Trouble getting an appointment for diagnosis

Jackie_K

Hello community - I am not sure if anyone has advice, but I am struggling to get an appointment for my mother to get diagnosed. Her primary care doctor believes Alzheimers is the likely diagnosis but we cannot get the right care plan in place without an official diagnosis.

I am also scared for her safety - she seems to be declining and recently had a trip to the emergency room where she could not remember how she got there or why she was there. She does not remember to take her medications. She has been extremely resistant to help and I feel like a diagnosis will help give me and my siblings the information and support we need to work through this difficult situation. Right now we are just hanging by a thread.

All hospitals in my area (Chicagoland) have a year+ long wait to get testing done. This feels like an impossible situation, especially since I am afraid for her safety, and I am at the end of my rope. Has anyone else experienced this and do you have any advice to share?

thank you,
Jackie

Marta

Welcome to the boards, Jackie.

You have enough information to take action. You already know that your Mom is unsafe. Getting that diagnosis will not suddenly get her to accept your help. Most people with AD have anosognosia, which is an inability to recognize that she has cognitive impairment.

Step one is safety. Until you can get more definitive steps in place, arrange to stay with her for several days in a row to assess where her deficits are and put some safety measures in place. Take FMLA if you need to. Next, see an elder law attorney and arrange for DPOA if you haven’t already done so.

If you can do those two steps, you’ll be off to a good start, no matter the diagnosis.

Emily 123

Hi Jackie,

Great advice by Marta,

Can you get the PCP to give you a diagnosis of 'Dementia, Likely Alzheimer's' or 'Dementia unspecified'? That's a little broader, but would be worth looking into. 'Would a diagnosis of 'cognitive impairment' help?

Alzheimer's is very step-like in it's progression, with short term memory affected first. This list goes through the progression-you might not see each one item, but the losses go more or less in this order:

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

This helped me:

https://www.smashwords.com/extreader/read/210580/2/understanding-the-dementia-experience/Medium,Arial,Black,White,One-and-a-Half

Iris L.

Your mom sounds like she is unsafe to live alone. Start taking steps for safety, without without a diagnosis. Pay close attention to the stove and expired food in the refrigerator.

Iris

Jackie_K

Thank you so much everyone! I appreciate the advice and the help!

I have already contacted a few elder law attorneys so I am hoping to get that sorted out quickly. We are also trying different strategies to limit my mom's driving as much as possible (having groceries delivered, trying to get her medications delivered, etc.) I thought we had a good strategy for ensuring she was taking her medications every day but when I visited this past weekend I saw that she hasn't been taking them regularly. The difficult part is that I can tell that she truly believes that she is, and she is livid at suggestions to the contrary.

This is all new to me (thank you for the links, @Emily 123 ! so helpful!). Is there anything else I should be worried about or thinking about in these initial stages? Part of the reason that I am worried about not having a diagnosis is because she might be missing out on medicines or therapies that could help; I keep hearing that early detection is key. But again I am new to this so I don't even know what we are missing!

harshedbuzz

@Jackie_K

Hi and welcome. I am sorry for your need to be here, but glad you found this place.

You said:

Hello community - I am not sure if anyone has advice, but I am struggling to get an appointment for my mother to get diagnosed. Her primary care doctor believes Alzheimers is the likely diagnosis but we cannot get the right care plan in place without an official diagnosis.

Is someone attending appointments with her? Is someone able to discretely communicate concerns via patient portal or messages delivered on check-in? Has her PCP done the preliminary testing around this?

What care plan do you wish to implement? Many steps towards her safety can be taken with legal steps. A DPOA could allow most steps. If not, emergency guardianship should allow you to act on her behalf and might expedite a neuropsych eval if ordered by the courts.

I am also scared for her safety - she seems to be declining and recently had a trip to the emergency room where she could not remember how she got there or why she was there. She does not remember to take her medications. She has been extremely resistant to help and I feel like a diagnosis will help give me and my siblings the information and support we need to work through this difficult situation. Right now we are just hanging by a thread.

This is worrisome. If she can't manage her meds and her short term memory is bad, she's likely not safe at home. Please tell me she isn't driving. Are her bills up to date? Do you see mysterious withdrawals or donations? Is she on the internet/email? It's very easy for the elderly with dementia to be parted from their money. Cooking could be a problem. Check her dishtowels and pots for evidence of fires. Check the fridge and pantry for expired foods. Someone may need to take over administering her meds. For families where a parent is local, I always suggest making an excuse to stay over at their house observing for several days to get a clearer picture of her ability to function independently.

You don't need a firm diagnosis to start taking steps to keep her safe. IME, she won't accept the diagnosis or it the need for some oversight even if a doctor gives the diagnosis or "orders" it.

All hospitals in my area (Chicagoland) have a year+ long wait to get testing done. This feels like an impossible situation, especially since I am afraid for her safety, and I am at the end of my rope. Has anyone else experienced this and do you have any advice to share?

You could ask to be placed on the cancellation list. I would also consider asking for a neurology consult if she's in the hospital for some other reason.

HB

Emily 123

Hi again,

Your mom sounds like about where my mom was when we clued in. If you go by the 7 stages and it's Alzheimer's, things progress but start to become safety issues in stage 4. Stage 3 very often looks like age- related memory decline or 'slowing down', and might only be diagnosed with a intensive cognitive exam. You can ask her PCP if Arricept might be helpful. It's prescribed for Alzheimer's. Search the forum-some people say it helps slow the disease progress, some folks see no change.

If your mom got to the ER and wasn't aware why, then it really is time for the car to go. She doesn't have the reaction time or judgement to be driving, and it sounds like she could get herself lost. Dementia affects more than just memory, and so this is dangerous for her and others.

As the disease progresses, 'out of sight, out of mind' becomes a reality. This is bad when it comes to clean clothes or taking meds, but good if you want to disappear her car. Suggestions for the car: A 'part recall', where you take it to the shop for her, and the part is always on order. You might think this won't work but, because she's losing her ability to create a memory about the present, telling the passage of time hard for her and she will likely accept it. Or you can pop the battery connections off. I've heard of replacing that car's keys with old car keys on the person's key ring. I'd search the forums here.

You tube is a great resource and rabbit hole for dementia learning. The Teepa Snow videos are excellent, I like Vicki's explanations here about how this isn't just memory, and the description of 'moderate dementia' is just a great overview.

https://www.youtube.com/watch?v=awBm4S9NwJ0

https://www.youtube.com/watch?v=pqmqC-702Yg

https://www.youtube.com/watch?v=coiZbpyvTNg

https://www.youtube.com/watch?v=6cZTgG6kDjs

https://www.youtube.com/watch?v=9oVXP7uezkA

Now is the time to safety-net the financials, while she can still remember passwords to online accounts and to her computer. My mom had locked herself out of everything except her 'personal' email account that opened automatically on her ipad. Everything else--computer, billing email, IRS, banking, were password locked, and she had notes all over the house where she had started lists of passwords--well thank goodness, because some of them worked and we eventually got it straightened out. You can couch it as 'I was so worried when you went to the emergency room the other day, and thought of my friend's mom who had a stroke. None of her family knew how to keep up with her bills. I don't need your information, but can we please make a list together of your accounts and passwords and keep it safe, here, just in case? ''

Then start keeping an eye on accounts, make your cell # or email the recovery contact. Set up online notifications from the bank for charges past a certain amount, or however you want to set it up. Email accounts can get filters applied to send non-contacts to junk.

Record her family memories and histories too, if you get a chance. If she has old photos maybe have her spend a rainy day writing who the people or events are on the back of them. My mother's memories about family and events are intertwining now, so I'm glad she did this for us, and so glad I have the videos of her from then. It sounds like you're making a good start :)

mlowe6

I have been searching for someone to do a cognitive test for months in Indiana and found out that the speech pathologist who also does Nuero can do it. She’s been under my nose all along and can do a full assessment with her current insurance and works thru our local hospital therapy office. This might be a resource for you.

jfkoc

Ditto an above comment...diagnosis is a process that begins with eliminating treatable causes for dementia. Your mother's PCP can do this part easily.

In the meantime get an appointment with a neuro. There are wonderful centers in the Chicago area. I think I would start with Northwestern.

Iris L.

Don't wait for a diagnosis to work on safety.

Iris

Jackie_K

Hi everyone, thanks so much for these suggestions! It is so helpful for me and my siblings as we are trying to navigate the start of this horrible disease. I can't tell you how meaningful it is to have a community who is so willing to help and share in this way - I wish I would have reached out sooner.

I was able to get my mom an appointment with a neurologist this Fall. Her PCP said she needs neuropsych specifically but since we've had such an awful time getting an appointment (and no one is willing to put us on a wait list without an initial appointment), we are just hoping the general neurology appointment will help move things along. On my to do list for this week is to also start looking at options outside of the Chicagoland area to see if that might open up any earlier options.

@jfkoc I started with Northwestern (I am actually a cancer survivor and went to Northwestern for my care, they are wonderful!) - but they would not talk to me about making an appointment without seeing her medical records. After *weeks* of back and forth, tons of phone calls, faxed paperwork, etc. between her current hospital and Northwestern, I threw my hands up in the air and decided to pursue other hospitals. That didn't work out either.

I have explained to every hospital that we are concerned for my mom's safety and can't wait a year, and have been met by indifference. I am pretty shocked by how much pushing this has required so far and I'm worried that it's always going to feel like an uphill battle; it's like my mom has already been written off because she's old. It is so frustrating and disheartening.

Her PCP has already ruled out all physical causes, and I asked the physician when we went to the ER to help too. While they weren't able to help with any sort of dementia testing, they did do a head scan while we were there to rule out stroke and that came back clear. Alzheimers does run in the family so at this point I feel certain that's what we're dealing with, even if we can't get a doctor to confirm.

In the meantime, @Marta you are so right - we have enough information right now to know what we are dealing with and need to focus on safety. My mom can be clear and lucid much of the time, and she is extremely stubborn, so it took us awhile to fully understand what was going on, and we spent a lot of time questioning ourselves.

I am already overwhelmed by all of this; it has been frustrating, time consuming, and heartbreaking. From everything I have read, it doesn't get easier either...

jfkoc

It is overwhelming at times.

I agree with safety right now. I would find placement now. You do not want to search for a facility during an emergency.

Also get all financial and legal ducks in a row.

Then take a deep breath....you have a long journey but we are here for you.

Jo C.

I am sorry for what is happening and can understand your deep concerns and frustrations; it is truly a difficult situation and that surely is an understatement. It may be that your mother's primary care MD can contact Neuro, or a NeuroPsych Specialist and MD to MD or other specialist relate it is more than a usual concern due to severe safety issues and severe cognitive impairment; that it is urgent for her to be seen as early as possible and that may be able to get your mother in to be seen much earlier.

Make an appointment no matter what; if the primary MD can help get it earlier, then change it. If someone wants a copy of her records, they can be sent electronically from her MD to the specialist's office; that is no problem. The primary care MD can indeed document that there is "significant cognitive impairment," that will help.

As already stated, as difficult as it will be, you need to get in there and manage things before disaster occurs. Her judgment and reasoning are highly compromised; she is not capable of using logic. Her brain is "broken." Not going to be easy, but her safety is highly compromised as are other peoples. DO NOT LET HER DRIVE. PERIOD. Take the car, say it is disabled and in for repair. If someone can remove something from other the hood so it cannot be driven, that is okay too. If she causes or if she is even involved in an accident; this is a litigious society we live in - she will in all probability be sued. We recently had a Member here who was a caregiver and SHE got sued for her elderly parent's driving accident as she knew her Loved One was compromised but still permitted driving - not at all good; especially for the safety and lives of others. Persons with dementia have also been arrested in helatious accident occurrences, she must be protected from herself as she is unable to do that.

I would strongly recommend seeing that Certified Elder Law Attorney (CELA) asap; as in right away if you can. Have that person go over all concerns and setting up a good plan for her needs and how to position her and yourself.. He/She can also discuss getting Guardianship should that become necessary; and can also explain the process for an Emergency Guardianship.. Would your mother do "estate planning," NOT signing a "Power" of attorney; that is wrong language for her, but if you do not have a DPOA for her, perhaps if she would do "Estate Plannng" with a CELA, that could happen; just clue the attorney in. If applying for Guardianship, that is not such a concern.

If she is in the ER for any reason; you could discuss a Geriatric Psych admission with the ER MD out of the hearing of your mother. If in the hospital as an inpatient for a physical cause, then immediately ask the MD for an order for a Neuro consult.

There is some good information already given how to check for safety concerns; Harshed Buzz did a good job of it. Her meds would be a significant issue. Her stove . . . does she know what to do if there was a fire from any cause? How about strangers at her door? Financial evil doers on the phone? To repeat . . . NO driving. Yes, that leaves family trying to manage, but it beats having horrible harm come to others, and also being sued.

There is also the idea of contacting Adult Protective Services and ask for their input. I do not know how they would approach this, but it would be good to have knowledge of their purpose and what they can and cannot do.

When on your computer, it would be good to begin to look at various alternative living settings; Memory Care being a good start. You can get a good idea of various alternative living situations around you so If and when the time comes for her to be placed, you will already know what you feel comfortable with and can visit your several favorites without having to go through the longer approach from step one. Knowledge is power, and you will greatly benefit from knowledge from all you do and look into.

In the meantime, it will be hard to gain her cooperation; that sadly is part of it. We also learn to use "therapeutic fiblets," rather than using truth when it is necessary to get things accomplished. Fiblets when necessary become a tool in the caregiver tool box; it is far kinder for our Loved Ones (LOs) and keeps them from unnecessary meltdowns and also gets some things done that need doing. It is not a moral lapse, it is a kindness for our LOs.

Let us know how you are and how things are going; we are all here in support of one another and we all understand having lived or are living with similar situations.

J.