Just joined and new here

Hi, I am sorry you need this forum, but I think you will find the people here to be warm, welcoming, and incredibly knowledgeable. They have saved my life.

As GG mentioned, we have an FTD group (my husband, 65, has FTDbv). We also have a new caregivers group where we've been collecting resources and conversations that may be helpful.

All dementia is challenging but FTD definitely has some unique issues. Don't hesitate to ask questions, tell us your story, and reach out when you need us.

AFTD also has a helpline and a search for local resources (https://www.theaftd.org/living-with-ftd/aftd-support-groups/). I found a local caregiver support group through the site that has been great. It helps so much to talk with others who are having a similar experience.

Take care of yourself so you can be there for your family- and don't forget that you're important too.

Hi Carolyn, and welcome.

I also had hoped to avoid anti-depressants, but for the three months following my DH’s ALZ diagnosis last summer, all I did was cry. I could barely talk without dissolving into tears. After I began taking anti-depressants, I was far better able to cope. Do I still cry? Yes, of course. But not uncontrollably. The meds are, for me, simply a tool that helps me think and function. I’d encourage you not to write them off entirely but of course you need to do what’s best for you.

Carolyn, adding my welcome. Don't feel like a failure for looking into placement. FTD is especially challenging, and some folks respond better to professional caregivers than they do to family.

Antidepressants are also not a sign of failure. The brain changes in response to chronic stress, and there is an overlap between stress and depression. The newer antidepressants merely help overcome those changes in ways you can't just "will" yourself into.

You've come to a good place and I wish you well.

Hi @Carolyn4255

You said this earlier:

Compared to all of you, who seem so collected and pulled together, I feel weak and spineless. I'm ill-equipped and ill-prepared for this nightmare.

I know exactly how you feel. I felt the same way when I joined this forum, exactly the same. It gets a little better once you've got more experience under your belt, and once you've read more. There are good resources out there, and of course there's everyone here.

I'll be honest .. I've been looking after my sister for the last six years and I still have many moments where I question myself. I still feel like sometimes the ground isn't quite solid under my feet. I've had many a time where I've felt like "okay, I have this", and then some new symptom shows up, and I realize that I only sort of "have this." I think it's just the nature of the beast.

And yeah, I agree with @trottingalong , starting a new discussion on assisted living/memory care is a great idea.

Hi Carolyn,

I thought I’d chime in, too, to welcome you and let you know two things I’ve experienced since my DHs diagnosis. I’m about a year ahead of you in this journey and so much has changed in me this year. Firstly, I could not think or make decisions or begin to process my new reality without the help of a low dose anti-depressant (never thought I’d take one & the change was amazing…still me, better me, clearer mind, thoughts and decisions are fueled by logic not derailed by overwhelming emotions). Secondly, the change in my perspective in one year has been astronomical. It took about a year to really understand my new reality and my new role in life—I don’t have a partner anymore I have a patient, and I’ve decided to make the changes and sacrifices needed to care for him at home. I have decided to accept help from every source I can find (family, friends, community, government) and to live very modestly & minimally. I have given up false hopes and dreams and fantasies. I have also given up anger, regret & resentment.

Everyone’s journey is different. Love and courage are required to survive this challenge. I wish you the very best.

Carolyn, that is beautiful. Horrible and beautiful all at the same time.

I agree completely! I think I must have misunderstood his Doctor who also told me to journal. I assumed I was supposed to share the journal with his Neurologist, so it’s full of observations of my husband, which she did in deed appreciate, but maybe I was supposed to write down my feelings to help me work through them?!?!

You asked

"How do you manage the grief? I live under a cloud of grief that feels like it will never lift. Every minute of every day I'm reminded of all that has been lost."

As my therapists says my head goes one way and my heart goes another

Head part=== I spent my whole career dealing with disasters injury and death. (Safety regulatory professor in an Engineering school) I have no religion. Life is an adventure and a gamble and then ends. All in all DW and I had a wonderful life together. We walked with bears and rhinos, dove around the world, skied a little, and raised two wonderful daughters. We had professional success and private love and affection.

Heart part === my heart screams at the universe every day that this is simply wrong wrong wrong

Sometimes a poem helps

"And did you get what

you wanted from this life, even so?

I did.

And what did you want?

To call myself beloved, to feel myself

beloved on the earth."

“Late Fragment” by Raymond Carver

In the end the love of our loved ones is the reason for living and the most painful part of the end

Believe me I am just as ill equipped and not together at all. The fact that I have two children at home is the only reason I am able to keep it together. I am sitting hear in tears tonight.

Please tell me how you have given up anger and resentment? I could use any tips now.