FTD and Assisted Living Placement?

4mouseketeers

Hi there -

My dad (age 75) was diagnosed last year with Behavioral Frontal Temporal Dementia, and it has progressed quickly. We believe he has had it for 2 yra possibly, but we only just figured it out last spring. 

We are now at the stage where we don't know if it's time to place him in an Assisted Living Facility. He is ADAMANT that he won't go. 

His neurologist has said that he is incapable of self-awareness of his own limitations.

He is able to drive about town getting things done (over-spending big time), although his driving worries us immensely, he goes to the golf course, and yesterday remembered to be up and ready for his doctor's appt. So he's still able to function "ok" on a daily level - but we're concerned that one "bad" day or one "bad decision" could prove disastrous. We don't know what to do. 

He just bought a new Lexus last year and he says - you can't take it away from me, I bought it, it's mine, and I don't care what anyone thinks, I'm driving. 

Here are the most crucial things we are seeing:

Hoarding, to include food (food safety is a concern)

A once meticulous house is now cluttered, hoarded and out of control (of course he says it's all fine, that he's just "spring cleaning")

Impulsiveness, Aggression and declined ability to make good decisions

Cannot plan his days and does not have a good control of time - might eat dinner at 11pm or 4pm... might wake up for the day at 2am. Some days he says he's going to do all sorts of stuff for the day, but can't get the day straight in his mind enough to do more than one thing. Or other days he's driving all over town doing all sorts of things the entire day.

Has entered his neighbors houses uninvited to get some ice, or borrow some pasta sauce, and does not see a problem with this

Took small trees from a construction site that were there for the landscapers - he said they were "free" to whoever wanted them

Sexual talk and inappropriate behaviors to home helper and takes his shirt off around grandkids to show off his muscles

Thought he had a business in the past that he was going to start back up and drove to McDonalds at 2am to talk to the night manager through the drive through to try to get him as a client (he never had a business)

Took rocks and gravel from another construction site to make a rock garden in his back yard - it's still all sitting in his driveway, after he drove his truck through his once meticulous backyard multiple times and almost destroyed the French drain.

But these things are big things and aren't the day to day - the day to day is not great, but it's not these big things every day. And with it being FTD there are no physical limitations at this time - his ADL's are fine. 

He refuses ALL help - we finally got home help in 2x a week for 4 hours. And I sort his medicines check on them throughout the week. I'm trying to help him with finances all I can, given that he keeps changing passwords and won't let me help, but then he forgets the passwords. 

So - in your experience, does this case sound like someone that should be forcibly admitted to assisted living? The doctors say his case is challenging and that we're at a difficult place - but they don't go as far to say whether we should consider Asst Living or not.

We just want to make the right decision for him - his refusal to even talk about it, anger and aggression make it difficult.

Thoughts? And please be gentle - we're working so hard to help him - I'm doing all I know to do and seeking every resource I can. But I am so defeated and hurt and tired. 

TIA.

CaringMate

TIA...reading your post brought me back to the past decade where I was a 24/7 caregiver to my partner diagnosed with FTD.  I could have written the same posting as the behaviors were so similar, but what I can tell you is that this is the most difficult of all the dementias to deal with and treat.  The neurologist that cared for my partner claimed that he was the most rare of cases, but I have come to understand that FTD is not really treatable in the way that Alzheimer's dementia is and most, if not all doctors, are clueless as to providing help or answers.  Depending on the level of aggression that is displayed will determine whether your LO will be able to be admitted to a care facility.  I can tell you that mine was denied placement due to his outrageous behaviors and daily aggression that could not be controlled by medication.  Trust me on this...unless you have dealt with FTD you cannot imagine the bizarre and impossible behavior.  If you are able to find a neurologist who specializes in FTD dementia, do what you can to get him there.  Most everyone else will be a waste of your time and money not to mention the stress of trying to get the person treated who does not, and never will believe that there is anything wrong with him.  I can only tell you that your Dad will likely not mellow or become more manageable.  The issues will intensify until the end is near.  I am so very sorry and not trying to make this worse for you, but you and your family need to find a way to provide care in home because even if he is accepted in a facility, the first time there is an episode that is common to FTD, they will either drug him to oblivion or require that he be removed.  That will only make the behaviors worse.  He will accuse you of lying to him, trying to kill him and every manner of painful, untrue and hurtful accusations.  You and your family are living the most impossible of situations and there is no way to sugar coat this disease.  Do not argue with his delusions or try to bring logic into the conversation.  Again, that will only intensify the behaviors.  I wish I could be more helpful or tell you that in time things will get better, but they won't.  Keep him comfortable, as happy as you can and work behind the scenes to get his affairs in order.  My prayers are with you.

Elaine

Rescue mom

I am so sorry for your situation. But things can get much much worse unless some changes happen. If he has a car accident, he can be sued for everything he has, regardless of “legal” charges or tickets.  It happens all the time in my retirement area. Lawyers look for accident reports with elder drivers, just looking for a case like this (dementia) where they can file a suit, and drivers with dementia get little sympathy. Not to mention any personal guilt over damages or life lost. You might have to disable the car, “lose” the keys, have it “break down, it’s at the mechanic,” and you take it, whatever. It may be his, but he can’t handle driving. Yes, he will be angry, but he is no longer able to be rational. How angry will he be in a courtroom being charged? Uber, taxis, friends or family can provide transportation.

The spending is also worrisome. This disease usually means very expensive longterm care. He may not realize that, but you will have to deal with it. You may want to talk to an elder care attorney about how you can get some control, sounds like he won’t just start letting you take care of it for him. But if does, at any random moment, grab it. If he lets you set a password, do it—then give him a fake one, if he insists. He can’t appreciate it, but it’s in his best interests. He may have money now, but a couple clicks and it can be gone, plus care is incredible expensive.

If he gets caught stealing or entering a strangers home without permission....well, you know what can happen. Other that constant supervision, I got nothing. Inappropriate behavior with children is a whole different level. You might also want to get some pre-emptive attorney advice about what to do if he, a person with Dx of FTD, does get caught in criminal behavior.

Since you handle his meds, has his doc talked about any that might calm him a little? He doesn’t have to know what it’s for, and sounds like it would be better to help him stay close than have him rambling around town.

If it was me, I’d be looking for a place —ALF or MC—that can deal with his behaviors. There is a vast spread in what some places will take. Some will, some won’t. If you find a place that will take him, *then* deal with how to get him there. Very few ever *want* to go, but they have to for their own safety,mas well as others’ safety. The facilities are very accustomed to unwilling residents—who often come to like it, with socializing and services.

Yes, it’s hard when we have to be the parent. Yes, he will get angry. Yes, you have to learn “fiblets” because the truth causes so much upset and it’s better to say “yes, that car part is being ordered” than to have him fight or hurt somebody because he cannot understand reality. This disease is awful. It can hurt the caregiver as much as the patient.

star26

Does your Dad have a Power of Attorney (POA)?  I think the most important question is not whether he’s appropriate for Assisted Living, it’s about the need to get a POA or emergency guardianship to take control and take the necessary actions to protect your Dad (and the public). He should not be driving, not one more time. He should not be handling his own finances or have free access to his finances. He should not be managing his own medication, living alone or without 24/7 supervision. That’s how these avoidable “big” issues are going to stop. Without someone completely and adequately stepping in now, it’s going to get uglier and IMO the family that is immensely worried but not doing anything will hold some responsibility for the damage. I’m sorry to be harsh. I’m speaking as someone that did not step in soon enough to help her own Dad in all these same areas because “he refuses” and “he yells” etc and there were disastrous consequences. Most of us in this forum have been where you are now and there is a lot of helpful guidance and information here, as well as support. You can get tips here about how to handle each of these things with your Dad. Assisted living is not a substitute for addressing all of these issues directly. It’s a separate issue and challenge. Your Dad’s bad days (the big issues) are what determine the level of care he needs, not the “okay days” even if they’re more frequent. I question whether your Dad is appropriate for AL (I think his needs may surpass what most AL facilities can provide unless he’s medicated or you hire extra help.)

Jo C.

This is a very difficult challenge; I understand the confusion about what to do and how to manage your father; my Loved One (LO) also had behavioral variant of FTD and it was an amazingly difficult situation to manage as things evolved over time; I think your father has well entered that state.

From experience, your father, because of his behaviors, may well not be kept as a resident in an ALF setting, UNLESS it is a locked ALF for dementia patients only.  In a regular ALF, his behaviors would lead to his being asked to leave.  Some memory units will also not accept a severe behavioral problem if there are not meds that can assist.  It will take a bit of time to find an appropriate setting for him.   A 24 hour care aide would be helpful, but while aides are easy to find, they are not easy to keep.  His behaviors would need some modification to get things settled; this would mean medication.

I apologize for the length of this; there is much to share.

FTD is not like Alzheimer's.  In FTD, the person will most often retain much memory until the last stages of the disease; they can conduct business, hold a conversation, and sometimes they can seem as though nothing is wrong, especially in the early mid stages. It is like a rheostat with behaviors up and down, up and down.  The issues are that our LO in such a situation no longer has the ability to utilize logic, judgment and reasoning; the damage to the brain by this state has taken those abilities away.  Therefore, they will move on the instant's wishes or wants and are very impulsive.  They want what they want and they want it yesterday.   This of course creates tremendous issues and it is persistent. They do not realize the consequences of their behaviors and  that is a very big issue in the scope of things.

When reading about FTD, like any other diagnosis, not everyone gets all the symptoms mentioned nor do all follow the same path. .

Your father is in a situation where there may be a risk that he can become dangerous by acting out physically if he is frustrated or thwarted, or  experience danger to himself on multiple fronts.  At this point, he should not be driving.  He will never realize his limitations or lack of judgment or compromised capabilities   - the damage to his brain has taken that reasoning away.  You can confidentially report him to DMV who will probably want him to come in for a written test as well as a driver's test; they may also contact the Neurologist for confirmation.  They do not need to divulge you made the report.   

If he is in an accident, that could compromise so much. People are fast to sue; when that happens medical records are always subpoenaed; they will see dementia and with such compromise there could be a steep financial loss due to settlement.. Most importantly, it is necessary to protect him and others from potential harm.

Our LOs with this type of FTD often experience rigid false beliefs; these are "delusions"  No amount of talking, reasoning, arguing, etc. can change their mind or make a difference.  They are living in an alternate reality and we have to enter their world as they see it.  Never, ever, will he be able to understand he has a problem or recognize any issues.

Your father is entering other people homes to takes things; he acts out sexually - he is unable to control those dynamics and his false beliefs are as real to him as the chair you are sitting on. The risks with all of this are significant. 

Sadly,behaviors become worse over time as reasoning, judgment and logic is further compromised; it is imperative to get legal advice asap and get things in order so as to minimize the risks - I learned this the hard way.

First, it would be a good idea for you to see an Elder Law Attorney to get advice for the present as well as for planning for the future.  You need this specialty as elder law has so many bits and pieces that the average attorney has not got that level of expertise in the deeper levels. If you can access a Certified Elder Law Attorney, all the better. The attorney can also discuss with you what Guardianship entails if that should beome necessary as well as how to structure yourself to protect his finances.  If you do not have Durable Power of Attorney for Healthcare as well as one for Finance, the attorney can also address that.

Also, there are options regarding the behaviors.  First is medication.  I did not initially seek this out as the meds for this are in the category of antipsycbotics; the two most often prescribed are either Risperdal or Seroquel.  My LO was such a dreadful behavioral challenge, and it beccame an issue on a 24 hour continuum, that I finally agreed with the Neurologist to permit Risperdal.  I am SO glad I did.  Fortunately, my LO did not have any negative effects nor was my LO sedated.  The behaviors ramped down very fast and even though it was not perfection, it was tremendously better.   Your Neurologist should be able to discuss this with you, and if not seeming interested, perhaps you would need a second opinion.

Another option is admission to a GeroPsych inpt. unit for assessment and treatment, but he may be too high functioning at this point in time, but you can discuss that with the specialist should it ever become necessary. It did indeed, after a length of time become necessary for my LO.

Your father should never go to his appointments alone; he will not be a good historian for his issues and he will not process whatever the physician tells him.  He will fog all of that. Trying to talk to the doctor about our LO in front of them is not fruitful.  What I did was, prior to any appt. with any MD, I would write a detailed but succinct memo outlining all the changes in behavior, cognition and function as well as any problem  issues.  I would send this to the doctor's office a couple of days prior to the appt. letting the staff know the fax was coming and was time sensitive to the appt.and to please get it to the doctor asap. I followed up to ensure this had been done.  I also carried a copy of the memo with me to the appts.  I checked with staff to see if it had been read, if so; good. If not, I had the copy with me for the doctor to read before seeing my LO so that the doctor had all the information needed to make a relevant exam and treatment plan.  I even had a private appt. with Neuro that I paid for privately so I could discuss issues and major problem issues without my LO present.

Your father of course as you have realized, is a 24/7 set of problem issues.  He really should not be living alone.  You can begin to research the faciliites that specialize in ALF care for dementia persons.  He of course may refuse such a change.  I had to use a therapeutic fib with my LO and tell her it was for rehab. 

Best tool in my care toolbox was that of the "therapeutic fib."  Trying to use logic or being factual got me nowhere except for high resistance.  To my utter astonishment, using fiblets to accomplish things actually worked.  Not comfortable at first, but it was key to getting so much done and so much settled down.

My LO was not wanting to have any legal papers signed, so I decided to present having "estate planning" done.  I clued the attorney in who went along with matters and that worked.  Estate Planning was accepted. I also, on a good day for my LO, discussed in worried tones that if anything happened to her and she was unconcious, no one could manage the banking to pay bills, etc.  So . . . to my surprise, she permitted me to have my name put on the checking and all savings accounts.

Once that was done, because I was an owner on the accounts, I could change things.  I opened a new checking and savings account in my name only with my LO having "right of survivorship."  I moved the bulk of funds to the new accounts, but left about $400 in my LOs checking account so she could access money, and I watched it all online and transferred money in and out of my LOs accounts as necessary such as when Soc. Security or retirement payments were made.  This kept the money safe for future care needs which indeed become an issue and I could pay all the bills.  I also had to take the credit cards when she was not looking.  I kept one for ordering meds and other needs.

I also had bills and mail sent to a different address.  This could be changed to your address or to a POB if your LO creates chaos with such matters.  It is also a good idea to run your fathers name through all three credit agencies to get reports.  By doing this, I found no less than sixteen open credit accounts!

There are two helping entities:

The Alzheimer's Assn. has a 24 Hour Helpline that can be reached at (800) 272-3900.  If you call, ask to be transferred to a Care Consultant. There are no fees for this.  Consultants are highly educated Social Workers who specialize in dementia and family dynamcs. They are wonderful listeners, have much information and can often assist us with our problem solving.

The second contact would be the Association for FrontoTemporal Degeneration:

https://www.theaftd.org/

This is a difficult place to be, but bit by bit this can be managed over time and it does take time, it also takes being very proactive which you have begun by coming here .  Let us know how you are and how things are going; we truly do care. I send my best wishes from one daughter to another,

J.

ladyzetta

You have been given a lot of good advice here. Things you should address asap. Your Dad should not be driving especially now that you know of the problem. As was said you could also be help responsible for his actions. If I was you I would seek out legal council on aging and at least start there so it shows you are aware and taking action.  

As far a AL it sounds to me like MC would be a better place for your Dad, I could be wrong but in AL they are able to go and come as they please. MC is a more protective place for everyone. If your Dad has anger management problems there is another issues that will need to be dealt with. This is where you will need to get a Doctor involved. 

It also sounds like his house is not a safe place for him to be. If it is cluttered he could trip over something and if he is alone that would not be a good thing. 

We are here to help you please remember that.  

MN Chickadee

You've received good advice so far. I wanted to add that my mother's memory care facility does take folks with FTD. The two I have met were younger, one was in his 50s and big and strong but they did accept him. If you do need to place him it will need to be a locked memory care unit with experienced staff. Your local chapter of the Alzheimers Association may have some advice on which places in your area might be suitable. Do what you have to do. Medications to manage behaviors. Guardianship if needed to protect him, yourself, and others from danger and financial ruin. See an elder law attorney asap, they can help work out what to do and how to plan for the future. You will have to do everything behind the scenes and reduce any thing or information that will upset him since he can no longer process logic or reasoning.

CaringMate

Thank you Jo C for your accurate and brilliant response.  FTD is an entirely different "animal" from Alzheimer's and unless you live it, you can't possibly understand the challenges.  I wish I could have been in contact with you when I was living my FTD nightmare.  You are a blessing, indeed!  Thank you for addressing this form of dementia with intelligence and understanding.

Elaine

Suzy23

Hi Tia,

I just wanted to say my heart goes out to you. It’s very hard. 

My dad is 77 and does not yet have a formal diagnosis, but I Suspect he also has bvFTD. His new neurologist said his MRI shows atrophy in the frontal lobes and his behavior is very much as bvFTD is described. He also went out and bought a new car without even mentioning it to my mom. Just a few weeks ago I put my foot down and insisted he could no longer drive and it is a big relief although makes things harder on my mom. 

He has a PET scan coming up and I hope it will lead to presumed diagnosis. 

Good luck with everything and please let us know how things go for you  

I know it is completely overwhelming and seems impossible  at times.  I have made progress on many of the steps listed here that you have received as advice but have not tackled the placement issue at all because he does have my mom at home with him. So my fear is that it will soon wear her out  or he will turn on her.