What can I do when Dad refuses to be diagnosed?

Jedwalker00

Hi...I am new to Alzconnected. 7 years ago my husband and I moved my dad in with us. He was struggling with keeping up with his own home. My mom passed away of breast cancer in 2005 so he did well for a while after her death on his own. Once he was here we started to notice little things here and there. Over the last 3 years I have tried to get answers from doctors but my dad refuses to be tested. He would answer the questions  when asked by doctors and therefore for years they would do nothing. Finally last year his doctor saw it. He gave me a referral for a neurologist, but that visit ended up being a waste of time. My dad refused to get ct scan done and has refused to return since. I have tried to trick him into going but he still refuses to go inside. He is constantly accusing us of stealing bank statements and cash money from his room. He refuses to give up his car so we are constantly blocking his car in so that he can't leave. My dad has always been a control freak and I feel that (whatever it is that he has) has only amplified this trait. I am the oldest of 4, but neither of my siblings get along with him, hence why he is here with my husband and I. I am suffering from anxiety and depression due to his constant accusations and bad mood. I don't know what to do anymore. Without an official diagnosis, I feel like I can't do much. Any suggestions?

QuinnieSDF

I'm so sorry to hear about this struggle with your dad. I know how hard that is.

We started noticing my dad's Alz symptoms in 2018 but he refused to see a doctor for two years. When he finally did go to the doctor, he wasn't forthcoming on any of the interviews. Ultimately, my dad agreed to get a brain scan because he had a concussion (he thought his memory problems were from the injury). My mom ended up bringing him to three different docs before he was given the option to do a brain scan which confirmed his diagnosis. He didn't accept it at first but once his siblings and friends started talking with him about it in a supportive way, he changed his attitude about it. It is still really hard to talk to him about Alz when he's on the defensive.

With that said, trying to force your dad to go to the doc against his will might be making him dig his heels in even deeper. Do you have other relatives who your dad is close with who might be able to weigh in? An uncle or aunt? Does your dad have close friends who might have noticed what you have? Maybe you could talk to them about his symptoms and resistance to getting a scan. Sometimes parents have trouble listening to the advice of their adult children but will be open to hearing encouragement from someone in their generation. It's possible your dad will be open to getting help, but the suggestion might be more powerful coming from someone who isn't his kid.

Hope this helps! Sending you strength.

BlackCat1

We went through the same thing.  As the disease progressed we felt we were relegated to the role of "emergency manager".  Our LO broke her arm and refused medical treatment while at the hospital, she stormed out.  Eventually she had another emergency medical event that caused hospitalization and then placement.  It has been a very hard road with her agnosia, terminal restlessness, nonstop pain from the broken arm that never healed properly. agitation, and nonstop UTI's.

Jedwalker00

Thank you! I appreciate the input. I will speak with my aunt's (his sister's) and ask them to speak to him. It is worth a shot.

Good Intentions

Hi I read your post and wanted to send good thoughts your way. My aunt also refused to go to a neurologist and get scans, assessments or tests.  Regular physician and also hospice medical director gave her a diagnosis from interview visits and from her behavior. Hospice staff is a big help, I mistakenly believed that it was only for terminal patients, not true. Medicare will also pay for limited days for a home health visits. Thinking of you, the anxiety and depression we feel from being caregivers is so real. I have to set boundaries and get time for my health or I can't help anybody. Keep looking for any assistance you can get. Social workers know a lot of community resources.

mommyandme (m&m)

Others wiser and more articulate will probably chime in…what I’ve learned is this:

Do you have appropriate legal paperwork in order? POAs etc? That might be very important going forward.  

Possibly tell him that Medicare or whatever health insurance he has is requiring a doctor visit and whatever scans are ordered to continue to support his health. 

The accusations and distrust is pretty normal though not at all comfortable.  I understand. 

I’m so sorry you’re finding yourself here but glad you came.  This is a hard road and no fun at all.  Lots of wonderfully wise and supportive people here.  

Jedwalker00

Thank you so much for your input. It helps to know that I am not alone and that my feelings are valid.

harshedbuzz

Jedwalker-

To my ear it sounds as if you have 2 options.

One option would be to force the issue by attempting to obtain guardianship. I have a friend who needed to do that with his dad; he and his brother were able to work with a certified elder law attorney to accomplish this. I think it helped that both sons were physicians and that dad had lived in an in-law apartment with the older son for over a decade before this became necessary. The dad had a lot of cognitive reserve and could showtime like it was his job; he was even on the ball enough to hire his own lawyer to fight this. But the medical exam and cognitive assessment were enough for the sons to prevail. Nothing much changed-- dad stayed in his little apartment for a few more years until he needed to go into MC. The sons were able to protect dad from scammers and poor financial decisions which meant he could afford a nicer MC and they were able to hire in more help as needed with housekeeping and meal prep while the families were at work. 

My aunt was forced to do the same for one of her older sisters. Again, the judge ordered a cognitive assessment and assigned the aunt WD a guardian ad litem to represent her interests during the proceedings but that was more of a formality. 

The other option is a Plan B. If he has dementia, it will progress and you may be able to wait this out until he is more impaired and amenable to getting into an appointment. It may also be possible to get him evaluated with a neurology consult while hospitalized for something else. I was forced into some version of this because my dad with dementia had convinced her his impairment was a normal part of the aging process until she almost died with him as her advocate. A few weeks later he had a psychotic episode  and we took him to the ER of the hospital in my area with a Memory Center. It wasn't ideal-- and the wait probably cost dad some significant cognition because one of his mixed dementias was treatable. He improved a lot for a time.

JDancer

When it became obvious my husband had dementia, I took him to a neurologist. I wanted to rule out correctable issues such as vitamin deficiencies, tumors, etc. Other than that, a diagnosis isn't that important, IMO. Dementia is about dealing with the symptoms, not making it go away. It doesn't go away.

If others have found it important, or helpful, to have an official diagnosis, please explain it to me. Maybe I'm missing something.

mommyandme (m&m)

JDancer,

We needed an official diagnosis for moms Long Term Care insurance to activate and even so, she had to be deemed at a moderate stage for it to be available.  My bro wasn’t sure if it was a smart decision for her when she invested in it, with the help of her financial advisor.  Now we are so thankful she prepared for her own care prior to her diagnosis, as its been invaluable.  And it’s only available because she has that official diagnosis. 

SusanB-dil

JDancer - it can be helpful to know which type of dementia you are dealing with.  Some medications work better with one type of dementia than others, and thereby sometimes stabilize better.  Such things as agitation in an Alz PWD may be helped by one medication, but the same medication could make things worse in someone with another type.

and adding - also agree with m&m - insurance purposes.  both for activating insurance, or if necessary, to take a LO off the road.

Iris L.

JDancer 

. Dementia is about dealing with the symptoms, not making it go away. It doesn't go away.

This is a very important point.  Many people don't understand this, nor that the dementias are terminal.  

Iris

JDancer

Mommyandme and Susan- Thanks for replying to my comments. I hadn't thought of the things you both mentioned. 

Every situation is different. 

Jedwalker00

I am so thankful and appreciative of all of your replies and suggestions. Some of you have mentioned things that I never thought about before so this is truly helpful.  I had another rough day with my dad yesterday and he became very agitated and angry, to the point that I had to go into my room and lock the door only for him to come to my door and literally bang on it so hard that I thought he would break it.  Luckily, my husband arrived from work in the moment and my dad quickly tried to act like nothing was going on.  The way he turns it on and off is scary to me.  I work from home and I am now starting to feel a little scared to be home alone with him.  I am definitely going to be reaching out to a social worker and hospice this week and see what they say or can do.  Again, thank you all so much for taking the time to reply and for giving such good advice.  This forum makes me feel understood and not so alone in this battle.

harshedbuzz

Jedwalker00 wrote:

I had another rough day with my dad yesterday and he became very agitated and angry, to the point that I had to go into my room and lock the door only for him to come to my door and literally bang on it so hard that I thought he would break it.  Luckily, my husband arrived from work in the moment and my dad quickly tried to act like nothing was going on.  The way he turns it on and off is scary to me.  

You may be able to leverage this into an evaluation as well. Two thoughts come to mind. 

Firstly, you need to be proactive about your safety. You need to remove or lock up anything that can be weaponized. That means not just the obvious knives and guns, but also things like golf clubs, cast iron pans and small tables that could be weaponized. Make sure you have a charged cell on your person at all times. Locking yourself in a safe place (ideally with an exit to the outdoors) is exactly what you should have done. That's great thinking in the moment on your part.

My first thought is trying to get him evaluated via a geripsych admission. Find out which hospital in your area is has a geriatric psych unit. When dad starts up with aggressive or violent talk/behavior record him with your phone and call 911 for help. If he turns it off quickly, play your recording to document the behavior and ask that he be transported to the geripsych unit's hospital. Your Area Agency on Aging can help you figure which this is. 

Being able to "turn it off" is a form of showtiming. My dad could put on some Oscar-worthy performances when others were around for a long time which made getting him medicated for his at-home behaviors a challenge because the geripsych didn't understand the magnitude of what we were reporting. A video recording emailed ahead of the appointment made the difference. 

The other thought is that your dad seems to clean up his act around your husband. My dad had some obvious misogyny going on as well as a fear of men he knew were physically bigger/stronger than he was. My dad once acted out in front of my 22 year old son who told him to "Knock it off" when he caught dad in one of his threatening moods. Dad was a little afraid of him; he's a big guy. I wonder if your husband could force the appointment through a little intimidation. I have a friend whose mom had dementia at the same time dad did. Her mom's authoritative-parent persona remained well into the disease process making it hard for her daughter to gain compliance around anything mom didn't want to do- but when her husband suggested or asked, she became cooperative. 

HB

aod326

Another perspective to add - does it matter whether or not you have a diagnosis? If it's in order to activate LTC insurance, as mentioned, then yes. If he needs a diagnosis in order to claim disability (dependent on his age), yes. Other then that, does it matter? There are a couple of medications that help some PWD in the early stages, to slow down disease progression. However, they only work for a percentage of PWD and only for a period of time. Whether diagnosed or not, the symptoms will be the same. My DH wasn't diagnosed with AD until a brain autopsy.

Just a thought to consider.

Greentea

DH would never submit or cooperate re any diagnosis although his memory is evaporating daily and he acknowledges confusion. I’m a caregiver/wife (married 2 1/2 years). He has REM sleep behavior disorder, again no professional diagnosis but I moved to another bedroom due to his screaming and night time violence. I suspect dementia plus Alzheimers. Of late, he’s become fearful. I don’t argue and remain calm regardless. I assure him constantly I’m here for him. Reading the message boards has helped me realize I’m not alone and there’s little and nothing to “fix” things.

ReallyScaredSon

Jedwalker00 - what you described has a lot of similarities to my Mom's situation.  I live about three hours away from my parents, and have a family of my own, so couldn't/can't be with my folks as often as I'd like; I'm also an only child.

My mom was either in denial and/or suffered anosognosia (inability to recognize that something is wrong).  Whichever the case, it doesn't really matter.  But I understand the struggle with getting someone professional help when they are completely unwilling.

If you haven't gone down this road yet, you will have to get comfortable with telling little fibs.  My dad and I struggle with this, as it feels "wrong" to not tell the truth.  But in situations like this, you truly have the other person's best interests at heart, and are trying to "trick" them into taking steps that will be beneficial for their health and well-being.

The common "trick" that is often suggested is to get your loved one to a doctor by any means necessary.  Say it's a routine checkup ordered by insurance, or something like that.  But before you actually go in to see the doctor, communicate your concerns in advance.  Then, ideally, you can have the medical staff in on the "ruse", and they can perform some additional tests that are "required by insurance" (or whatever story you have come up with).

And even that may not work.  It didn't work in my Mom's case.  My dad was trying to take care of her and manage everything more or less by himself, at home.  It worked reasonably well until she started having "episodes" of extreme agitation.  And these episodes more often that not happened in the middle of the night, during the dead of winter.  In this state, she wouldn't recognize my dad and would insist he leave.  They live out in the middle of nowhere, where is he supposed to go in the middle of night when it's freezing outside?  Not to mention, he doesn't feel comfortable leaving her alone.

Ultimately, things were basically managed via 911/ER.  She had a particularly bad episode, along with suicide threats that forced my dad to call 911.  And she went to the ER and was ultimately admitted to the hospital, where she stayed for two weeks.  She hasn't been home since; she went from the hospital to a memory care facility.  It was a hard decision to make, but my dad just couldn't take care of her by himself.  She wouldn't take her meds, and she certainly wouldn't let anyone come over on a regular basis to help.

This forum has been an invaluable resource for me, it's filled with incredibly wonderful and helpful people.  I in fact came here to ask another question, but saw your post, and thought I might be able to share my experience and hopefully return a small fraction of the support I've received.

You can take some "behind the scenes" steps to help get you better positioned and prepared for what is to come.  Find a good elder care attorney in your area; they can help with planning, both financial and legal.  You might also look for "aging care professionals".  I was able to find a couple of these folks in my parents' area that are both social workers and nurses; I talked to them on the phone a few times to get some helpful information.  A good elder care attorney ought to be able to refer you to these kinds of folks.

If you're not comfortable calling 911 if things get too out of control, look into Emergency Response Services (EMS) in your area.  You might also call your local sheriff, and explain the situation.  They might be able to direct you to EMS, and/or let you know of other potential avenues you can utilize in the event of a crisis.

I have some posts here, where I asked very similar questions.  Basically, just before my mom went to the hospital (and ultimately ended up in a MC facility), it felt like we were in crisis mode with no plan.  And, if the PWD is unwilling to cooperate with getting the necessary medical attention, then the "plan" may in fact to rely on EMS/911 to get the PWD in front of a medical professional.

windyshores

We never did any testing or scans or appointments specifically geared to diagnosing dementia. In time, and fairly quickly, it became obvious to the PCP who then invoked my proxy so that I can make decisions for my mother.  There may be bureaucratic reasons for diagnosis (insurance etc.) but in reality it often serves no purpose. That said, it would be good to know if this is Alzheimer's, Lewy Body, vascular etc. Perhaps the PCP can help with this.

The scary behavior you are describing is concerning. In my extended family, once behavior got scary, the person was moved to a facility.  I second the suggestion to seek admission to a geriatric psychiatric facility for evaluation and treatment with medications that calm him. If 911 is the only way to get him there, then use it.

Do you have Power of Attorney? Are you primary proxy? Is there a MOLST or other form limiting extraordinary measures?   If you use a hospice service, they can help you with some of that, as can PCP, or yes, an elder lawyer.