“Don’t Do This to Me!”: Spiraling Down

ARIL · September 15

Tonight my spouse and I went to visit my 92-year-old dad in MC and had dinner with him. All was fine until it wasn’t. After the meal he grew increasingly agitated and wanted me to call his mother and see if we could stop by and visit her for a while tonight.

What was surprising is that despite all efforts at redirection, distraction, talking about Grandma, therapeutic fibbing, kicking it to the future, etc., he kept coming back to this idea—for a full hour. Doggedly. This is a person in about stage 6, who usually hangs on to an idea for a matter of seconds. I have heard this request before, but never so persistently.

The verbal aggression ramped up, and the accusations against me were painful to hear, although I know it is the disease. Really. Still, the disease has taken over my dad’s voice and body, and it is hard to throw it off. We finally had to slip out when he was talking to the nurse. I felt like a heel. And I am exhausted. And sad. My husband said he couldn’t think of anything else I might have tried.

Strategies? Ask about a UTI? Talk to his geripsych? Any better answers for why I can’t phone my grandmother or take him to her? “I can’t live like this!” he said. “Don’t do this to me!”

Such a brutal and brutalizing disease. For everybody.

Quilting brings calm · September 15

It sounds like sundowning. Try visiting earlier in the day.

jen ht · September 15

@ARIL I'm so sorry to hear about this rough experience.

One time when dad was inconsolable like this it really shook me up.

Does your dad have a prn dose of something for anxiety? We did that for a while for dad when it seemed like times like this would come on for dad.

Eventually for me I just had to exit when this happened. Sounds like that's what you did. I know it is hard to walk away when we'd prefer to see it clear up before having to go.

Mainly wanted to say that you are not alone. And I'm so sorry.

Standing next to you.

Jen

psg712 · September 15

So sorry. I know that you did all you could to ease your dad's distress. Sometimes nothing works but walking away for a bit. Hope he was able to calm down when you weren't in front of him. I agree that sundowning could play a part in this. I found that visits to my mom went much better for both of us in the mornings.

April23 · September 15

I'm so sorry that happened. Agree with the others that visits earlier in the day have worked better for me.

pamu · September 15

Maybe tell him that his mother has an appointment, on a trip, shopping, sleeping and you'd need to make plans to see her another day? Definitely talk to the geri-psych and/or care team to see if his agitation has increased. He may need his medication tweaked or you may want to try visiting a different time of day to see if it makes a difference. Sometimes the only thing you can do is try to make a graceful exit. I had to make a quick exit one day last week because my mom was agitated and demanded that I take her to "go live somewhere else" with no let up. She was standing in front of me with her bag and bin packed on top of her walker, ready to go! I couldn't redirect or comfort her. I felt like a horrible daughter that I left after I told her I was going to use the restroom because I wasn't feeling well. I let the NOD know what happened and he was going to check on her throughout the day (there were notes reporting that she was calm and resting in her room). She didn't remember or mention it the next time. This is so hard…take care.

terei · September 16

Sometimes it is better to remove yourself if a couple of excuses dont work. It is probable that your presence is a trigger and he calms down as soon as you are gone. Having him AND you agitated is not productive or pleasant for either of you.

ARIL · September 16

I really appreciate your responses. It is so helpful to be understood, and your stories give me courage.

Yes, there is an anti-anxiety med, although given in the AM. I will keep an eye on this matter.

Since Monday I have learned that my dad was in an activity between lunchtime and my arrival, during a time he ordinarily sleeps. So it is easy to see a plausible reason why the sundowning was so much worse than usual.

I did not visit yesterday, but I’ll go today after work. (Visits in the AM on weekdays are not possible.) I know he will not remember Monday, although I do…to my sorrow.

Thanks again for empathizing.

UPDATE: He was better today, and I left as he was going to dinner. We talked about seeing his mom, but he asked why she hadn’t come to see him “yet today,” since she had said she would. I said, “Maybe she’ll be here later. She always does what she says she’ll do.” He was satisfied. So, a “normal” visit for the way things are now. Staff said he settled down on Monday after I left.

Anonymousjpl123 · September 20

Glad the last visit went better. You are not alone. For what it’s worth in my mom’s MC I think 50% of the residents ask me or have asked me to take them to their parents. I’m there a lot, but they seem to know I’m not staff so they think I may know something.

Whether we are caring for our parents at home or in a facility, the “I need to go (home/to work/somewhere else)” seems to be a really common anxiety.

I have a theory completely not backed by science that your dad is just uncomfortable, knows something is off, doesn’t understand what’s happening, and of course is upset and angry. We just can’t fix it. You just need to stay calm and not give up. It’s very painful. Focus on keeping him as comfortable as you can, and making sure he’s well cared for.

ARIL · September 21

Thanks, @Anonymousjpl123, that makes sense to me. In fact, today I was visiting my dad and I asked him how he was doing. He said, “I am really tired.” He was in bed at the time. He continued, “Anymore I just think things aren’t working right. I feel really old, and I am wearing out.” I said I understood that. He said his mother told him he was getting old, and she knows things like that. I agreed she knows a lot.

Then later he asked me my name. I told him. He said, “That’s a beautiful name.” I just said thank you. I resisted all impulses to say that he named me… 💔

Anonymousjpl123 · September 22

So incredibly difficult - but you sound like you handled it perfectly. That’s the think - “I’m really tired” and “I feel old” make me want think he know and feels something is off. No way of knowing. It’s good you didn’t correct him.

I cheat my way out of it. I call my mom “mom” the whole time I’m with her, and sometimes even say “it’s me, (my name).” And she seems like she knows. Sometimes she does still know my name (which is also crazy and heartbreaking).

The truth is we can do the best we can to be with them, to show up, and hopefully they know they are not alone on some level. It’s weird he’s talking about his mom so much but like I said people in my mom’s place do it all the time.

Literally the other day one person told me she was waiting for her parents to visit, and another said he wanted to see his mom who lived in another apartment. It’s cool to watch staff just meet them where they are.

I do hope you take care of yourself. Your visits sound like mine and it’s exhausting.

“Don’t Do This to Me!”: Spiraling Down

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