Getting the Story Straight

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Getting the Story Straight

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Awhile back, when I visited a memory care center in town, the activities director talked with me at length about Alzheimer's. Her father died from it, and of course, she saw it every day at work. She said that one of the things that happens in the early stage is that people lose their sense of time, and that was something to watch for. Well, almost immediately after that, I started noticing how much trouble Mom has with time - did something happen yesterday or a week ago? A month ago or a year ago? Now, she blames her memory problems on the passage of time. Whatever it is - a book she's currently reading, the remote control, the phone - "It's been so long since I've read it/used it/etc., I've forgotten how."

Recently she was reading The Handsome Man's De Luxe Cafe (we both love Alexander McCall Smith!) and whenever I asked what it was about, she could only tell me a little, then say she'd put it down and gotten distracted for too long. She finally finished the book and handed it to me. When I opened it later, I found that the book jacket was bookmarking about 1/8 from the end, which made me suspect that she hadn't actually finished. She's always loved reading so much - though her taste has narrowed over the years. But still, it is heartbreaking to see her begin to lose that ability.

Sometimes she tells me about problems she's having - symptoms - but I can't get a good sense of how long the problem has been going on. Currently we're trying to monitor her urination - well, unfortunately, no one is writing anything down, which I realize would make so much more sense. But I've been asking almost every day how she's feeling, if she's having to pee a lot, get up in the night, etc. At first it seemed to be really bad - frequent and urgent! - but we expected that. But towards the end of the second week, she had stopped complaining about it and said that she wasn't going more often than normal. But this morning, she said, "How much longer do I have to take that blue pill? It keeps me up all night going to the bathroom or lying awake feeling like I need to go." And I asked if that happened just last night, and she said no, every night since she had started taking the pill. But just a couple of days ago, she said she was only getting up the usual once a night to pee.

So, I'm confused. Based on that, do we need to go back to the doctor and try to get that med changed to something else? Or assume it was one bad night? She has an appointment in December and doesn't want to go back before, so I guess that's what we're doing. . . I worry about her getting up in the night and trying to get to the bathroom in a hurry. Scary!

Can someone tell me what security device I need to buy? A Life Alert? How do those work? A baby monitor? I kind of don't want to do that because it would keep me up all night listening and I only want to have to get up in case of emergency. I would like for her to have a button she could wear and push to summon ME.

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Denise

Hi--Lots to figure out and it can be so complicated to figure these situations out.\r\n\r\nI also was thinking of a commode, especially because if she used the commode at night, you would have an idea of how much she's urinating. You would also know that she's getting up at night to use the bathroom. Any chance she would agree to use the bedside commode? Perhaps you could present this as a temporary solution just for the two of you to get a better idea of whether or not the new med is working.\r\n\r\nYou can get mats which a sensor which could alert you when she gets up. This will give you an idea of an option: http://www.amazon.com/Bed-Alarm-Long-Term-Sensor/dp/B00489SJ4S\r\n\r\nPlease keep us posted on what you figure out. And, if you need to bounce off more ideas, just let us know. :)

LilMagill

Thanks, Jean, for the doorbell idea! I think that is more along the lines of what I'm looking for, but I didn't know it existed. But I realize it is only a temporary solution.

LilMagill

Thanks for the advice, Yolanda and Jan! We actually have a bedside commode that is currently in service as a shower chair. Right now she prefers to just go to the bathroom, but we do have that option.\r\n\r\nThanks, Jan, for explaining how Life Alert works. We have cell phones, but even if I put it beside her bed every night, she wouldn't carry it to the bathroom. . . I need to keep looking for the right solution. And thanks for sharing about your mom. I guess I'm in a transitional phase - when her memory is totally gone, I won't expect to get information from her, but now I still do, but I'm never sure how well I can rely on it. \r\n\r\nI'm about to go downstairs and see how last night was for her - fingers crossed it was not too bad.

Jean

LilMagill, \r\nOh how heart wrenching it is -- to watch and wonder how much you mother memory is really failing. And to try to sort out symptoms when she can't accurately remember and report them, ug…\r\n\r\nAs far as safety alarms… I don't know much about them. Do you want something that she wears so if she falls she can call you?\r\n\r\nOne thing we did when my mother-in-law was fairly mobile and still cognizant enough to use, was a remote control doorbell to call us when she needed us. We put one on her bed stand and one stuck to the bathroom wall next to the toilet paper. But that wouldn't help if you are worried about falls. Here is a link to the one we use: http://www.caregiving.support/tips-and-tools/do-it-yourself-call-button\r\n\r\nOne thing to consider is how well she can use it. I worked briefly at an assisted living facility. They actually had several residents with significant dementia/memory issues that hadn't yet been moved to the memory unit… (trying to keep apartments full). All the residents had alarm buttons to wear around their necks, but some would refuse to wear them insisting they didn't need, others would forget to put them on, and sometimes not remember they could use them.

jan

Hi, you sure have alot of different issues going on right now. One issue is the security device. We use Bay Alarm, but it, like Life Alert, is going to alert the alarm company switch board if she pushes the button, and then the switchboard alerts whomever is on her list of contacts, be it you, or the police, or ambulance, based on need. And those systems have monthly fees. I was considering an old-fashioned walkie talkie or pager for my mom, so she could communicate with just me. But she progressed so quickly in her dementia to the point where she couldn't turn on any device or even answer the phone so even those are out. I just have to stay in the same room with her. \r\nAs to you mom's sense of time, I know exactly what you're talking about. You have to look for all the clues and not just what she's saying. My mom's sense of time is completely out the window. Like yesterday, I've been trying to monitor if she has regular poo's. I give her a fiber supplement every day but still not 100% sure they have worked (she is still going to the bathroom by herself). She woke up and was telling me her stomach hurt, this and that. But she didn't exhibit any other symptoms of pain, she had a great appetite, she looked rested on her face, she didn't have a fever. I'm not ignoring her complaint but I'm attributing it to a dream/dementia Soup Da Jour. You have to fly on instinct so much here. Not easy.

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