Social anxiety

Luciagh1

Hi all. This is my first post but have read your helpful posts many times!  My DH was diagnosed with MCI several years ago and had a CSF in April which showed bio markers for AD.  We have learned to deal with many challenges but this one has me stumped. Any time there is a family gathering, DH gets extremely agitated, annoyed and angry prior to and during the event. The stress I experience trying to manage this is incredible. If I go without him he is angry as well. It really is getting worse and don’t really know how to effectively manage. During Covid we didn’t have many social engagements so this behavior now seems more intense than before. Help me figure if this is typical and how best to deal with it. Thanks!

Rescue mom

I think this is pretty typical, not everybody, but many. Crowds —even family and friends—get loud, move around, the PWD can’t keep up with conversations, etc., and get  uncomfortable or stressed. Solutions depend on the person and situation, but With my DH, who was Mr. Social Party Chairman until Alzheimer’s… 

He always *said* he wanted to go to any gathering. He’d last maybe 20-30 minutes, then start trying to get away and go home. “Why did you make me come here” on repeat, even though he insisted to go.. He obviously did not enjoy it.

So we don’t go out t like before, which is what I hear from almost every caregiver in support groups.  We go only in certain circumstances: small (usually) groups, everybody knows he has Alzheimer’s and will accommodate him: not crowding him, not having 2-3 people talking at him at once, no “do you remember..” questions,  and the understanding that we will likely leave very soon, and fast (no extended goodbyes).  

I also  go without him. He will be sulky or angry when I leave (even though he does not want to go), and when I get back. The good news is that he forgets the whole thing in maybe an hour, usually less. If I didn’t get out, I’d be crazier than I am now.

And people/family can and do come here. He deals much better at home, but will still leave  after about 10-15 minutes. 

harshedbuzz

Lucia-

I don't know if it's typical, but we experienced this with my dad. Dad was a very social creature and life-of-the-party well into the midstages of dementia. Onset of this issue seemed sudden-- he was fine with his birthday dinner at a favorite restaurant with 6 people in July. He was edgy at Thanksgiving (6 adults in my house) and a little better at Christmas (DS was sick, so DH and I brought dinner to my parents' apartment). By February we did dinner out for mom's birthday and he was agitated and spent the meal excoriating me for not inviting his brother. We never took him out socially again. 

HB

Iris L.

Yes, this is common.  I experience this, even though I don't have AD.  I won't tell you what I think about dragging PWDs to outings because it would upset some people.

Iris L.

sandwichone123

This is typical, and I suggest not telling him about these events, but making arrangements to go yourself. My term for any outing is "errands." So you have a picnic coming up, "Betty, the aid is coming Sunday afternoon so I can run some errands." Or if he'd have to come along, don't tell him at all ahead of time.

MaryG123

Your choice of words indicates your disapproval Iris, so you might just as well say what you mean.

Iris L.

MaryG, some caregivers don't like to hear input from a patient's perspective, so I am learning to keep some of my opinions to myself.  But social anxiety is real.  And can be toxic.

Iris

Dio

Hi Iris, it may be helpful for some of us to hear from the PWD's perspective. We're trying to get into the PWD's mind/reality so that we may better understand what they are dealing with. However, if you prefer not to, that's OK, too.

In my situation, DH would show excitement in anticipation of a social event, and often in the middle of the night talk about what to wear, what to talk about, how to act, etc. Then came the drive to the destination, and he would 9 times out of ten be full of anxiety, and nonstop say "turn around" "make a u-turn right here" "let's go back" "I'm not ready" "can I take a pass?" I've learned to ignore these pleas, because every time after the event, he'd say what a great time he had and that we should get together with so-and-so more often. I figured that he must be extremely afraid of being judged, and that he wouldn't know how to carry a "normal conversation," because of his memory deficit. So sad.

We go through this whenever there's a social event, big or small. And sometimes, out of the blue, he'd lament "am I never going to see our family (relatives) again?" When I asked why he'd think that, he'd respond with, "we haven't seen them for a long while." Not true. He just couldn't remember and timeline in his world is very muddled. So I can only conclude that he does want to engage but is afraid to.

Pat6177

Hi Luciagh1, about a year before my DH was diagnosed with mixed dementia (AD and VD), we went to a family event (my family). We currently live in AZ and most of my family is in VT. DH has spent a lot of time with my family over the years. There was a party at my sister’s house with maybe 25 people there. Though I knew DH was having some symptoms I didn’t realize how far things had progressed. Two things happened that hit me really hard. After the party, when we were back at the hotel, DH said to me that he wished I had introduced him to the people there. Almost all of the people were my family members that he knew. The other thing was when I looked through pictures from the party that my BIL had shared and there was a picture of DH looking so bewildered. My heart ached for him. He’s never been a real social person and now with dementia, it just drains him. The only social encounters he agrees to now are seeing a couple of neighbors that I am very friendly with. He knows that we 3 women talk so much that he doesn’t have to say anything tho he does manage to follow the conversation enough to make the occasional witty comment. And, interestingly, the other person he enjoys visiting is a neighbor who went into AL last Dec. and has dementia. The two of them enjoy bantering and don’t seem to notice the repetition. 

Now, 2 years after diagnosis, we don’t go back to the east coast for any family events. DH has never been a good traveler and I’m concerned about the regression that many people see when they travel with a PWD. I get my social interaction by having lunch with my women friends - without DH. This is something I have done all of our married life so it’s very natural for us.

I realize that my situation is different from yours. Maybe you could not tell your DH about upcoming social gatherings so that you could attend without him?

Kibbee

I stopped taking DH to social gatherings outside our home a few years ago.  Mobility was an issue, and unfamiliar places, large groups and fast-paced conversational twists and turns were not enjoyable for him.  I now hire a caregiver and go to these kinds of social gatherings on my own.

We still have friends who come to our home.  DH enjoys the activity but can retire to his room if he wants a break.  My friends know this about him so are not taken aback.  They also know that one-on-one conversations work best for DH and they make an effort to communicate with him that way.  

Rescue mom

I should have said this in my earlier post, now others remind me…

When I go without DH now (which is pretty much what happens now), I do not tell him in advance. He just frets and agitates, then forgets anyway. When I walk out the door, I usually tell him it’s for errands or doctor. Otherwise, he starts imagining all kinds of bad/weird things.

Kind of funny, even when I’m gone a few days (he’s ok once I’m out the door) he occasionally tells his minders “she went for groceries.” 

Just Bill

My wife has trouble in social situations. She is out of synchronization with time/place /event and will say things that do not make sense or fit the situation. She can however still pick up body language and emotions. She can feel the the uncomfortable silence and see the facial expressions that put in her in a stressful situation. As if she is thinking alright everyone is waiting for me to make sense and I have nothing. The problem is she used to be very gregarious and social, so she sees people engaged in conversation and wants to participate but just doesn't have the tools anymore. Consequently she talks very low volume and mumbles a lot. She gets very nervous and self conscience in social situations because communication skills are gone but her emotions are all still there. Luckily I am anti social and love rattling around the house in my down time. I loved being locked down during the pandemic. I was practicing social distancing long before it was popular. This another extension of that for me.

nancyj194

As with so many here, my DH is much the same in social situations.  

With our family, things go mostly okay.  When visiting our son and daughter in law's home, it sometimes includes her family. They all know my DH has Alzheimer's and are kind/gentle towards my husband. It is quite nice they have adjusted to being around someone with advancing Alzheimer's.  

At our son's recent wedding, we stood up with our son and during the ceremony, DH asked why we were standing there. I quietly said the wedding ceremony wasn't quite over with and that satisfied him. 

Like JustBill, I could have written what he said almost word for word.  When the Covid lockdown came, I was perfectly happy not going anywhere.  It was a peaceful time for me. 

Iris L.

Dio, I can identify with everything your DH experiences.  Except that I am wanting to go out less and less.  I don't recognize people. An example: I attended a friend's house party.  I've known her and all her family and her friends for years.  Of course, now the children are adults.  I asked a young man who was talking with my friend's daughter, if he liked visiting, because I thought he was her out-of-state husband.  It turns out, that was her brother and I knew him growing up.  I felt embarrassed.  I tried to make conversation with people but I really had nothing to say.  I didn't like to eat and run, but I left as soon as I could, whereas before, I would stay all day.  All in all, it was stressful, both days before and days after.  Yes, I have social anxiety due to not recognizing people and having nothing to say because I don't keep up with current events nor do I remember people's family events.

Iris

Luciagh1

Thanks all for your input and views from many perspectives. Once we got to the party all went well and DH was very engaged and stated later how much fun he had. My goal is to minimize his agitation. It’s all a roller coaster- but each day I learn something new!

Dio

Iris L. wrote:

Dio, I can identify with everything your DH experiences.  Except that I am wanting to go out less and less.  I don't recognize people. An example: I attended a friend's house party.  I've known her and all her family and her friends for years.  Of course, now the children are adults.  I asked a young man who was talking with my friend's daughter, if he liked visiting, because I thought he was her out-of-state husband.  It turns out, that was her brother and I knew him growing up.  I felt embarrassed.  I tried to make conversation with people but I really had nothing to say.  I didn't like to eat and run, but I left as soon as I could, whereas before, I would stay all day.  All in all, it was stressful, both days before and days after.  Yes, I have social anxiety due to not recognizing people and having nothing to say because I don't keep up with current events nor do I remember people's family events.

Iris

Iris, I'm so sorry you're going through this. (((Hugs))) Thanks for sharing!

I will continue to monitor my DH's mood and anxieties. Hopefully, I can accurately gauge whether he truly doesn't want to socialize or is simply experiencing pre-event nerves. As long as he can enjoy and acknowledge having a good time after the event, I will make these social gatherings happen for him. One of his best friends is taking him on a 6-day short distance trip to give me some respite. Fingers-crossed DH will enjoy the getaway, especially since it's to his favorite childhood place.

Dio

Luciagh1 wrote:

Thanks all for your input and views from many perspectives. Once we got to the party all went well and DH was very engaged and stated later how much fun he had. My goal is to minimize his agitation. It’s all a roller coaster- but each day I learn something new!

Sounds like my DH. I will continue to gauge when his mood changes, or not, and adjust accordingly.

Iris L.

Dio, one-on-one interaction is great.  Your DH will probably enjoy the getaway if he does not have too much stress put upon him.  I enjoyed traveling with a travel group because all the decisions were made for me, and I had no responsibilities other than to show up on time.  I could do that.  Please let me know how he enjoyed the trip.

Iris

CStrope

I agree with so many of these responses.  I'd like to add that I believe my DH recognizes that he has "limitations"  especially when it comes to conversations, therefore he is embarrassed in public situations.  He does not comprehend what is wrong with him, but he gets extremely frustrated that he can't find words and can't carry on a normal conversation. Even when our adult daughter comes home to visit, he will often go into the bedroom and just hide out.

HollyBerry

Everyone's comments and insights are incredibly helpful!! Thanks!! This has been on my mind a lot lately and this discussion was just what I needed.

Anna2022

Please, what is a CSF?

Dio

Iris L. wrote:

Dio, one-on-one interaction is great.  Your DH will probably enjoy the getaway if he does not have too much stress put upon him.  I enjoyed traveling with a travel group because all the decisions were made for me, and I had no responsibilities other than to show up on time.  I could do that.  Please let me know how he enjoyed the trip.

Iris

Iris, DH almost didn't go on the trip. He got cold feet the day prior. I didn't antagonize him and just let him be. He stopped talking about it late afternoon, so I kept quiet as well. When he woke up next day, he didn't mention the trip until he saw it marked on the calendar, then came running up the stairs to ask, "Is this the day of the trip with Henry? For real? I haven't packed!" I quickly took on the role of the dutiful wife and said, "no worries. I can pack and get you ready in no time." When his friend showed up at the door to pick him up, he didn't want to go. Thankfully, between his friend's encouragement and my cooing, we slowly but steadily guided him out the door with his packed bag. I was definitely relieved to see them take off.

Sadly though, the next day he had a meltdown inside Monterey Aquarium (still a mystery as to what triggered it), but the staff handled the situation professionally, took him to a room in a wheelchair to get him calmed down, and gave them all ticket refunds. After taking a 5mg Valium, DH calmed down but couldn't articulate what caused his panic/anger. They returned to the aquarium the next day and finished the visit. According to Henry's account, they really enjoyed the aquarium, for it was Henry's first visit, and DH was enthusiastically providing ad-lib info on some of the salt water fish. (DH owns a 72-gallon salt water tank.)

During this 6-day getaway, DH had a couple more agitated moments and nonstop looping but were all handled by his friend, which saved me from having to go there to pickup my DH. I spoke to DH on the 4th night and he said he was having a good time and that his friend (and sister) were taking very good care of him. His friend reported that he got increasingly disoriented and agitated on the ride home, looping about no one home to open the door since he didn't bring his keys. I think his friend finally got a chance to see upfront how "serious" my DH's condition has become.

DH is home now, and after checking out all the essentials, he calmed down but continued to loop about different topics. Anyhow, I am eternally grateful to our dear friend and his sister who went out of their way to take my DH on this trip with them to allow me some respite and opportunity to recharge! (Oh boy, did I need it; for I was on the brink of collapse.)

Iris L.

Dio, I'm glad everyone got something positive out of the trip.  Even if your DH forgets that he went on the trip, he did enjoy himself while he was away.  The friends enjoyed being away and enjoyed his company.  You got respite.  Even the Aquarium got to use their difficult guest skills.  

As for triggers, too much going on at once can be a trigger, despite him having a fish tank at home.  Travel involves lots of "stuff" going on and involves a lot for a failing brain to process.

Iris

Tastiger

Luciagh1 wrote:

Hi all. This is my first post but have read your helpful posts many times!  My DH was diagnosed with MCI several years ago and had a CSF in April which showed bio markers for AD.  We have learned to deal with many challenges but this one has me stumped. Any time there is a family gathering, DH gets extremely agitated, annoyed and angry prior to and during the event. The stress I experience trying to manage this is incredible. If I go without him he is angry as well. It really is getting worse and don’t really know how to effectively manage. During Covid we didn’t have many social engagements so this behavior now seems more intense than before. Help me figure if this is typical and how best to deal with it. Thanks!

It is very important that your DH not become isolated from other people.

What is it that makes him angry about family gatherings?

Is it because he doesn't like someone there in particular?

Is it that he doesn't like the place he is being taken to?

Is it because he gets ignored by others while he is there because he has AD?

Find the reason and the problem is solved.

Joydean

My dh likes going out to eat but only at this one little dinner. The waitress knows him and always treats him with respect. They know what he wants to eat and brings his coke to him as soon as we sit down. He enjoys watching people just not having to enter act with them. So that’s our outings. He loves it when our kids come over , they talk slowly and directly to him. He has a very hard time trying to get any words out and they are very patient with him and just act like it’s no big deal. He mostly tries to listen. He cry’s when they leave, but later will tell me he had no clue what anyone was talking about. But he so love’s them being here with him.  A few weeks ago our son took dh fishing which is something they used to do a lot, dh was okay but said being in the boat was scary. Son picked up it very quickly and they came back to ramp and just fished off the pier. I guess you just have to be very diligent in watching all their expressions to know how to proceed. Best of luck.

Iris L.

It's very scary being in a dependent position around people who cannot or will not interpret one's non-verbal communication.  I am not a true PWD but, with my memory deficits and other issues, I think it is better for me to be alone than to be mischaracterized as a b**** because I no longer function like everyone else, even though I don't like being alone.

Iris