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.
The fingers of this disease reach so far back that im not certain when symptoms began. I thought it was me he was disinterested in, and even engaged in therapy for two years. I realized the problem was not mine, but was in the throws of raising our teenage children ( he adopted them early in our marriage) and running the home. It because very obvious that there were major problems but I couldn't put my finger on what it was. I wanted to divorce at that time, but didn't; I was focused on giving my children stability. Sitting here 3 or 4 years later, I hate to say, but I wish I had left before the diagnosis.
He lost his job, I had to sell our home, and significantly downsized. At the same time my children left home. I rented a small place on a horse farm, which has given me a outlet and a distraction, and also keeps him safe. It is peaceful. We both have space to move around, which is what I crave because I am resentful, and it is plain depressing to be around someone so apathetic. I just keep moving, and am trying to find peace within myself.
There are zero supports for someone with Young onset Dementia. Alzheimer's associations and day programs are geared for older people and are expensive. Since we have just applied for disability, he is on my commercial insurance, which does not cover any supports, and the day programs are not age appropriate. I know from past experiences with his mother, that pushing those interactions can only further exacerbate his behaviors and agitation. Family has not been any support at all. I have joined several online support groups, but am not finding any comfort in those.
Everyday is a struggle, and everyday I know it is going to get worse. I feel like my mental health is really taking a toll. The isolation is real, I crave interaction, intimacy and companionship, but can not indulge in those feelings. It is just not fair to others and I have no interest in a casual relationship.
I have discussed my feelings to my doctor and have started anti-depressants. I listen to podcasts, exercise, am completing my degree online and do everything that i should be doing, anything to engage my brain, but all i want to do is run away.
This is the cruelest disease, and is a prison sentence with no guaranteed release date.
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.
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.
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.