Is it her? Is it not her? Is it sort-of her? What do we do?
November 26, 2011 8:36 AM   Subscribe

My grandmother in the process of dying is suffering through a sudden dementia?... delirium?... from her medical condition that is causing her to be extremely belligerent and hurtful to those around her. We know this "isn't her," but we don't know what to do, what time to spend with her, what is going on. I'm looking for perspectives on this.

Her decline was extremely sudden and irreversible, and while she had had some encroaching physical symptoms she had had all or the majority of her faculties until things took a turn for the worse. In addition to dealing with her approaching death, we're left in this twilight feeling of whether who we are caring for is even the person we loved, still. She isn't particularly cognizant that anyone is who they are, apart from a cousin of mine who has gone from being the sunshine in her life to being her worst enemy in this delirium. It absolutely destroys me to hear "her"/her treat my cousin with great vitriol, though my cousin has put up with it very well. I haven't the faintest as to how this reversal occurred, though I have heard anecdotally that this is fairly common (good==>bad). She also snipes reflexively at anyone who is there, which very often happens to be nurses and sometimes me. It isn't clear if she is aware of where she is apart from being somewhere she does not want to be. On the other hand, she was apparently aware that I was around earlier today, as she started repetitively saying to my aunt that I needed to come take her away. That really broke my heart. (One other thing I am trying to get away from is blaming myself for every inequity I see--I had almost started to blame myself for getting lunch as this happened while I was at lunch, which killed me, it really did. Obviously, not eating serves noone, so.)

Now, though, she's full of venom and wants noone in the room.

I'm not particularly sure of where our place is on the way to the end, where my place is. I had prepared myself as much as a person can for her death, but I hadn't prepared myself for this little death of sorts. I don't know if my position should be to sit there and taking it all and being incorporated into her organically-caused paranoid delusions, if it somehow lets her know that I am here and want to be here for her? (A number of my relatives have told me to consider stepping aside, as they know that she would not have wanted me to remember her in his state; we were extremely close in her health, and she's very prideful in a Southern-honor sort-of way.) In a weird sense, her stubbornness versus the medical care is somehow her (she is extremely strong-willed), so that makes me wonder if she is more there than I think she is. The doctors and nurses, though, assure us that she is in no way who she was before. Maybe I'm just having a hard time accepting it? But, is there some core that survives as long as there's any life in you--like the proto-awareness of some vegetative patients? I don't really know.

All I know is that I love my grandmother and really want things to be as easy as possible (easy seems like a failure of vocabulary here, but I hope you know what I mean), for her.

I find that MeFites often have really helpful perspectives on these really tough times, and was wondering if anyone had anything to share with me, or had any other resources for this sort of thing. Thanks, all.
posted by anonymous to Human Relations (18 answers total) 5 users marked this as a favorite
This is a long shot, but were there any medication changes around the time this started? My grandmother had something similar happen (delusions, personality changes) because two separate doctors had prescribed medications that interacted badly. The pharmacist was the one who finally realized what was going on.
posted by Blue Jello Elf at 8:44 AM on November 26, 2011 [9 favorites]

Sadly I don't have anything positive to offer you. We went through this with my grandmother almost exactly. She was hateful and mean and confused around the family. Like your grandmother she was a Southern Belle and that was the only thing that kept her from being unbearable to the nurses and doctors. With family though she would drop the facade and curse at us and treat us horribly
I know it's is hard to remember but she really isn't there anymore. My heart goes out to you and your family. This is a really horrible yet common thing and I am so sorry you have to go through it
posted by teleri025 at 8:59 AM on November 26, 2011

I am so sorry, Anonymous. Please believe that your grandmother's behavior is in no way a reflection on her caregivers, but is the result of impaired or altered brain function. Please contact your local hospice and see whether they have anyone you can talk with; in addition, consider reading through this information for caregivers of the dying. It is so, so hard. I wish you strength.
posted by MonkeyToes at 9:00 AM on November 26, 2011

Agreeing with all the above; this isn't, as you say, her. It's medications (or a mix of them) or what used to be called 'mini strokes' but now have some other name I can't recall offhand. All you can do is more of what you're already doing: being there, even though its breaking your heart. Just keep reminding yourself of what she's really like, and keep loving her through these tough times.

In my mother's case, the mini-strokes didn't cause her to get mean but she was seeing and hearing things, things like her own father came to visit her even though he'd died sixty years earlier; she was mad because she was convinced the city came and chopped down all the trees in her backyard --- mom, the trees are still right there! --- and my personal favorite, the commercial parking garage she said was being built underneath the house.
posted by easily confused at 9:13 AM on November 26, 2011

I'm really sorry, my aunt went through this when I was in my teens. She went from smart gifted mother to rude to hateful and then completely delusional before she died. It was so sad and confusing for us so I really feel your pain. Our strategy was to be with her as much as we could stand. If it got to be too much we would just say bye and cool down for a bit. She is not there. These are not her dying last hateful thoughts that she was too nice during her health to tell anyone and now wants to spill. If this is really spoiling your image of her for good you should step aside but if you can see that she is suffering and part of that is this new personality that is not her own consider keeping occasional visits.
posted by boobjob at 9:15 AM on November 26, 2011

She also snipes reflexively at anyone who is there, which very often happens to be nurses and sometimes me. It isn't clear if she is aware of where she is apart from being somewhere she does not want to be. On the other hand, she was apparently aware that I was around earlier today, as she started repetitively saying to my aunt that I needed to come take her away. That really broke my heart.
This was my Dad exactly during the last months of his life. He was dying of heart failure and suddenly went into severe dementia (or so it seemed) almost overnight at the end. His medications hadn't changed, but he was barely eating at all and we think perhaps his brain was suffering from the lack of food. Whatever, that was our layperson's reasoning for his sudden change in behavior. My Mom, his wife of 52 years, who had gone to the facility every single day since he'd been admitted and sat by his side was suddenly "a terrible wife" who'd "never taken good care" of him. He also said this to the nurses and aides and it broke Mom's heart to hear him talk like that. However, the staff knew how dedicated Mom was and they told her Dad didn't know what he was saying; that he said rude and belligerant things to all of them, too. He accused pretty much every one of them of "trying to kill" him whenever they made him sit up for a few minutes or sponge bathed him. He'd also ask total strangers who were visitng his roommate things like "Do you have a car? Can you please take me home because my family won't, they just leave me here."

Such things are very painful to hear, but you have to keep reminding yourself that Grandma doesn't really mean what she's saying. We don't know why she's behaving this way, but it's not truly her, the Grandma you grew up with, who is saying these things. I would also continue to visit her because perhaps somewhere in the back of her consciousness she knows that you're there, plus after she's gone you don't want any guilty feelings for not having been there, etc. My heart goes out to you and your family.
posted by Oriole Adams at 10:06 AM on November 26, 2011

I have no advice, sorry. I can only tell you that I'm having similar issues with my own (elderly) mother. Sometimes she will clearly say how much she misses various relatives and she'll wonder why they never come around any more. Then, sometimes within a few minutes, she will say the most horrific things about them. She will alternate between being a warm, friendly person to literally crying and begging to die because various equally elderly and feeble relatives, who live thousands of miles away and who haven't seen her in years, are breaking into her home at night and stealing things, stealing money out of her bank account, spreading rumors about her wherever she lives, and that things are just so terrible. Logical reasoning with her is impossible. And, of course, she literally cannot stop talking. She will literally talk for hours and hours, with no response from anybody else, in pure random stream of consciousness about how terrible people are and how they steal everything from her. She is very, very, very difficult to spend any time around.

I know this doesn't help your situation, but maybe you can take a little confort in knowing that you (and your grandmother) are not alone.
posted by LastOfHisKind at 10:13 AM on November 26, 2011

I worked in an Alzheimer's & Dementia unit, and it was heartbreaking to see people go through this. Sad to watch formerly vibrant people go into themselves and not come out, or the opposite, someone who was nice turning so very mean. Sad to see the family member who bore the brunt of it that day, and with no context with which to understand it.

Aside from not taking it personally, whatsoever, my advice would be to continue to visit, rub lotion on her hands if she'll let you, play some music from back in her day, read her cards from friends, look at pictures together (even if she seems out of it).

Ask the staff what they do to get her out of a bad mood. I once worked with a lady who was mean as could be when she was having an off day, but pretty much catatonic the rest of the time....I would stick my tongue out at her and it made her laugh...see if the staff knows any tricks like that.

Also, it's super stressful to work in the Alzheimer's/Dementia unit (as you can imagine)...maybe you could bring in the staff a box of chocolates or some good coffee...happy staff make happier residents...that is a fact. Care staff go above and beyond every day of the week, but it does boost morale in the nurses station when a family member beings in a treat. This translates into better care.

Hugs to you and your Gram.
posted by Grlnxtdr at 10:40 AM on November 26, 2011 [7 favorites]

It's critical to hang onto the knowledge that this is not about you. My mother lost her personality toward the end. My sister did not take it well and still has not recovered – to her, Mom's recognition and approval was so central to her sense of self that it shook her world. I was fortunate to be able to remember throughout that it wasn't about me.

I think people sometimes assume that the illness has revealed some longstanding dislike or hatred the person has been harbouring and that the hurtful things said are more true than a lifetime of good relations with that person. The neurological damage done truly causes a deep change in personality that doesn't equate to someone revealing emotional truths while drunk, which is probably the experience most people would liken it to.

We contain multitudes, and some of those multitudes are not nice people. Aggression and anger can boil out of a person that's afflicted by this kind of illness, and its crucial to remember it's nobody's fault, it's no more laden with moral meaning than any other medical symptom.

Not saying it's always easy to keep that in mind but it's true.
posted by zadcat at 11:30 AM on November 26, 2011 [3 favorites]

There's a caregiver story I read somewhere on the Internet about a woman who was taking care of her grandmother, who had late-stage Alzheimer's. One morning, her grandmother became extremely agitated, flailing about in her chair and crying as though she was in pain. When her granddaughter came in, she was throwing the blankets around and saying "I can't find it, I can't find it, I can't find it." The granddaughter rushed to her side, searching through her blankets and clothes and the cushions of the chair, asking her grandmother what it was that she'd lost, while her grandmother became more and more and more frantic.

Finally, her grandmother was able to tell her what it was she couldn't find. It was the day of the week. Her cognition had degraded so far that she had lost track of the fact that "what day is it?" is an abstract question, not a physical object.

When the mind starts to break down, it behaves unpredictably. It might be that your grandmother's mind is struggling to make sense of her confusion and stress and has decided to pin it on her family, much like a dreaming mind will incorporate the sound of an alarm clock into a dream as a police siren or a really annoying bird. Or it might be that the parts of her mind that hold her family in loving regard are misfiring. Or it might just be that, sadly, she is just not there any more. Regardless, though, it's a symptom of her disease, and has no reflection on you or anyone else.
posted by KathrynT at 11:44 AM on November 26, 2011 [5 favorites]

This is so, so common, and tragic.

Definitely review her medications, looking for things that can be changed or eliminated. That can make a BIG difference.

Talk to Hospice; they're wonderful.

My mother was in and out of hospitals and nursing homes in her last couple of years, and she went through a phase like this whenever she was in a facility. My tiny, genteel, sweet mother threw things at the wall and slugged a nurse, and raved about everything in the room being electrified and on fire. Each time we brought her home for a while, she regained a lot of her mental balance. Can you create some familiarity in her surroundings where she is now -- bring the blanket from her bed at home, or a picture to hang on the wall, anything that she would have seen or felt when she opened her eyes in her bed at home? Do you have any items or pictures from her youth or childhood? Music?

I found it sometimes helped my mother if I got into her hallucinations with her -- instead of trying to tell her that the room wasn't on fire, I told her that I would put it out. Sometimes she could be coaxed to describe in detail what she was seeing, and I would prompt her with questions rather than contradict her. That was at least a little more calming than trying to talk her out of it.

What you're doing is the greatest heroism there is.
posted by Corvid at 12:03 PM on November 26, 2011 [4 favorites]

My only advice (I have something a bit similar going on with an elderly rel) is to try to make sure you have breaks from her and that there are people you can talk to about it. Other family members and I have found after spending time with my rel we need to talk about it with each other, go through some of the deluded comments - a kind of debriefing thing.

My rel also makes nasty comments - at times we have found it important to call her on some of these, for our own grip on sanity if nothing else, not by arguing with her, wch is pointless, but by stating our own truths. She can be breathtakingly hurtful at times and I guess all one can do is hold on through it.

As for whether you should carry on spending time with her at all - I can only say that I think if I were you and followed your relatives' advice not to see her, I'd feel bad about it. You have already seen her as she now is so it's not as if you're going to forget that. I think in your position I'd have more peace after she died if I carried on hanging in there, hard as it is.

Thinking of you - look after yourself.
posted by paduasoy at 12:18 PM on November 26, 2011

Some of the stuff people see while they're in the process of dying is terrifying (like people jumping out of the ceiling, etc.), thankfully for my grandmother it was just people constantly stopping by to visit her—men in white coats and dead people she knew. (No biggie.) She was often annoyed by her "other" visitors but not us. Although she did alternate between telling me she loved my hat and five minutes later, telling me to take my dumb hat off :)

From my experience with my grandmother's death earlier this year, and my aunt's experience as a hospice social worker: it's pointless to tell them their hallucinations aren't real—just roll with it. Ask them who/what they're seeing. We'd notice her eyes dart to corner of the room and give the corner a pissed-off look, and then we'd say something to her like, "Who's that? Oh geez, that guy needs to leave already. Go on, get out of here!" and it would actually elicit a smile from my grandmother. I don't know if we really could "cast out" these hallucinations, but it seemed to helped with her mood and decrease her agitation. Way more than trying to explain that no, it wasn't Christmas, no, there's nobody over there, no, there's not a stack of books on your food tray, etc.

Try to get in touch with a hospice social worker, they can really help you out with this kind of thing. They know how the "stages" of dying work and what to expect and what works and what doesn't, and they're there for you.

There may also be some medication adjustments that might help with her anger, she might be in pain and that could be part of her problems. For some reason, my grandma wouldn't ask for more pain meds even if she was in pain, and that contributed to being short with people.
posted by autoclavicle at 12:33 PM on November 26, 2011 [1 favorite]

Aggression in the elderly with dementia is often due to poorly treated pain, according to some research (it found that painkillers were more effective than antipsychotics because the people actually felt better). So, while this could also be due to too much/bad mix of medications, it could also be due to *too little* or due to the wrong type of painkillers. Be sure there's no obvious, fixable source of pain and that her pain is being taken seriously.
posted by Maias at 1:51 PM on November 26, 2011 [4 favorites]

My mother went through something more subtle yet similar in her final months. We don't know for sure what caused it but it's possible it was her brain tumours. She lost her social filter completely and began to make hurtful comments about people all the time. She would then realize what she had said and either look horrified or laugh awkwardly and say it happened all the time. This led to a large amount of hurtful, homophobic, racist, transphobic, etc. comments aimed at myself and other people. She wasn't obviously demented if you didn't know her until the very end, though.

Take shifts with family. Take care of yourself. If someone else has a particularly thick skin, let them do most of the care. It's ok to let your life continue to move along and to do life things - this isn't the end of your life. She's not there any more. You don't owe this person anything. I know that sounds incredibly insensitive because you want to help her but you shouldn't let yourself fall apart as a result. Make a schedule where someone relieves you every day, take lunch every day, spend time with your support network every day... do normal things to keep yourself sane.

My heart goes out to you during this difficult time, Anon. Be kind to yourself.
posted by buteo at 2:00 PM on November 26, 2011

Using Validation Therapy to Manage Difficult Behaviors

One of the things you have to get used to is that dementia patients are speaking from a different reality than yours. Say your grandmother calls you by the name of your aunt. You can gently correct her, but if she resists, just go with it. "Oh, yes, I'm here."

The other thing you need to learn is redirection. Just as with a two-year-old, sometimes the best thing is to change the subject, point them at something else. Again, you validate or acknowledge their reality, then move on to something completely different that ideally won't be stressful. "No, I don't know where your slippers are. I'm sure they're around. Shall we go get lunch?"

It can be painful to hear abuse and vitriol coming from someone whose words you always took seriously. One particular sentence that my dad said to me, quite viciously, two years ago continues to haunt me. (Not to mention the completely spurious -- I hope -- accusation to my mother that I was someone else's son. So many people recognize him in me and the sound of my voice that can't possibly be true. I hope.) I just have to shrug and figure it was a worse situation for him to be thinking that when it wasn't true.

Dementia is a disease. It has physical causes. It's like shotgun holes in a book -- things go missing. The person stuck trying to read it, live in that distorted and ruined reality, is experiencing great frustration and anxiety. It really, really isn't about you.

'mini strokes' but now have some other name

Transient ischemic attack (TIA)

posted by dhartung at 2:25 PM on November 26, 2011 [2 favorites]

I work with hospice. What you are experiencing is not uncommon although it is painful to anyone who has to go through it. In my opinion, and it is only an opinion, everyone goes through a lot of chemical changes in the process of disease, more so near the end. Even the slightest of these chemical changes can cause strange and totally uncharacteristic behaviors and attitudes. This is not the Grandmother you know who is speaking. This is the chemical imbalance speaking. I have been with patients who have driven everyone out of the room. I had one hold my hand and ask me over and over who I was and was told later that I was the only person she had never tried to run away from. There is simply no way to know what any individual person is going to do under these conditions.

It is sad and I am saddened for you. You must give some thought to your own well-being as well as that of your Grandmother. If you have not already done so, contact hospice and ask for advice about respite care for you. That is simply having someone who will look in on her periodically while you take a break. You can do so without feeling guilty. You can also talk to someone who can put what she is doing into a better perspective.

You will get through this. It will be hard, but there are people out there who can help with the burden. Best wishes.
posted by Old Geezer at 9:32 PM on November 26, 2011

This same thing happened with my grandmother after she had a stroke last year (and then continued to have smaller TIAs while in the hospital) until she passed away 8 months later. It is very hard to watch and have to endure and I am sorry she and your family are going through this. I had never even contemplated it as part of someone's death until it happened. It nearly tore our entire family apart and I'm certain it's made my mother (it was her mother) have additional health problems that still linger.

I do not believe that the behaviors my grandmother engaged in which in her case were also uncharacteristically aggressive were "her". They were a reaction to what she thought was happening to her. In her case, she believed that she was being held against her will (and, in fact, had been kidnapped) by the hospital staff. She called the cops a couple of times (once on her own until we removed the phone and then got someone else to call for her). She lashed out at the staff, going so far as to call them Nazis (she had been forced to work in Germany and her husband had been similarly for SS officers). She begged us to take her home. It was heartbreaking for everyone. But we also all came to recognize that she just couldn't understand what was going on and was very afraid in what was HER reality. If these things had actually been happening to her then, really, she was a pretty crafty and ballsy broad!

It took a while for us to accept it and learn to deal with it - both when we actually were with her and in our own personal ways when we weren't. Some of us were better at it than others. Turns out that my dad is a master play-actor. Mostly we just had to go along with whatever delusions she had at the time. When we were actually there with her she didn't think she was being kidnapped, she thought she was at home and so if she asked us to go get the laundry off the clothesline we just left the room for a minute and came back and told her we had. I snuck the same $20 into her "purse" (a drawer next to her bed) a number of times so she could "give my granddaughter some money". We came to realize that it just doesn't do any good to fight it. It's stressful either way for US, but for HER going along with it eased her stress.

You will get through this but it will also be hard for you and for everyone. I don't think there is one absolute right way to do it but overall it's probably better just to go along with her as much as you can without actually breaking her out of the hospital. We used a lot of "Well, Grandma, you just need to stay here for now so they can try to make you stronger. We'll check and see when you can leave", knowing she would never leave but also knowing that she'd forget we even said it 10 minutes later.
posted by marylynn at 12:03 PM on November 29, 2011 [1 favorite]

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