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

member1201

@harshedbuzz

thanks for the info!

member1201

Update: just spent an hour on the phone with Step-Dad and Sis. Mom’s agitation, physical and verbal aggression towards Dad is escalating quickly and is daily.

We are calling PCP daily to try to get appointment so he can prescribe new meds mentioned. We are anticipating an appointment with neurologist as next step. If PCP won’t prescribe new meds and leaves it to neurologist, and if that appointment is several weeks away, what next?? I don’t think Dad can deal with this daily without any relief. Do we take her to ER? Look into admission to psych hospital? We are drinking from a fire hose and this damn disease seems to be moving fast and winning! Sigh…

Any and all guidance, suggestions and thought appreciated!!

Gina224

H1235

I think you need to seriously consider a geriatric psychiatric hospital. You might want to at least call and inquire about bed availability. Our mental health care system is lacking and an opening may be hard to find. You may have to look around for one that has a bed available and it may mean a long drive. Even if the PCP does prescribe medication that will probably not be an immediate answer. I’m not a doctor, but mental health medicine is usually started at a lower dose then after as long as a month increased again, repeating. If the medication is not working effectively even at a larger dose she would have to be weened off and a new medication started. It is a process. Sorry this is not better news.

In your original post you mentioned your mom is in denial. People with dementia are often not able to see their own limitations or symptoms. They are not denying their brain just can’t recognize that anything is wrong. This is called anosognosia.

psg712

Agree with H1235 on the mental health care challenges. It sounds extreme, but sometimes for the safety of our loved ones (both the PWD and the caregivers), we have to resort to emergency care. You don't want that trip to the ER to come when your stepdad or someone else is seriously injured. Call 911 during one of her violent episodes. Then refuse to take her home from the hospital until her behavior is addressed by a psychiatrist. It's not retribution, it's love, doing what she cannot choose for herself.

member1201

Heard if 911 responders notice any evidence of bruising (which may be due to bumping into things and slow to heal), domestic violence may be assumed and arrest. Any experience with this or thoughts?

harshedbuzz

@member1201

It's hard to answer a question about APS involvement brought in based on a mandatory or other reporter.

I find with my mom, who doesn't have a dementia diagnosis, but who has skin like wet paper and has landed in the ER after falls and unrelated medical procedures that she'd likely be questioned. I've had this happen a few times to me. One time mom was in the ER for a COPD exacerbation with a terribly bruised and bandaged forearm and the admitting RN asked me to leave the room for a bit. She interviewed mom, undressed the wound (a skin cancer excision with stitches), checked the electronic record and saw the procedure from 4 days ago listed. TBH, it's been the same with falls when she's hit her head or had a small fracture. I don't think there's a risk if the story tracks.

That said, if there were no record of you reaching out to have her diagnosed and having given a history to the PCP of these behaviors, there might be an issue. The other piece is that if there was a concern that couldn't be immediately put to rest and examination would be done. If she were being abused, she would have a different pattern of bruising and might even have scars and healed fractures. That was part of the trigger in the ER for my mom— the bruise was consistent with someone grabbing her arm and pulling her. Plus, a full body exam with a team she doesn't know might trigger the very behavior that confirms something like dementia.

HB