The Challenge of Delusions

DValentine

Hi everyone.

Just joined and have been, as I'm sure many of you are familiar with, under intense stress trying to care for my mom who is suffering from vascular dementia (first diagnosed when she got lost last May). She had slowly declined until two trauma events, an MRI in July that sent her into a severe panic attack (started having her first delusions right after) and then another neuro-psych study which was admitidly botched by the hospital and sent her spiraling down even faster. Definitely a link to traumatic events and her symptoms getting much worse, so we have been careful not to cause her any trauma since.

Her main challenging symptom since last summer has been confusion and the delusions. First the delusions were about stuff that is not stressful but now it has been switching between things that has gotten very hard to deal with. I've watched countless youtube videos on the topic and read articles but none of them cover what to do in this specific type of delusion. She's still with it in many ways so all the usual tricks of diverting or trying to calmly hear them out and steer them away won't work with her. She says "you think I'm stupid? Trying to distract me from the issue?" etc.

Example 1:

Currently, almost a manifistation of her wishes, she believes the 4 houses across the street belong to her 4 children (other than me). And so she's arguing with neighbors to stop going into their house and has argued with me when i tried to steer her away from doing that. How in the heck do you even deal with this? I've run out of ideas. I tried telling her that we wanted to buy those houses back then and we went and looked at them and she didn't like them because they're three stories (all true actually in a way) and that we decided to buy THIS house instead and sisters went to other areas in town. She won't have it. She says basically I'm trying to confuse her or I've lost my mind etc.  Honestly if she wasn't harrassing neighbors I wouldn't even care but you know. It is better than her last delusion, which was that her pacemaker was causing her confusion and hair to fall out and wanted to rip it out. Fortunately she just talked and never took action but that was a very scary one to deal with. She even thought I, her golden child, was responsible for putting it in her (which is true since i take her to doctors).

Any tips would be appreciated.  I have waves of grief but haven't even had time to grieve this horror show in a nostalgic way yet. It's just crisis management all the time and it's affected my work performance, etc. My older sister lives in with her as her care-taker but she is also way over her head. Unfortunately where we live it costs a fortune to put her in residental care and we can't afford it else we would (she actually wants to go and be alone). Thanks in advance. 

- D

harshedbuzz

DValentine-

Hi and welcome. I am sorry for your reason to be here, but very glad you found us.

One of the hallmarks of vascular dementia is that progression is typically a series of steps down followed by plateaus where skills and cognition remain level for a time as compared to Alzheimer's where loss of such seem to follow a steadier slope down. I'm not suggesting you aren't correct vis a vis traumatic events being a trigger, just that you may see this pattern going forward even without a cause.

Every stage of dementia brings challenges- this mid-stage where the PWD is impaired enough to have vivid delusions while still active enough to hold onto and act on them by engaging others is hard. Real estate was one of dad's fixations at this stage- sometimes he owned vacation properties in random states and later he owned every house on their street. It was an improvement over him accusing my mom of infidelity (His MO, btw, so extra painful) or me robbing him of $350K (the exact amount he lost in the market day trading). 

One thing that helped a bit was medication. I took dad to a geriatric psychiatrist for medication to manage this pattern of thought and the behaviors which were driven by anxiety in his case. They didn't vanish entirely, but the subject matter did become less incendiary, and he was more responsive to strategies like validation (responding to the emotion behind the outburst) and redirection. People here suggested apologizing for my "crimes" which seemed unfair, but I did try it once and it worked just as they said it would. 

Generally it's best not to try to reason with a PWD. In her mind this is truth and efforts to make her believe something else feel like "gaslighting". She likely has anosognosia which is a condition where a PWD can appreciate that they aren't just as capable as they've always been. 

This is a useful read-

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

Since it is unlikely that neighbors would pitch-in to redirect and validate her, you need to make sure she isn't a wander risk-- several former posters have had issues with neighbors when their PWD entered a neighbor's home thinking they owned it or made changes to the exterior (in one case pulling out garden plantings and in another weeding with a blowtorch). 

If you haven't seen a certified elder law attorney to discuss setting up POAs and qualifying for Medicaid I would encourage that asap. It may be possible to set up a trust and use Medicaid to pay for her care in a facility. On the other hand, if your sister has provided care in mom's home for a specific time period keeping her out of a facility, she may be entitled to inherit the house. Often families sell their parents' home to pay for residential care with Medicaid as a safety net should the funds run out. 

HB

SusanB-dil

Hi DValentine - welcome to 'here'...   also caring for LO with Alz and Vasc.

I second the wise advice already posted.    do know you are not alone.

DValentine

Hi Harshedbuzz,

Thanks for the suggestions. The situation with my mom is very, very complicated financially and emotionally. I understand, from research, that a lot of this is not uncommon in certain types of dementia and stages, but the thing with our mom in particular is that before dementia, she went in with a million risk factors and other traits that make this so difficult to deal with. She has a renowned neurologist (through our privilaged connections through friends) and he's been helping but some things are just not doable. For example:

Prior to Dementia she had:

- Mild/moderate agoraphobia, so rarely left the house unless it was to go shopping (she loved that) and or gatherings/parties. 

- Severe OCD, concentrated on cleaning the house (not so much her own body, but extroverted). To the point where she'd be out there raking leaves in the rain and storms.

- Severe anxiety, from a very, very traumatic life. She raised 5 kids as an immigrant in the USA from eastern europe after being sold off by her parents, suffer severe abuse by my father and be kept from getting an education (6th grade was her last). 

- Didn't believe in psych meds so left her depression and anxiety untreated

Despite all of this, this amazing, independent lady got all of her children minus one an education and a chance at a better life. Most of us made it pretty well and so her nightmare was to be disabled. In the beginning of her diagnosis, she would say that if she can't take care of herself, she'd rather die and she didn't go through that life to end up like this     

Currently she refuses to take her Zoloft (anxiety/depression) med and most importantly (Donezepil for dementia). We have managed to figure out a system to slip zoloft in her daily tea and it's helped a lot with the anxiety but not the delusions obviously.  Our next immediate goal is to get her back on Donezepil because even the 4 days she tried it, it made a HUGE difference, but then she got into a bickering argument with my sister over it and refuses to take it now (powered by another delusion).   The neuro said not to mix them yet and wants her just on zoloft until May to make sure they don't react badly together.

As far as Medicaid, she already has it. She actually has a golden low-income program in California called Section-8 as well and it helps pay for that house's rent. But they won't pay for residential. As far as I've seen Medicaid (MEdi-CAL in california) only pays for end of life nursing home/hospice care, Not middle or late stage memory issues :-\ ; save for a secret lottery they have currently of about 2000 patients a yr where they will pay for it. Trying to get her in the pool and I'm researching that end seperately but our primary goal is just to get her back on Donezepil rn.  As far as geriatric psych, we tried that but because of her agoraphobia she literally refuses to go to ANY doctor now. The only one she will go to if we drag her is her primary because she likes her. Other than that, it's been zoom calls, etc. So unfortunately at this stage that is not in the realm of possibility.

I also try not to reason with her and deflect as much as I can while incorporating at least some of her reality, but as I said before in a way she's still too sharp to fool like that and she seems to remember crappy stuff but not anything positive (short-term). Another sad thing is she had almost an old-married-couple relationship with my older sister than currently cares for her and just with our crappy luck, one of the last memories she had while she was more lucid last year was my sister going through some emotional lashing out (it was kinda bad actually) when she was depressed and that got recorded in mom's head and saved forever. So now she views her caretaker negatively and that makes it so hard on everyone of course. 

DValentine

SusanB-dil wrote:

Hi DValentine - welcome to 'here'...   also caring for LO with Alz and Vasc.

I second the wise advice already posted.    do know you are not alone.

Thanks SusanB.  Condolences for having to go through this challenging disease. What a doozy it is.

Thans

freelancer

I'm afraid I don't have any good suggestions to help with that specific example of the neighbors' houses. My husband also has vascular dementia (his brain was injured by subdural hematomas last fall) and delusions. One of the main ones is thinking that there are two identical houses with the same address and he always wants to go to the other one. I try logic, showing him the deed with our names on it, talking to the next-door neighbor, but the only thing that works is to get in the car, drive around for a bit, then back home, saying "here we are, at our house."

You have a lot to deal with it, I'm sorry it's such a difficult situation.

Sonja69

Your mom sounds a lot like my mom. My mother too diagnosed with vascular dementia last September after she got in her car and drove to a 7-11. When she got out of the car, she fell and hit her head and broke her left wrist. Up until this point, I had been trying (unsuccessfully) for a year to get her to go to the doctors and get evaluated. Her moods and behavior were out of control. For years leading up to this, I just thought my mom was becoming an incredibly cranky, bitter, difficult old woman. She was and still is to a degree impossible to deal with. It wasn't until her first accident and subsequent hospitalization and rehab that she was officially diagnosed. It gave me the validation that I was not crazy or doing anything wrong that was causing my mom's incredibly bad behavior. Since the diagnosis last September, my mom fell again, this time breaking her tailbone and hitting her head again. She gets delirium and goes absolutely nuts!!!!! She has seen 3 psychiatrists and all say that she has vascular dementia w/psychosis and outbursts. She is currently on different meds for her moods/behavior/agitation, one for the dementia and another for her blood pressure. The thing that I do is not to challenge anything she says, no matter how crazy it is. I listen a lot, let her think I'm agreeing with her and I lie A LOT!!! I make promises to her, knowing full well it will never happen. The thing that got me into a lot of trouble in the beginning of all of this was I would try and reason with her, get on the defensive if she said horrible things to me or accused me of crazy stuff...like the time she accused me of making this huge oak tree fall down across her neighbors yard into her yard. If she accuses me of things now, sometimes I say nothing. Then she'll say, "Did you hear what I just said?" I tell her yes and then she says, "Well, don't you have anything to say about it?" I tell her "No". Sometimes I have to sneak her medication into her food and/or I tell her they are vitamins. Believe me, I know how exhausting it is trying to distract, divert and keeping them calm. I feel for you and I know it gets old, day in and day out. I spend 90% of my time trying to keep her calm and distracted, it's like dealing with a two year old, but worse.

DValentine

freelancer wrote:

I'm afraid I don't have any good suggestions to help with that specific example of the neighbors' houses. My husband also has vascular dementia (his brain was injured by subdural hematomas last fall) and delusions. One of the main ones is thinking that there are two identical houses with the same address and he always wants to go to the other one. I try logic, showing him the deed with our names on it, talking to the next-door neighbor, but the only thing that works is to get in the car, drive around for a bit, then back home, saying "here we are, at our house."

You have a lot to deal with it, I'm sorry it's such a difficult situation.

Freelancer. Feel you as well now that I know what a nightmare this is. Your idea about driving around and boom is actually very clever. One issue with mom we have is, when we do take her out she does great but even before dementia she had agoraphobia (fear of leaving home) so now it's 1000x worse. We don't want to get into a situation where we cause her trauma physically moving her into a car but wish that was an option. Just getting her to Drs now is a whole production.   

DValentine

Sonja69 wrote:

Your mom sounds a lot like my mom. My mother too diagnosed with vascular dementia last September after she got in her car and drove to a 7-11. When she got out of the car, she fell and hit her head and broke her left wrist. Up until this point, I had been trying (unsuccessfully) for a year to get her to go to the doctors and get evaluated. Her moods and behavior were out of control. For years leading up to this, I just thought my mom was becoming an incredibly cranky, bitter, difficult old woman. She was and still is to a degree impossible to deal with. It wasn't until her first accident and subsequent hospitalization and rehab that she was officially diagnosed. It gave me the validation that I was not crazy or doing anything wrong that was causing my mom's incredibly bad behavior. Since the diagnosis last September, my mom fell again, this time breaking her tailbone and hitting her head again. She gets delirium and goes absolutely nuts!!!!! She has seen 3 psychiatrists and all say that she has vascular dementia w/psychosis and outbursts. She is currently on different meds for her moods/behavior/agitation, one for the dementia and another for her blood pressure. The thing that I do is not to challenge anything she says, no matter how crazy it is. I listen a lot, let her think I'm agreeing with her and I lie A LOT!!! I make promises to her, knowing full well it will never happen. The thing that got me into a lot of trouble in the beginning of all of this was I would try and reason with her, get on the defensive if she said horrible things to me or accused me of crazy stuff...like the time she accused me of making this huge oak tree fall down across her neighbors yard into her yard. If she accuses me of things now, sometimes I say nothing. Then she'll say, "Did you hear what I just said?" I tell her yes and then she says, "Well, don't you have anything to say about it?" I tell her "No". Sometimes I have to sneak her medication into her food and/or I tell her they are vitamins. Believe me, I know how exhausting it is trying to distract, divert and keeping them calm. I feel for you and I know it gets old, day in and day out. I spend 90% of my time trying to keep her calm and distracted, it's like dealing with a two year old, but worse.

Sonja69, feel for you and it does sound very similar. Mom was uber healthy (actually walked/jogged 1 mile a day) physically and was sharp for her age at 82. Then she took a massive fall off a 5ft ladder when she was home alone (she was a prolific DYIer and fixed up the home by herself all the time). Was there for hours before she managed to get to a phone and call me. Her right side was shattered. Her head 8inches away from a concrete post that would have ended it. After the 4.5hr(!) surgery to put her back together she was never the same. Something was off and they said her heart rate was extremely low. We fought with her for a year to get a pacemaker but she refused (independent, doesn't need a machine to help) and then she had a heart attack and finally got the pacemaker but those 12+ months of fall + lack of oxygen to the brain did the damage. Went downhill fast since then after an initial bump with pacemaker.   She refuses to take meds, which is another disaster. She won't let anyone touch her food. We managed to slip anti-anxiety into her tea pot and that has helped. Hoping to get her on dementia meds but mode of delivery is going to be a problem. 2x we've tried before and she throws them all away even when we lock them up.

As for agreeing with her and lying, i do, but i mean she's physically going to the neighbors house demanding they get out. Actually two nights ago the cops were called and they were going to take her away and we had to plead for them not to because everytime she's had trauma, her symptoms get WAY worse. These particular cops were jerks but they let it go this time. Can't go along with that delusion because as you can see it escalates into stuff like this. We're just so exhausted. And feel bad for her. 

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