Advice Needed - Agitated Behavior?

LindaLouise

So - Easter and grandkids hunting through the house for eggs seemed so set off my DH. He walked out the door and I followed him, with him saying things like these people in the house are taking everything, I have nothing left, etc. Fortunately, my kids were with their children happily playing and I was outside, trying to convince DH to come back in the house. Finally, after about 45 minutes, he calmed down and came back in, though still seemed upset for a couple of hours. So my question is - while I was out trying to convince him to return inside, what if I couldn't have done it? I've been trying to come up with a plan for if this happens again, and wondered if any of you could give me some advice? Calling 911 seemed a bit over the top, and yet, if I couldn't convince him to return, then what? Thanks for any advice you have for me!

jfkoc

It was too much for your husband and his home needs to be where he is comfortable.

It is a part of the illness…over stimulation. All you can do is to recognize this and plan accordingly in the future.

I know this will be sad and hard for you to do.

Next get together might be at one of your children's homes and you can leave when your husband needs to.

LaneyG

SSHarkey

My first thought was that your entire family was there. All the help in the world! This is a family disease. It impacts everyone. I don’t know how much you’ve included your children in on his care. Maybe this was a call to action. You need to be able to lean on them. I do agree that it was too stimulating for him. Once he’s delusional, the goal will need to be routine and “normalcy “ as much as possible. As for calling 911, if you’re at a point you’re feeling threatened, then yes. But think about this and have a plan. Do read up on how to de-escalate behaviors. The more you know, the more you’ll be ready.

LindaLouise

Good points about too much stimulation - on reflection, have seen similar behavior after Christmas morning and on a trip to AZ. We also had a new granddaughter born this week and spent time the new baby about an hour away, and our daughter was going through mediation due to a divorce. Life was very intense this week. Daily routines seem fine, with only occasional delusions, so definitely could have been the result of today piled on top of the whole week. I do think it was good for my kids to see the behavior that can arise with this terrible disease - my kids are young parents and not ready to accept the realities, but are very supportive. My DIL already volunteered to host the next gatherings and the grandkids (10, 8, 7, 6) gave extra hugs and said they understand a little more about what is happening. All very sad, but it is a family disease and better to be there together that trying to cover up and present a false "front" to them.

So grateful to have this place to ask questions and know you all understand!

Beachfan

Linda Louise,

I agree 100% with jfkoc. I remember vividly the family get togethers that became overwhelming for DH as he progressed. There were many times I would just beg off; it was easier to keep him at home where he was comfortable and quiet and forego the family chaos. Ironically, that was the catalyst for his permanent MC placement. My kids ganged up on me and made me realize how much of life I was missing; they felt they were losing both parents/grandparents. (Placement was made easier since DH no longer recognized any of us.) He was in a MCF for 17 months prior to his passing.
Fast forward to yesterday, Easter Sunday. The kids and grands were all together. The “egg hunt” was a wild melee; there was entirely too much food, noise and wine. It was a fun day and as much as I miss DH and recall all the years of wonderful family get togethers, once he was steeped in Alz., it was no longer carefree and enjoyable. I am sorry you find yourself in this situation; I remember those days with sadness. Wishing you brighter days ahead.

LJCHR

We are a big Italian family where big family gatherings were all the time. The big crowds were too overwhelming for him so we have had to cut back to one or two family members at a time.

We keep it calm and peaceful and he enjoys it. We do see them often but in small gatherings.

This works for our situation - but it is hard not to have the whole family together for holidays.

Good luck to you on finding the best format that works for you and family. It’s tough!

harshedbuzz

@LindaLouise

Sadly, this goes with the territory. Over time, PWD will start to struggle with larger gatherings. In the space of 3 years dad went from enjoying an 80th birthday party for 40 to enjoying at table of 6 in a quiet restaurant during off-hours with his brother 100% focused on him. A year later, 6 people— all adults in his own home— were more than he could manage. He reacted with agitation and insults and finally retreated to his bedroom. After that, we celebrated with mom elsewhere on a day when she had an aide for dad at home.

I am sorry this happened. Young children can be irritating to some PWD. Because memory tends to be lost in a LIFO manner, a PWD may not recognize their own grandchildren and in-laws once their mind has traveled back to a time when they're asking about long dead relatives. They may not recognize their own adult children. Dad remembered mom and me to the end, but he was hazy on my husband of 35 years. My dear aunt with dementia, always thought I was my mom when I visited. While there was a strong resemblance, my mom was usually with me and would be left out of the conversation.

Another thing that can happen is that a PWD can become loath to "share" their caregiver with others. A number of posters here have had situations in which their PWD was unkind to a young child who distracted "their" person. One woman even reported her mom spraying the poster's preschool-aged granddaughter with water thinking it was Raid. My dad wasn't quite this bad, but he did interrupt mom and me constantly with requests if we went into another room to talk.

HB

MN Chickadee

Holiday celebrations became really hard for my mother, especially the kids. Kids are loud and excited and that was way too much stimulation for her and she found their exuberance off putting; she couldn't track what they were doing. She had always been the cook and hostess in the family and Alz made her just anxious and fret about what was being cooked and served but she couldn't actually do it anymore. Lots of anxiety, pacing, hand wringing on the holidays. We had to scale things way back for her. Small short quiet gatherings with her, and unfortunately separate ones for the "real deal." Once she moved to memory care we just visited for a short time on the holiday and did the normal routine without her. Her presence was greatly missed and holidays never felt the same again, but it just wasn't fair to intentionally put her in situations that were obviously hard on her. She had been an elementary school teacher and loved kids, but Alz took that from her and we had to be very careful how she mixed with the grandkids.

For getting your husband out of his loop in such a situation, think about what could be a reset button. Maybe go for a drive around the block? A walk until he forgets? Offer a treat he likes to eat? Sit him in a chair and rub his back a bit? The key is often to validate the feeling that started it, say you understand you are on his side etc and pivot off it to something else.

DTSbuddy

Thank you for these comments. I thought that having family members visit us would cheer him up and entertain him. They cheer me up!! But he was sullen after the visit, and a couple days later. I was paying attention and talking to other people. Imprisoned in his nearly wordless mind, he needs focused attention on him, like he got when he was little. I thought he seemed a bit jealous of the attention to the baby, but didn't believe it. Thank you LJCHR and Harshedbuzz for sharing your experiences..

LindaLouise

Thank you all for your words of wisdom. Your support means the world - I don't know what I'd do without all of you and knowing there is a place to go for help. I feel like I understand much better what happened, and can work in the future to avoid similar situations. It is so sad as my family is what keeps me going and having to limit my interactions breaks my heart. This disease takes away so much that is sweet in life - I don't think I quite understood the full impact of how it would change everything. Dealing with anger from my DH when I spend all my waking (and should be sleeping!) hours caring for him requires patience I didn't possess before and I just hope it doesn't run out! Bless you all and thank you for taking the time to share and care!

LJCHR

https://alzconnected.org/discussion/comment/204500#Comment_204500

I have learned patience I never knew I had. Just remember they are sick and can’t help what they do.

It takes everything we have to go from minute to minute but somehow we do it.

Take care

housefinch

1 last comment—-my stepdad also became agitated by having houseguests for Christmas, a formal Christmas dinner with several courses and 12 + people total, etc, which my mom has always hosted and didn’t think to change when he developed dementia. My stepdad was apparently complaining loudly, yelling at my sisters (40-something’s), etc, and asking my mom in a stage whisper in front of my sister when my sister was flying home. It’s unclear how well he recognized everyone the whole time. My mom blames my sisters for antagonizing him, instead of examining her own choices in planning everything. (This is NOT to blame you!) 18 months later, he has progressed in the disease and I don’t even think he would care if a large group came over. My mom insists he is still capable of making small talk etc. I have observed otherwise and am only posting to say that, with progression, things have become smoother (and for people who aren’t taxing his cognitive skills, they don’t necessarily notice his deficits).

mrahope

I would agree with the suggestions you've gotten to try and calm agitation by avoiding the triggering situations (strange places, too much stimulation, etc.). And I would for sure ask for help from family members if they are on scene and willing (or within easy reach). They need to know, and sometimes the PWD will listen/behave with others better than they will for the primary caregiver. It worked that way for us.

FTDCaregiver1

Speaking from the point of crisis intervention to deflect agitation and get things in hand first before you can get them where you need them to go. Redirection, redirection, redirection works. DW has severe agitation, in these past years she's tried to jump out of the car, screaming in public I was trying to kill her, panicked while walking and refused to return home. Find out what works for you, for me I got a Spodify account on my Iphone, so sometimes low calm music would get her attention, food/snacks to redirect her focus, coescalating by matching her intensity in positive ways like when shes yelling, make eye contact and loudly say nice words "your so nice, wow look at the kitty", passive contact such as circling around while being calm to block them from eloping while offering snacks. Its a dance, so you'll have to learn what works for you.