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Hi All,I'm 69 and my husband (75yo) has FTD behavioral variant, as well as a secondary unspecified dementia on top of it.I originally drafted up a whole long history to share here but then I decided to delete it. Bottom line, I'm looking to connect with other spouses/partners who are caregivers for their spouse with dementia.The early symptoms in FTD were cruel. They destroyed who my husband once was. It appeared under the guise of depression or a mid life crisis. The serious disconnect and lack of empathy did much destruction. He used to smile a lot, now he has a flat affect and quietly stares at me.Dementia seriously affects the caregiving spouse. Its a grief that can not be fully expressed or resolved. The loneliness is excruciating. He's here, but he's not. I had a husband, but he went somewhere. Now I live with this strange person. The early symptoms of FTD destroyed our marriage, our connection and it has made caregiving for him full time, very difficult. I'd like to hear your story.

Contact your local alz.org. Go on the web to find local support groups. There is a 24/7 , 800 phone number for specifics. Your association might offer an online group if you cannot leave the house.
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Reply to MACinCT
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You do have the option of placing him. You see an Elder Lawyer who can have your assets split. His split will go to his care. When his money is almost gone, you apply for Medicaid for him. At that point you remain in the home, have a car and get partial or all the month income to live on. You get to be a wife, not a caregiver.

FTD can make a person aggressive and violent. When this happens and you feel threatened, call 911 and have him taken for a 72 hr eval. This may be the time you place him.
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Reply to JoAnn29
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All of the dementias, not just FTD affect ones marriage, where one becomes more of a caregiver than a spouse, but when you truly love your spouse you stick it out until the end as that is what a real marriage is about.

Hang in there StandSteadfast as this too shall pass and you will have a whole new life to live when it's all said and done. And remember that what doesn't kill you makes you stronger.
I wish you well as you travel this very difficult road with your husband.
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Reply to funkygrandma59
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I am so sorry to hear your story.

After several years of appalling behavior (previous to that he was a model husband and citizen), my father was diagnosed in Jan 2021 with bvFTD as his primary diagnosis with PET scan evidence two other forms of dementia (Alz and vascular). He passed away in May 2024 at age 80. My mom would entirely agree with you that it nearly destroyed their 55+ year marriage. It also had her on the brink of a nervous breakdown for several years straight. He had the flat affect, the lack of empathy, and plenty of dangerous and really maddening obsessions and compulsions. The only thing that helped him with those was Seroquel and Trazodone, but it took some experimenting which was also frustrating in the early days.

This site is very supportive in general, but for your situation I urge you to also check out ftdsupportforum.com. Almost all members are caretakers of spouses with FTD. I posted there a lot under the same screen name during the years we were going through that hell. Best wishes to you.
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Reply to Suzy23
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