It Happens

Terri 2.0

Hi All,

My DH's new catchphrase is "it happens". The other day when he left for the day, he didn't close or lock the front door. When I came home I didn't know what I was walking into. Luckily nothing bad happened, but when I mentioned it to him, he said "it happens". He didn't seem concerned at all. I've gotten the same response to several other incidents that have occurred.

Is this a coping mechanism for him? I can't wrap my head around the fact that nothing seems serious to him. He has been more anxious and short tempered lately, and I have a call in to his doctor to ask about his med dosage.

He knows that he has memory issues, but doesn't recognize any other issues. He doesn't know about his AD diagnosis, (he knows he has MCI) only because I want the doctor to take the lead on that; we see her next month.

Also, his need to "relax" is making me bonkers. If he's not at work, he says he needs to relax. That means doing NOTHING. He's physically able, but just wants to nap and watch old westerns. We went to the grocery, and he sat in a scooter cart to do the shopping. He sat there while I put the groceries on the belt, and when I put the bags back in the cart. There's no physical reason for that. He walks 5+ miles a day at work, it's just around me.

I need help understanding. I've read and read, but I can't figure it out.

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housefinch

Yeah, I can relate. My stepdad now just answers, “So cool!” and sounds excited and interested in the topic of conversation, whatever it is. He can temporarily look socially appropriate depending on the topic, and completely befuddled in response to other topics! I’m sorry about your husband’s progression. At least to me, he sounds like someone who no longer has the executive functioning skills to be walking anywhere alone, driving, or working in almost any job. Maybe others will have a different opinion. Best wishes to you.

Ed1937

"He doesn't know about his AD diagnosis, (he knows he has MCI) only because I want the doctor to take the lead on that; we see her next month." Are you sure it's in your best interest for him to be told he has AD? I know this is probably a question that might solicit different answers, but I would be concerned that if he knew he had AD, he might go into a severe depression. My wife never knew she had dementia because she was ill and didn't hear the diagnosis when it was given. I never told her. When we lost a son in 1998, she went into a severe depression that lasted for years. I wasn't willing to risk that again. She never knew.

Terri 2.0

Ed, I wasn't sure what the doctor would say about it, so I didn't say anything to him. I don't see that telling him would be a positive thing; he'd probably just want to relax more.

Victoria and housefinch, I agree that he shouldn't be driving. His geriatrician says that he's ok to drive. He had a full driving assessment in May and DMV passed him. I've said to him that his driving scares me, and of course he said "that happens".

He's never had a thing to do with our finances, so that's a non-issue. I've had one (introduction) meeting with the CELA I've chosen, now waiting for an appointment. Right now the first available is in February.

Apathy was the word I was looking for. Thank you because I was racking my brain, and I know the word well. That's DH in a nutshell.

One exception; he constantly wants to hang on me, kiss me, hug me, etc., trying to get me into the BR. Multiple times a day. I never give in when he does that. One day I will miss that, I'm sure.

JDancer

My DH also has a few catch phrases. When I leave the house it's, "I hope all goes well." When I return it's, "Hope all went well." I don't think he has any idea where I've been or what I've done so he uses generic words that work in all situations.

ThisLife

Lack of empathy and apathy are part of dementia and the lack of executive function in the brain. Unaware of security issues. Watching you work while he sits. In addition, he is expending a lot more energy functioning "normally" at work which probably does cause tiredness. The tasks at home that he has done in the past also require much more mental effort to perform. While he can physically do the task, he is losing the ability to engage in the needed steps. He may be anxious and short tempered because he is frustrated. My H recently had new neuropsychological tests done. His language skills have really declined. When I asked him to do something that I think he should be able to do, I get anger and glares. The Neuropsych gently suggested I quit asking him to do things he is not capable of understanding/doing. A light bulb moment for me. So, I stopped asking. Things are calmer. I finally got it through my head that the man with the functioning body has a broken brain. I spent a lot of time seething inside while he just sat there. I could have saved myself some aggravation. Sending you hugs. The disease takes its toll on everyone.

JJ401

He had his full driving evaluation in May. It may no longer be valid. You see him every day. Your analysis of his driving ability should override.

As to the need to relax, if he's still working, he's most likely using up the majority of his energy reserve functioning at work. He's exhausted when he arrives home. He has nothing left. It may be realistic to think that his time of working may soon be ending.

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Iris L.

There are seven A's of Alzheimer's Disease--anosognosia and apathy are two of the A's. Terri, read a lot of threads, it will help you to know what to ask and to say at the doctor's appointment.

Re: driving, a question that is often asked is, would you let a grandchild drive with the LO?

What med is he on?

Try to get a look at his last annual employee review, searching for warnings of poor performance. Is he old enough to retire? If not, perhaps he is eligible for SSDI and/or company long term disability insurance. Read about compassionate allowance.

Iris

harshedbuzz

In the middle stages of dementia, dad's speech was very scripted. He tended to retell the same stories verbatim and he also replied to questions with scripted answers.

It sounds like a couple things are in play. There is the loss of empathy- no understanding that you could be upset by something that isn't upsetting to him. There is the loss of executive function- the higher order thinking that allows one to parse cause and effect. In dad case, by the early middle stages, he would not accept blame for anything that happened. It was also like the "magical thinking" phase of toddlerhood. This applied to everything from losing $350K+ day-trading (he blamed me for losing that amount selling his house) to spilling a drink.

I don't understand what you mean about the doctor taking the lead on AD. Is the doctor is neurologist or some other specialist or is this his PCP? Asking because often a PCP feels out of their wheelhouse in this area and will be reluctant to give a terminal diagnosis like Alzheimer's to a patient with whom they've had a longer professional relationship. They may be less likely to deliver mandates like "no driving" as it might impact the patient continuing other care with them.

That said, dad's neurologists did tell him he had Alzheimer's and/or Wernicke-Korsakoff's. They also told him he could no longer drive or make financial decisions. On one hand, dad did know he had Alzheimer's but he was unable to really understand what that meant to him personally. Before anosognosia set in, he was aware of his memory issues, but he wasn't able to sense the changes in things like empathy, executive function, apathy, mood, etc.

I am not surprised he's fatigued. Part of what's in play would be the lack of empathy-- it's all about him now. But also, if he's got Alzheimer's and is working he's likely in showtime mode during his shifts which is exhausting. I would be discretely investigating whether he should continue; if he's fired for cause or even downsized, you could lose access to some benefits to which he is currently entitled. I might explore disability asap.

I would also stop the driving. I would call your insurance agent to find out whether he is covered with an MCI or Alzheimer's diagnosis in his medical record. Dad wasn't. Had he had an accident and was sued my parents could have lost everything. Also, if your husband did have an accident and was sued, during the time that elapsed between the accident and the depositions and court day your husband's dementia will likely have progressed so that that man who might not even have been at fault that day will be much more impaired looking and acting than he was the day of the accident. My mom, who does not have dementia, was sued a few years ago after an accident. Her insurance provided the attorney and paid a settlement, but it was an incredibly stressful situation that hung over our heads for over 18 months. You don't want him on the stand after he's harmed someone parroting "it happens".

HB

M1

I want to pick up on one thing HB said and that you alluded to Terri---when you say you want the doctor to "take the lead"--do you mean you want the doctor to tell him the diagnosis? Ten years ago, I thought the same thing and had this thought/hope/delusion that if our dear primary care doc told her she had dementia, it would lead to an "aha" moment where she would know the diagnosis, realize the implications, and realize she had to defer to me on decision-making in a number of areas. When I had this discussion with our doc--as I've related many times on this forum--he laughed at me. It just doesn't work that way. The doctor's telling him will likely have no impact on him. It may need to be in the record for insurance purposes, driving purposes, etc.--but it will not have any impact on your DH. He either won't believe it and will get defensive, or will forget it. It also doesn't work for you to remind him or tell him he has dementia. If he is aware that he has "memory issues," that's likely all you're going to get.

Davegrant

Terri WNC

My DW continually roams the house and looks at things, but she also often alters them in some way, and she is always willing to help but that increases my need to monitor things. At first, she would get on the computer and press buttons and disconnect things like the internet. It took me to a new computer before I realized that she was trying to turn off the red light. Last night before I went to bed, I had a piece of pumpkin bread, and I discovered a piece of plastic in the piece I was eating. The plastic container was broken, and several little pieces entered the bread, and I discovered it before I swallowed it. I hope I got it all. So, my point is that monitoring is a full-time job. I wasn't too concerned about finding the soup and lip stick in the refrigerator every morning, but I have to learn to ask myself, what else. My DW is not aware of any problem and does in the house what she always did it would appear, but it is different. She does what she wants regardless of what I say. This disease is a serious learning process for me, when I think I am getting it, I find out there is a whole lot more to all of it.

Dave

SDianeL

Read the book "The 36 Hour Day" which will explain a lot of behavior. Your DH's "it happens" means he doesn't realize he's supposed to lock the door, doesn't remember whether he locked it or not. 13 months ago I was leaving my DH alone. The nurse did an evaluation of our needs to caregiver support and asked him what would he do if there was a fire in our apartment. He hesitated a long time and said "I guess I would try to put it out" -- later in the conversation the nurse asked again what else would he do. He thought a long time and said nothing. Nothing like get myself out and call 911. He no longer could use the phone. So he cannot be left alone. If your DH is not remembering to lock the door, what else is he forgetting. During my DH's 3 hour memory evaluation done by a Neuro-Psychologist she found he had a visuospatial problem and said he should no longer drive. The only thing I noticed was that he was driving very slowly. He probably could have passed a driving test. She said if he were in an accident, even if it wasn't his fault, we could be sued and because the memory loss diagnosis was in his medical file we could be sued and lose everything. Not worth the risk. Apathy, loss of emotion, inability to reason & loss of sense of humor is common early behaviors of ALZ/Dementia. The reason they don't want to do tasks that we think are simple is because to them they are no longer simple. Taking a shower for example. First they don't recall how long it's been since they last took one and there are many steps involved. I got my DH to shower by saying he was going to shower twice a week on the days we go get him his newspaper. Then on those days, I prepare everything he needs for the shower , towel, body wash, wash cloths, even turned the water on the first few times, and tell him it's ready whenever he wants to take it. No more arguing. Your DH may be physically able but no longer mentally able to do the tasks he has always done. We haven't gone out to eat in 2 years because the menu was too overwhelming, he lost his appetite for some foods. Learn everything you can. It will help you understand him and cope. Such a terrifying & heartbreaking disease.

Terri 2.0

I’ll try to answer as many of your questions as I can.

DH is 69; he retired in 2010 when he had a stroke, and could no longer perform his job. He was on disability until it switched over to SS.

He worked at the same place as me until April, when he was asked to resign. In the years that we worked there, we never had performance reviews or raises. I didn’t know anything was wrong until after, when I asked to speak to the store manager. He had been warned, but I had no idea. That led to his MCI diagnosis a week later by his PCP, who referred him to the Memory Care Center. It’s not residential, only outpatient. It’s staffed with a large group of geriatricians who specialize only in dementia. His PCP has full access to all of his medical records, but isn’t involved in treating DH for AD.

I had a conversation with his geriatrician, and she decided to increase his Sertraline. She echoed what many of you said; he’s exhausted from show timing. We see her again the end of September.

Now he works for a long time friend of his at a warehouse club. He worked there before, until the pandemic. Now he’s there doing the same job, and his friend says that he’s doing fine. It’s part time, no benefits to lose if something were to happen. His friend has his back, and it’s going well.

I do read, a lot. I’ve read The 36 Hour Day, and re-read several chapters. I check in here almost every day and read. I’ve read a couple of other books recommended here. And I attended the full 6 week session of Caregiver College, offered by the MCC. I feel like I’m on information overload, and I need to let it settle in my brain.

I’m the problem. I keep “forgetting” that his brain is damaged. I have the knowledge but I’m not applying it. Unless I really focus on what I’ve learned, I forget why he’s being the way he is. The only thing that I seem to consistently remember is to not argue, confront, say “remember”, or ask him to do things that I know he can’t do anymore. He had anger issues before, has them now, so I’m pretty schooled in not provoking him.

Any suggestions on how to “retrain my brain” to use the new knowledge I have consistently?

Iris L.

Do you or he have a Bucket List? Now could be a good time to work on it, if you can manage it.

Iris

ThisLife

You seem to have the communication basics down. Next might be looking at the situation through a different lens. You are the only "adult" and are on your own. Expectations are everything. You know this cognitively. But how should it drive what needs to be done. I ask myself if something really needs to be done. Simplify meals. Remove items to make cleaning easier? I'm a clean freak, so I've had to reduce my standards. Ordering food/household items delivered? Develop the mindset that there is only you to do tasks.