Just joined and new here
My husband (2nd marriage for both of us...he has two grown daughters, and I have no children) was diagnosed with FTD yesterday. He was originally diagnosed with AZ, but that has been updated. AZ was bad enough, but FTD is terrifying. I wasn't able to find an on-line FTD forum, so I thought this would be a good place since caregivers, regardless of the type of dementia, experience many of the same struggles and emotions.
As is the case for most of we spouses, we saw the signs, had our suspicions, witnessed the decline, asked our spouse to be evaluated...long before an official diagnosis. I've been living with this for at least 5 years, but the first few years the symptoms were vague, and I could rationalize and excuse them away. I just didn't want it to be. Neither did he. So now, he is significantly worse, but still considered in the early stage. I know there is a lot of decline and anguish to come for both of us. I seem to be stuck in this grief limbo and can't get out from under it. I don't want to take anti-depressants, and counseling, while available, is booked out through mid-summer. My question here is: are there resources for the intense and overwhelming sadness and grief?
Comments
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Hi Carolyn. Welcome to the forum, but wish you didn't need it. I'm sorry it is so bad for you, but are there any caregiver support groups near you? They can help, as can this forum. The good thing about this forum is that you can post 24 hours a day, even though you might not always get an answer soon after posting. Local groups are good for information on local things, like doctors, different local programs, etc. But they are typically not available most of the time.
I think it might be a good idea to reconsider medication for depression. If you don't want to take it is because you don't want to be zonked out, they typically start with low dose meds, then work up to whatever is needed. Some people here swear by the meds. I'm sure others will have more to say about this.
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Hi Carolyn. Welcome to the forum and I'm so sorry you have to join it.
There are folks here with spouses with FTD.
I continue to struggle with my own grief and really resisted taking anything to manage it. I'm so dang midwestern sometimes and anti-depressants were an area where that midwesterner stood up and said, "My God women. Suck it up and move on." Lol. I have decided that voice is a bonehead and isn't helpful, but anti-depressant sure have been. Do I still struggle with my grief? Oh yeah. We are all going through a terrible, mean, stinking experience and there's no way around sadness. But, can I manage it a little better with the anti-depressants? Definitely, which means I no longer cry constantly anymore and there are many times when I think I'm going to burst into tears and I don't. I can function much better with their help. Ok. That's my ridiculous spiel on antidepressants. Your mileage may vary.
Some folks have found local support groups that are helpful. I have not. I live in a remote, rural setting so this board, these warm, wonderful folks have become quite a saving grace for me. Please use us! We know what you're going through. We know this grief. Sometimes just being able to post about it will give you the outlet you need to make it through another week.
We are here for you, Carolyn.
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Carolyn, Welcome but sorry you needed to seek out our community. I have been in counseling since the early stages of this journey and have also been active in local in person support groups, both which I highly recommend. When I first sought out a counselor, A number of them said they were booked up for the foreseeable future or were not taking new clients. I keep calling around and was able to find someone with an opening and fortunately it was a good fit. I suggest trying other counselors and see if you can get in. If you join a local support group maybe someone will have a referral to a counselor they have used. I have been able to get a couple of support member appointments with my counselor. Good luck.
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Hi @Carolyn4255 I'm so sorry about your husband's FTD diagnosis. For me it's my sister who was diagnosed with FTD in 2018.
@GG06 created an FTD group on this site, I think it's here. I'm never great with links, but if that link doesn't work, you can go to "groups" at the top of the page, and then get to FTD. That group has been very helpful, and I hope it's helpful for you too.
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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.
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This site below is similar to the one above. A local support group (call Alz Assoc) may be a good resource. Many people are living with FTD but diagnosed incorrectly as having Alz.
Please double check that your husband has been properly diagnosed according to current protocol and then please get a neurologist on your team that is willing to outsource drug handling to a psychiatrist if need be. The drugs for FTD are not identical to those for AD.
Grief counseling...I think you will need to google search. Most groups are dealing with death as the loss. You are grieving a loss...just as difficult
and maybe more so at times.
We are always here for you. We will listen, share and lend a shoulder when needed. Do not hesitate to post whatever when ever.
Helpful Resources for Frontotemporal Degeneration (FTD) | AFTD (theaftd.org)
Judith
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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.
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Thank you so much to all of you who replied to my post. I appreciate your warm welcome and your wisdom and advice. I know I definitely need to find a support group (I believe there is one here in my city, and grief counseling would probably help too. 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 have a long journey ahead, not the least of which is considering assisted living for my husband, as I don't feel comfortable leaving him alone anymore. I'm his sole caregiver. I need help and am looking into options.
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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.
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Welcome, Carolyn, to the little club no one wants to be a member of. Just to add my experience, I've done online counseling for some time, beginning just after DH was diagnosed MCI. It has been sort of a "safety valve" for me, as is this site. These are important things, and you need them. Also, I, too, had that "inner Midwesterner" who told me to "suck it up and deal", like @CindyBum . That inner voice kinda works for normal ups and downs of life, but living with a PWD, as we all know, is not remotely normal. I ended up telling my PCP about the caregiving issues I had and she prescribed a small dose of an antidepressant that has been helpful in letting me get a normal night's sleep most of the time. YMMV
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Hi Carolyn,
Welcome to dementia world. So sorry you have need to be here.
Re: "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 haven't seen anyone here who was initially equipped and prepared for this. Even those who have previously been involved in the care of another loved one with dementia find it a new challenge to care for a spouse. The "collected and put together" you see is hard won doing the day-by-day learning and working to understand and respond to our person with dementia.
All of us came with varying levels tolerance and experience with caregiving. But no matter where a person starts, it is an uphill slog. The most seasoned caregivers come here to vent and rant and share successes.
You are at a great place to learn and get support. You feel more collected and pulled together as you travel this road.
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Hi Carolyn,
I think I could have written your post a couple of years ago. I didn't want to take antidepressants either, but when I told my doctor how I couldn't control my crying and burst out crying while I was talking to him, he said that I needed them. It could be temporary until I can cope better. They have greatly helped. Maybe you could try on-line counseling. Just make sure you find someone who is familiar with the alz journey and grief. Carolyn, it is still true that "information is power" especially with this journey. I would suggest that you read the 36 Hour day, check out Tepa Snow and Tam Cummings on You Tube. Also, please see an Elder Care attorney now, don't wait as it will save you later. Carolyn, you will get stronger and you will surprise yourself when you do things you never thought you could. We will help you. Hang in there.
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I toured a few assisted living/memory care facilities yesterday, and came away with mixed feelings. On the one had I feel that patients can get compassionate care in most of these placed, but on the other hand I'm just not ready for my husband to make that move yet. I would love, love, love to be able to keep him home to the end, but I realize that might be unrealistic. The end-stage might be more than I can cope with. It's just so hard to plan when dementia is so unpredictable and different from one person to the next. Without a crystal ball I have no idea how he will progress with this. I guess time will tell.
I've done a lot of reading, but still have so many unanswered questions. One in particular is how family and caregivers deal with dispassionate doctors...especially when you live in a city where you don't have a lot of options. Maybe I should start a new discussion for this?
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Start a new discussion on this topic. I would be very interested to hear responses. It could get buried being on the end of this thread.
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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.
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@Carolyn4255 as GothicGremlin said, be sure to click on the "Groups" section at the top of the page and join the FTD group. There definitely are some big differences, and this is a place where you'll find some topics specific to FTD
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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.
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Let me give you a special welcome.
Ive been on the Alzheimer's road for 14 years. 14 years ago my lovely physician wife held the top medical position in her field in the federal government. Today she is in an assisted living facility with no real cognitive functioning whatever. she eats the ice cream and yogurt I bring and her pureed meals if you put the spoon in her mouth. No Idea who I or anyone else is for 5 years
I can afford her care but it would be backbreaking for most people. you need help and lots of it.
Wonderful people here. Ive been here 10 years and Im still learning. DW is only 72
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Hi Crushed...To live with this cruel disease for 14 years is unimaginable. But I know that could be my husband's fate as well. 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. I dread and fear what's ahead as well (my doctor calls this anticipatory grief).
CStrope...thank you for the tip. I did indeed join the FTD group as well.
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I wanted to mention that my doctor advised me to start a journal. She also suggested that if I felt comfortable with it, to share some or all of my journal entries with whomever I felt comfortable as it helps others (namely family members) to get a sense of where I am and how I'm doing. I thought I would share my most recent journal entry with you. Maybe most of you related at one time or another. But this is where I am right now.
March 4, 2024: Caregiving
Caregiving sounds like a nice word. “Care” + “Giving”. What is nicer than that?
But caregiving isn’t nice. Caregiving sucks. Especially caregiving for a spouse with dementia.
Regardless of the care and the giving, you are watching your spouse devolve into a child, losing his independence and vitality. Amidst your grief and wildly changing emotions, you have to step up and provide competent, compassionate care. It’s like bleeding out and having to teach a class at the same time.
At the beginning of the crisis, family and friends offer support and help. But as the weeks and months pass, they go on with their lives. But I blame myself for this. Help was offered, and I didn’t assert myself in asking for it. Too afraid of burdening people. But he isn’t a burden. He’s a father, grandfather, brother, and husband. And he’s been damned good at all of these things…until, through no fault of his own, the part of his brain responsible for his wonderfulness decided to disappear.
Now he needs me. He needs us. And he needs us to not think of him as a burden.
Nonetheless, caregiving does indeed suck. It sucks because nothing is normal anymore. Absolutely everything changes, and not for the better. Every aspect of life is affected, and when I want to shrink away and say “No. I can’t cope”, I have no choice but to say, “Yes. I will cope.” My conscience and my love for him will have it no other way.
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Carolyn, that is beautiful. Horrible and beautiful all at the same time.
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Very nicely said! Thanks. Please post more pages, if you like.
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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?!?!
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Hi Carolyn,
I'm new here too. Most here have more experience and wisdom than I do, my husband is a FTD sufferer and is only 67- 5 years into this. I am a worrier and anxiety queen but two things I would offer that might help to ward off depression.
1. Don't get ahead of your ski's. By that I mean, don't spend time looking at the future. There is nothing there for you- get through your day, hour, minute and start over every morning.
2. Your present is not your future. I don't know how long this thing is going to go on or what is going to happen but I don't feel I need to know anymore. I will manage what happens, when it happens. It's working for me sometimes it's my mantra...
People seem lovely here and we both have joined a group that are walking our same paths.
diane4 -
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
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I am so sorry that you are going through this. I am new to this as well and it is completely overwhelming. Please look into getting a therapist for you as it is another layer of added support. Is virtual therapy something that you are able to get into sooner. I wish there were support groups. Where I live there is nothing within an hour and a half. And online groups that I have found are usually during the day. Also, consider medication. There are so many different options out there. They take the edge off but dont worry you still feel all the emotions. Please feel free to message me privately if you want to chat one on one.
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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.
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Please tell me how you have given up anger and resentment? I could use any tips now.
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You nailed it. Thank you for sharing.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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