New stage?
Mom states she had been having urinary urgency for the past 2 weeks. She denies any known symptoms of an UTI. She has an upcoming appointment with a urologist nonetheless.
Last week, she was mortified when she did not make it to the toilet in time, ending up having her bladder totally emptying itself on the floor of her IL facility's meeting room, bathroom.
On the weekend, she spent a few hours in the ER as she slipped, and face planted on the concrete while taking her daily walk.
I previously pegged her to be in the midst of stage 5. Does anyone believe these two incidents could just be coincidences or are they more likely to be indicative of her transitioning to the next stage? Personally, I fear the latter. 😭
Was your LO's transition through the stages, observable or subtle❓️
Both incidences were traumatic enough for her that I fear they will be the root cause for her to self-isolate in her apartment.
I can not believe that hose 2 incidences could be all that is needed to undo a year's worth of my encouraging her to socialize and participate in activities. This is truly breaking my heart. 💔
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urinary incontinence can happen in the elderly or at any stage of dementia. Signals to and from her brain don’t connect. Has she been tested for a UTI? If not I would start there. She may not be aware of symptoms. I would get her to wear depends. They also make liners for them that will prevent leaks. If she is walking by herself maybe it’s time for someone to go with her. She could wander off. Progression is unique to each PWD and it can be steady or stair steps. If you are with her all the time you should observe behaviors. But behaviors can show up and then pause. Someone posted that it’s like the wires in their brain have a short and sometimes connect making their caregiver question the diagnosis. Is she in assisted living? If so I would alert the caregivers of your 2 concerns. Is it time for a walker? Falls are common in dementia and she could break her hip.
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Didn’t the ER test her for a UTI while she was there? Even if they did, she could still have a UTI. However you are not mentioning any added confusion or lack of orientation. That’s a common UTI symptom in the elderly or those with dementia.
Incontinence is part of dementia progression. Mobility issues that occur with the elderly or dementia doesn’t help because it takes them longer to get to the bathroom. It’s best to encourage her to wear depends rather than to try to move faster or recognize her urges sooner.Falls also seem to be common with the elderly or dementia. It does take time to recognize when our loved one is progressing as it can be subtle slow changes.
Independent living seems unwise for a person in stage 5. Assisted living is better equipped to handle their increasing needs. Although even AL can’t handle a PWD in stage 6 or later.
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@JulietteBee
Often elderly women, even without dementia, have UTIs without the usual symptoms. That said, often there is a change in mental status or demeanor that is striking. I would not wait for a urology appointment for this, but would ask her PCP to order a test. If you can get a clean catch at the facility, you won't even need to transport her to the lab.
Have you noticed a sudden change in her demeanor or striking change in cognition? Did the ER do a urinalysis? IME, mom was in the ED 7 times in the last year (2 UTIs, 4 pneumonias and 1 sepsis) they often do.
Or it could be that this is the start of urinary incontinence related to dementia. It generally starts with occasional accidents before becoming the new baseline. Sometime bedwetting will happen for a time before daytime accidents. Often you'd see missed steps in bathroom hygiene— flushing, incomplete wiping, disposal of used TP in the trash or left on the sink and skipped handwashing. Since you don't live with her, you may not be privvy to this happening.
Falls are also common in the elderly. Sometimes mechanical falls can be the result of muscle weakness unrelated to dementia. But they can also result from impair spatial reasoning, visual processing issues and lack of focus related to dementia. A UTI that exacerbated her dementia symptoms would increase the risk of a fall, so they could be related. Or maybe not. It's very hard to parse out.
The transition between stages can be striking or subtle. With dad, who had Alzheimer's as his primary diagnosis, the decline was slower and steadier. My aunt who had vascular dementia had more of a stair-step progression where she'd have a long plateau in one stage and wake up one day in a completely different one. Sometimes an illness or injury can fast-forward a PWD through stages; another aunt broke a hip in stage 4 cusp of 5 which left her in stage 7 overnight.
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Thank you for your response.
No, she has no symptoms of a UTI. She has had in the past so she knows what to look for.
Her only complaint is that by the time she got the urge to go, she went.
I see her 2-3 times per week but have not seen any decline in cognition/memory in the recent past.
She typically walks with a friend or a group. I guess no one was available so she went by herself. I bought her a walker but she has never had to use it. It may now be time to have that conversation.😒
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No, the ER did not check her for a UTI. She never told them anything about having urgency. As she was brought in via ambulance for a head injury, ruling out an intracranial bleed was apparently their priority and hers.
She has had no increased confusion or memory loss. She also has no complaints of any other symptom of a UTI.
To try to prevent self-isolation from embarrassment, and to get back to socializing, I bought her a 3-pack "waterproof" panties. I agree that I'd rather her wearing something than try to walk faster and fall.
I may be wrong with the use of the staging tool, but I said 5 because she shows more signs found in 5 than in 4. The new incontinence and fall made me query if that was what would indicate she is entering/has entered stage 6.
She is still very independent that I think a move to an AL may currently be premature, but it is certainly not out of the equation if in fact she is subtly transitioning.
I'm watching her now like a hawk.👀
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No, no changes in mentation or level of orientation. She has also not had any other complaint which could point one in the direction of thinking it is a UTI.
The ER did not do a urinalysis. Paramedics brought her in with a head injury. Whether she forgot to mention it, I do not know, but they focused on doing 2 stat CTs to ensure no facial bone fractures or intracranial bleed, as she is on blood thinners.
I do plan on asking her if she has had any nighttime accidents. Funny, I never associated her forgetting to flush the toilet as a dementia issue. I thought it was just, you know, "saving water."
I have noticed her gait has changed over the past few months, and I have pointed it out to her. She is now leading ever so slightly forward and dragging her feet. I too fear that future falls may become common.
She does have Vascular Dementia and I can definitely appreciate the analogy of "stair-step." As I've said elsewhere, her words & actions, when on a plateau is so incredibly "normal" that it makes me think that her dementia is a figment of my imagination.
Thank you for the insight.
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I’m so sorry your mom is going through this. it sounds like progression, which, as you mentioned, may not be linear especially with Vascular Dementia. It’s been 3 years since my mom went to AL and 2 since MC and I’d say she’s in now solidly in stage 6. But it ebbed and flowed a LOT over these years. Her progression has been faster than some, slower than others.
the Tam Cummings staging is tool is so helpful for understanding this.
Also, fyi, my mom had like 3 UTIs with zero symptoms, also COVID, before she moved where she is now and it really affected her health even without the symptoms. Hang in there. This is horrible stuff to be working through and it sounds like you are doing right by your mom.
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Thank you so much for your input and kind, compassionate understanding. I loathe this disease, both for what it is doing to my very smart mother, along with what it is doing to our relationship.
I am trying to practice the D.AR.E method but failing more times than not.
I really do not believe the 2 above mentioned issues are coincidental. I believe & fear they are signs of progression. If I understand the step analogy correctly, she was on a plateau for the last 6 or so months. Now she is stepping down another 1-2 steps and will then "enjoy" a few weeks or months with that "new norm." Sadly, and without warning, another step down will occur.
Yes, I love the simplicity of Tam Cummings video. Based on them, I believe mom has been in stage 5 for a while. However, she is nowhere near needing to leave her IL apartment at this point…imo I don't know if she is "showtiming" but if someone was casually listening in on her communications with friends, relatives, and the other residents, they would think her pcp/I am lying about her cognitive decline. Her confusion I have found is primarily her inability to understand written material or process questions being asked.
Our poor mamas!💔
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I totally get it. You know your mom best: this disease makes it nearly impossible for everyone to see the same version of our LO let alone understand their needs (except for the really skilled/experienced caregivers, family or in the field).
My mom needed MC not because of a specific stage in her disease, but because her behavior was too much for her AL to handle (wandering, incontinent, highly paranoid - though AL was murdering people).
That said, the fact that you understand her disease at this phase gives you a huge leg up. I didn’t know if my mom just had NPH, or NPH with Alzheimer’s, and whether she should have shunt surgery, if she would be approved, and if it would help. She was deteriorating SO fast and I had all these decisions to make with mixed information.
And even at her worst, if one of my friends talked to her on the phone there were times she sounded almost rational and remembered that I couldn’t believe.So you are very right to focus on her needs right now. That’s all we can really do.
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I did not realize that putting used TP in the trash was a sign of the path to incontinence which is so interesting. My Mom has been doing that and I had no idea why. Thanks for that info
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I did not realize that putting used TP in the trash was a sign of the path to incontinence which is so interesting.
It’s a sign that they no longer totally understand the toileting process. Other things they might not understand at the same time: how to recognize the urge to toilet, where the bathroom is, the need to flush the toilet, eventually what the toilet is for.
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That is dreadful! She has not always flushed. I thought it was due to her "old-school mentality" to save water. HB opened up a whole new realm of things done/not done that evidence the disease progression. 💔
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I hate when that happens. Mom sounds & looks lucid around others, AFTER I've previously told them that she has dementia. I know she isn't doing it intentionally, but it almost feels like she is saying, "I'll show you who is demented." Typically, I feel like an absolute idiot for saying this 100% lucid person has dementia. Thanks mom!😭
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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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