We need guidance 🙏

staciehun · September 29

We moved my MIL (83alz) out of her state and into our home in a different state 9 months ago. She is mid-late stage and still physically capable. She obsesses over 2 specific things and we haven’t been able to redirect or stop it.
1- she thinks she needs to go to the bathroom constantly. She goes back and forth from one room to the bathroom. She is very insistent that I go with her because she needs help, we go to her bathroom, I help her with her clothing and she sits for a minute and gets back up, we adjust her clothes and go back to the den. As soon as we get there she sits and stands back up in one motion…and we have to go again. She’s been to the dr, no uti, daily bm, no constipation, eating/drinking normal, on anxiety meds. I know this is an imagined repetitive behavior but it’s constant and she is relentless with demanding a co-pilot for this trip.

2- she asks 100x a day, “what are we doing?” And says “let’s go” constantly. We can not get her to sit and no one else is allowed to sit, for any reason, no computer, no tv, no reading….no sitting! She will stand over us asking what and let’s go non stop

Our entire family lives out of state and we are the only ones she interacts with and needs to visually see us at all times, if we take a shower she tells us to “hurry up, let’s go”. No hobbies or interests, we’ve tried every hobby, magazines, pictures, books, crafts, movies….list goes on

Can anyone recommend a way to change her obsession to something we can manage??

Thank you all for this forum…it’s been very helpful

SDianeL · September 30

welcome. Sorry about your MIL. As you mentioned, the behaviors are caused by anxiety. If redirection or distractions haven’t worked, you might ask the doctor about changing the dose of her anxiety meds or trying a different brand. Be specific when you mention her behaviors to the doctor. Many PWDs shadow their caregivers. Their world is falling apart and you are their lifeline. For my husband ice cream was one distraction that usually worked.

towhee · September 30

I agree with asking doctor about medications. Some PWD do enter a constant movement phase, usually walking with only short periods of sitting to eat.

harshedbuzz · September 30

Oof. That's hard.

She sounds like a good candidate for day program. Medication might help with the repetitive bathroom visits which could be driven by anxiety.

HB

staciehun · September 30

We made an appt with her neurologist to talk about all of this, she’s on Lexapro for anxiety, he upped her Rexaulti to try to ease the “demanding” and anger. It’s not helping much so we made an appt with a geriatric psych…maybe there’s a better med for the anxiety.
We tried to find a daycare situation her to at least give us a break….at the very least an opportunity to get stuff done, there’s isn’t anything like that where we live. We’re on the hunt to get some help for a few hours at our house….she getting really angry when unknown faces are here but I’m at a point that I need to try to keep a smidgen of sanity, it makes me feel like the worst person on the planet for running out of patience. The anxiety I have about my growing to-do list to care for my house, self, marriage, pets, family, property…is making me feel selfish.
This disease really sucks the life out of entire families

H1235 · September 30

Welcome. I think you are wise to see a geriatric psych. Medication for anxiety and depression can be difficult and time consuming to figure out. Your anxiety is a valid concern. Maybe see your doctor about some anxiety medication for you (I avoided this for too long). You may just have to take the stance that if she gets mad, she gets mad, you can’t stop taking care of your house, family….(I know that is probably easier said than done). Maybe hire someone to mow the law, clean out the gutters, have groceries delivered or splurge and order out more often. These kinds of things might be helpful without having an additional person in the house to anger her.

harshedbuzz · September 30

@staciehun

Dad's geri psych was the most important part of dad's care team after mom. He was a wizard with combining meds to damp down anxiety/behaviors while minimizing side effects. I hope she can be seen soon because the best thing you can do for her going forward is to get you some time to catch your breath and recharge your own batteries.

When you do bring in assistance, perhaps introduce them as a friend visiting right down to coffee and cake the first time to give you the best chance at acceptance.

TBH, the middle stages of dad's dementia were the worst. Have you checked with your area agency on aging? They may know of day programs. Some MCFs also offer these as well. In any case, you should probably have a Plan B in place if this becomes unsustainable. When mom finally agreed to place dad, I'd already toured a dozen places and narrowed it down to my top 3 which made deciding easier for mom.

I do hear you on the distraction and PWD can be. Dad didn't even live with me, and he derailed my life for 2 1/2 years. I'm just now catching up on putting my house and its people in order.

HB

staciehun · September 30

I actually found a program where I am and spoke to some of the coordinators. I’m in Virginia and we have VPAS here. There isn’t much in the way of daycare within a half hour of me and we’re currently in a no car ride longer than 10 mins phase.
We did have some “visits” while interviewing hhas, did the coffee/cake, friends from work ploy….somehow this women can’t put on her shoes but can detect a ruse and hold a grudge for 2 days and no sleep will be had for 2 nights.
it seems like these “loops” are normal, her neuro said “this her now” I just wish there was a way to change the loop.
I will def tell the rest of the family to start looking at potential future facilities that’s a great idea, right now they’re all in opposition but she’s not living with them and they’re not in VA to help

After 2 1/2 years of a pause on your life, was it difficult to find your own rhythm again? We’ve been handling this for a couple of years, only in my house since Jan, all the things I was before are fading as fast as her abilities

SDianeL · September 30

Found this online. Worth a try? https://www.facebook.com/share/r/1G8HqB8KRz/?mibextid=wwXIfr

harshedbuzz · September 30

@staciehun said:

After 2 1/2 years of a pause on your life, was it difficult to find your own rhythm again? We’ve been handling this for a couple of years, only in my house since Jan, all the things I was before are fading as fast as her abilities

It was difficult for me. Your mileage may vary. Dad died in April 2018, so I spent the next 5 months catching mom up on medical stuff she'd neglected— she had a COPD/BP crisis, got dental implants, then had another BP crisis that cost her the vision in one eye and helped oversee some major renovation projects on her house (she'd moved there when dad was middle stages and remodeling wasn't doable then). Not long after the vision issue, mom was forced to stop driving after having 2 accidents in a 60-day period and got sued. I got a long delayed TKR and spent 4 months rehabbing that while driving mom to her many appointments until COVID started.

To my ear, she sounds pretty challenging at this stage of dementia. I mean, it seems like you are already doing/trying the best strategies for managing her care and behaviors and not getting the expected results. My dad was like that as well. My aunt and my friend's mom remained their pleasant selves in dementia.

IMO, the person wiping the butt is the only one who has a say in care decisions.

HB