How to get someone diagnosed, person has 20 or so symptoms, getting no help

tallyshooter

Hi--

I'm living with someone who I am certain has symptoms of early onset Alzheimer's. The person has always been difficult. One day the person messed up a date by eleven years. I researched and discovered she had nearly all symptoms of Alzheimer's.

I spoke to my psychologist and was essentially laughed at (the person is 63 years old). The person's family members also do not believe me. I've read online and can see that when someone has had dementia for a long time, everyone thinks the person's behavior is normal, even when it's obviously not normal.

I'm currently locking my door at night to keep the person away from me. The person is not violent, but is capable of verbal assaults that are hard to deal with.

Any ideas on how to get the person diagnosed? I think the person may be at a stage that medication would help. Otherwise, if I'm right, I'm stuck waiting for the person to get disoriented and lost somewhere around town, or have a major incident in which the person could get hurt. I'm being straightforward with the person, but the person refuses to talk to a doctor about symptoms.

Thank you in advance for any ideas you might have.

If someone wants me to list the 20 or so other symptoms, I can, and I think most professionals would say, "Yes, the person has early onset Alzheimer's."

loveskitties

If you are looking to convince others of what you think is wrong, you might try doing videos of behavior with your phone. That way the behavior is documented for others to see.

If the person you are concerned about does in fact have alz. she may be unable to understand that there are any issues to discuss.

You don't indicate your relationship with this person, but it doesn't sound as if you have any legal standing regarding her health care.

If you are truly concerned for your safety, perhaps you should consider living elsewhere.

harshedbuzz

@tallyshooter

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

It can be difficult when you are living a reality and those who should be supportive of your refuse to even consider that your reporting is accurate. I can understand where family may be reluctant to accept what you're saying for a lot of reasons. Is your relationship one in which family, perhaps young adult children, would have their lives upended if you're correct? Is your relationship modeled on marriage with similar rights and responsibilities for care should the partner need it or is it something else? Do you hold the necessary legal documents to step in as her advocate or does someone else or do they not exist?

Your psychologist, of all people, should have at least heard you out. Same with family. I would suggest that the next time she starts with the verbal assaults, that you record it. I wouldn't confront her with it, but it could be shared with her PCP to start the ball rolling to rule out treatable causes of dementia like hormone and vitamin deficiencies which are treatable.

I would not talk to her about this. Many PWD have a condition called anosognosia which leaves them unable to recognize that they have had a cognitive shift and are less capable that before. This means they don't recognize the symptoms as something to be reported. This means using therapeutic lies (aka fiblets) and workarounds to get the diagnosis and keep them safe.

This is a handout the lists the 7 stages of dementia and what caregivers would notice at each stage. Do you see behaviors and symptoms listed in this chart?

Tam-Cummings-LLC-Handouts.pdf (tala.org)

HB

tallyshooter

Thank you for the 2 answers so far. Very good information. I'll respond in the morning when I'm fresh. Lots to think about now.

Denise1847

Good Morning,

I believe the denial by others and the unawareness of the PWD is very normal. I kept telling my husband's doctor at least 2 years before he was diagnosed that he was having memory issues, but she blew it off. I finally took him to another doctor and he was properly diagnosed. Of course, he saw nothing wrong with his behavior and would just say that "he was getting old and that it was normal." Even some of my family would say that I was being too critical. Unless people are around it all the time and really know the person, they don't see it. Also, some don't want to see it. It is a very difficult situation, but eventually people will see it but the PWD will not due to anosognosia. Given that your psychologist laughed, I would consider changing practitioners as not only is that very rude and judgmental, but also it reflects the professional's lack of knowledge of a neuro-degenerative disease.

The video of the behaviors is a great idea.

tallyshooter

Thank you. Appreciate your thoughts.

Davegrant

tallyshooter

Welcome to the site. My wife showed signs of personality changes in late 2016 and I sent a personal note to her primary physician. The physician referred her to a neurologist. who diagnosed her with MCI (mild cognitive impairment) _ A few years later her Primary Physician diagnosed her as having dementia and last month after a long assessment she was diagnosed with dementia of the Alzheimer's type. (2023) Same as the first diagnosis. I understand that Altheimer's can't be known for sure until an autopsy after the death of a person. My wife also has anosognosia, so she has no idea that she has a problem.

I deal with the situation a day at a time, joined a support group and follow ALZ connected on a daily basis to see what other caregiver are doing as the caregivers have a lot of actual experiences with their loved one and are willing to share their experience.

This disease led me into a who new world. I retired in 2017 so I really have been a full-time caregiver. They say that each person with dementia is unique and follow their own path. But there are things thing that I can do as a caregiver that makes my life easier as my wife goes through the various changes. Some of her characteristics have been suspicion, eating problems, urinary incontinence, stubbornness, bathing issues, hiding things, shadowing, sleeping long hours, wandering (only once, but then you have to prepare that it may reoccur). For each of these situations as they arise, I have to set a plan to solve the problem or at least make the environment as safe as possible. The first thing her PP recommended in 2017 was to eliminate the driving which we did. It was difficult but all of the solution proposes their own problems. I blamed the physician, as instructed, and was glad I did because my wife ranted for a year.

Then it has been a matter of getting the legal and financial house in order. Since I was retiring it made sense to review those documents at that time. My wife was still available for the signatures. I did all of this with an attorney. And then there is the family we have a blended family, and my wife took care of those relationships, but I had to take over those duties as well as the cooking and housekeeping.

We now are at another hurdle in life in that I have lung cancer and will hear next Friday how they plan to treat it; it may affect my caregiving. I have no idea at this time. We do have a number of children who live in the area, and they are helpful. But we may have to consider care outside the home for one or both of us. My wife cannot grasp the idea that I have a medical problem. It is beyond her ability to understand.

The most challenging part of this journey for me has been the emotional ups and downs and my ability to understand the disease versus the marriage. We have been married for 55 years, The support groups have been really helpful. I belong to two and everyone gets to talk, and each person has a different story but the same.

I never intended to make this so long, but it happened. I was trying to respond to your question of how to get a diagnosis. My answer is that it may or may not happen but another question you may want to consider is how to be a caregiver and how to take care of yourself in the process. I do realize that others have gotten a diagnosis quickly, but I am only telling my experiences.

Dave

tallyshooter

Long is fine, I appreciate you taking the time to write. I'm taking everything in, trying to figure out how to get care for the person. If you don't mind me praying, I will pray for you.

Phoenix1966

Sometimes, professionals can let you down. When I was finally able to get my grandmother in front of a doctor (she was a widow of retired military man, so this was on a military base), he decided that she “probably” had dementia, but any formal testing would only upset her. So he prescribed Donepezil and left it at that. Well, not giving her a diagnosis left me in a lurch regarding the POA I had for her, which was springing, and required her to be diagnosed as unable to handle her own affairs. So I had to wait until the inevitable catastrophe since even APS left her to her own devices despite her level 5 hoarding, which they were witness to(rotted food, flies, dog feces everywhere in her house, her unkempt appearance, delusions, etc.).

But, circling back to the doctor, I was able to get her to agree to a visit because I lied and said they would not renew her blood pressure meds without an in-person visit. Many employ a version of this, claiming their PWD’s insurance will stop coverage without a doctor’s exam. This may work for you to at least get them in front of a medical professional.

tallyshooter

Thank you. I read it once, and will come back and read it again because I will probably have to do something similar to get the person in front of a doctor. I'm stuck in a similar military situation, with the added fun of it being in a foreign country. I could actually go nuclear in a number of ways (force the diagnosis issue before the person wanders off or something else bad hapens), but that could produce legal issues. Hmm.