Stuck & Need Advice

_sarah_

First Post - seeking advice after a LONG road to present day. Mom first presented concerns 10 years ago but masked symptoms until my sister & I stepped in 4.5 years ago. After going back and forth with her neurologist, we decided to find a new one in a different hospital system local to us. To our relief, in the very first appointment in October 2024 we got the confirmation we needed - Mom did have moderate Alzheimer's. Neurologist advised no cooking and to continue to monitor symptoms but felt comfortable with her continuing to live at her 55+ apartment community on her own.

Fast forward to the last week of February 2025, we received a call that Mom was found wondering the halls of her apartment complex and was banging on doors in the middle of the night completely out of it. She spent time in the hospital for a UTI (that had apparently exacerbated her symptoms) and to get back on medications that she hadn't taken in over 3 weeks. However, now that she is back home we've noticed that many things haven't gone back to her "baseline". We stayed with her for a week, making sure she showered, took her meds and ate, etc. But the first night we didn't stay she failed to wear her CPAP (OSA) and shower - both were huge issues before this ordeal.

My sister and I are doing what we can and really don't want to move her to a facility, but are finding it hard to do so given the fact that she has had several instances since coming home where she thought she was married to her good friend (which was a delusion she had during her hospital stay), seemingly is lost in thought but when asked doesn't remember thinking about anything, gets up in the middle of the night undresses and gets back in bed, and has been incessantly checking her door for reasons she couldn't convey.

We're in the process of Medicaid approval and thankfully have a local VNA that has resources we've been able to utilize. However, I can't help but worry that she's telling us what we want to hear and deep down there is a HUGE safety issue and she shouldn't be alone anymore.

Ultimately - while I totally get that the decision is ours - I'm hoping others may share their experiences and how they navigated the decision. Especially when the LO can still hold conversations and seems to remember certain things, even the random stuff you wouldn't expect.

We don't want to have her decline faster because of us putting her into MC, but I feel like we don't have any other choice as the two of us cannot live with her to be her caretaker 24/7.

Help!

Caring Daughter

I had been my mother's primary caregiver for four months now. My mother cannot be left alone and requires constant monitoring. If I sent her to a MC facility, I too feel like her condition would rapidly decline due to her being more confused in an unfamiliar setting with unfamiliar people. After several months of 24/7 caregiving, I realized my own physical and mental health declining because being a caregiver is a full/ overtime job!! I'm experiencing tension headaches due to no quality sleeps because she wakes up every two hours wanting to watch tv and doing other things other than sleep. Now I'm up and exhausted during the day.

Just recently, my siblings and I decided to visit a MC facility. We called one and a rep allowed us to tour on a minute notice. I am glad that we did because it gave us the opportunity to educate us on MC living. I didn't realize that the facility open 24/7 for anytime visit. Also I didn't realize that the facility are on a monthly lease not long term so if you decide to change your mind and send her back home, you can do so. We are still in the process of shopping for the best care that would suit her best to enhance her wellbeing. A place that she can enjoy life and socialize with other residents and staff. My suggestion to you is to actually visit and tour a facility with both your sister and mom to see if it changes your thoughts on putting her in an MC.

Quilting brings calm

What a clueless doctor. Moderate dementia patients should not live alone- not around stoves etc. I would have suggested at least assisted living,

It takes a while ( possibly several weeks) to get back to baseline after a UTI, especially a hospital stay one. My mom was in the hospital for a week, a rehab for a month, and then we moved her to assisted living. And yes, a UTI can make it appear the person jumped into late stage dementia. They don’t always return to their previous baseline, but might land a little below it.

H1235

The doctor told us it’s best to act preemptively. The timing in moving your lo to a facility is about acting before they are not safe. Once they are no longer safe you run the risk of losing them altogether or them becoming injured because of an accident (fire, walking into the street, not eating, medication problems …). From what you have said it doesn’t sound safe for her to live alone and it is time for the move. In my opinion. My moms memory is quite good, she can carry on a conversation with no problems. Her logic and reasoning are the problem. She thinks because she can push her walker she can push a lawnmower, she wanted us to set up the power washer so she could power wash a swing in her back yard. She has no understanding of her limitations. She is safe in Al. Unfortunately not happy, but safe.

harshedbuzz

@_sarah_ said:

We don't want to have her decline faster because of us putting her into MC, but I feel like we don't have any other choice as the two of us cannot live with her to be her caretaker 24/7.

Why would she decline faster in a MCF?

Many PWD who have been isolated and living alone without social engagement, a good diet and medication management do better in MC than they did at home. My aunt positively blossomed with the routine, social interaction, meds, meals and activities.

If she's taking medication for things like BP, diabetes, or hormone replacement, she'll progress more quickly without taking them as directed. If she's not treating her sleep apnea, she will also progress more quickly than with it. The UTI might have been recognized sooner in a MCF with regular wellness checks.

HB

housefinch

I’d change neurologists! Yikes.

_sarah_

https://alzconnected.org/discussion/comment/238375#Comment_238375

I only mentioned that because that was what providers told us can happen to patients who're moved too soon. With the stress of everything that is happened in such a short period of time, we took their words at face value because we have never experienced this before. All in all, this has been such a learning curve and we're trying to get the most accurate information.

_sarah_

Thank you - yes we have definitely seen a change in the time she has not consistently worn her CPAP. Ultimately, I feel very underprepared and educated for this because of the back and forth with her providers. We've read what we can but it definitely has not prepared us for what we've experienced.

_sarah_

Thank you for your advice - we are in the process of scheduling appointments for tours and hopefully will have plans in place very soon.

H1235

If you look in groups on this website then new caregiver help, you will find a lot of great information. The article titled understanding the dementia experience is very interesting. The staging tool is also helpful.

https://alzconnected.org/group/32-new-caregiver-help

JM27

https://alzconnected.org/discussion/comment/238395#Comment_238395

That is part of why I haven’t chosen MC for my LO was worried it would speed things up and he would decline faster.

My PWD is moderate to late and I’ve toured at least 10 in my area and just don’t see how he will get the care he gets here with me and for the amount of money Idk that it was worth it. For me it seemed they pushed their calendar of activities more than they pushed their care so for now I have chosen not to do a MC facility.

But who knows I may have to reconsider if things change. Either way it a tough decision and just a tough path caring for our parents.