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Husband recently had 10 days in respite. He suffers from FTD with Parkinson like characteristics and anxiety. He is classified as Younger Onset Dementia because he is only 63. When he came home I realised just how bad he is getting. Stumbling, poor vision, couple falls (two serious) wanders and now cannot chew his food and has trouble swallowing. I called care facility to make an appointment to speak with director about future permanent placement. He asked me if anyone had talked to me about how FTD can sometimes turn out for sufferers. I said no and he began to explain how as the brain continues to shrink people can become very difficult to manage and even violent and should this happen they would have to move him into a specialist ward of which there are only two anywhere near us.


Having read posts on this site I know that if DH is already in permanent care it is the facilities responsibility to place him in new facility. I am now concerned that if I don’t already have DH “in the system “ and things go bad I will have next to no chance of finding a good placement for him because he is under 65 and he would most likely end up in some terrible public psychiatric ward.


I am tired of hearing family members say to me how awful and sad it is for DH to have worked so hard for the last 41 years and saved and planned hard for retirement and now he will never get to enjoy it. All true. However there was another person every step of the way whose retirement and savings has gone down the drain as well. Me. The last five years of my life has been hell, But nobody seems to see that. My BIL rang two days ago and said you are his wife you should be looking after him. No one else. Mil wants me to try harder to get better doctors and try new methods. Why haven’t I tried pot? Son says today why did Dad sound good a couple of days ago but terrible today? All of them live in other states and have not actually visited. MIL says she can’t even look at him as it will be too upsetting for her even though she knows how much it means to him to see her even if only by video link. Thankfully he has stopped asking about her. Not once has anyone asked how am I coping. Not one of them trust me and think I am scheming to be rid of him. Try harder. Do more. My brother came from England for a week to see DH and helped me with getting him into respite. Completely understands. Understands my feelings and worries how I will cope.


I wonder what the attitude would be like if it was the other way around?

You need some strength to hang up on these people. You are being bullied. They dont even realize the financial sacrifice you are making to institutionalize him. You are not even able to share in his retirement savings.
You might just call their bluff that if the are so interested in helping him stay home then they should petition the courts for guardianship. Then they could take him home with them.
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Reply to MACinCT
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cherokeegrrl54 Jun 20, 2019
Awesome answer MAC!!!! People who have no concept of what it takes to care for our LO or who never come to visit...they wouldn’t like my answer! Im all with the “ put up or shut up” !! Family members can be so insensitive!!!
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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.
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(((((((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?
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PandabearAUS Jun 18, 2019
Yes. I have to change my will and appoint my eldest son as POA should I die first so he can run super and make decisions concerning his father All happening
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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.
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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.
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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.
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vancoppernoll1 Jun 20, 2019
I have done all the research I can do. It has helped me. But I don’t expect the relatives to do that. I have disconnected them from my life. It’s there circus and there monkeys. I now have just my aunt to deal with. I am staying in touch with Senior Health Care and others to help me cope. She is not willing to go to her doctor, or even take her meds. She stinks horribly because she won’t take a bath and has not done so for about six months . Her nurse asked me if she ever bathed since her feet stink. We can’t get her help with anything since she won’t go to see her doc. The Doc would have her analyzed to see what’s going on and get her help, but I am not getting anywhere with that.
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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!
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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.
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AlvaDeer Jun 20, 2019
What a great answer!
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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.
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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.
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