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  1. #1
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    Dementia is taking its toll

    My mom has dementia. It is early on so for the most part she is happy and healthy, but has her moments.

    The following is not to poke fun at her or others in her state. If anything, it makes me appreciate her even more. Thought I might share some of her exploits. She is after all my mom, one of the most important women (to me) to ever walk this planet.

    A couple of weeks ago I start getting calls from random people. Mom has taken out the telephone directory and is calling people and asking them to take her to her Dr. appointment. She tells them my name/telephone number and that I am too busy to take her and would they please pick her up. Good for her initiative but she didn't have an appointment...


    This morning I got a call from her brother, checking on her asking how she is doing with her cancer. I did not know what was going on as she is cancer free. A couple hours ago I get another call from a neighbor checking on her as well. It seems that last Monday she calls her pastor and all of her brothers and sisters. She tells them that she has cancer and it has spread throughout her lungs and organs and to pray for her.

    Last night mom calls me telling me she is having a heart attack. I get this call almost weekly and she has been checked 6 times since June. Her heart is always fine. She does suffer from acid reflux and causes gas to build up. I see that she has just finished off a bowl of icecream (she is lactose intolerant but ignores the Dr's advice to cut it out). I pat her on the back for a few minutes and out comes this BEALCH...She has immediate relief.

    She never remembers that this happens at least 3 times a month and always panics.

    I know this will get worse and will be very sad for her. We are going to her sister's funeral this weekend. She died from complications of dementia after a 2 year battle with not having any clue who she was.
    Not in the mood?! Mood's a thing for cattle and love play... not fighting.

  2. #2
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    Tough situation, but you seem to be taking it well.
    Make the most of the lucid moments.
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  3. #3
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    Sorry, tough situation......be kind. Mother in-law came to visit for a month...alzheimer's. Put dish soap in our dishwasher (ruined), turned the thermostat to 99 degrees and cranked the oven to broil...oven door was wide open. This was day one. At least she did not kill the pets....I hope you have support, if not, hire someone who can check in on your mother....ugh. Soo sorry and can somewhat identify with what you are dealing with.

  4. #4
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    dementia is a *****.

    my dad's was fairly pronounced...watching his memory deteriorate created some very sad moments such as when he became disoriented and didn't realize that he was in a nursing home. he would ask when he could leave the 'hotel' and go back home to be with my mom (who had passed years earlier)...

    but there were occasions when I had to almost laugh at the situation. my neighbors invited us to share Thanksgiving with them. my dad ate like a horse and really packed away the food. when I returned him to the nursing home shortly after the conclusion of the meal, he told me I needed to get him to the dining room because he didn't want to miss dinner.

    his long-term memory was amazing tho...he could still name most of the sailors in a photo of his WWII ship's crew, remembered all the details of its length, displacement, armaments, ports of call...

    sometimes, we'd have an hour-long chat that consisted entirely of him posing the same question repeatedly. I'd answer and when finished, he'd would simply pose the identical question again.

    it's a bizarre disease with tragic results...I'm really thankful he never got to the phase where he didn't recognize me.
    Last edited by Oxtox; 03-10-2016 at 01:01 PM.

  5. #5
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    Quote Originally Posted by racerx View Post
    My mom has dementia. It is early on so for the most part she is happy and healthy, but has her moments.

    The following is not to poke fun at her or others in her state. If anything, it makes me appreciate her even more. Thought I might share some of her exploits. She is after all my mom, one of the most important women (to me) to ever walk this planet.

    A couple of weeks ago I start getting calls from random people. Mom has taken out the telephone directory and is calling people and asking them to take her to her Dr. appointment. She tells them my name/telephone number and that I am too busy to take her and would they please pick her up. Good for her initiative but she didn't have an appointment...


    This morning I got a call from her brother, checking on her asking how she is doing with her cancer. I did not know what was going on as she is cancer free. A couple hours ago I get another call from a neighbor checking on her as well. It seems that last Monday she calls her pastor and all of her brothers and sisters. She tells them that she has cancer and it has spread throughout her lungs and organs and to pray for her.

    Last night mom calls me telling me she is having a heart attack. I get this call almost weekly and she has been checked 6 times since June. Her heart is always fine. She does suffer from acid reflux and causes gas to build up. I see that she has just finished off a bowl of icecream (she is lactose intolerant but ignores the Dr's advice to cut it out). I pat her on the back for a few minutes and out comes this BEALCH...She has immediate relief.

    She never remembers that this happens at least 3 times a month and always panics.

    I know this will get worse and will be very sad for her. We are going to her sister's funeral this weekend. She died from complications of dementia after a 2 year battle with not having any clue who she was.
    My Mom died from Alzheimer's 3 years ago. Before things got really bad she would come over to our house and do some goofy things
    - she would take dishes out of the dishwasher and wash them by hand and ask why we kept putting dishes away dirty
    - she took a piece of kibble out of the dog's bowl, ate it and said "that food it not very good"
    - she would just randomly get up and start cleaning things at our house

    After she died, we were going through her things. She kept a log of things she wanted to remember. It was clear that she knew she was losing her memory and was trying not to forget things. She wrote things like "David's daughters names"; "David's dog's name", etc. I was one of the last people whose name she could remember. This really annoyed my sister who by that time was known as "the girl" .

    My advice to you is to start thinking about how you will care for her when things get much worse. Having a game plan (I didn't have one) will make the hard transition easier

  6. #6
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    When my father died, my mother continued to cook for him.

  7. #7
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    you have your yes wide open and are dealing with a tough situation well. Can you switch the icecream to a non lactose one? it might be more comfortable for her. Not sure what your living situation is but the more people involved the better I imagine

  8. #8
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    My mom's in a nursing home. I visit her every weekend. I get to watch all the other residents, including those with dementia.

    The staff that must care for them-I don't care what they get paid; it's not enough.

    The best I can do is:

    I bring the Sunday paper and read it while my mom reads The Enquirer or eats some food I've cooked for her. One old guy asks for the sports page, so I give it to him every week.

    If I bring my mom a pizza (at her request, even though she's got no lower teeth!), I'll offer a piece to the some of the residents who I know don't have dietary restrictions. It makes their day after eating so much institutional food.

    I've also made extra homemade food for my mom's roommate.

    Lastly, I'll bring the staff pizza or KFC occasionally. I try to not forget the workers in the laundry or the kitchen staff either.

    They're all saints.
    Last edited by Peter P.; 03-10-2016 at 04:56 PM.

  9. #9
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    I was in this place about 2-3 years ago. I'm an only child and it took a solid year just getting her all setup with medicaid, medications, doctors, homecare, etc. as she has nothing. I have her safe, clean, fed, daycare a few times per week, meds and most important in her own home. I setup a home monitor camera so I can peek in to make sure all is well and I call 2x/day just so she hears a familiar voice. Feel free to message me if you ever need any advice on the entire thing...and fwiw do look into namenda, nuedexta and exelon while it's in early stages.

  10. #10
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    Quote Originally Posted by chuckice View Post
    I was in this place about 2-3 years ago. I'm an only child and it took a solid year just getting her all setup with medicaid, medications, doctors, homecare, etc. as she has nothing. I have her safe, clean, fed, daycare a few times per week, meds and most important in her own home. I setup a home monitor camera so I can peek in to make sure all is well and I call 2x/day just so she hears a familiar voice. Feel free to message me if you ever need any advice on the entire thing...and fwiw do look into namenda, nuedexta and exelon while it's in early stages.
    Can you please provide more info on the home monitor camera, I was thinking about setting one up on my mothers house and I would appreciate some guidance. My hats off to you for taking care of this tough situation and offering to help others as well.

  11. #11
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    I went through this with my mother, who additionally was secretive, combative, and both verbally and physically abusive. We didn't appreciate how far gone she was until my father took ill and was no longer around. I once had to retrieve her from the Central Park (NYC) precinct after they found her sitting on a bench late evening. She lived in Northern NJ.

    I suggest you talk to an attorney, preferably one versed in Elderlaw, about getting Mom's affairs in order while she's still competent to sign things. Sounds like you're going to need power-of-attorney in the near future.
    It's Mueller Time

  12. #12
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    My Dad should be in assisted living . I spend about 2 days a week at his house, a cleaning lady stops by once a week and the neighbors check in on him while I'm not around. It is stressful, a lot of the same questions over and over. He lies about everything.

  13. #13
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    Quote Originally Posted by Roland44 View Post
    Can you please provide more info on the home monitor camera, I was thinking about setting one up on my mothers house and I would appreciate some guidance. My hats off to you for taking care of this tough situation and offering to help others as well.

    Sure no problem...I'm absolutely happy to offer advice however it may help.

    The home camera really isn't magic...I did the Time Warner Cable Intelligent Home install since it was quick & painless and if there was ever a problem I could just call them to fix it since I don't live close.
    Home Security & Home Management| IntelligentHome from Time Warner Cable
    It's their home security package which comes with a camera that's night enabled, motion sensor and a few door sensors. The setup comes with their smartphone app so I can check the camera anytime/anywhere. I can also check the door sensors, etc. in case she wanders (she has full time homecare now though so not as urgent but she can still wander when they're out). It can also optionally notify me if any sensors are tripped. I think it was about $150 installed and not much per month. FWIW there are definitely cheaper systems but I didn't want to install & maintain it on my own since I'm not nearby.

    A few other notes...
    1) I can't stress this enough...make sure to get all paperwork now...doctors + medical history, dentists, bank accounts, checkbooks, power of attorney, etc. This ALL gets exponentially harder as time goes by.
    2) Get her to a neurologist asap...there are drugs (namenda/nuedexta/exelon) that can slow the progress. The sooner the better!
    3) Find nearby friends/neighbors...anyone willing to help in a pinch.
    4) Just in case, look into grocery deliveries...you don't want to steal independence but at some point being able to deliver groceries can only help. My mom is in NYC so I can easily deliver via Fresh Direct and do all the grocery shopping.

    Please ask if anything else needed....

  14. #14
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    My mother is difficult to communicate with, always has been, but adjusting her meds seemed to help somewhat. After her hip surgery and rehab, she was calling doctors all the time, thinking she had to make appointments......

    Luckily, she's got a great physical therapist and my father is able to drive her around (though they're separated.) For now. Dad has more trouble walking than she does at this point!

    My father assures me that they're able to take care of themselves, but they didn't lead the healthiest lifestyles, so I'm worried that they're aging faster than average.

  15. #15
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    something that no one has mentioned and it makes a HUGE, HUGE difference. We found that when my mother in law had particularly bad spots, it was nearly always an indication that she had a urinary tract infection. This is NOT at all uncommon and is more the rule than exception (as corroborated by multiple staff at the facility and several doctors)

    Best of luck, I thank my lucky stars that my mom at 87 is sharp as a tack and my dad died before/instead of having his mind waste away; after watching what my mother in law went through.
    Of course I'm sure...that doesn't mean I'm right.....

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  16. #16
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    Quote Originally Posted by Touch0Gray View Post
    it was nearly always an indication that she had a urinary tract infection
    This is what happened with my mother, except it created additional symptoms that caused her building to call an ambulance. While she was in the hospital I asked that she be evaluated by a social worker, who in turn called in psychiatrists, at which point she was deemed incompetent and PoA kicked in.
    It's Mueller Time

  17. #17
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    Quote Originally Posted by Touch0Gray View Post
    something that no one has mentioned and it makes a HUGE, HUGE difference. We found that when my mother in law had particularly bad spots, it was nearly always an indication that she had a urinary tract infection. This is NOT at all uncommon and is more the rule than exception (as corroborated by multiple staff at the facility and several doctors).
    good point about the UTIs...my dad had got them frequently and they do exacerbate the symptoms of senility.

    when the UTI was in play, he often seemed more combative as well as more forgetful and disoriented.

  18. #18
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    Quote Originally Posted by mtrac View Post
    I went through this with my mother, who additionally was secretive, combative, and both verbally and physically abusive. We didn't appreciate how far gone she was until my father took ill and was no longer around. I once had to retrieve her from the Central Park (NYC) precinct after they found her sitting on a bench late evening. She lived in Northern NJ.

    I suggest you talk to an attorney, preferably one versed in Elderlaw, about getting Mom's affairs in order while she's still competent to sign things. Sounds like you're going to need power-of-attorney in the near future.
    This is good advice to the OP. I was able to get my Mom to sign PoA forms early on. Depending on your state, getting someone declared incompetent to gain PoA can be hard. If you have siblings it could be a flashpoint

  19. #19
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    My mom is really starting slip away due to dementia. My sibs are doing their best to look after her (I'm on the other side of the country)--but the stories I hear are pretty funny and pretty sad, like the time my sister helped her decorate the Christmas tree, and she later told my brother that she didn't know who the little girl was who decorated the tree with her, but that she was really nice.

    I agree with the UTI stories--also the stress of a couple of hospitalizations (and medication) have made her seem aggressive and barely competent, but on a good day she's in pretty good spirits--if not playing with a full deck.

    Probably the hardest thing to deal with has been the acrimony between my brothers and sisters about what choices to make about her care (she is adamant that she wants to stay in her own house),and the hard feelings about who is doing "more" to look after her.

    Still though they have done better than our long time neighbors, whose kids told the aged parents they were going on a drive, stuck them in a care home and sold the house in record time--which of course horrified my mother (who was still reasonably lucid at that point) who continues to exact the promise that we won't do that to her.
    Last edited by paredown; 03-11-2016 at 11:40 AM.
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  20. #20
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    I'm praying that the research on ultrasound treatment goes somewhere and can be applied to humans sooner than later.

  21. #21
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    Quote Originally Posted by mtrac View Post
    I suggest you talk to an attorney, preferably one versed in Elderlaw, about getting Mom's affairs in order while she's still competent to sign things. Sounds like you're going to need power-of-attorney in the near future.
    This^^

  22. #22
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    My mother passed away about 3 weeks ago due to complications of advanced Alzheimer's and dementia. I have a few points I would like to add:

    1. Plan ahead! It's really never to early to do this for aging parents or loved ones. Get your POA and EOL medical wishes documented. And as importantly, get your financial house in order. This will most likely require the assistance of a professional in this field. The costs associated with the type of care facility needed are astronomical. They will chew through even the best of retirement accounts in no time at all. When you plan ahead you can move assets around, and protect some of what they have spent a lifetime of hard work accumulating. Do this yesterday!!

    2. Provide any assistance you can to the main care provider. In my case, my dad cared for my mom for just about 5 years. I'm not sure how he did it without losing his sanity. I can recall visits to mom where I left in tears after only a couple of hours. After the fact we found out it was even worse than he let on. It is a complete 24/7/365 job after they reach a certain stage. Schedule regular days and times with other siblings to get dad out of the house and give them a break. We also had an "in-home" provider relieve dad 3x a week, who would help with bathing, house cleaning, etc.

    Such a terrible disease, my heart goes out to the OP and anyone who has had a loved go through this.

  23. #23
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    My father-in-law has it. He is in a nursing home now but we had to get his phone disconnected a while ago back for similar reasons. We visit him often during the week and sometimes the memory is on point and other times he thinks he is living 50-60 years ago. It is not easy.

  24. #24
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    Wow, I was noticing that with mom. When she has a UTI she is most difficult. I thought this was due to her being overall uncomfortable and made her mood more difficult to work with.
    Not in the mood?! Mood's a thing for cattle and love play... not fighting.

  25. #25
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    Quote Originally Posted by PixelPaul View Post
    My mother passed away about 3 weeks ago due to complications of advanced Alzheimer's and dementia. I have a few points I would like to add:

    1. Plan ahead! It's really never to early to do this for aging parents or loved ones. Get your POA and EOL medical wishes documented. And as importantly, get your financial house in order. This will most likely require the assistance of a professional in this field. The costs associated with the type of care facility needed are astronomical. They will chew through even the best of retirement accounts in no time at all. When you plan ahead you can move assets around, and protect some of what they have spent a lifetime of hard work accumulating. Do this yesterday!!
    What kills me is people "hide" these assets or transfer them to future heirs rather than use them to pay for elder care. Then this money is protected and who winds up paying for their elder care-THE TAXPAYER. Meanwhile, everybody in the family gets "their share".

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