DH has FTD. Just found out how this can progress. Family isn't listening, can’t seem to understand that he is not the only one on this path.

(((((((Hugs)))))))).

Mmost of us caregivers have found that there are always "helpful" folks who want to give advice without having a clue what you're dealing with. Alone

It's the reason in person caregiver groups can be a powerful help. Of course you need to find someone to sit with him!

I think I'd smile gently at the folks who think you should be trying harder and say "anytime you'd care to come over and stay for a day so I can do some research, I'd be happy to oblige you".

I'd also pound some pillows. Keep posting here; you are so wise to get your ducks in a row by talking to the facility director and other experts about what to expect.

Have you consulted an eldercare attorney yet?

Find the website for the Association for FrontoTemporal Dimentia as it very good and specific to the many aspects of this disease. Knowledgeable support group.

Dear Heaven, how draining for you.
YOU have fortified yourself with useful knowledge about FTD.
As you know only too well, you will never be able to educate whether unwilling or unable family members to learn what they need to understand your husbands circumstances, much less understand yours.

You have confronted your husband’s painful loss and are moving forward to ensure that he will be compassionately cared for as his condition deteriorates.

You have taken this on without the benefit of the support and consolation of other members of his family, who undoubtedly love their relative, but have failed to familiarize themselves with his situation.

Would it be easier on you to adopt a “thanks for your suggestion, I’ll file it for future reference” stance, and ignore them?
If you’re not comfortable with that, can you daydream your own bland, noncommittal response for the inevitable useless offer of their “help”?

You are doing all the right things concerning your husband’s care. Don’t hesitate, right now, today, start listing things you can do that will help you start to make your life better. It’s OK to put TURN OFF THE PHONE at the top of that list.

People who don't have to deal with the care of a LO are completely ignorant of what it is like, in the trenches, 24/7. They just can't help themselves to try to give unsolicited advice that is not at all helpful.

So, I suggest you find a way to nod and smile and let it all roll down your back. Don't take any of it in. They just don't understand and probably don't really want to know the knitty gritty details.

It's certainly frustrating, but all so common.

You don't owe them any kind of explanations. What you really need to do is try (big word there!) to take care of yourself as well. How? I know, not so easy. But you deserve to have a life too, while ensuring that DH is well taken care of.

Take a deep breath.

You may also need to have the elder law attorney begin preparations for you to apply for Medicaid for your husband in the future, so as to reduce the drain on your own finances.

First, don’t be guilted by these people offering non supportive advice. It’s you who has the knowledge of the disease and who is in the trenches. Is it sad he is afflicted right after retiring? Sure..but then lots of people get cancer (my mom for one) and die, or get in an accident, have a coronary etc. after retiring. Life isn’t fair as we all know. I’m sorry this happened to you both but you are right in placing him for his care and your sanity.
For the family idiots who offer unsolicited advice for something they know nothing of, mail or email them info on FTD and let them read up on it. You don’t need their approval to do what needs doing. And when they offer said advice tell them "thanks, I’ll be sure and put that in the circular file (meaning trash can)”!
People and family in particular really can astound us when going through this. Find a support group or good therapist who will listen and be there for you as they sure aren’t supportive. People who have been through it are the ones who understand. Hugs and good luck. Post anytime!

I wish I had an answer for you. I moved home to help take care of my mother with Dementia (not so clearly specified back then). My family was not too supportive, because my Father had I had never gotten along but no-one else was in a position to do so, either financially or practically. They lived 700 and 2000 miles away respectively. I was there for 14 months, took on increasing care needs, but was increasingly shut out by my Father. I would call my siblings to report or ask for a suggestion. Pretty soon, they stopped calling back. The situation with my dad went from bad to worse. Eventually, I had to call it a day, and walk away from it all as my Dad would no longer let me in the house. Siblings no help. Long story short, Mom died a year later. I did not go back for the funeral-was specifically told I was not welcome. But 10 months later got a subpoena for elder abuse from my sister. We went to court over my Father and her allegations. They lost the fight. My Father never spoke to me again, and has since passed away. My sister and brother have still not spoken to me. That was in 2012. I feel I got the last laugh though. My sister is a sitting Judge in California. Not only did she lose to me, I am the only court case she has lost in her entire legal career of being a Prosecuting attorney! But it really is not worth not having a sister. Ah well....I have no idea where either of them have been buried. Families can either be a bane or a boon, no doubt about it.

The next time one of them offers advice, suggest that he or she come visit and take over for a few days to show you how to do it properly. That should either shut them up, or get you some rest, followed by a decent amount of respect and apologies.

I know how you feel. Like you are alone in this. Relatives don’t won’t much to do with you and stay clear of helping you out let alone understanding what you are going through. They may even blame you. My sister flew in from NewZealand to see her daughter for a couple of weeks-I only seen her for a short time and she never talked to me more did my niece. They never came over except to take my aunt to lunch. Aunt being the problem. They accuse me of not doing my job. NASTY. Well, I never signed up for this or wonted it. I am 73 but they think I am 50. My aunt lives illegally in the back yard with no running water, no electric, and no toy let. She lives in a tiny 15 by10 trailer and sleeps on the floor. Owns a pit bull. She hates people, kids, and houses. She won’t except help of any kind and I have done everything I can to do that. Say’s she’s independent. Why would you go and buy water in a jog when there is water right outside her door? She won’t see her doctor with me to be evaluated so I am stuck.

OMG, my heart goes out to you. First of all, you mention that they have NO idea, and that is true, the beginning and end of it. They have ZERO idea what you are going through. Don't try to convince them, because they never understand. They have enough of an idea to know when to run, and when to hide, and that's about it. Don't fight with them. Speak with them as little as possible on this subject and seek out support groups. Often there are senior centers that have caregiver groups.
My concern for you at present is just YOU. I think your husband needs placement, or soon will. I think you should consider things such as when/if he is unable to swallow and etc. will you wish to have such things as feeding tubes and etc to prolong what just may be misery, and not "life" as we know it. You will need the support of a Licensed Social Worker or psychologist FAMILIAR with all this to support you, as great guilt is visited upon those with good heart. It is just another sad factor in all this. So first of all, know what it may look like going forward, and what you will do about it. Second decide on placement when it is time to do so. These are the first steps and the most practical. I don't see you being able to do the caregiving alone over time. Thirdly the concern is financial. And this sounds crass perhaps, but you must now consider your own life. You will be left to live without a companion, with your own aging needs, or at the least to live without a life companion who honestly knows who you are, or who even resembles the love you chose. And you are young. You could have easily more than 20 years of life left. I feel it is crucial for you now to protect your finances, and that means a visit to an elder care attorney. You just cannot lose all the financial savings both YOU and your husband depend upon on these remaining years left for him, which may be many. See an attorney with an honest list. There are times when people honestly have to separate their financial life (I have known some to quietly divorce) when this happens. A friend visiting Tahoe as a young Dad with his wife had her fall from a cliff into water on a morning walk; she didn't return back for breakfast. She was found damaged in the brain but her body went on for 35 more years in need of complete care. He was left with two young sons (now grown). There ended up being no other recourse,but a separation of finances. I hate to leave it like this, because all of this sounds so without hope, but you already know where you are right now, and unless someone is in a similar boat to your own they will never understand; don't expect them to, and don't try to make them understand. You will, just when you are about to break, get well-meaning "advice" from someone that makes you want to pull your hair out of your head. Enlist the help of anyone you can to get respite while you seek permanent care if that is what is now needed to save your sanity. So sorry you are going through this. There is no way to make this be without serious pain, but do see someone to help you sort out the reality versus how everyone wishes it could be. Wish I could give you a hug, or at least an hour of respite, and PLEASE do not waste energy on trying to convince the family of anything. You never will. It will never be pretty. Do the best you can for yourself and for your husband.

I can tell you exactly what the attitude would be: he'd have left, and they'd all have shaken their heads and said wasn't it sad but what else could he do.

I know this because I have to restrain myself from telling my close friend that her brother, who has done precisely that, is not a poor put-upon man but a complete rhymes with punt. She told me this morning about his nice new girlfriend and their bijou flat on the river and his travels on the European motor sport circuit. Not a word about how the wife that *she* used to like so much is doing.

But I know when I'm wasting my breath.

Remember that you are giving your husband your very very best not because of his family, but in spite of them.

FTD is a brute. I should get ahead of the curve if I were you - better for him to be in expert hands with you still there, than removed in an emergency because he's injured you.

Joanne, some POAs have a contingency written in that specifically says that the POA can appoint a POA for certain reasons, one being that the POA can no longer fulfill the duties required. An attorney can write anything into a POA, it just can't violate the law.

I'd give MIL, BIL and your son the name and address of your husband's physician and tell them if they feel you are not handling the situation well enough, they should talk to his doctor to see what THEY can do to help. I'd also remind them that you are using your and your husband's joint finances to make sure he has proper care and, at his young age, he may need care for quite a while. Are they willing to step up and provide the finances for that or for you to live on while he is in care and after he is gone? Offering to give these people the responsibility they seem to feel you aren't handling well is a sure way to guarantee you won't hear from them anymore.

Just tell DH family to get up off their assets and come see him for themselves since they seem to know everything about his condition. Then keep moving forward on your own. Hugs.

It seems to me that everyone wants to be an armchair critic when it comes to how we're caring for our loved ones. They don't want to come help us, oh no, they just want to point out, tsk tsk, what we're doing 'wrong', what we can be doing 'better', or how things 'should' be done. From a distance, of course, with no real interaction, monetary or time investment, or genuine interest of any kind. It's the easy way out. I've been having a similar situation with my cousin who doesn't believe that my mother is suffering from dementia..........she's 'spot on' with everything she says, don'tcha know? Meanwhile, my cousin lives in NY and I live in Colorado and have been dealing with 6 moves for both of my parents since they arrived here in 2011. Alone. With no help of any kind from anyone. But hey, my cousin is the expert!

I also think that nobody wants to face the reality of what disease/illness and especially dementia related illnesses looks like! It's scary to see up close and personal. I had to place my mother in memory care, and I see that none of her old friends from Assisted Living want to come see her........they're afraid of what they'll find. She's fine.........the same woman they've known and loved, but they're scared of what she's 'become' because of her dementia. Will that happen to THEM too?

I'm so sorry for what you are going through.......I had to Google FTD to read about the illness, and it sounds just awful. I am sending prayers that you can make the difficult decisions you're now faced with, and that you can take care of YOU in the process, my friend. I know how easy it is to LOSE who WE are during the caregiving, and start questioning ourselves at every turn. Nobody seems to care about US, just the one who's 'suffering', never taking into account OUR pain and suffering! It's ludicrous, really, but unfortunately, not likely to change any time soon. Use the block feature on your phone when necessary, get your doctor to prescribe some Xanax for you as needed, and make sure to find SOME downtime for yourself, okay?
All the best.

Unsolicited advice or being told how to handle your LO "better" is so frustrating - especially from those who are on the sidelines.

My answer to those comments were either "Your advice will be given the same amount of attention that you give to LO."

Or, "She who sweeps the floor, picks the broom."

Both work well in letting rude people know where they (and I) stood.

Echoing everyone else, you have my support to do what you need to take care of your husband and yourself in the best way that you can.

If you are in charge then do your due diligence and make the best decision possible. Be strong and courageous. Get yourself together spiritually emotionally physically mentally financially so you will have some good years left before you die. And it doesn’t sound like you have any good choices for your POA. Go with a friend.

Do you know that scene in the movie NETWORK, where the newscaster Howard Beale tells his viewer to hang out their window and yell, "I'm mad as hell and I can't take it anymore!" That's how I would feel if I were you and my family was all butting in with their various good ideas about what I should do.

Tell them to cut it out. Tell them what you need. Be direct, clear, and firm. If you want them to ask you how you are coping, then tell them. Stop being so nice to people who are unhelpful at best.

Except for the brother who gets it. Keep him around.

And so...how are you coping?

"I wonder what the attitude would be like if it was the other way around?" Oh, poor Johnny, he has to do/spend soooo much on HER... From the sounds of it, they would likely tell him to cut and run! My brothers don't even understand how much I have to do even though mom is in MC (I handle/manage everything else!)

However hard it might be, you will have to learn to tune them out. You can only change yourself/your reaction to situations, you won't be able to change them. IF at all possible, get your hands on pamphlets about FTD (I have seen several in mom's MC place with this - so sad to see once vibrant people reduced to this!) This is for you (even though you've been given the initial "tour) BUT get extra copies for the family members and hand them out/mail them. If you are told you need to try harder or do more, tell them to come stay with you/him and show you how it is done. They really do need to experience it first hand - pictures may paint a thousand words, but seeing is believing!!!

People who haven't been exposed to this (and other forms of dementia) are CLUELESS. There are some on here who chide us for putting LOs in a place, especially when it is a mother - oh, she cared for you, yadda yadda... It is NOT the same!!! I suspect those who sing this tune care for a parent with age issues, but NOT a form of dementia. Your brother has now experienced it some, so he understands. The others? Not so much.

Once I realized mom was exhibiting memory issues, I started looking up information on dementia. Brothers did not. Younger brother was even insistent on making her move to AL not MC (she won't want to be in with a bunch of old farts - huh? Clearly NO form of dementia cares what age you are. There are several in mom's place who are younger than me!!! BTW, mom is almost 96, going on 3.) Older brother isn't much better. Uninformed = ignorant.  

So, provide them with the information (obviously you can't make them read it, accept it or understand it.) If they choose to keep their head in the sand, tune them out, don't take their calls, yes them to death, but do what is RIGHT for YOU and YOUR HUSBAND. Take time for yourself. Find time for outlets. Visit here often, to vent or share! Take care of yourself so you can care (remotely) for DH.

Excellent phrase to remember given to you in a post below: He who sweeps the floor gets to pick the broom.

When they call to relay all of their wisdom, be prepared with what to say --
To BIL: I may be the wife, but you are the brother - connected to him by blood and known him longer than I have. As a brother, I would like to know if you (and siblings) can help me because I can no longer do this 24/7 alone. The doctor has told me it will only get worse. When can you (and siblings) come to help and would you figure out a schedule for when you can help. If you would call me back by the end of the week with a plan, I would appreciate it. (Give a deadline!!) Gotta go, I need to help your brother.

To son: This is your father. He needs your help and so do I. Perhaps if you spent a week or two helping US you would see how deteriorating this disease is. Maybe spending time with him will help you understand the situation and possibly offer me some suggestions on more efficient ways to do thing. Of course, it is going to get worse so I need commitment on a calendar of when you can come. You may want to talk with your uncle and grandmother to coordinate a plan. I need to know what the plan is by the end of the week. I am begging you for help. Gotta go, caretakers don't get phone breaks.

To MIL: This is your son and there are still days that he remembers you and wants to see you so badly. If you would like to talk to doctors in your area about other treatment options, I would welcome anything that might help. For now, I have to follow the advice of the doctors we are using. I could certainly use your help at this time in YOUR son's life and he really does want to see you. I understand it is difficult to see him like this - I wish this was not something I had to watch either, but it is OUR reality. I do need help desperately - gotta go, your son needs my help right now.

By the end of the week (and you don't get a plan from any of them), just repeat these words ANY TIME the conversation goes to what you need to do, repeat these words: He who sweeps the floor get to select the broom. I have to go now because I do not get phone breaks. And hang up. Do not engage with any of them about what you need to do. They have as much responsibility as you do.

Why haven’t I tried pot?
My wife suddenly became a mean 5 year old in 2006.
In 2013, she lost all social awareness, forgot herself, forgot the family, forgot me, became aggressive. She would wander aimlessly, whimpering, whining, growling, barking.
She is now an autistic 2 year old diagnosed with late stage bvFTD and other variants.
She is hyperactive, but her brain does not direct. She forgot early learned motor skills, will bump into walls and fall over objects. She lost language skills and does not comprehend.She wanders without purpose and is enraged by restraint. Sitting has to be her idea. She can not grasp objects with purpose. We hand feed her continuously all day and hydrate her with a turkey baster. A person has to be within reach of her every moment 24/7. She sleeps intermittently at night and I have to be able to awaken at her movements.
She has seizures that make her think she is being attacked. There is no medication for FTD, no medication for seizures except cannabis.
We have discovered that the cannabis makes her an absolute sweetheart for several hours, and she becomes aware, often a hoot.
It took a couple years to dial in the type and dose and delivery method, but we have it, now.

We now absolutely adore this once hellish person and enjoy caring for her.
We thank God for the plant.

State the facts in writing of how FTD progresses (not good). They can read for themselves.

Thanks to all of you. I appreciate your support

I understand fully your situation. I am in the same one. Family try’s hard to keep me there so they do not have to get involved. All of a sudden I am a lier, thief, gold digger. Blame is there tool. And they really over use it. Another tool they use when they can is not seeing you when they are in the area or inviting you to a family get together. They use hurt as a thumb to hold you down and responsible. Don’t let them get to you. They understand more then you think. Stay stronger and take care of your self. Nothing stays the same and it’s there circus, there monkeys. Meanwhile find a support group and also get in contact with any organization (like Senior Mental Health) to help you out. That way you are doing the best you can and the proof is in the pudding.

Panda, has the family come to understand even a bit more now that DH is in care and difficult there?

Oh how I am familiar with FTD. My Luz had that but she also had Aphasia with it. She progressed rapidly with both. About a year before she passed she quit talking except for the occasional HI to a person. Mostly it was just two sounds and facial expressions.One sound indicated something did not go right. The other was a call for help.
My only time of respite was the hugs we shared each day. Boy were those hug great.
We had only her sister in the Philippines and my brother and both of them supported me to the end. I guess I ws very lucky in that sense.
She only had two visitors during the entire ordeal and they spoke mostly to me.
I checked her underwear every hour or so and cleaned her when necessary.
I had to watch her facial expressions to try to read what may be wrong or what she wanted since she could not talk to tell me.
Near the end I was wearing my self out lifting her so I could clean or feed her.
She started to have difficulty swallowing so I fed her softer foods in smaller bites. I left small snacks out for her to eat whenever she wanted. I had glasses of water positioned at the places she would sit or stand to rest. I crushed her pills to a fine powder and mixed them with puddings.
When she could still walk I would bathe her and shampoo and blow dry her hair.
I communicated with all of her Dr.'s as to her regression.
There were no meds she could take for this demon.
We tried some but she had bad reactions to them.
I had no one here to help or to talk to. Still don't. Her friends never called and only two ever visited. One lives in AZ. The other is local. The local would bring something for Luz to eat when she visited, which was not often but much appreciated.
Luz slept or watched her favorite programs on TV. She liked the children's shows. And would sometimes smile during them.
She never got violent but she would get stubborn if she wanted to do something that was not right if I tried to stop her.
Her favorite activity was soaking in the step-in tub or washing the walls around the tub while bathing.
Near the end I had to sponge wash her in the TV area and dress her.
Much of my days was spent listening for any of her sounds and spring into action if I heard anything out of the normal sounds.

I can only begin to understand what the rest of you were or are going thru. You have my deepest support and whatever else I can provide you with on here.

I would also suggest that you get a camera, unless you already have one, and document the memories to build your own scrap book.
As for the relatives not helping but providing faulty advise, If they refuse to help or to believe then just tell to "Kiss my stacking swivel"
I hope some of my good fortune and memories rub off onto you.
God bless all of you.