Stuck & Need Advice
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!
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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.
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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.
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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.
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@_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.
HB1 -
I’d change neurologists! Yikes.
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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.
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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.
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Thank you for your advice - we are in the process of scheduling appointments for tours and hopefully will have plans in place very soon.
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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.
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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.
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Think about the impact this is having on your life. It sounds selfish, but would your LO want their care to impact your physical well-being??? After caring for my physically and cognitively disabled husband (due to ruptured aneurysm) for over 15 years at home, I couldn't do it anymore because it was having impact on my relationship with our teenage daughter and on my physical and mental health. Also, I wasn't able to keep him safe even with additional in-home care assistance. I put him in MC and was able to spend more time with our daughter getting her off to college and supporting her. I was also able to spend more "quality" time with my husband rather than the physically stressful day-to-day care. He was in MC for 3.5 years before passing away in 2022. In 2021 we move both our parents to AL due to Mom's Alzheimer's. Now, 4 years later both parents have advanced dementia and we are considering HOSPICE and SNF as MC is not able to keep Dad safe due to his constant wandering. I have three siblings that are participating in the care of our parents, who we love so much, but we are all in our 60's and even with the 4 of us participating, it's impacting all of us!!
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Hello, I just joined this group. My 73-year-old mother recently received a diagnosis of first-stage Alzheimer's. I am an only child, and I am very overwhelmed with her diagnosis. In 2019, we diagnosed her with dementia. Two of my cousins are helping me with her care, as I live out of state. Upon my retirement from the military, I chose to remain at my previous station. I don't know how to tell her of her new diagnosis. We were able to talk to her about her dementia, and she took that well. My stepdad passed away from cancer in 2021, but I would rather not lean on my stepsiblings like that because she is not their mother. But I know that they do love her just as much as I do. I have been trying to prepare myself for this, but it has been tough. I suffer from PTSD, along with anxiety and depression. I am lost, and I am hoping by joining this group that I can receive some support so that I don't fall into a deep depression to the point that I am not any good, to the point where I can't assist in the care of my mother. I'm sorry for putting this on all of you, because you are going through more than I am.0
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There’s no need to tell her. Alzheimer’s is a form of dementia. She already has been told she has dementia. No need to get more specific. I assume she’s progressed from Mild cognitive decline to moderate cognitive decline?
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Sarah: hands down best advice I got (from this forum!) re: my moms care is that she needs to be somewhere she will be safe on her worst day, not her best day. Why? Because otherwise you risk something bad happening to know she’s “ready” for memory care. I did it. I placed my mom in AL first and in hindsight it was a mistake but one I would likely make again … because we were both in denial.
This disease IS hard. People lose memories and often gain anxiety, confusion, depression in their place. So you’re not really looking for a place she will have fun or be “happy” (though she may), you are looking for a place where she will be safe and genuinely cared for.
If I felt financially safe enough to stop working full time (which I don’t), I would absolutely have considered caring for my mom full time. Even then, I don’t think I could give what she needs.Memory care is far from the easiest option. It’s super expensive, and super hard to find the right fit. It was for me at least.
But care at home is really hard too, and will also affect you and your relationship. You save on upfront costs in the short term, but when things get hard, being without an income and health insurance seems even more scary (to me, I’m 55).
So I chose memory care. These were some but not all of the factors. But here’s the thing: the first one (MC in her assisted living place) wasnt the right fit. We had to move. A nightmare. But we both agree her place now is fantastic and I see it in her face, her demeanor, her clothing, her trips with other mc residents. But during that move I again seriously considered moving her home and the math didn’t add up. For me.
Only you know your situation. All we have is each other. You’re never alone. This is the kind of stuff I called the Alzheimer’s association hotline about. There’s a lot of help out there.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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