New to this and seeking guidance

member1201

I’m new to this whole world and the challenges it presents! Mom is showing many signs of Dementia/Alz and in the process of additional health tests. No official diagnosis, no cognitive testing. Limited healthcare in the area and PCP is generalist. We are trying to get her to Geriatric Dr in a few months tho haven’t brought the subject with her yet. She has become aggressive, paranoid and agitated. She downplays things and “doesn’t have anything wrong with her.” (Denial) . She also has delusions-believing husbands having an affair which I know is common. Her agitation has become physical and while visiting for the past week I’ve not witnessed anything but this evening she became both verbally and physically aggressive, hitting and screaming. I’m not sure I handled it correctly and could use some strategies to break her out of the state she gets in. Thanks in advance for any and all advice!

psg712

I would start with the PCP. He or she has likely seen dementia develop in other patients and can help with referrals if needed. Send the info about your mom's cognitive and behavioral changes to the doctor ahead of the visit and ask for a basic cognitive assessment. Be aware that many PWD can put on a good front for the doctor - that's why you need to provide specific examples of the paranoia, physical aggression, confusion before the doctor sees her. If this person has been her doctor for a long time, the changes may be evident to them.

If she gets physically violent again, you can call 911 and have her taken to the hospital for her safety and yours. Then insist on a cognitive evaluation while she is there.

She is not in denial when she insists that nothing is wrong with her. She is truly unable to perceive her own confusion. That is why family has to step in and handle things, often without consulting her. It sounds cruel but in the long run its security for her when she doesn't have to struggle with decisions she is not mentally capable of making. If she's living alone, that is probably not safe any more. Do you or another family member have DPOA to handle legal and financial matters for her? That is an important step to get done ASAP.

I know that's a lot, and others here will have more insights. It was one of the hardest parts for me to take over the decision-making for my mom when it became obvious that her reasoning and judgment were seriously impaired. She had always been independent and competent and was NOT pleased with my interference...but later I realized that on some level, in spite of her anger, it was somewhat of a relief for her to have someone else handle the details that were overwhelming to her.

Read a lot of posts on this forum. Others who have walked this road have wisdom to offer from their experience. We are here for you.

member1201

thank you so much for your reply!

She doesn’t like her PCP and he seems to be making recommendations for tests and meds but she’s refusing and he just says ok vs perhaps trying other tactics. Sigh. We will keep trying there.

My step-father is with her but he is dealing with a lot and both are not young-85/87-so I’m trying to help. Trying…

thanks again

harshedbuzz

@member1201

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

My advice, having danced around trying to get my dad diagnosed for almost a decade— stop talking about it with her. She's not in denial. She has anosognosia, a condition in which a person with dementia or some forms of mental illness is unable to recognize the ways in which they are impaired. In her mind— her reality— she is as fine as she's always been and doing all of the things she's always done. For this reason, along with her issues with short-term memory, you can no longer reason with her.

When you go to the doctor with her, it's best to list concerns ahead of time via a patient portal or a discretely passed note at check-in. I would sit behind dad in the doctor's line of vision which allowed me to non-verbally communicate the veracity of the answers he gave about how he was doing.

Did her PCP order any tests around your concerns? There are basic tests that are ordered to rule out conditions that can mimic dementia but can be potentially treatable. The primary may have ordered tests for vitamin or hormone deficiencies and perhaps Lyme Disease. A CT scan is normally ordered to rule out some sort of lesion causing changes in cognition and behavior. If those come back negative, it's likely one of the dementias. Further testing can tease out which form but often does change treatment or prognosis. Dementia is progressive and terminal.

I would make the appointment for an evaluation but not discuss the upcoming appointment until the day of. When you do mention it, say it's just a routine Medicare-required check up with a new doctor since you don't like the other one. I got my appointment-adverse dad into many appointments validating his hatred of his neurologists which was useful for getting psychoactive medication trialed to dial back his anxiety which resulted in agitation and aggression.

@psg712 's excellent advice to call 911 should mom become aggressive is spot on. Since you don't seem to be a medically well-served area, it would be worth finding out, ahead of time, which ER has a geripsych unit ahead of time. Your Area Agency on Aging should be able to tell you the nearest location. Ideally, she could go there, sometimes a transfer is made from one ER to another hospital.

That said, this might not be a popular opinion, but if a comprehensive medical workup isn't possible because of personality or other circumstance, once the vitamin and hormone issues are ruled out, an official diagnosis won't really change next steps. I have a dear friend who didn't do any diagnostic work after the blood tests and imaging came back negative. Her 90-year-old mom never saw a specialist. Her PCP managed her care. Her outcome was the same as dad's but with a lot less stress and inconvenience. That said, given your stepfather's age, I would have a solid plan B for her care should he be unable to continue as caregiver because of illness, infirmity or death. One third of caregivers predecease their LO. Is there legal paperwork in place that would allow you to assume decision-making on mom's behalf or would you need to obtain guardianship? This piece of the puzzle might be more urgent than any doctor visit.

HB

H1235

Welcome. You have received some great advice. I agree with all the above comments. I want to also suggest that you keep a close eye on your dad’s ability to care for your mom. It’s a lot for anyone, but at his age maybe not even possible. Dementia is hard to understand and deal with. Many older spouses refuse to leave their pwd out of the decision making process, or take their freedoms away. Fiblits are a common way to get a pwd to accept things. It may be hard for him to lying to her or understand the benefits to her. This can lead to a lot of trouble. Keep a close eye on things. I would also strongly suggest researching a plan B. I second an elder law attorney. Will your dad allow you to become familiar with their finances? If Medicaid is necessary it can be complicated. It’s best to have a plan. If the pcp is willing to prescribe medication I recommend you get it. Just tell her it’s for her blood pressure or it’s a vitamin. Worst case ask the doctor if it can be crushed and put in her food. It’s time to start thinking about work arounds. Good luck.

housefinch

If possible, get video footage on your phone of her aggressive/agitated or violent behavior. That’s helpful for the doctor if your loved one seems together at the appointment. Show it to the doctor privately.

member1201

@psg712 @harshedbuzz @H1235 @housefinch

Thank you all so much for taking the time to respond with excellent advice, suggestions and support. I truly appreciate it!

I’ve been reviewing this info and from other posts and trying to educate myself. Sis and I are making progress with PCP and have documentation in place to be able to connect directly about Mom’s care. Suggesting to PCP Rexulti or similar and hope to move that forward quickly as agitation is daily (at varying levels). We are hoping it reduces or eliminates (best case) her agitation.

Planning to spend as much time as possible with her to help Dad, give him a break and frankly try to redirect as much as we can. Constant negative comments directed at him has become very difficult to take!

thanks again for all the support!

harshedbuzz

@member1201

Rexulti is a newer atypical antipsychotic. It is in the same class of medications as Seroquel, Risperdal and others which are older, available in cheaper generic form and have been prescribed off-label for years. As they're available as generics, there is no financial incentive for the manufacturers to take the steps to get the indication included. Don't be surprised if the doctor starts with something one of those.

HB