My family has been taking care of my grandmother (85 years old) for about 3 years now. She displays frequent bouts of confusion and paranoia and I'm not sure if she has dementia. I know that symptoms of dementia vary by patient but I'm just curious if this sounds like dementia to people with experience?
My grandmother has been living with us since my grandfather passed away about 3 years ago. Technically she has her own apartment but refuses to sleep there alone because she is "afraid". At first, she spent the days at her place and my parents picked her up around 6~7 PM after work since she hated being alone after the sun went down.
She's just gotten worse and worse about being alone since then and now takes the bus to our house at noon every day, effectively meaning that at least one person has to stay at home every day to let her in. It would be one thing if it was just that but her paranoia has been a constant. She often makes us drive her back to her place to "check" on various things: her rice cooker, the stove, the faucet, the windows, the lights, the list goes on and on. She has good days sometimes but other days she expects us to drive her to her place (a 30 minute drive each way) 3-4 times a day. If we refuse she will start crying and says that she will die otherwise or says that she'll just walk home (it would take hours!). She's alienated all of her friends back at her apartment complex because she calls them 6-8 times a day about whether her door is locked/her lights are off/etc.
The biggest incident was in late 2016 where she was very anxious about her rice cooker being plugged in. She had already been back to her house 2-3 times that day to check herself. My father went with her and checked as well. We all knew it was not plugged in. Our family was going to a movie and she pulled me aside and asked if I could drive her back to her place to check. I told her no since we were literally standing inside the theater and had already bought tickets. As soon as the movie ended she started causing a scene in the parking lot and threw herself onto the ground and said we had to take her to her apartment or she would die right then and there. When we got to her place, her rice cooker was CLEARLY unplugged. I even put my hand inside the cooker and found it to be cold - it hadn't been plugged in all day. But she insisted that it had been left plugged in and that it was a good thing we came back because otherwise her apartment would have burned down.
There haven't been any public tantrums since then but she has paranoia episodes at least 3-4 times a week. And she constantly lies about appliances being left plugged in. She'll also lie about the randomest things on the phone to other people. For example, I've seen her on the phone telling a neighbor that she was at the hospital when she was clearly standing in front of me in my home. She will be fine and laughing with us one minute and then when a call comes from my uncle, she'll immediately put on a sad voice and pretend to cry. I'm not sure if this is her hallucinating or if she is just trying to get attention from people by making up stories. She recently taped her light switches to the off position because she's convinced that they randomly turn on in the middle of the night. (she spends the night at my house. She wouldn't even be home at her place to see the lights turn on.) Her apartment management told her that this is a fire hazard and she should take the tape off but she thinks they are lying to her. She insists on keeping the tape there.
She's always convinced that people are lying to her. I travel out of state very frequently for business reasons and often take my mother with me. We try to tell my grandmother about these trips way in advance so she can make accommodations about going to stay with our cousin or at the very least be mentally prepared for our absence. But she always forgets all the times we let her know (and it's usually multiple times, more frequently as it gets closer to the date) until like a couple of days before our departure. Then she's convinced that we didn't let her know beforehand or she thinks that we had lied about leaving earlier just to get rid of her. Everything seems to be a conspiracy.
I've read that change in personality might be a symptom of dementia but the thing is that my grandmother has always been a very stubborn and rather self-centered person. She grew up fairly affluent and powerful and still thinks that she has the social privilege from an old world class system. She is neither rich nor powerful now. She has been emotionally abusive toward to my mother all her life so I'm not sure how much of this is her personality and how much of this is an actual illness. My mother is considering taking her into see a doctor to see if this is really dementia. Is there anything we should prepare beforehand? What can we do if it is?
She was telling outrageous lies, behaving more odd than normal and exhibiting a lot of anxiety and fears. Soon, she was diagnosed with severe dementia. Prior to this, even healthcare workers who had come to her home for physical therapy didn't pick up on it. They told me that she was spoiled and lazy. Nope. It was dementia and she was suffering mental distress. She also had obsessions and depression. Her doctors prescribed medication (for her anxiety, depression and obsessions) and I got her the around the clock supervision that she needed.
I discovered that even if the person has a history of selfish and rude behavior, that can't be held against them, once they get dementia. I'd just have her evaluated and treated, IF that turns out to be the case.
When you are not willing to prop things up any longer, perhaps you make your own decision and simply state it to your parents. Then it isn't their responsibility. They may be relieved to be able to say that it is out of their control because they depend on you and you are so firm now. You then tell your grandmother what is going to happen. Without you and your parents, your grandmother will have very little choice except to do what you decide. OK she will certainly have a choice to make as much fuss as she can, but that is all. So you say that she is not coming to stay overnight at your house. You put the phone on an answering machine. You refuse to go and check power points etc etc. Even with a dementia assessment, you still need to consider these changes if care options are not going to happen soon.
I know that reading this will make you thing ‘fat chance’! I am also sure that it is culturally inappropriate for you to do this, but you are stuck in between cultures and this may be a time to swing in a different direction. At least think through for yourself what would happen if you simply stop being obedient, and whether there are any options like these for you to force a change. No-one else is going to do it, from the sound of it. Good luck!
It does sound like your grandmother needs to see a neurologist and possibly a geriatric psychiatrist. Could you ask her doctor for a referral? Tell him you are worried that she's had some kind of brain injury that you want to get seen about (TIA, stroke, Alz etc can worsen cognition and/or cause new symptoms). She might agree to see another doctor on her PCP's recommendation since it sounds like she trusts him. He may know of one in that field that speaks Korean. If not, look up medical translators in your area on Google. You might be able to find a Korean-speaking one who can accompany you.
Invent a painful, invasive and risky procedure that will have to be undergone if her blood pressure goes above optimal. That should stop her asking.
Mind you, you'll feel dreadful if it spikes and she doesn't tell you!
Sigh. I suppose when you boil it down, she's 85 and you're 27 and she's not going to take your word for a dam' thing, hm? I agree that in that case she might as well leave you in peace and not bother asking you... but for her it's recreation. I'm bored, I think I'll pick a fight.
Is there a real problem with her BP or is this machine largely decorative?
There really isn't anything wrong with her BP. She calls the doctor every single time she thinks there's a problem and they always tell her that it's not a big deal. She does the same thing with her blood sugar levels as well and makes a huge deal out of it in front of my mother and my younger uncle who are actual diabetics.
Or you could be entirely ethical and tell her he is a big fat liar who withholds information to which she is entitled, and fails to consider her wellbeing in the round. Which is true.
She used to occasionally stay with my cousin for periods of time (usually 2-3 months) when my mother needed a break or when I was busy traveling for business reasons. She kept telling me that there were no Korean doctors near my cousin so if there was an emergency she would be in trouble. I would pull up the Google results of every practicing Korean doctor in that area and she would still think that I was lying to her.
She also once asked me how much it was to Uber from my house to her apartment. A friend had told her that she visited her son for $8 through Uber so she was insistent that it would only be $8 roundtrip. I showed her on the Uber app on my phone that it would actually be more like $20 each way for a total of ~$40 roundtrip. She was also convinced then that I must be mistaken or holding something back from her because she couldn't read English.
Basically once she decides something is true, it doesn't matter how much empirical evidence I present to her. The only person who can effectively change her mind is her doctor.
You'll have to forgive me - the only reason I'm smiling sadly at it is that respectable elderly ladies suddenly behaving like badly-brought-up two year olds is all too familiar.
"Those working class Jews... too ghastly."
"After all, we're not paupers."
"I can't be alone! I've never spent a night alone in my life!"
Their lives have changed in ways they cannot control and do not like. They are afraid, and they are fighting. It's the crossfire you want to try to avoid.
Are you a son or a daughter, by the way?
I'm sorry, I missed your earlier reply to Ahmijoy which, from what I understand of it, explains quite a lot.
However, it doesn't at all close off your options. No matter how old-school and respectful, I'm sure your family's PCP will want to take the best possible care of his patient, and a complete, holistic assessment of her mental health ought to form part of that. How can you offer your grandmother the best care if you're not fully informed of her condition and her needs?
Moreover, if you're living in an area with an established, substantial Korean community? - then not only will there probably be support groups within the community but also your county's or state's services will be familiar with the cultural expectations that need to be taken into account when drawing up a care plan. So don't let the language and cultural "barriers" put you off - when you dig down a bit, they're not really barriers, they're just factors. They don't alter the fact that your grandmother needs a care plan and your mother needs support, they just mean that the specifications might want tweaking.
Skipping ahead a bit: supposing an assessment is organised, your mother will want to accompany her mother and that is a good idea; but it is probably better, if at all possible, for the actual translation to be done by an interpreter with your mother being careful not to intervene. Answers that come via a family member are liable to be padded out or filled in; and when you think about it this kind of undermines the whole idea of an assessment.
Or you could look up Korean-speaking psychogeriatricians, of course...
Above all, you are not alone. You may belong to a cultural minority group, but it's not like it's a new one or a small one. I think you may be surprised at how many people understand exactly where you're coming from.
Unfortunately, I don't have a lot of faith in her PCP because he tried to convince my mom that it's her duty to take in my grandmother and move to a new house with an extra room knowing my mom's anxiety is triggered by my grandmother's presence. He also recommended that we keep the results of a recent check up a secret from my grandmother (he thought she might have cancer, it eventually turned out it wasn't cancer) because he was afraid of my grandmother's anxiety skyrocketing and causing her to pester him and his staff. I found this to be unethical but my grandmother's been seeing him for years and will not see other doctors.
I apologize for my pessimism. But thank you so much for your patience and for your kind words.
I have nothing but respect for your strong filial sense.
And you may not wish to go into family history beyond the specifics of your grandmother's needs.
But if I may ask, how does it come about that a 27 year old is assuming financial responsibility for two parents of working age?
And while we're on the subject, broadly, of boundaries... Clearly your mother needs some. But is that something you might want to work on, too?
Trust me, you do not want your grandmother to have dementia. Much better that this is about patterns and habits which may be regrettable, and very challenging, but can be worked around. Dementia is not something I would wish on any family.
I'm drawing on other examples, here; but supposing your grandmother had been rather spoiled all her life, from childhood through a long marriage? Or, at the other extreme, had undergone traumatic suffering? She might well be outraged at the loss of her pampered status on the one hand; or bitter and mistrustful on the other. Life does things to people, and it is fairer not to judge the results if you can help it.
What I'm getting at is that, rather than think in terms of her lying or exploiting - let alone being a terrible, abusive person! - you will feel better if you can detach from these feelings about her and focus on what is to be *done*.
How long have you been in this position of responsibility? You're rather young for it.
It's less of me placing value judgments on my grandmother than it is me stating facts. I know for a fact that she hit my mother when she was young and my mother has lasting trauma from the experience. I've seen her lie to my uncles about how she is mistreated here when my mom is the only person willing to take care of her at this point and my older uncle has actually stolen money from her. I've seen her call one of her caretakers incredibly demeaning names because she believes that the woman is "beneath" her socially. I've heard her refuse to go to a senior day center because people there are "lowborn".
Having to care for someone I find repellent is getting to be very difficult and no longer something that can be worked around. I feel like I need some distance from her care or I won't have any positive memories of her after she passes. I hope that she will agree to see the doctor for an assessment at the very least. We've been considering that it might be dementia since she had her big theater tantrum 2 years ago but I know my mom was hesitant to ask my grandmother's doctor about it since even he thinks that she's just a difficult person to be around.
The second is warmly encourage your mother to follow through on the assessment.
Then, wait and see what emerges from that, and take your time absorbing the information.
The personality changes you've noticed, and the challenging behaviours, could be symptomatic of dementia; but they could also be symptomatic of the massive life changes your grandmother has recently undergone. I completely sympathise - I have a mother in law in similar circumstances who leads my sister in law a very merry dance indeed - because it is so incredibly hard to tell where personality issues end and dementia issues begin.
I imagine that bereavement and anxiety will be playing a major part in how your grandmother is behaving; but of course that doesn't mean there aren't also changes in her brain function. So the assessment is definitely your best starting point.
Meanwhile, whether or not dementia is present, so even if there is no sign of it at all on further investigation, your family still needs to think ahead about how your grandmother is to be supported. I am grimacing - oh-oh - at your comment that your grandmother has been emotionally abusive to your mother all her life: that does sound a bit ominous.
May I ask how old you and your parents are?
I feel like I would actually be relieved if the diagnosis was dementia because then we have something concrete instead of my grandmother just being a terrible, abusive person.
If Grandma is becoming truly difficult for your mother to handle, it might be time to consider filing for Medicaid and looking for a facility.