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Resources Needed
Posted: Sunday, September 8, 2019 9:27 PM
Joined: 9/8/2019
Posts: 2

  Looking for input and or resources for my step mom, and my Dad taking care of her. Trying to find in home visits or exams that could assist with possible diagnosis. Suspicion is dementia, but she refuses medical exam. Always has, she will not see a doctor of any kind. My Dad cares for her, but is feeling she is getting worse and isn’t sure how to handle. Physically she is ok and still able to handle hygiene basics. But mentally she is deteriorating. She is stuck in her childhood, focuses daily on the minimal same topics and gets highly agitated easily. 

She is also now awake at 2am saying she’s ready to go home (New Jersey) to live with her Mom. Who’s been dead for 30 years. She doesn’t go back to sleep and repeats the same statements and expressions non stop daily.  
Hoping for an option to get her looked at without her feeling like she’s seeing a doctor. 

Any input is appreciated. 

Thank you, 
Posted: Sunday, September 8, 2019 10:46 PM
Joined: 9/8/2017
Posts: 2262

She seems like she's getting far along in dementia.  I'm not sure there are home visits in this case. My dad did receive home health before, but he still had his current doctors and primary.  
Your father is going to need help and soon. 

Is it possible to have her go to ER and ask for a diagnosis if she gets admitted?  Your father can say that he's seeing something odd or off and they can do some tests there.  Bring all her current meds and he can describe what is happening.  

I'm not sure if she will be able to discharge herself, but I would assume he can speak for her to make sure she gets a diagnosis or answer of what is happening.

I hope your father can get help with her.  This disease is awful and when she deteriorates more, he will end up having to do absolutely everything for her. That's where I'm at with my father.  He needs 24/7 care, bed or wheel chair bound, diaper changes, hand fed, bed bathed, brush his teeth, grooming, everything. 

At the stage your step mother is currently at, my father was there early 2017.  It's been over a 1 yr and half that he can no longer walk.


Posted: Monday, September 9, 2019 8:57 AM
Joined: 9/8/2017
Posts: 2262

I’ve been thinking of this some more. If she is admitted in an ER, I’m guessing she would still be referred to a neurologist. Hopefully somebody here knows if there are any type of mobile physicians for these type of issues. However, I suspect sometime soon your dad will be taking her to ER. Since she hasn’t seen a doctor for a while, it looks like she needs to go somewhere soon for any other health concerns. Check and see If someone can help him with that part. Is it possible she can be lied to and take her to a medical office? That’s what I would do if she’s already pretty lost. She might not know what’s going on anyway,...???....
Posted: Monday, September 9, 2019 11:28 AM
Joined: 9/8/2019
Posts: 2

Ruth I appreciate your input, this is surely a difficult one. Good luck with your Dad. Be strong! 


Posted: Monday, September 9, 2019 2:38 PM
Joined: 12/4/2011
Posts: 18367

Can you come up with a story as to why she is going to the Dr? For example...the insurance company demands it for both your mother and father. Your father can then take the position of moaning about it right along with your mother.

I would try to find the most appropriate Dr possible since getting more than one or two appts is going to be difficult. To do this you need to understand the correct protocol for diagnosis.

I would communicate in writing everything you can think well before the appt.

Posted: Tuesday, September 10, 2019 2:26 PM
Joined: 4/1/2014
Posts: 5054

Not knowing how old your parents (mother in particular) I can't even say if this is Alz as many other illnesses mimic dementia, but let's say it is, which case you may have to give your mother no choice in the matter. Is she on any medications? Tell her she must see a doctor to get more of that med (even if she doesn't) and take her to see a doctor. Before she can get help with her delusions and outbursts, she needs to see someone. Or, like many of us have had to do-we have to wait till something  bad happens (a fall, a mental breakdown, violence) and then take them to the ER.

If it isn't a brain disease but something else-she could very well be cured if she sees a doctor and they have a treatment! Good luck.

MN Chickadee
Posted: Tuesday, September 10, 2019 6:49 PM
Joined: 9/7/2014
Posts: 1008

Therapeutic fibbing is important in this kind of situation. Finesse the situation. You or dad set up the appointment with a neurologist,  don't give her much warning, take her for an outing, mention casually that both dad and step-mom need to do their quick senior check up. Maybe Social Security requires it annually to get payments. I assume since she won't see doctors she doesn't care about health insurance/Medicare, but some people tell their loved one the health insurance requires a check up. Maybe it's just a "blood pressure check." It can be for both of them. Her husband is going too, it's no big deal. Do and say whatever it takes to get her to the clinic. In this scenario it would be extremely important for you to communicate with the neurologist ahead of time about symptoms. Write a letter or email, call to make sure they got it, bring a paper copy. Tell them the lengths you will have to go to in order for her to be seen. List the symptoms and things that concern you, the timeline of those, and any other pertinent information that you or dad won't want to bring up in front of her. Given how extreme her behavior is, I would try anything you can before she burns your Dad out. Being up all night is not sustainable.

Getting a diagnosis is important, since there are many kinds of dementia and they don't all respond the same to treatments or medications. But in some cases it just isn't possible. Some people only get diagnosed after a crisis happens. Some never do. Some have to take their loved one to the ER, either themselves or EMT/Law enforcement because they are a danger to themselves or others. 

You and your dad will  need to learn communication techniques and workarounds. Come here and read often, look at the Alz Assoc website. They also offer a hotline to help families trouble shoot problems and can refer you to local resources. The service is free. 1-800-272-3900. I personally liked a book called The 36 Hour Day as a primer for having a loved one with dementia. Best wishes.