rough day w dad in MC "Get me out of here!"

jen ht

Hi community,

Dad was pretty agitated today during our visit. Redirecting was not working, so I had to cut my visit short. I'm wondering what I am missing or if you all have more ideas for me to consider. Here's some context plus what I'm seeing lately.

He tells me that he just has to get out of there. Over and over. I have shared here before that I seem to remind him of his life beyond/before memory care. I think when he sees me he thinks I'm going to "spring him" outta there.

We are no longer new to this (Alz, behaviors, MC living)… and yet it still hits me hard. I feel badly when I don't visit and I also feel badly when I do visit but have to leave promptly. Ugh. I've been going during meals when possible to provide a layer of distraction and to have clear reasons to stay in common areas for the visit.

I worry that he may be agitated and planning how to get out of there when I'm not there too. I don't want him to continually struggle with this level of upset and agitation. I guess I have a hard time trusting that "he manages mostly okay" when I'm not there. I wonder if he needs more help via meds for his anxiety and mood. We did try one (seroquel) through his neurologist almost a year ago, but discontinued it on the recommendation of the DoN due to sleepiness.

It is so hard to know what's the right thing to do to support dad and to help him be at least comfortable-ish. I know happiness or contentment is too lofty of a goal, but seeing him suffer like he was today absolutely breaks my heart.

I did message the nurse manager on duty to let her know why I left quickly so they could watch out for possible behaviors. I also asked about revisiting the med conversation. I do see other evidence of decline as well like trouble talking. This is newer for dad and seems to be increasing. He also mostly talks about his dad now. His dad died before I was born. I just go along with it and talk with him about his dad. He gets upset that "Dad won't come get me" too.

Dad is divorced and an only child. I am also an only child. I just get so lost sometimes in what to do and how to be a good advocate for his care. We've always made a pretty good team together, but I feel so out there on my own in trying to navigate this alone since his brain change advanced enough to lead me to MC for him. Ugggghhhh. I haven't cried this much about his care for a while now. So I decided to reach out. Thank you for reading and supporting. I really appreciate you all.

If I am missing something or if something occurs to you that might help, would you please let me know?

Thanks in advance, dear community,

May we be well 💜

Jen

easy23

Hi Jen, I wound up going the meds route for my DH who had agitation and was always looking to "get out of here" no matter where he was. He takes risperidone, depakote and Zoloft. I know that if he were in his right mind and knew what was happening to him, he would want to be medicated. He is much calmer on the three meds and the staff at the SNF has no complaints with him.

I hope this helps. Good luck, it's so difficult!

Quilting brings calm

You might just have to deal with the sleepiness if the medication. was helping - sleepiness might just be a temporary side affect as he gets adjusted. There are other medications too.

Sometimes it’s just stubbornness or denial that they need help. My step-dad was sure he could take care of himself and mom in a house the entire 4.5 years he was in AL with mom before he passed. I finally just let him bluster and ignored it and redirected

ARIL

This is so hard, and painful for you, I know. My dad almost always greets me with “When am I going home?” Although I have come to see that “home” means different things to him at different times, it is still hard to zero in on whatever it might mean that day, that time.

I too am an only child, and I too am hearing and talking a lot about my grandfather, who died long before I was born. It seems that a lot of this is ordinary disease progression—which doesn’t make it any easier when you’re the one witnessing it!

It does sound as though revisiting the medication question would be a good idea. And some people learn to work effectively with fibs: When the doctor says you can go, we’ll go. Or: You can go next week… (assuming this will not be remembered). If the goal is to provide reassurance and comfort, sometimes agreeing is a tactic.

What works (in the non-pharmaceutical realm) varies by individual. I have had some success with roughly true things that kick the can down the road: “Well, you pay by the month, and you’ve already paid up for the whole month. So we can figure something out later about next month.” Or sometimes: “It’s 20 degrees outside. You’ll want to wait until it’s warmer.”

Thinking of you. Right there with you!

SDianeL

wanting to go home is common with PWDs. To them, home is a feeling, not a place. Many PWDs who are still living in the home they have lived in for decades tell their caregiver they want to go home. Your Dad may be thinking of his childhood home, given that he’s talking about his Dad. Try asking him to tell you more about his Dad. If he asks why his Dad doesn’t come take him home tell him a fib. His Dad is out of the state or will come soon. Your Dad probably won’t remember your answer. You will have this question to answer many times at each visit. The goal is to keep him safe, not happy. Most PWDs are not happy. They are anxious, agitated, confused. I also would ask the nurse about medication to calm him. Maybe a lower dose at first until he gets used to it. Search online for caregiving videos by Teepa Snow and Tam Cummings specific to wanting to go home. They may help. Hugs. 💜

pamu

My mom has been in MC for three months and she asks every day when she's "moving". She was completely miserable for the first month and a half. She was exit seeking when she first arrived there but has not tried to leave in two months. Our visits were VERY short due to her agitation and it was difficult. Her geri-psych prescribed additional meds for depression/anxiety. Mom is now on Venlafaxine 150mg and Remeron 75mg (also had Ativan as needed if she is having a difficult day). We've seen much improvement in her mood since the new meds were introduced but she still asks every time I see her when she's able to "move out". We do our best to let her know that she's still part of our lives…we bring her treats and things she requests, do her weekly laundry (she doesn't want the MC to do it) and go for "walks". I still deal with the guilt of her being in MC and wanting to leave but I tell myself I'm still taking care of her…just differently.

jen ht

Dad has been there for a year plus about 4 months.

Yesterday felt different to me. More urgent and escalated. It was not like the earlier on "go home"…this was like a "climbing the walls" and exclaiming get me out of here. Like as in anywhere but here (not necessarily "home")

Totally with you all on the fibs and agreeing and asking more about his dad. We for sure do that. There was no redirecting him yesterday with any of those old/usual tricks. He even said "Well, I can tell that you are not having near as difficult of a time as I am"

When he stood up and said "let's go before they catch us" and started talking about finding a weapon (rural, farming upbringing meant that they were around as he grew up)… I knew I had to get out of there.

Last year he had started on the lowest dose of seroquel. The Director of Nursing wanted it stopped. He felt it was overmedicating bc Dad's energy level tanked. Earlier in his time there he would chat with the DoN and be out and about interacting when I wasn't there… so at that initial try w seroquel the DoN just didn't feel it was right for Dad. Dad's neuro NP said we could try Abilify. I did not pursue that at the time bc of all of the talk about overmedicating Dad. I felt stuck bw a rock and a hard place bc the "experts" in the field felt it was not needed. I'm for sure not an expert on dementia. I just don't want my dad to suffer anymore than he has too. We decided I would visit less and for shorter stays during activities or meals in common spaces, etc. etc.

He is in lorazepam and buspar for anxiety. He has an additional prn dose of lorazepam as needed too.

I have asked to revisit Dad's meds needs w the psych meds NP at his MC community and I think I will also loop the neuro NP in on this conversation too.

Thank you all for your replies and ideas. I really appreciate it. Somehow my gut and my heart sensed something very different yesterday. It made me question his level of upset more than usual.

Something just isn't sitting right with me about this.

I do like the DoN. I guess I am gearing myself up to challenge him on his opinion of Dad's med needs. While that feels super uncomfy to me, it seems needed at this time. I think I am doubting myself and questioning my knowledge/understanding of the current expression of Dad's Alzheimer's.

Have you experienced having to push for adding meds for your LO?

Thanks again,

Jen

Anonymousjpl123

Hi @jen ht I am so so so sorry you are going through this. It is excruciating enough managing/caring for someone with ALZ/dementia, but adding on this level of upset is gut wrenching.

Does your dad have a close connection with any of the staff? I ask because in mom's MC, the women constantly interact w/ each other but the men mostly eat together, sit together, but don't seem to engage that much (everyone is around stage 6/7). Some men DO, however, seem to build rapport with specific staff. I ask because this might help your dad - finding one or two staff he can connect with. I say all this to also say I don't think you're alone. MC seems really different for men - maybe harder.

The paranoia thing is REAL - it was huge issue with mom before she moved. By the way, move was not my choice - she was asked to leave the MC because they couldn't deal w/ her incontinence and behavior. It wound up being the best thing, but it was AWFUL. I think it was partly that at that time (1.5 years ago) she was moving from Stage 4/5 to closer to Stage 6, and it was just the worst. If your dad can still form thoughts/sentences, this phase may just be brutal. My mom was miserable the first 1.5 years after she moved close to me. I hesitated to put her on Seroqauel but….

The medication helped a lot. Her old place put her on Seroquel and, just 2 months ago, her new place added Trazadone because leave it to her even in late stage 6 her wandering makes her such a fall risk. She walks ALL day. So much that they made me get her a part-time aide b/c they can't increase dose and she's such a fall risk (she already had one bad fall). My point is, even on two heavy-duty meds she is far from a zombie. She's in late Stage 6, according to her neurologist/primary/hospice, her words are mostly garbled, but she has occasional clear sentences and still interacts with everyone.

What she is not is depressed, anxious, or distraught. It's a miracle. I can't imagine her without the medication.

Everyone is different, but yes, I have had to have a LOT of conversations, advocacy, discussions, with staff at both her old and new place. Everyone agrees she's moving from moderate to severe, and progressing. Our discussions are changing - I asked what we should focus on and the Director said, without missing a beat, "comfort." That made sense. Talk to the neurologist, talk to the staff. See what they say. It's breaking the bank but aide that I really didn't want to pay for IS helping. And it won't be forever.

I hope this ramble helps. I truly do feel for you. There are no great or easy answers in this puzzle.

jen ht

Thank you for sharing your insights @Anonymousjpl123 . Very helpful. I have wondered about an aide at times.

Everyone's replies and encouragement have helped to strengthen my resolve about approaching the topic of meds again. That's exactly what I was hoping for… a stronger confidence in at least asking about it again.

Take care, all. May we be well. 💜

jht

Anonymousjpl123

definitely. And I had all of the same fears of over medication/ “medical restraints” that you do.

From what I can tell, most places (even THE somewhat incompetent one my mom was at before) really want to avoid that.

Take care and please let us know how it goes.

Tuco

while not with my dad, I have experience with many of these meds with my now adult kids, one ASD, one bipolar. Yes they have side effects but the ultimate measure is do they increase the quality of life. Some will increase sleepiness, but to some degree that isn’t all bad. There are risks with some of the antipsychotics, but again you have to evaluate the benefits/risks for someone at the final stages of their life.