Question about dementia.

Discussion in 'Off Topic [BG]' started by Mike JV, May 25, 2020.

  1. Mike JV

    Mike JV

    Mar 19, 2019
    I did a search and saw how some of you are dealing with aging parents who have dementia, so maybe you can shed some light on this for me.

    My mom is 92 and lives in an apartment in a senior complex. She's not in assisted living but is headed that way. Witin the last year her dementia seems to be getting a bit worst. One big thing I've noticed is how she mentions "other people."

    Example. About 3 weeks ago she took a fall (didn't break anything) but was in the hospital overnight for observation. I picked her up the next day and asked her how did she fall. She said "someone left a box in the living room with some books on it. I was trying to move it and that's when I fell." (There was no box with books on it.)

    Because she has trouble walking, she has 5 remote phones placed in various locations in her apartment. I'm always reminding her she has to remember to put the phones back in their chargers when she's done so they'll charge back up. She said "well when other people are here and use the phones they don't put them back."

    I could go on but you get the idea. Is this a common thing that people with dementia experience? Other people? I'm never cross with my mom and I'm dealing with this with patience and love. I'm just trying to better understand this.

    Thanks you for your time.
  2. Michedelic

    Michedelic MId-Century Modern

    Yes, sorry, it’s quite common. I wish I could be encouraging, but I’d be doing you a disservice...time for a reality check. It’s not going to get better, it’s likely to get worse, and it’s going to be heartbreaking and frustrating. The sooner you come to grips with all that, the better it will be for your own mental health. You may catch yourself thinking or saying things you wish you hadn’t. Just let it go, including any lingering “mom issues”, because, after a while, she’s not going to be the woman you knew(if it hasn’t already started to happen). It’s becoming a bit of a cliche, but the child becomes the parent.
  3. Copperhead

    Copperhead Still creakin' around. Supporting Member

    Jul 29, 2018
    I've dealt with a parent with dementia and I'll keep my reply short.
    Expect irrational behavior. It has no rhyme or reason or predictability.
    If you try to make logical sense of it it will make you crazy.
    You just have to roll with it and be kind and loving.
    It will tear at your heart to see your Mom deteriorate mentally.
    Best wishes in dealing with it.
    ajkula66, Joedog, neurotictim and 3 others like this.
  4. Killed_by_Death

    Killed_by_Death Snaggletooth Inactive

    My aunt believes strangers are "breaking in" while she's away & rearranging things or just stealing knick-knacks.
    She's been claiming these sorts of things across two homes, & at the first home she was claiming they had the keys to get in.

    Well, after the move it was obvious it was all in her mind, but she can't admit to it. My uncle, her brother, who is also her power of attorney had tried speaking to her about it, but she just goes off & claims it's REALLY happening.
    She has gone so far to get the police involved, but I think they are just playing along, but then they do stupid things like telling her it could be a gang. However, they might not be telling her that & she's just imagining it, like everything else.

    I've had to distance myself from her, Covid-19 is my excuse for now, but I'm not sure what my excuse will be when things have gone back to normal.
    Once she called me & said she had something serious to speak to me about, some meat was missing from her freezer.

    She also believes someone is listening to her phone calls & follows her around according to the conversations on the phone, including the bank.
  5. Mike JV

    Mike JV

    Mar 19, 2019
    Thank you Michedelic for you help. Very much appreciated. Now that I'm newly retired I've been able to go see my mom 3 times a week. Technically I'm not supposed to be over there due to the virus, but her doctor deemed this a medical necessarily and so I'm allowed in. I've been doing her shopping, been cooking meals for her, making sure she's taking her medications and spending a bit of time with her. She's lonely and I've been trying to encourage her to go and talk to some of the others who live there but she always has an excuse and won't do it....and still talks about how lonely she is. I'm doing the best I can for her right now.
    JRA and P_Robyn like this.
  6. Mike JV

    Mike JV

    Mar 19, 2019
    Oh man, I feel for you brother. Sorry to hear about all of this.
  7. Mike JV

    Mike JV

    Mar 19, 2019
    Thank you too Copperhead. I appreciate you letting me know of what could happen. It will better help me deal with it if it comes down to it.
    Copperhead likes this.
  8. Gorn


    Dec 15, 2011
    Queens, NY
    The last time I saw my father's father, he grabbed me by the shoulders and started screaming at me in Polish about something my dad did 30 years before I was born. He didn't last much longer after. Scared the hell out me. I was nine or ten and saw what can happen to a man's mind once he's been around for eight decades.
  9. Paradigm


    Apr 10, 2019
    And be cognizant of “sundowners”. This comes from my 12 years as Director of Durable Medical Equipment for Hospice. Often folks with dementia will get very confused during transition times- sunset being one- and can get agitated. Just don’t Take it personally. It’s rarely about you or actual events. Stay well brother...
    bobba66, P_Robyn and Michedelic like this.
  10. viribus

    viribus Gold Supporting Member

    Jan 1, 2011
    Pacific Northwest
    I never actually learned to play very well
    Is dementia an official medical diagnosis for her? Or is it presumed?

    The reason I ask is my mom had a lot of serious medical issues in her last few years. She was in and out of the hospital numerous times.

    One time she was given morphine in the ER for some reason related to pain management. I don’t recall specifics. Anyway she had what’s called a paradoxical reaction to the morphine. Instead of sedating her or alleviating pain, it caused her to become delirious. It was bad enough that they admitted her to the hospital psych ward.

    For a couple days when I visited her, she insisted there was a strange man roaming the hospital and exposing himself. She was adamant that there was a secret door into her room that the guy used to enter and leave.

    Eventually she returned to more or less normal. There was no explanation for her little episode except a bad reaction to the morphine.

    My point is, is she on a lot of random medications? There could be something exacerbating her problem. Years go by and someone is taking 10 different meds prescribed by multiple doctors. But nobody is really sure any more why they’re all being taken.
    ajkula66 and P_Robyn like this.
  11. bobyoung53

    bobyoung53 Supporting Member

    The rate at which dementia progresses is different in everyone, my mother in law is 91 and lives with my wife and I and she has "spells" where she'll call for her deceased family members. But the progression with her has been pretty slow, she's lucid most of the time. Another thing that happens is when someone with dementia gets tired it will temporarily get worse, it's called sundowning but I don't believe it really has much to do with the sun going down, naps can help with this, many people get tired during late afternoon and dementia patients start to lose it.
    I was a psychiatric RN and my last job before I retired was in a Geri-psych unit, the majority of patients were dementia patients and they can also get agitated at times when it gets more advanced, don't be afraid of having her take any medication doctors may prescribe as most of them will get to the point of needing it, of course again depending on the progression which just means how much worse she is getting in what amount of time. Make sure she eats, takes her medicine, gets enough rest and does things to occupy her mind, TV can really help for example. If we leave my wife's mother sitting alone in her room, that's usually when her mind will start to wander for example, we will then bring her into the living room and sit her in front of the TV loud enough for her to hear it and she usually calms down. We also have benzos we'll give her and she gets a very low amount of a mild antipsychotic at night, both of these meds really help her. People with beginning dementia do much better with company, other people, patients etc. Dementia is different than and usually much slower progressing than Alzheimer's and much less severe although not always, many people your mother's age can live out their lives with management, don't try to do it alone, it can become too much, again depending.
    You might want to have her evaluated by a psychiatrist who specializes in dementia just to know what's going on and get some advice on how to handle her and maybe get some kind of medication(s) for her.
    HeavyDuty and Michedelic like this.
  12. bobyoung53

    bobyoung53 Supporting Member

    It sounds like she needs to be evaluated by a professional and maybe inpatient, it could save her life.
    bobba66 and OldDog52 like this.
  13. hbarcat

    hbarcat Supporting Member

    Aug 24, 2006
    Rochelle, Illinois

    I worked as a CNA in a nursing home and almost half of the residents had some form of dementia. It is very common for dementia sufferers to believe they are being visited or harassed by mysterious people. While entirely products of hallucination, these visitors seem real to the person with dementia and it is useless to try to argue with them. There is no way to convince someone in this state of mind that the hallucinations aren't real.

    You said you're never cross with your mom and it's great that you've found the internal strength and wisdom to keep from getting frustrated and becoming angry at her. I've seen the families of dementia sufferers, and even professional caregivers, losing their temper when dealing with this irrational behavior.

    For those who are new to helping those with dementia, it might seem as if treating them like a child would be a helpful strategy. Children commonly believe in bizarre or irrational things. They have imaginary friends which they sometimes blame for causing accidents or getting them into trouble. Patiently explaining to your child that an invisible bear that threw a toy across the room and broke a window doesn't make any sense and you better stop it with the nutty excuses eventually pays off as the child matures and embraces reality.

    That won't work with dementia patients. In fact, the hallucinations almost always get worse over time. When my grandmother was diagnosed with Alzheimers, I had her move in with me so my wife and I could take care of her as long as possible outside of a nursing home setting.

    It turned out to be too much stress for my wife. My grandmother's irrational and sometimes dangerous behavior, made it inevitable that she was placed in a nursing home.

    I obviously don't know any specifics about your mother's condition but if she is living alone and unsupervised for extended periods, and she is frequently talking about strangers visiting her and moving things around her house, then there is a real danger of her being injured (or worse).

    My great aunt lost her life when she started a fire in her bedroom which got out of control and it destroyed her entire apartment. She was known to talk about "spies" breaking in and stealing her "secret papers" and a few times she even put her mail in a trash can and set it on fire so these mysterious strangers wouldn't steal it. For some reason, no one stepped up to the plate to get her into a living situation where she'd have regular supervision.

    I wish you the best in the future and really hope you all can stay safe and healthy as well as can be expected given the circumstances.
  14. Killed_by_Death

    Killed_by_Death Snaggletooth Inactive

    Money is the reason, "regular supervision" doesn't come free, and far from cheap.
    P_Robyn likes this.
  15. IamGroot

    IamGroot Inactive

    Jan 18, 2018
    Nicely said.
    I've done this rodeo .
    OldDog52 and Copperhead like this.
  16. Bent77


    Mar 6, 2013
    Desert, Colorado
    This hit home, as my MiL had a major stroke, and lived 6 years after with dementia. It took all of us awhile to learn this

    Good advice
    Copperhead likes this.
  17. keyboardguy

    keyboardguy Supporting Member

    May 11, 2005
    My Mom passed away 3 years ago at 96..
    She had Alzheimer's and lived her last 2 years in assisted living. (It was a "Five Star Premier" facility; very nice place)
    She never made it to the 'dementia' ward of the facility, (which is not a pleasant place to visit, I assure you) but the last year we hired 2 private caregivers so she would have someone there 16 hours of the day. She had to be watched, as she would wander into other peoples rooms.
    It was costly but we were fortunate to have the resources.

    The last year she had to be under medication and reverted to a child-like demeanor. When I would visit after work, she would watch on TV either basketball or Family Feud with Steve Harvey. I think she liked the sounds and the lights...

    As others have said, it will not get better. Just be there for her and cherish every day....

    bobba66 likes this.
  18. Mike JV

    Mike JV

    Mar 19, 2019
    Thank you all for sharing your stories and for your advice. It's very much appreciated and gives me a better understanding.

    Mom's current situation is: she lives in a senior apartment complex, but she's not in assisted living. (Those facilities are there in another section). It's a very nice complex too. She seems to be sleeping more and more. Goes to be around 10 PM, gets up around 10 AM, eats breakfast and goes back to bed around 11 or noon for 1 to 3 hours. When she finally gets up she watches TV and keeps falling in and out of sleeping while shes sitting there.

    She's somewhat unstable when walking and uses either a cane or a walker when she remembers to use it. But she did take a fall about a 1 1/2 years ago at the last place she was living at and hit her head on the floor. She was scanned and x-rayed a few times since and while nothing shows up she's been on a slow spiral down since. She's on about 8 different medications, some of which she takes in the AM and some in the PM. But she doesn't always remember to take them. She has gotten better with them since I've been going over there. Some of my brothers have been calling her and they also remind her to take them, but there's times she told them she did but then she forgets.

    She keeps talking about how lonely she is and we keep encouraging her to go downstairs to talk to some of the other tenants but she won't do it. I keep telling her they're not going to come knocking on your door, you have to make the effort to make some friends here. She always has an excuse. She was like that at the last place she was at but she did make friends with the woman who lived next door to her. So she can do it if she really wants to. I kinda know where shes coming from because I'm an introvert, but I do have a few friends due to me making the initial effort. As shy as I am I have no problem talking to strangers. Mom was always more outgoing than me but now there's just no desire or effort on her part even though she's lonely.

    Her hearing is also shot. She has hearing aids but at times they seem useless. She had an appointment with her ear doctor but the virus showed up and that was cancelled. I'm going to be calling him soon for a new appointment because she really needs new hearing aids. Talking to her on the phone is impossible. She can either barely hear me or she can't hear me at all.

    About 2 years ago she asked if she could come and live with me. Of course I told her yes but I made it clear to her that I'm not going to be her constant "TV watching buddy" because that's what she would want and expect me to do. She didn't say anything but I could tell by the look on her face that she didn't like that response at all. (She's my mom. I know her!) Of course I would talk to her but as said before, I am newly retired and have a great many things to do at home that I have put off for years because I didn't have the time to do them. I'm 67, am dealing with my own aches and pains and my fear is if I don't get moving on these things then there may come the day when I'm not able to do these things. Is that selfish?

    I also play either guitar or bass at church even though its on hold due to the virus. When I do play I give those songs my absolute all which means I'd be spending many hours in preparation for. I know she wouldn't like that (she would feel ignored) but that's the way it is. Again, is that selfish?

    There's also the possibility that if she came here that she wouldn't like it for a number of reasons.

    I'm a bit torn right now with what I should do.
  19. My daughter works as a CNA in a hospice/assisted living home and deals with this regularly. I hear about it frequently; sometimes the stories are funny, but more often than not they're sad or dangerous. They are trained to "roll with it" as long as the patients aren't endangering themselves or others, rather than try to reason with them.

    As many have said, it's not going to get better. That sucks, and you have my sympathy, but that's it in a nutshell. And of course you want to take care of your mom - I think it speaks highly of you that you'd consider it rather than just casually handing her off to a care facility. But as you said, you aren't exactly a spring chicken. In my opinion, it's not so much whether or not you can get the random odds and ends done at home, but whether or not you are equipped to deal with this as it progresses.

    I don't know you - you might be a champion triathlete and able to put me to shame - but I do know at your age, many people are busy dealing with their own health issues, never mind a parent's. What happens if you have a health emergency? What happens if you have to become a caregiver for your wife, or vice versa? Could you still handle an elderly mother with dementia? Whether or not the other stuff is selfish is kind of a moot point - can you safely provide a higher 24/7 quality of life for your mom over the next several years than the assisted living place?

    Obviously I can't speak for all homes, but my kid (and her colleagues) are professionals, and they are better trained and equipped to handle dementia patients than virtually any home care by family members, no matter how well-meaning or intended. I know there are horror stories about some of those places, so your mileage may vary.

    I wish you nothing but the best no matter what you choose.
  20. Mike JV

    Mike JV

    Mar 19, 2019
    The way it stands right now...and regardless of what I do, I'm in the best position to deal with this regardless of where she lives. I'm 22 miles away from her. I'm the oldest of 7 boys. With the exception of 2 brothers out in Arizona the rest of us are in Michigan. One brother lives up north about 800 miles away, so he's out. One is about 50 miles away from mom but he has his own issues (anxiety) that he's dealing with. Doesn't like getting too far away from home and he's been that way for years and I respect that. My 2 other brothers live a lot closer to her than I do, but there's some tough, stupid "family issues" with one who won't see or talk to mom at all. My youngest brother lives about 3 miles from mom and says he's willing to help, but deep down he'd rather not. It will be 4 years since my dad passed away on June 22 and he took dads death the hardest. I mean, it devastated him. I believe seeing mom deteriorate is tougher for him than for the rest of us and it no doubt brings back thoughts of dad in his final days. If this is the case then so be it and I don't hold it against him.

    Mom's doctor said she needs to be in assisted living. As mentioned, there is an assisted living wing where shes at so if it comes down to it she could probably get in there without too much trouble. She more than has the money for it too. One good thing is that my one brother in Arizona takes care of all of her finances. He's the best one of us to do this and is the most trustworthy. He came up from Arizona after our dad died and took care of all business that needed tending to. I mean, he took care of things that I never would have thought of. I'm glad he took it on and he and I talk at least once a week.

    In the meantime I will continue to cook good meals for her and will visit her 3 times a week. Shopping for her, taking her to the doctor and cleaning her apartment is no big deal and I'll gladly do it. But I do believe right now its paramount that she start walking more to strengthen her legs and that she gets downstairs to meet some people. I believe both would do her a world of good.

    The worst with mom right now is that she sometimes forgets to take her meds and she gets the phones and TV remote mixed up with each other. She seems to be getting more and more things mixed up.
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