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Medical Forum / Diseases and Disorders / Alzheimer's / March 2004Wild idea .. somebody help me shoot it down
long but interesting post describing a possible "system". We've talked about leaving them notes. Marginal help at best. My mother sometimes forgets to even READ the note. Even though many times IF she does she's still able to act on the instructions. One time I left her this great big note on the DINNER table going "If it gets too hot in here go turn down the heat as follows .." she got quite hot that day. didn't read the note. Many of us caregivers work, perhaps leave them at home alone. What if, while at work you wanted to make sure your mother 1) took a pill at 11:30 am 2) knew how to cut down the thermostat when it got too hot 3) watched her favorite show coming on at 3:30 4) answered the door to let the cable guy in at 4 5) etc, etc My mother loves her cell phone. Takes it everywhere, answers it. Sure I could call my mother all day, everyday and remind her of things to do like that but what if her cell phone would ring, she'd pick it up and a voice would go 1) Hi, I'm a friend of your son's. He wanted me to remind you to take your pill at 11:30. Please take it now. I'll check back later. later 2) Hi, it's your son's friend again. Have you taken your pill yet? if she answers "no" the voice goes "ok. I'll check back later after you've taken your pill". then later ... RING MOM -> Hello? VOICE -> Hi, it's your son's friend again. Have you taken your pill yet? MOM -> Yes. VOICE -> Excellent. Your son also wanted me to remind you that your favorite show comes on channel 12 in 5 minutes. Do you want to see that show? VOICE -> Yes. VOICE -> Ok. Go into the den, change the channel to 12, I'll check back in 5 minutes. MOM --> ok. then RING MOM -> Hello. VOICE -> Hi, it's me. Your son just wanted to say hello, hope your day is going well. My mom loves the cell, she loves getting calls and as you see, these calls act kind of like a virtual caregiver .. communicating vital information/instructions to her, keeping in constant contact. This could work via an automated computer generated voice telephony website. YOU would 1) Go to the site. 2) Decide what instructions you wanted to give your mother for the day. 3) Click "OK". 4) The computer would do the rest. At your defined times it would dial her number, repeat word for word in a computer generated voice exactly what you typed. 5) She would pick up the phone, hear the message and, optionally RESPOND, yes or no to questions asked by the voice such as VOICE -> Have you taken your pill yet? MOM ---> No. then the computer, getting NO for an answer would automatically reschedule a RE-call later to see if she had taken the pill. The possibilities are endless. The neat thing about it would be, YOU at work could simply go back to the website and visually SEE what has transpired during the day. For example you might see * Mother took her pill at 10:22 am * Mother watched her tv show at 11:am * No response yet about her letting in the cable man. Still making call attempts. Check back in 20 minutes. Totally automated caregiver. The computer in fact, if you didn't want to even check in at the website could EMAIL you the above information as it happened. You'd get an email going "Your mother said she took her vitamins at 3:27." Automated voice technology has evolved to the point to where such a system is possible. I think I could build it along with the required website. I'd have to charge a small monthly fee or perhaps by-use fee but to me such a thing would be invaluable seeing as how it's just me, having to go to work, leave her at home, try to leave notes or either call her manually throughout the day .. I'd simply let the computer handle it all. Plus, she'd love the calls, the company. She loves getting cell phone calls. She said she forgot to take her pill yesterday. I asked her ME -> What if your cell phone called you every day, reminded you to take your pill? HER -> I'd like that. any ideas? I know there's a lot of words here but, as we've seen, visual, note-driven methods aren't that effective. I forgot who it was here that told me that they can READ quite well but try and get them to ACT on what they just read ? Sometimes difficult. Does the same thing apply to real-time vocal instructions? This voice thing is different I think. Your loved one will have a new life with a new computer generated companion who will talk with her, look after her. You will have the peace of mind knowing exactly what's going on at home while you are at work by monitoring the website. The computer is precise, untiring, relentless, it can keep calling them back, keep getting answers from them, keep reminding them of things all day. Just like a telemarketer. For those worried about daytime cell minutes .. the system could be constructed so that if you are a Sprint user, the computer would use Sprint to call her. Sprint to Sprint calls are always 100% free. I think most of the other carriers now have that type of plan too. If your loved one had a Verizon phone, the computer would use Verizon to call her. Again, 100% free calls. Some of you may not be in my situation, just me, leaving her alone, me at work all day so it may not be needed by you as much. I'd love it. If I did setup a prototype you folks would be more than welcome to test it out for free. ok. let the constructive criticism begin :( Greg, Your ideas sound perfectly reasonable and good to a normal person, but let me provide you with the reality check as it relates to a person with Alzheimers. I would call my mother in law and ask her if she took her pill. She could say "yes" or "no" but YOU would still have no way of knowing. Why? Because she doesn't know herself!!!!!!! SHE has NO idea if she took her pill. She will say "yes," because she might remember she had taken a pill some other day, but she has NO idea if it was today. In actuality she hasn't taken a pill today. OR Lets say she DID take her pill, but her MEMORY is what is affected and she doesn't remember it, so she takes ANOTHER pill when you call. Then when someone else, (maybe a friend) calls and asks her if she took her pill, she STILL doesn't remember taking the first one OR the second one, so she takes ANOTHER. So now she has taken THREE pills that day and she is violently sick to her stomach, or feeling so dizzy and sick she can't get up from her bed. Maybe she is severely overdosed and it is a dangerous situation she could die from, but SHE has no memory of taking ANY pill that day, and when you call, she says she is "too sick to get out of bed to take her pill!!!!!!" THIS REALLY ACTUALLY HAPPENED to my mother in law. We bought the little boxes with the days of the week on them. FORGET about it. That didn't work. We had a neighbor who would come over and remind her to take her pill. The neighbor felt embarrassed because my mother in law would tell her she needed NO reminding, thank you very much... and that she could remember to take her own pills. Then the druggist finally called us refusing to refill her pills. She had gotten a refill only two weeks prior and she was in his store trying to get another refill and in frustration she told him to call us and explain to her son why she was being refused. She was taking them in such quantities, that she took a months worth of pills in two weeks! This could have been none one day, three another day, two another day.... we had no idea nor did she, how many she was taking in any given day. Sorry, to shoot down your idea so quickly, but believe me.... it could be a disaster. My mother in law did this quite EARLY in the game too. She was continent, she seemed rational in every way.... she was a little forgetful, and it certainly was not noticeable to everyone. She knew what she wanted for herself and her life, she knew who everyone was. BUT she was taking more than she was supposed to of all her medications. Everytime she thought of it, she would take it again. SHE couldn't remember whether she took her pills or not. Only when she had a neuro-psych test were the true deficits of her memory revealed. Bottom line is this: If your loved one has been diagnosed with Alzheimers disease, they CANNOT be trusted to take their own medication. If their memory is bad enough to be diagnosed with it, their memory is bad enough not to know when or even IF they took their pills. Sorry.  SignatureEvelyn (To reply to me personally, remove sox) > long but interesting post describing a possible "system". > [quoted text clipped - 167 lines] > begin > :( Again, like the notes, it might buy you a couple of weeks - but, having been through this, I know how very hard it is to really get your mind around the comprehensive nature of the cognitive impairment that is relentlessly progressing in your mother. You take abstract reasoning and symbollic stuff for granted - you can't assume she will retain the ability to "get" much beyond the immediate here and now of what she can see in front of her. Your mother may be able to use a phone now - which is a pretty abstract item - but don't expect that to last too long. Think it through - she has to understand what the ring means and what she is supposed to do about it, how to answer the call (i.e. push whatever button is required), presumably keep the cell phone with her (as opposed to putting it in the laundry hamper, the freezer, or an old boot out on the back porch). Then she has to be able to understand that the disembodied voice she's hearing is a person, understand the words, and get the connection between the words and what she is supposed to do. My MIL lost the ability to use a phone not too far down the road from where your mom is now. Even with putting numbers on speed dial on a regular phone with BIG BUTTONS labelled with the names of relatives, the whole idea got confusing to her. If she tried to call her sister, and her sisters husband of 50 years answered the phone, she wouldn't know who he was, despite him yelling - Dolli, its ME, its ERIC, its Norah's husband ERIC!! and she'd get all flustered and hang up. She lost the understanding that when she called someone and the phone rang at the other end, anyone in that house might pick up. Its like she thought the phone should have a direct pipeline directly to the person she wanted to talk to and no one else. Our answering machine also totally flummoxed her - she would never listen to the message (i.e. this is John, we're not home now, please leave a message). She'd hear his voice, and not understand why he wasn't responding to her. We got left many disturbing messages where she plaintively said things like "John, why won't you talk to me?" It wasn't just outgoing calls - Incoming calls also got to be very confusing to her. She wasn't sure how to answer the phone and would often get upset and hang up before you could convince her to listen to you long enough to get her to realize it was someone she knew (i.e. even my husband, her only son, would be yelling Mom, its JOHN, don't hang up, its your son John!!! Mom!!~!~). Further, you could not trust what she told you. If she said she'd done something or not done something, you had a less than 50-50 chance that what she told you was true. She often thought she was telling the truth, but she couldn't remember, and would make things up - so asking her if she'd had her lunch or taken her pill was a lost cause. I've told this story several times, so those who have heard it, skip this part. About a year after diagnosis, she was still living in her apartment with tons of arranged help such a housekeeper during the week, and us and other family close by, and we went away to our cottage for a few days over a weekend. She had been doing extremely well, and the social worker thought she was fine with the supports we'd arranged. I divided the antibiotics she'd been taking into sealed daily envelopes, each labelled with the day in big letters. I then called her 4 times a day long distance to tell her to take her pill (i.e. Its Saturday Dolli, open the envelope that says Saturday and take one pill... Then I'd call again, okay, its lunch time, take your next pill etc. And yes, she was reassuring me that she was doing exactly what she was told, and everything was fine. Then we got a call from her sister, who'd gone by to check and couldn't get into her apartment. My husband had to rush home (a 4 hour drive), get the super to break in and call an ambulence. She'd opened ALL the envelopes, mixed up all the pills, taken an overdose of them, and also had a bad reaction to them. Instead of calling anyone for help, she'd locked the door, put the chain on, and wouldn't come to the door or answer the phone (her sister could get the door open a bit and was yelling through the crack but Dolli wouldn't come to the door. Being sick from the pills really made her much more confused than "normal". She landed in hospital and we realized she needed 24-7 supervision. Mary G. > long but interesting post describing a possible "system". It's an interesting idea, for as long as the patient is capable of using his/her phone (why just cell phone? Wouldn't it work fine dialing a regular phone?) I think you could do an easy and quick test to see if recorded-voice reminders work: I've got a freeware program on my computer called Easy Noter Lite <http://www.easynoter.com> I just use it as a notebook/diary and an address book, but it does have a feature that allows you to play a recorded message at a prescribed time. You could use that to put a computer in your mother's house and just see if she'll respond if the recording tells her to do something; be there to observe whether she follows the recording's instructions or is just confused by it. Of course, you could also do the phone call idea manually at first - have a real live friend make the call (there are still old-fashioned live telephone answering services, and they will also for a fee do things like phone you in the morning with a wake-up call - I wonder if a service like that might agree to make phone call reminders). My father seems to be losing his ability to use his cell phone. I've got us on a network plan so we can call one another's mobile phones without using up our monthly minutes. When we switched providers a few months ago, I had to replace his phone (not compatible with the new network). I got one as similar to his old one as possible... but the power button is in a different location, and he's got it fixed in his head that he hangs up by pressing the power off button. That does disconnect, of course, but then I cannot call him a second time on it, because it's turned off. He doesn't always remember how to turn it back on, even if I explain, so basically we've got a system that lets me call him once on his cell phone, and then I have to come home and 'reset' his phone, turning it back on myself. A few years ago my father might've been able to write a program to do what you're proposing himself. -- Robert What about using a video hook-up to see if the patient follows through? > > long but interesting post describing a possible "system". > > It's an interesting idea, for as long as the patient is capable of using > his/her phone (why just cell phone? Wouldn't it work fine dialing a regular > phone?) Yes and Yes. Video hookup could work for pills and things. It would have to be physically monitored though. And regular phones work. Advantage of a cell in my case is that my mother can move around as she hears the instructions. And she always answers the cell because she's always near it. > What about using a video hook-up to see if the patient follows through? > [quoted text clipped - 4 lines] > regular > > phone?) Great idea---if only, if only, if only , if only it worked with all stages of AD.......I feel you haven't a clue yet!!!!! I wonder how many caretakers are thinkimg the same thing------- Sorry, I don't mean to be mean BUT Florence Thanks all .. excellent input and Florence says it all. Sometimes I wonder if my mother even has ad at all. If so I think it early stage. She knows how to use speed dial, answer the cell, keeps it with her always even checked on trailway bus schedules through their voice automated system. She routinely calls the bank and navigates through the menus to get to her bank account information. So, I guess, in my particular case, this would work .. for a while. She even knows about daytime/nighttime minutes. From all the posts it's kind of disconcerting to know for a fact that there is no way to stop the progression. At her stage the voice reminders will work. Today from work I am going to have to manually phone her around 11:00 to remind her to cut the heat down, which she'll do. The system could do that for me. I guess in the worse case scenerios the system would serve as just that. Some kind of "alarm" even if the message is simply "time to wake up". No yes or no responses required. Evelyn made a good point about depending on yes/no answers for people in later stages of ad. Just because they say "yes, I took my pill" doesn't mean they actually TOOK the pill. > Great idea---if only, if only, if only , if only it worked with all > stages of AD.......I feel you haven't a clue yet!!!!! I wonder how > many caretakers are thinkimg the same thing------- > Sorry, I don't mean to be mean BU > Florence At some point AD people begin having trouble even swallowing meds, let alone knowing if they took a pill when they were supposed to. We have to watch my MIL take her pills and make sure she has her drink in her right hand and pill in the left. Otherwise she puts the pill in her mouth and then forgets what she is doing and eventually chokes. We can't leave pills sitting around in the open or invariably this will be the only time she'll take a pill without prompting. The other day I put 2 calcium pills out on the counter and my MIL asked what they were. I replied one of them is yours and one is daughters, but they are for later in the afternoon. The moment I told her this I thought to myself that I should hide both pills but to appearances she was having a good day and was fairly lucid. After again reminding her to not take the pills I went in the other room. When I returned in a few minutes both pills were gone. No point in even mentioning what happened to her. I set her up for failure and this was my fault. If I mentioned her having taken the pills, she wouldn't have known what I was even talking about. Don't set an AD person up for failure and it will save both of you a lot of bad feelings. |
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