DH seems fine with everyone but me

jsps139_

My DH is starting his 10th year since Alz diagnosis. He exercised daily and ate healthy during the last 10 years and did exceptionally well. But he is declining now. He worries constantly about where his SS ck is … is our furniture paid for? … where do I live (we’ve been married 31 yrs) …. He thinks we just moved into this retirement community last week (it’s been over 3 yrs) and on, and on for hours each day. But, when his brother calls, or when he sees someone outside (even his doctor), he acts perfectly normal. People question whether he has Alzheimer’s. If they could only follow us around for 24 hours, they would not doubt it.

I am very happy that he does act normal with his family and others, but it is confusing. Does anyone else experience this?

Jeanne C.

My husband "showtimes" for others. He certainly still appears to have dementia, but I frequently hear "he doesn't seem too bad" from those who don't see him regularly. He has some cognitive reserve and can work hard to cut through the confusion. It exhausts him and he can't do it for long. With me, he is his usual self. I get the anger, confusion, anxiety, etc., full force. It's not deliberate. I think it's because I'm his person and, on a deep level, he knows he's safe. I've been seeing the showtiming decrease with other people he sees regularly (daycare staff, home health aide, and family he sees frequently). In a weird way it's a compliment to you.

Hang in there.

LaneyG

Yep! Sometimes I worry that people think I’m making this all up. Jeanne I get the same comments from people. I like your perspective on it.

ThisLife

Also 10 years since diagnosis. Until about a year ago I got the comments that he doesn't seem that bad and casual encounters didn't raise red flags. For years I was concerned that others thought I was exaggerating, too. I often thought if they could spend 24 hours with us. I chalk up others' perceptions to the expectation of what a person with dementia looks like is late Stage 6 to stage 7. There is no understanding of the years of deficits that occur before. Many retain superficial conversational skills well into the disease which is not understood. My H was also exhausted after an outing/interaction.

jsps139_

I am soooo grateful for your comments! I feel like a weight is lifted off my shoulders knowing that others have the same experience. My husband and I moved my mother into our home the last five years of her life (she had Alzheimers). She passed away in December 2014 and my husband was diagnosed with Alzheimers in January 2015. So, I have been living with someone 24/7 with Alzheimers for the last 15yrs. I wish I would have searched for this site many years ago, but I’m so grateful that I did now. Thanks for taking the time to comment.

TerrificWeber

Oh yes I can relate. He seems to put on a good show & shows no anger signs around other people. They can be gone from our house literally 10 minutes and the anger starts. Painful to be the one dealing with the anger.

mommafour

"Yes" to all of this - the same questions! I know it's exhausting! I had to pull up our bank acct online to prove to him his SS check was direct deposited, then face the same questions minutes later. Every day!!!!! He finally got past the constant questioning. He does still occasionally ask if I live with him (we've also been married 31 years). The good side of that question is that he has proposed to me several times over the past couple of years, so I know he still loves me!

We have both been married previously and have a blended family of several kids/grandkids. I try to keep (most) of my step-kids updated on his status but I worry they may think I am being overly dramatic. When he does see them he has been able to "showtime" as you have described. I think they are starting to see the "real" DH lately because he is now losing his communication skills and is mostly difficult to understand. They have also commented on how quiet he is during visits, which is a huge change for him. The ability to act normal around others has finally faded for my DH.

Nowhere

My husband is entering his 17th year with Alzheimer’s and he could easily walk out of his mcf mistakingly thought of as visitor. His please and thank you’s and social graces are intact. He doesn’t generate conversations, but will smile and nod and say yes or no answers. I think he’s afraid to show he is lost and afraid. The part of his brain that handles pride or hides vulnerability is very much intact. He has no idea where he is or why, and asks no one, but me. He hid well his disease so much so that when I placed him, some thought it was way too soon. It wasn’t. I probably shouldn’t say he hid his disease because he never thought he had Alzheimer’s. His brain can’t see it. No, he hid his shortcomings. He knew something was wrong, and in the middle stages it only made sense to him that I must be poisoning him. I couldn’t continue to hold us both up through that challenging stage. He’s still walking and talking in advanced dementia and sad to say, it’s the easiest stage because he cannot think. He’s running on automatic through branches of broken dendrites. I do believe, however, he experiences beauty in nature and when he sees me he expresses joy evidenced by a big hug and smile.

jusjones53

This is useful to hear. My husband has the "3 i's" -- impatience, irritability, & impulsiveness. The anger manifests when I try to re-direct him from a poor choice. He, too, puts on a good show with our adult daughter but has no social restraints with unknown parties. I fear someone will harm him for his socially unacceptable behavior! He has no guard rails. He is 73 & been diagnosed for 1 1/2 years. It is still new for us although he has probably had this for 3+ years. We have tiles in his wallet as he is prone to storm out of the apartment (& if he remembers to take it with him). He does not have car keys. But, he does not know where he is most of the time. Our daughter & I are trying to determine the triggers -- but nothing has been reliably identified.

SDianeL

https://alzconnected.org/discussion/comment/217278#Comment_217278

he doesn’t know what poor choices are. His reasoner is broken. If he doesn’t know where he is he shouldn’t be leaving by himself. He could get hurt. The book “The 36 Hour Day” really helped me.

Grandot

https://alzconnected.org/discussion/67897/dh-seems-fine-with-everyone-but-me

https://alzconnected.org/discussion/67897/dh-seems-fine-with-everyone-but-me

I’m sorry you are experiencing this but am thankful to hear someone else is experiencing this. My DH does the same. With other family or friends he seems perfectly normal but with me he constantly makes the same comments, asks the same questions, cannot find anything or make a decision, shadows me and more. When asked how he is doing I’ve started saying he is fine. I think one of the things that bothers me the most is that he doesn’t put up anything so when he can’t find something, he blames me. It’s hard not to be defensive.

harshedbuzz

@jsps139_

Showtiming is very common. It can be frustrating for the caregiver because it can undermine their reputation as an accurate reporter with family and professionals which can leave the caregiver without support.

Dad could do this like there was an Oscar up for grabs. Normally this was just kind of annoying, but it can be a problem if you're seeking medication to tamp down aggression from the geripsych and dad's all sweetness and light. I got around this by making a short video clip of dad acting out and emailed it to the doctor. It got us the meds he needed.

HB

ronda b

https://alzconnected.org/discussion/comment/195626#Comment_195626

Thank all of you for your answers. My Dh does the same thing,show timing

I feel the same way. He is at his best around other people. They never see the anxiety or short aggressive behavior, verbal,.

Lkrielow99

thank you all for this insight. My DH showtimes also. In my mind, I’m thinking “you missed the hour trying to dress himself in the wrong order.” Thanks for all the responses. Jeannie, what a great insight.

Jazzma

When my DH and I re-did our will 4 years after his diagnosis (at least 8 years into symptoms) the lawyer told me that I was jumping the gun trying to get Power of Attorney, even though I had a letter from his doctor backing me up. The audacity. I carry business cards with me (printed on a home printer) that say 'The person I am with has dementia. Please be patient and kind. His name is _______.' It's very helpful in restaurants or other places where he is interacting with people he doesn't know.

Lgb35

we are in the earlier stages where I see things all the time. Not knowing the right words or the name of objects and what they are used for. Our youngest son is here from out of state. He said he has been testing his dad and he seems ok. Like he has mentioned something to him then brings it up later to his dad. What he doesn’t know is if his dad doesn’t know something or can’t remember he becomes quiet. DH doesn’t do that with me. So yes they are very good at show timing

DTSbuddy

Here is what is confusing. My DH is doing things that would embarass me now, if someone else saw, so we very rarely go out or invite guests to eat with us. He spits out food that is too tough, blows his nose in his napkin, eats with knife, or fingers, spills food when he eats, unscrews the salt shaker, tried to eat out of the serving dish or my plate, throws pits and cores on the counters or out the window. If they know enough to behave when there is someone to showtime for, then when they relax into inappropriate behavior, do they know they are misbehaving? I do not criticize, or in any way discuss these aberrations from what used to be impeccable table manners. I just smile and clean it up, and try to provide food that is easy to eat. Maybe I'll try inviting people, and see if his manners improve….

fmb

@DTSbuddy

Showtiming requires a great deal of mental energy and is something that is physically unstainable for more than a short period of time. Yes, the knowledge of proper table manners is in his memory somewhere, but he is unable to call it up on a regular basis. He isn't deliberately misbehaving. My DH does a lot of the same things you described. I determined that table manners are not the hill I want to die on and just clean up the mess and move on.

emilymcgwv

Thank you for that term- "showtiming". I'm an "adult child" of a mother with dementia- she showtimes with everyone other than my dad and me (we're her caregivers). She does it with my brother who lives out of the area, and as frustrating as that is, he luckily sees through it and knows to get credible info from me.
One thing that's incredibly difficult is that she always does it with doctors and other medical professionals, and sometimes they can't see through it and/or they have a hard time taking my dad's or my word for it when we describe what's really happening. She's done this for her entire life to "keep up appearances", but now it has health ramifications if she's doing it with some of her specialists who aren't as familiar with dementia. Since she still has mental capacity, we're in a weird middle-zone because we can't override her choices, but now she so often lacks the capacity to make good ones. The need for honest info getting to all of her doctors is only going to grow as she ages and as her dementia progresses. Anyone have experience with this?

jsps139_

Yes, my DH was so good at showtiming with his PCP (in a new state that we moved to) that the PCP asked me if my DH ever had testing to confirm an Alzheimer diagnosis. (If course he did!) I could tell he didn’t believe my DH had Alzheimer’s. It was beyond frustrating. I dreaded those trips to the doctor. He would ask how things were going and I started just saying … we’re doing good. However, after 3 yrs of seeing this PCP, my husband progressed to the next stage. I wrote down all of his behaviors and gave it to his nurse while she was weighing my husband. The doctor read my note before he came in the exam room. His whole attitude changed .. he prescribed Seroquel that day, and he was genuinely concerned for me as his caregiver. He told me to take time for myself and have our sons stay with him for awhile every week. He also told me to contact him anytime to discuss his medications.
I thought … FINALLY he believes me! I guess unless a doctor experienced Alzheimer’s with someone close to them, they don’t understand the showtiming part of it. ???

Maru

Just saw your reply from Jan. I have the same feeling….that the kids may think that I am making all this up. I should have more faith in them. Sometimes, even I think that I am making this up. Is dementia a disease that is designed to make the caretaker go crazy, or think that they are?