ER, diagnosis, grief

Anonymousjpl123

In the ER with my mom. As everyone suspected, this hasn’t gone well. Today she tried to leave the AL - I was with her about to meet personal caregiver. We never got to the lobby - she panicked, left, walked down the street, into a store, refused to go back saying it was unsafe. Staff members, nurse, and director stayed with her while I called the ambulance/911.

She has now had a CT scan, another MRI, blood/urine tests. Consensus is yes she has NPH but they are certain it’s also alz or another dementia: NPH alone doesn’t explain her moca scores and lack of cognition. Two neurologists came and said even if she is eligible for NPH shunt (she sees neurosurgeon next week) she will most likely not regain lost cognition, though it might show the decline.

Memory care is inevitable. She doesn’t want to go back to the same place (delusions/paranoid the covid is fake). She’s being kept here overnight. They (hospital geriatric staff and social worker) will help me with planning next steps tomorrow.

I am so sad. I thought I was doing right by her. I’m certain she wouldn’t have gone to memory care straightaway last year. Sad that she now feels so unsafe in a place she has actually been really happy at this past year. Thanks for listening.

housefinch

I’m so sorry. No matter how old you are, she’s still your mom and of course you’re devastated. I wonder if she would be a candidate for admission to a geriatric psychiatry inpatient unit to get her stabilized on medication before discharging her to memory care. Unless everyone at the facility thinks her agitation and behavior are manageable by their staff. That might be 1 benefit of this otherwise difficult ER visit. And I’m not sure you did anything wrong or influenced her progression. You did what you thought was best as a caring daughter. This outcome may have been inevitable. Wishing you comfort as you navigate the days ahead.

M1

Yes I'm sorry it came to this too-but as you say, likely inevitable. If there is a bed in MC immediately, you can tell her it's a different place even if it isn't==she may not recognize/respond to it.

Tough decision about the NPH. It's not exactly a risk-free procedure. I would ask whether they think it would help her to stay mobile longer--even if it doesn't help her cognition, if it keeps her from falling/being able to walk longer, it may be worth it.

Anonymousjpl123

Thank you both for responding, and your affirmation.

Geriatric inpatient may be necessary until we can get this under control or if she won’t go back to her place. The staff know and like her, which is one of the reasons I am praying we can get her back. It’s also one of two places I can even imagine sending her. I think even if they don’t have an MC bed they will try to find a way to make it work. It’s her I’m worried about - she can be extremely stubborn once her mind is set.

I’m going to have to do what I did last year when this all started: be firm but kind. She had to move, living on her own wasn’t an option, no, we couldn’t “reassess” after 6 months.

I hate this because she really wants to come live with me, and no matter how much I know it makes no sense I feel so much guilt.

Anonymousjpl123

so much information. Two more neurologists - I learned a bit more about NPH and dementia. I hope one day I can share what I learned.

i freaked out assuming it “defiiitely is” NPH, 3rd neurologist had his doubts. He told me people put “possibly NPH” in notes a lot, as they want to be extra careful and check for it. He sees that it may be, he sees parts of images that point to potentially something else.

Basically he explained that when there is brain shrinkage and enlarged ventricles it can make the ventricular enlargement seem more pronounced. Apparently her gait and incontinence (which have improved) are also not as bad as he expected. He basically said no way to know until lumbar thing.

So….now we are hoping to get her back to her facility tomorrow. As of today, she has agreed to go. Then we will figure out transfer to memory care - details, when and how.

The good news is she now has a full spectrum of medical professionals. The social worker at the hospital is awesome and is going to work with me and facility in discharge plan (logistics) tomorrow, and transition to memory care (which is at same facility).

The sad/bad news is 5 out of 5 doctors made very clear to me her dementia will progress, and even with shunt cognition won’t come back.

what a nightmare. I am so sorry for all of us. I also feel incredibly privileged to have access to this care, and sorry for myself I am a sole caretaker with no other close by family support.

this board saves me because I KNOW people reading this understand

Emily 123

jpl,

''I am so sad. I thought I was doing right by her.''

You did do right by her. It's tough. Because things are so variable from person to person you can't look down the road and know what to plan for. Sometimes it all blows up. We just want them happy and safe, and the disease only lets us settle for safe. It's not anyone's fault that the disease makes them yearn for something that isn't 'here'.

It sounds like you're getting some good support and thoughtful answers from your mom's team. I know it's not what you want to hear from them, but it sounds like you have a framework for getting her into MC soon.

Anonymousjpl123

Emily that is spot on.

“Sometimes it all blows up. We just want them happy and safe, and the disease only lets us settle for safe.”

This is where I am. And I can’t stop crying.

calmmorn

jpl, I am so sorry to hear about your mother. Sounds like so much to process, so much to grieve. Please cry cry cry as much as you need. I do hope, though, that you will be able let go of the guilt (I wish that for all of us). “Firm but kind” sounds like a great plan. I am also caregiving for my mother with virtually no family support, so I am really big on the no guilt thing. We are doing the best that we can. I hope your mother’s transition back to AL goes as well as can be given the difficult circumstances. I am sending you a big hug.

Anonymousjpl123

Thank you all so much for your support - @housefinch @M1 @Emily 123 @calmmorn .

Final update: the goddess finally smiled down and there’s a private room available in memory care. It’s so similar to where she was - colors, windows, even size.

The hospital wants to keep her one more night anyway, so I’m here now getting ready to move her tonight so she can come straight to MC and her new room when she’s discharged tomorrow. They are closely coordinating with her AL/MC facility.

It’s the first time I’m sitting down all day but sitting in my moms room here I feel like crying with relief. Seeing MC, the people, the mix of people, and meeting all the staff, I finally feel some sense it will be ok.

Her diagnosis is dementia and NPH. She is calm and on 24 hour watch at the hospital (she made a non violent and very polite but assertive escape attempt this morning, so sadly they had to give her haldol).

Hospital transition team and MC are coordinating care. I’m with movers here moving her stuff to her new room. they are very sweet and even took pictures of her current room so they can recreate it in the new place. Apparently a lot of the staff work both in AL and MC and know my mom, so that will help.

On a funny note, they were all joking “who the hell let Miss C escape! She’s tiny and don’t walk all that well!”

M1

This is good news. I'm not surprised that that's how the NPH thing is evolving. If she doesn't improve after the lumbar puncture, you're done. Harder decision may be that if she does improve some, what then?

Here's hoping she'll do much better with the increased level of support.

Anonymousjpl123

Yes - I thought about that too. What pushed me to make the MC decision right away is that the one thing all neurologists seemed to agree on is that even with the shunt, her cognitive functioning would likely not recover entirely - just would not progress as fast.

If her memory and cognitive skills improve dramatically, that would be amazing. Yes, we’ll have to figure out what then and it will be hard. But I would rather have that problem - her being safe and being super pissed I put her in MC prematurely - versus her being unsafe and potentially having to move to a whole new facility or worse.

Also, she can still leave if she’s accompanied by someone. Weighing those possible outcomes, I feel like the move to MC was the right one. Make sense?

Anonymousjpl123

One more advantage I thought of in the middle of the night: if her shunt surgery goes as planned, and a miracle happens, and she has all her cognitive functioning back, she can go to the nicest freaking room she wants as soon as it becomes available on the AL side. More expensive than the one she had even, if that is what she wants, because it will likely still be cheaper than MC. Win win.

I am not hopeful for that based on doctors combined. But if that miracle occurs I’m ready. Plus, she WILL still need more care while recovering.

This board has really helped me be able to think in unthinkable circumstances