Update on Decision & Question: Decline, delusions & agitation-next steps?

member1201

Mom (87yo) is declining rapidly in past 4 months and we (step-dad and I, sis occasionally) are seeing increase in her delusion that he has a GF, she comes in in middle of night and takes things, brings things, breaks things-mostly kitchen items or things in closets she doesn’t recognize-hairdryer, coats, utensils, serving pieces, etc-list is long. She also has memory issues beyond forgetfulness and cannot remember common terms, names of people including family members, sometimes it’s challenging to even follow her conversation/train of thought. She’s a good actress though for PCP and most people beyond me and Dad. She has never been very social but now reduced to almost nothing.

Comments about the GF and how much she hates Dad is several times a day now vs every few days just a month ago. Her “episodes” seem to last longer. She gets very agitated and aggressive-verbally and sometimes physically which is increasing. I try to redirect but doesn’t always work. I try to not agree with her but she now is mad that I’m nice to Dad and can’t understand why when he is being so awful to her.

I suggested she come stay with me but she refuses to leave “her house” and just wants to make things as difficult as possible for him-muttering insults, comments, not speaking to him for hours at a time. She is not great physically with mobility declining but she manages to have the energy to kick, hit and recently bite. We never know what will trigger her. We are aware of sundowning but episodes happen in the morning too-no rhyme or reason. We cannot communicate easily with Dad even though I’ve had extended stays because she won’t leave us alone. (Did I mention paranoia?) We try conference calls after she’s asleep at night but sometimes he forgets or she has a good day and doesn’t want to burden us.

She is in the process of being officially diagnosed -brain scan normal, no UTI’s (2x), did ok on cognitive (though not sure if it was done correctly by nurse). She is on Donepezil and B12. She repeatedly says she’s fine and nothing is wrong with her so getting her to agree to any tests or doctors was an effort.

She lives in an area where there are limited resources (mid size city about an hour+ away) so we have seen PCP who provided referral to neurologist. We also have appointment with another PCP who has geriatric focus. Both appointments are 5-6 weeks away. Sis is calling daily to check for cancellations.

Sis and I are trying to learn and navigate as best we can but there’s no playbook and we are at a point where we feel we need to take the next step or more action but we don’t know what that is. Dad is 85 and I can tell reaching his breaking point. I can’t imagine how difficult this is for him and for her believing with such conviction that he is betraying her.

Any advice or guidance from the community is truly appreciated!

Update: we have decided to seek emergency medical care and take Mom to the ER after daily agitation, aggressive physical and verbal shouting and remarks. We appreciate everyone in this community for their guidance and thoughts.

Question: we are planning to take her ourselves vs calling 911. Several have mentioned to insist they treat her and refuse to take her home until she sees Neurologist. We are taking her to same hospital that her neurologist is affiliated with (unfortunately cannot see the neurologist for another 5 weeks)

Is there anything specific we should do/say at the ER? Any creative ideas to get her there? Better to go in the morning or at night?

Again appreciate any and all advice!

SusanB-dil

Hi 1201 - Violence of any kind or form is not acceptable towards anyone. If she is kicking and biting, might want to at least consider calling 9-1-1 and getting her into geriatric-psych. They should be able to get her the correct dosages of any meds to dial that back.

She has what most of our LOs do - anosognosia. This is not denial, but rather the total perception that nothing is wrong. A PWD usually cannot realize their own limitations nor deficits. (very few can) This is their reality and everybody else needs to see it their way. (uugh) Also - showtiming. Somehow, our LO can step up when they really 'need' to, and seem to fool a lot of people around them, such as their doctor.

Do make sure Dad gets some respite. When you get the aggression dialed back, maybe look into adult daycare a day or three a week. Maybe even get an aide so dad can get out for a little while. If mom is not agreeable to that, you could tell her it is to help the aide - for college credits or experience.

Suggesting staying with you - is this for a day or so? Longer than that, please think twice. 'this' isn't easy at all, and it really disrupts life as we know it. Also, you would be disrupting her even more, which could make her even more difficult.

'this' sucks. ((hugs))

terei

This must be horrible for your father. I agree with getting her to geri psych for treatment. If she is aggressive, call 911 + have her transported to ER + then to Geri psych. She could also go to MC from there to give your father relief. At this point, dad is a trigger for her rage + they would both likely be happier apart. Caregivers die before their LOs a least 30% of the time…probably stress related.

member1201

@terei

@SusanB-dil

Thank you both for taking the time to comment. We agree something has to be done and trying to figure out how to navigate taking her to ER when she’s such a good actress. She will behave and then ER will wonder why she’s there-that is if we can even get her there. I was just with parents at Dad’s PCP exam and he brought it up, saying she has Alz and he needed support suggestions. She just laughed (surprised) and didn’t say a word. We both were expecting her to become agitated and accused Dad of lying but not a peep. He even mentioned the hitting. The agitation arrived once at home-sigh

Thanks again-grateful for this community

terei

try getting video of her outbursts..that may assist you in getting help

member1201

@terei

Yes-I was able to do that this afternoon. A lot are quick insults, badgering, cursing and unexpected swings when he’s nearby. We are always on guard. Sis has been calling hospitals for availability but no luck. We are trying to keep her calm but she’s been like this for 2 days and just cannot be distracted or relaxed. It’s exhausting and heading into a weekend. Sigh

Emily 123

Hi,

Could your dad share the videos (I'd continue to try to catch the behaviors) with her provider to see if they could trial some meds? Perhaps phrase the request so that it's clear that she can moderate her behavior in front of outsiders, but that they're escalating to the point where she's unsafe and she's harmed him? With your mom being such a good showtimer, and episodes getting worse, it might be helpful to get her on meds sooner rather than later, which the PCP should be able to do.

member1201

@Emily 123

Thanks for your thoughts. Your phrasing of the situation is great and we will use that.

We have been in touch with PCP and have been able to get an appointment in a few days. He will not prescribe anything without seeing her and per his nurse unlikely he will move forward with new meds since Mom has refused meds and tests in the recent past-“she’s the patient”.

Thinking he has seen limited dementia patients but even so I don’t understand how PCP cannot take into consideration her illness and be more creative in persuading her. We’ve written letters to him providing very specific details and examples, and reiterated we have Health Care Proxy in place. She can’t make these decisions about her own healthcare. She is very stubborn and proud that at her age she “only takes 6 pills a day”. She had initially refused tests-brain scan and abdominal ultrasound (checking for potential other issues) and “doesn’t want to take any more pills”

We keep trying…

H1235

https://alzconnected.org/discussion/comment/232292#Comment_232292

Since her pcp doesn’t seem to have much experience with dementia, and your mom will probably refuse to take new medication anyway, I think 911 might be the best option. When they get there explain everything and show them the recording of her behavior. Demand the opportunity to show the emergency room doctor as well. Tell them your dad is not save! I know this seems extreme, but I don’t know how else you can get her help. When she is taken to the hospital don’t let your dad bring her home. Be blunt and tell them you fear for his and her safety. Push for transfer to a geriatric psychiatric hospital. An opening may be hard to find. They may have to take her somewhere hours away. Don’t worry about that. They are probably not going to allow visitors for a while anyway. When they have her medication figured out and are ready to release her I would strongly recommend memory care or assisted living if they think she can do it. I hope you can figure something out.

member1201

@H1235 thank you. Appreciate your thoughts and advice on approach. I’m afraid MC is coming quicker than we ever thought. Her delusions are almost constant and we are trying to redirect and get her to focus on something else but it’s really difficult. We are always on guard and trying to anticipate triggers as best we can to limit her agitation and “episodes”

AmandaF

This sounds terrible and I’m very sorry. Saying repeatedly that you are “very worried for their safety” can be helpful in getting a doctor’s attention/getting them to take action. I had to use that language to finally get them to prescribe seroquel for my mom, which helped a lot with behaviors similar to what you’re describing. We were also convinced she wouldn’t take the pills, but when we told her they were really special and highly recommended by our family friend that she trusts, she agreed to take them. You never really know until you try. I would also start researching MC options. Sometimes the people who do the intakes there are quite helpful. Good luck and hang in there.

member1201

Thank you @AmandaF

It’s so hard because there are times when she’s perfectly fine-still cooking, doing housekeeping, crocheting hobby. I just hate thinking about what the near future will be and what she will think of us doing what we have to do to keep her safe. (tears)

AmandaF

https://alzconnected.org/discussion/comment/232449#Comment_232449

I know, it’s awful. We would sometimes try to imagine what our mom-from-10-years-ago would have thought was reasonable, if we could have talked to her. And you have to do what you can to protect your dad’s physical and emotional health as well, or you risk losing them both. Sending good thoughts.

member1201

update provided in OP and questions for the community about ER protocol and creative ways to get her there!

harshedbuzz

@member1201

A couple of points to consider form one whose parent was diagnosed during a hospitalization via the ED.

What you are describing is not a neurological emergency. That would be something akin to a rapid change in mental status. This is a psychiatric emergency and it's likely any admission will be based on her potential harm to herself or others. Treatment will likely be aimed at pharmacological relief of her agitation with the expectation that he evaluation for dementia will happen outpatient once she's home again.

In your shoes, I would transport via ambulance. I would probably make sure to record her behavior in case she showtimes once there. I didn't have that luxury since I wanted dad seen at an ED in Philadelphia which was 150 miles from his home. Coming by car could result in a long wait among other patients and the risk that mom's episode will come to an end which will make getting taken seriously difficult. Dad was clearly psychotic at the time we brought him in which mom reported as sudden onset. Those coming by ambulance are generally seen more urgently.

HB

member1201

@harshedbuzz

Thank you-very helpful

We have behavior examples as suggested by another member of the community