RSS Feed Print
How to get a diagnosis subtly, against their will?
Golly
Posted: Sunday, August 25, 2019 1:42 AM
Joined: 8/25/2019
Posts: 8


Hi!

I'm a daughter-in-law caregiver. Our family of 4 moved in with him after his wife passed 4 years ago because it was clear but unspoken that he was then already dealing with dimensia infringing on independence. We didn't want to move him after that loss, so we sold our home and made due living there.

But the loss of driving due to his car being unfixable became an aggression trigger for him. He blames me for this, and called the police to say I'd sold his car without permission. (It was at the mechanic's, as usual. But he wouldn't believe me. He invented this, and I just read that it's a common morphing of fact & fantasy in Alzheimer's.) This gentleman would shudder at the thought of this action normally - but, so it goes. I found myself in shock and humiliation - not wanting to tell my husband until he'd had time to relax after work. We aren't telling the kids at all because it would break their hearts to know of this distrustful fabrication and betrayal...they already know how forgetful and confused he gets. That's enough for them.

But I had to call the police and explain where the car was, and that he has moderate dimensia, and his fury over the car made me concerned about his likely lashing out at our mechanic, to get his way. They were understanding and appreciated my letting them know so they could verify the car's location discreetly if needed. But there I was - a benevolence supporter for the police - defending myself as if I were a criminal! And I had done nothing wrong! (Breathe deep, try to shake it off and not panic about what will go wrong next! Make dinner, stay calm !?!, manage things, stay out of each other's path today, dinner buffet style to avoid a confrontation escalating...COPE, COPE, COPE)

A year ago his doctor gave me "THE LOOK" and said, "Somebody needs to be in charge of his blood pressure medicine for him." There's no HIPPA signed - so that's grey legal area too, but I dose it out every morning in a pill box for him. And he flatly refuses to go to his neurologist for an epilepsy check-up where I her it would be reasonable to slip in a test for Alzheimers.

Also, making appointments (and getting the information wrong) became a hassle last year - so I've been driving him to all appointments, am called in by the doctors to clarify things, and order his refills and cover his co-pays. 

Since there's a blame game toward me, I asked his other son for advice. He thinks it may be time to get a POA. I agreed, but didn't want that to be me (regarding the car's disposal). I do want the HIPPA handled so I can mention by email to his doctor my concern that he has Alzheimer's. This being "off the grid" status is not safe considering delusional and paranoid accusations to the police.

How do you get a diagnosis that isn't wanted?

 


CynthiaY
Posted: Sunday, August 25, 2019 2:07 AM
Joined: 8/25/2019
Posts: 11


Gosh, this sounds challenging.

My first question is what does your husband say about any of this? It's his Dad, right? He needs to step up here.

We were lucky in that my MIL was feeling worried enough that she asked her primary care physician for tests and was referred to a neurologist before any of us became really aware of the issues. It seemed to me that she was just always a little dotty since I met her 12 years ago, but I now realize she was probably experiencing symptoms years before any of us recognized it.

Best of luck!

 


Victoria2020
Posted: Sunday, August 25, 2019 2:18 AM
Joined: 9/21/2017
Posts: 862


Hi Golly-

I'm wondering where your husband is in this- why he can't talk to his father and deflect hopefully from you.  And talk to his Dad about getting the rights documents done. He would be the logical person to get the DPOA.

As for the doctors- while they can't talk to you without a release you can let them know your concerns-  a bullet list of behaviors and changes you see that concern you. About a week lead time before with a follow up call a couple of days before the visit to be sure the Dr got the note. 

Good luck, raising kids, running a house and taking care of FIL plus a marriage is a very full plate. Don't forget you.


harshedbuzz
Posted: Sunday, August 25, 2019 6:19 AM
Joined: 3/6/2017
Posts: 1655


Golly-

There's a lot to unpack here. Firstly, your DH needs to be looped into all aspects of this situation. He should be taking the lead on this as the adult child providing hands on caregiving. 

Next, you need to sort out the legal aspects of this situation. Your FIL needs to have a POA for dad's financials and for medical care. This needs to be your DH as primary agent with perhaps you or his brother as a secondary agent. I do not like a situation where siblings share or split the duties when one of them is doing all the work. You also need to sort out a will and plan for housing for your family when dad dies or goes into care. My advise- see a CELA for these documents and to do Medicaid planning. Most states allow a child to keep the parents' home if they lived there and provided care for a period of time. Neglect this, and his home becomes an asset to be used for nursing home care should he need it. 

If your FIL will not sign the papers, a CELA can explain options to gain guardianship. 

You have to get him in for a workup by whatever means. There are conditions that mimic dementia that are treatable and to a degree even reversible- it would be criminal to allow a hormone or vitamin deficiency rob you FIL of his cognition. 

The PCP already gave you the look, s/he knows something is going on. Perhaps they could start the process by getting the necessary bloodwork done. Some people get their LOs into the doctor by saying it is required for a prescription renewal or because the insurance company will drop them if they don't. You contact the doctor ahead of time with a bulleted list of your concerns. Others wait for a crisis and have their LO hospitalized and worked up while there. 

Just an opinion, ignore it if you wish but this secrecy is going to bite you in the butt. Assuming Alzheimer's or some other dementia, "protecting" your husband from dad's outrageous behaviors or your kids from the official name of the disease is not a good strategy. You need your DH on the same page as you so you can work as a team. If you don't share the events of the day, he won't develop a sense of urgency around this or take ownership of what is his responsibility. Your kids are watching- they know something isn't "normal" about their granddad. IMHO, it's better to empower them with information-including the clinical name of the condition- than to let them think he's a jerk and wonder why you have chosen for them to live with him. Secrecy creates stigma.

HB
Gig Harbor
Posted: Sunday, August 25, 2019 10:19 AM
Joined: 3/10/2016
Posts: 563


Possibly have your husband use vacation time and let him take his father to doctor visits. The FIL does not trust you but may trust his son and that will help conversations with the various doctors. His son can also pass out his meds to him. That will allow you to step into the background and avoid some of the flack.
Rescue mom
Posted: Sunday, August 25, 2019 12:25 PM
Joined: 10/12/2018
Posts: 909


Nothing different from me, just another voice saying your husband, his son—or the other son if he thinks he can do more or better—-needs to take some major involvement and action here.
dayn2nite2
Posted: Sunday, August 25, 2019 12:39 PM
Joined: 6/20/2016
Posts: 1955


Tell your husband that he’s responsible for getting his father a diagnosis.  Give him a deadline for some progress to be made.  He also needs to solve the aggressive behavior.
jfkoc
Posted: Sunday, August 25, 2019 1:15 PM
Joined: 12/4/2011
Posts: 17192


Hi Golly...I agree that it would be great if all of this were not in your lap but sometimes that is how it is. It may take some doing to get that switched.

In the mean time I want you to know that not having a HIPAA does not prohibit you you from giving information to your father-in-law's Dr. By all means send any and all notes and concerns you have to the Dr's office.

If you do want to bow out and want to hear about some work arounds others have had let us know. While this situation is difficult it is not really rare, unfortunately.


Greg G
Posted: Sunday, August 25, 2019 7:20 PM
Joined: 2/8/2017
Posts: 920


Hey Golly,

Have to agree with the others.  You need to get your husband deep in the middle of this.  You can help out a lot but it should not fall into your lap alone.  As stated, every one needs to be on the same page.  The safety of your children, your marriage and your health depend on it.  

I'm thinking of a member here that can tell you personally and in no uncertain terms what happens when the daughter-in-law tries to do the right thing but is thwarted by the actual blood relatives.  Not a pretty story.

As for the meanness directed towards you, you are the face of both help and taking away/loosing freedoms for the person with dementia.  It is a two sided coin.  For that, you have to develop a thicker skin. And someone to talk with to get it off your chest.  Do NOT let if fester inside you.  You will take it out on others (you kids probably) and it will cause stress and anxiety to yourself so that you become sick.

Good luck and best wishes, Greg


gubblebumm
Posted: Sunday, August 25, 2019 8:31 PM
Joined: 7/12/2017
Posts: 1303


Your husband?  Is he missing or what this is HIS job to get this legal stuff taken care of.  And why a delay of the DPOA, I know you don't want it and I think that's smart but common people, take care of business
Golly
Posted: Sunday, August 25, 2019 9:13 PM
Joined: 8/25/2019
Posts: 8


Thank you all for your responses.

I failed to mention that my DH does not drive due to partial blindness, but he does hand out the medicine and step in when things get heated.

As it turned out, my DH handed out the medicine this morning, and his father slapped the container hard out of his hand, hollered that he didn't want to be treated like a client. Then he pounded the backseat of my car (with our kids next to him). Then his eyes bulged in rage as he shook his fist at me (in the driver's seat) and swung.

Fortunately I leaned away in time and exited the car and got the kids out, but suffice to say the kids now know what Alzheimer's is, that these are symptoms, and that we are on the case to get help. My DH also had to stay home from church with him and come to terms with the severity of issues he had not yet seen since I typically am the target.

I had not heard of an elder law attorney before - so we already were contemplating the fact of having to move if his home becomes the care asset. They always meant it as an inheritance, but his care is vital. If there's a way to preserve the property from being absorbed in elder care fees, that would be nice. And 4 years of care have already been provided.

As for me taking care of myself...I already told my DH that I intend to take a "work trip" for a couple days to regain some sense of peace. The others are sad but adapt better. I have PTSD which is in strong recovery, but when I'm attacked, it takes way more out of my system than I can spare. Frankly I feel hunted. That isn't OK.

So I called Kaiser and told them what happened. They called it combativeness, asked the time, and then let me know it was mandated that they report it to the police. Did I want to press charges? *BLINK* In a moment I had all the validation I needed; this is serious! I felt so relieved! I declined pressing charges, but now his behavior is on record. They also conveyed the issue to his primary physician. AND they called me an hour later to make sure I was OK! I don't even have their coverage for myself. The on call MD called him to check how he was also. My DH (who is brilliant!) played the inquiry off as though he had no idea about any appointment.

We put my BIL on finding VA options for care, and as the point person about the car's disposal. He will also take him in for a checkup and get a diagnosis. My DH offered to stay home tomorrow, but unless he's here every day - what's the point except lost wages? So I decided I will lock our room and do my remote work from the library...or maybe Peet's Coffee. A solution is on the way this week, maybe with meds - or with some other solution. All I need to do is stay safe and get the others to work/school & back.

The most empowering thing I heard today was if combativeness occurs again, call 911, and don't think twice. 


CynthiaY
Posted: Friday, September 6, 2019 3:56 AM
Joined: 8/25/2019
Posts: 11


I'm so glad you are getting help and moving forward.

I know we can't do much, but I hope it helps a little that there are others experiencing what you are going through.