming verbally abusive and physically aggressive and violent, to the extent of causing injury to family, caregivers, and other residents in memory care. It was indescribably hard. And I know you will know this.
My support is limited, our few remaining friends are older than we are and are having significant health, and beginning memory issues of their own. They need our help. We are emotionally close to our daughter but she is 400 miles away with a new baby, and I know this is not her burden to bear. I know I need to learn to accept what is happening, but the realization is only just hitting me, and based on my past experiences I am feeling stressed and terrified.
So that is my story. Thank you for reading and listening. I so appreciate that you are here.
J.
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Thank you for your thoughts, I really appreciate your input. I think it is wise to ask others dealing with the same issues for help in navigating treatment for dementia. From what I have learned so far from his doctor, his brain scans and the Alzheimer's website is that the infusions are not effective in the late middle stage of dementia that he is in. It's too late. I agree with you about when we were growing up the big scary issue was cancer. I lost two of my cousins to it. Now it seems that dementia is everywhere but maybe that is because we baby boomers are living longer and there are so many of us. I just pray for a cure and I believe there will be one at some point in the future. I know the research is ongoing, hopefully not stalled because of funding cuts.
One day it will happen.
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2 Reactions@kjc48 you sound like a very strong person who has to deal with so much! Your husband is lucky he has you to be his advocate. Right now I’m trying to get our health insurance to pay for a PET scan so my husband can go on one of the new infusion drugs for early Alzheimer’s. The initial request was denied. I like your method of making a list each day of what you need to do. Everything starts to feel overwhelming when you’re doing everything by yourself.
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4 Reactions@elm123
I worked for IBM for 31 years, so I'd like to think I was good at organizing and taking the ball and running with it. Unfortunately, MCI wasn't on my list to deal with, I don't even know if I knew what that was. Do you have Medicare as primary? We had Medicare first, then IBM went to a different retiree plan, and we ended up on Medicare Advantage. That wasn't good for us, as everything we did was denied, and the doctors in Florida, many of them wouldn't take Medicare Advantage, United Health Care - even Mayo in Jacksonville which previously did but stopped two years back. So we switched back to Medicare.
As I mentioned my husband is on lequembe his fifth infusion, today he goes for an MRI. Yes, try to do your lists, and look at them every morning and cross off what you did. On the infusions, when they go on them, at least lequembe, there is an MRI done before every 3, 5, 7 and 14th infusion, so if you can get through insurance paying for the petscan, make sure they cover the MRI's. My understanding is that it used to be every 4th infusion, but that changed in August, 2025. I don't know if the doctor's practice we're in changed it, or if it's a lequembe requirement.
Hope this helps.
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2 Reactions@kjc48 I know the insurance issue was secondary to your main point, but I wanted to point out that you might find a medigap supplemental plan is better suited to your needs than an advantage plan or original Medicare alone. There are many choices, a little cheat - plans f and g are the best ones, also the most expensive
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2 Reactions@kjc48 I was a system engineer for AT&T for 25 years, so I guess we have a lot in common. I'm still fighting with the neurologist's office to get the needed information to Blue Medicare Advantage. Out insurance is thru my husband's carpenter's union, so I hesitate to switch. This is the first time we've been denied for any medical care (I had cancer 6 years ago) and I think it's more the neurologist's office not following up when they needed to. I'm trying my best to keep up with everything. I hope my husband can get the PET scan because we have an appointment with a neurologist associated with a memory center at Rutgers in New Jersey and I want to see what he has to say about the infusions,etc.
It's nice to have someone to talk to about this. Have a great day!
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2 ReactionsThanks, yes, I do have a Medigap plan G with Mutual of Omaha for both my husband and I.
When we had to leave the IBM retiree plan due to lack of coverage and medical denials, unfortunately, we ended up on Plan G, I loved Plan F, but at that point, through medical underwriting again, Plan F was just a lot higher premium from when we initially had it. We were also concerned Plan F was going to be cancelled, and that would cause us an additional problem.
So we're in Plan G, but as you know, the premiums for all these gap plans are significantly higher due to what's going on with Medical. As for switching, when I called yesterday Boomer Benefits, I was told that to "switch" to another Gap, if our husband or wife is diagnosed MCI and doing infusions, we would be rejected by medical underwriting, so I think it's prudent to stay with what you have, and keep working the doctor's office to resubmit for Pet scan coverage. I remember on Dental with Medicare Advantage I was denied 5 times for my husband's work, only to FINALLY get it approved. Thanks for your note.
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3 Reactions@elm123 I'm reading this again. If the Petscan isn't covered, are the MRI's? As if your husband goes on infusions, he'll need periodic MRI's before the 3rd, 5th, 7th and 14th infusion. We stumbled on that after he started the infusions. I finally had the neuroligist's office print me out his full schedule for the remainder of the year, so I knew when his MRI's would need to complement his schedule. And even then, I had a hard time, as "MRI Brain Plain" on the work order (which I get a copy of), the hospital didn't want to take, because they wanted the words, MRI Brain with contrast or MRI Brain without contrast. I had to goggle to see MRI Brain Plain (was without contrast). OMG, so much detail, and so many "interrupts," it's hard on days to figure it all out.
THanks for your post. Yes, it is to have someone to talk to........ Gratitude, my mantra now everyday for this Mayo Connect site.
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3 Reactions@elm123 I sent you a response but I do know that Medicare advantage plans have been changing their coverage like everything else. I'm not worried about the Part D plan (prescription) and covering the lequembe infusions 2026.
Gosh, there is a lot to worry about. I think I did mention just make sure MRI's are covered, as that's part of the lequembe process (although our doctor didn't tell us that initially). We stumbled on that before they would do the 3rd infusion.
Good luck at Rutgers in New Jersey. Let me know what they say about the infusions.
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1 Reaction@kjc48 I may be wrong but it is my understanding that if a drug is administered in a doctors office it falls under Medicare part B rather than part D
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2 Reactions@laura1970 Thank you so much for sharing this as it's been on my mind, and the doctor's office told me to make sure I check with my prescription plan because the formulary changes. SHe said there are two facets to lequembe, the actual person who gets paid under Medicare to do the infusion, and then the actual medicine lequembe, which she said was under Part D. But I'm going to check it this week, with the neurologist's office who is doing the pre-authorizations for the lequembe. Thank you, sooooo much.
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