Dealing with the rollercoaster of emotions... FTD/Pick's DH56
Oh guys. These rollercoaster of emotions. We are newly diagnosed, but it's like crossing the finish line of part 1 of this psychological thriller. I feel like I've been living in hell for over 10 years as DH's personality and emotions changed before my eyes and I was the only one who could see. When I shared with a confidant, I would get things like, "Maybe he's narcissist!" "Do you think you might be co-dependent?" And while I could definitely see some of the traits it just never fit. I couldn't accept that it was true. These seemed more like symptoms of a bigger problem. I spent so much time and money on self-improvement books and programs trying to "fix" everything. Three years ago, I finally had to come to terms that our marriage had reached a crossroads. I had to either accept this man had changed to a point where it was no longer acceptable or tolerable or I had to leave. Both options left me feeling devastated, heartbroken, terrified and angry. And so I did nothing. Finally, that moment came when I just KNEW something was really wrong with him. We started getting some answers in January of 2023 (an MRI that showed significant what matter and he was diagnosed with severe sleep apnea), but it wasn't until April of 2024 that we finally got in to see a qualified neurologist. The first one was useless and joked that maybe it was a mid-life crisis. I guess what I'm feeling is that I am entering this next phase completely worn down and depleted and it scares me. This man I loved so, so very much has slowly been replaced by a man I can barely stand to be around and it's so damn hard. I know it's not him. I want to mourn the man I married and grieve, but there is NO TIME. My days have been filled with trying to take care of all the pressing issues: healthcare appointments and insurance BS, financial issues, obtaining legal help, keeping DH off the road and occupied, drowning in housework, cooking constantly (because aside from driving, all he cares about is eating), and supporting my children and communicating with his family. Gosh this sucks and I'm starting to feel downright angry and resentful. I am 51 years old and after feeling all the compassion and empathy that I am capable of for DH, my children and his family (and it's A LOT), that small voice that still cares about myself is sooo pissed off and furious! And I feel so guilty for feeling this way, but it's there. Of course, the first and foremost thing is that I am going to lose my husband, but honestly, I've already been bearing witness to that for well over ten years and I've expressed how I feel currently feel about him and that is so confusing. I try so hard not to feel angry with him for not seeing ANY signs earlier on. Not that it would have changed anything but I wouldn't arrive where we are today feeling the way I do about him (I don't think). For years I felt feelings l never thought I would feel about him. There were moments when I felt like I hated him for hurting me so badly. For ruining our lives. For being a terrible father. For ruining our finances. So many years of these moments. And now here we are and I am expected to give up the rest of my life to care for him and come out on the other side with what feels like nothing. I feel SO AWFUL for feeling this way. I want so badly to see him and love him as the man I married and to give us the best life possible for as long as possible, but that tiny little voice is getting really loud lately and I just want her to STFU!!! Sorry, I'm not a big swearer, but gosh it's all I can do to stop these days. Thank you for giving me a space to vent my feelings and I'm sorry this is so long. I could go on forever there is so much hurt inside.
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that was a very interesting read , I’m not at your point but I truly , even though like I said no where at your point , I can understand how you feel and I myself can see it coming my way, could be year from now could be tomorrow who knows with this nitemare. You’re in a great group they’ve helped me a lot.your very young and it breaks my heart to hear this. I never thought there could be a bright side to this nitemare but I guess getting this in your 70,s seems better then your situation. I pray for you. Keep I touch
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Awe, thank you, Charley. I can't imagine it's any easier in your 70's - just different, right? Our experience with FTD is that he flew under the radar for many years and it presented as personality and emotional change for many years before it reared its ugly face in a way that couldn't be denied. My children (now young adults) grew up with the changing personality and emotions so it's really all they've ever known and I spent most of those years covering for him, putting out the fires and picking up his slack. It wasn't until they began to notice a change in the way he communicated (he sounds different, struggles with communicating his thoughts, explaining things, understanding what we are saying, perspective, etc.) that they started to pick up on the fact that something wasn't right. He's generally a quiet man so that also flew under the radar as he became increasingly quiet. And then, after years of employment as a high level executive his position was eliminated. He was likely flying under the radar there as everything was familiar to him and he had a lot of freedom. After he lost that job, the work struggles began and he went through 7 jobs. This went on for four grueling years. The only people who could see something was not right was me, my kids and people in the places he worked. He was losing his "executive functioning". Other than that, he just presented as a normal person who seemed to be having trouble finding the right fit in the professional world after a devastating job loss (the one he was at forever) .
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oh Sweetie! I’m right there with you.DH just diagnosed two weeks ago and I am going through much of the same feelings you are experiencing. I’m feeling so stressed out all the time with my own emotions. Blessings to you on our new journey.
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((( big hugs ))) Thank you so much for your reply. I'm so grateful to have found this community. It's been about two weeks for us too. I'm losing track of the days.
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@MelissaNH
I think we exchanged posts before. That is a lot.
bvFTD is an especially challenging condition with which to come to grips IME. The early deficits are subtle and could easily be mistaken for a mental health issue. FWIW, the one person I met socially with this condition also lost his executive function and ability to make reasonable decisions— he became expansively generous which his wife interpreted as "irresponsible". HIs baseline was brilliant (a PhD), outgoing and charismatic. Theirs was a second marriage and she feared his expansive spending would bankrupt her, so she divorced him. Living on his own, he eventually lost his job. There was a 6-month period where no one knew where he was until he turned up on the steps of his former employer's headquarters where he was recognized begging for money and taken to the ER where he was admitted and finally diagnosed about 8 years after his wife left him.
I am sorry for the spot in which you find yourself which is so vastly different than what you'd planned on so many levels. It truly is the stuff of nightmares. I don't expect that anyone could process and accept where you are at this moment easily. Is therapy an option for you?
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Hello and welcome, Melissa. Reading your post was like reading part of my own story. My husband was diagnosed FTDbv in January 2023. Hindsight is 20/20 and I now realize the early symptoms (behavior changes, apathy, basically being an a**) had been going on for close to a decade. Things got really bad. Cops and hospital stays bad. I know your husband's diagnosis is recent, but you've been living it for a long time and you have to be exhausted. There are quite a few of us in this forum dealing with FTD. All dementia sucks (I'm not diminishing everyone's battle), but FTD is unique in how brutal, especially when you consider the age of the PWD.
I want to try and offer you some help. First, here are links to two groups on this site that may be useful. The first is a group specifically for FTD caregivers. We've talked about our journeys and shared some specific FTD info. The second is for new caregivers in general where we've been collecting posts, links, resources, that are especially helpful as you start to navigate caregiving for a PWD. I also want to offer for you to reach out to me directly (to send me a direct message, just click on my name and hit the message button). A turning point for me was getting to speak with other FTD caregivers. Let me know if I can help.
Take care of yourself. Take care of your family. It took a lot of work, but things have gotten manageable for us. Hang in there.
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Dear Melissa,
You have come to the right place for support. You are not alone. My DH was diagnosed in 2018 but showed signs at least 4 years prior. He is in late stage 5 and it has been hell. Your anger and resentment are so normal. Do not feel guilty as you are experiencing emotions and thoughts as a part of grieving - your previous life, what you anticipated it to be etc. You are experiencing fear, frustration, hurt - of what is to come and the daily apathy and behaviors of your DH. Please get counseling as it will validate what you are going through and help you to see that you are not a bad person, but a normal, healthy person who is going through the most difficult time of your life. Also, please talk to your medical doctor as you may need antidepressants to help you. I didn't want to take them but had to when I couldn't keep my crying in check. It is absolutely critical that you find ways to get out, stay physically active, find ways to vent, get respite breaks. This disease can take you down and you don't even see it coming. Fight for your life and sanity Melissa because you are so young and need to put your oxygen mask on first. You will be better able to manage your situation if you get these supports in place. Please keep venting to us - it will help get you through this.
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Yes! He is losing his executive function in stages. The story of your friend sounds very similar to mine, except I have stayed and done all I could to keep him under control. It's been very challenging as all these years he has worked against me, created chaos and lighting fires at every turn. His credit is still excellent because I have been so on top of his messes, but we've lost everything except the house and the vehicles. I have been crushing under the weight of it all.
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Melissa you are normal! And you are in (and have been in) a very difficult time in your life. My DH does not have fTD, most likely he has vascular dementia, but he also has a chronic disease that attacks his brain. Psychosis is one of the symptoms so, like you, I have dealt with a LOT of behavior issues during our marriage. I have felt everything you described. I am still cycling between pissed that this is happening and wondering if I can hang on until the end. There is still some empathy there for him too but not because he's been wonderful to me over the last 20 years, just basic empathy because he's human.
Luckily I have a counselor now who is helping me realize that everything I feel is OK and normal. The only way I'm keeping my head above water is by reminding myself that I am healthy and young(ish) and that I will have a life on my own terms after this is over. I hope you can find someone to talk to that can help and this forum can be very helpful too.
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This (getting therapy, help from a doctor) feels impossible. I have no insurance and what little money we have left is nearly gone. I started taking steps to get support while we had insurance during this last job and it's an 8 month wait for a PCP around here. I hear therapists are even longer. We waited 15 months for the neurologist. Once I meet with the lawyer and find a way to keep a roof over our heads, I will see what I can do. I did reach out to the neuropsych to see if there are any local support groups around here. This is such a humbling and shocking experience (the financial end) as when we started out, we did everything right and I worked so hard all these years at home to budget and be financially responsible. Now I understand why it was so damn hard and he just wouldn't (couldn't) get on board.
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((( Thank you ))) You guys are a life line right now. I'm so sorry for all that everyone is going through here, but I am so, so grateful that we can share and fear no judgement because we all KNOW what this is really like. EDITED TO ADD: I can so relate to everything you shared. I fear there will be nothing left of me when this is over. I am tired, hagrid, graying and aging by the day from all this stress.
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Hang in there Melissa. My partner has Alzheimer's, not FTD, which seems benign by comparison. I am so, so sorry for what you FTD caregivers are facing—the damage to the underlying relationships is what feels so devastating, even though you must know in retrospect that it was not intentional. I can just testify to the fact that this forum is a lifeline through the loneliness and heartache. Use it.
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I’m so glad you found this place to post. Venting helps. I cannot imagine going through what you have and are dealing with at such a young age. I would be angry too. You have the right to be. Never feel guilty. Easier said than done, I know. There are some great online counseling services available. I know my daughter speaks with one via tele health. Worth looking into. Finding someone who is familiar with FTD would be helpful.
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@MelissaNH There are so many behavioral things, looking back, that I overlooked and dealt with. I remember when my daughter was in college (14 years ago!), he was such a jerk to her when we'd go visit that she didn't even want him to come. I tried to sit him down, and told him he needed to knock it off or he was going to lose the wonderful relationship they always had. Well, he didn't, and for about 4 years before diagnosis (3.5 years ago), our daughter constantly begged me to divorce him. I asked him to go to counseling and his response was that he'd rather just divorce me than go listen to someone tell him he's wrong. I couldn't believe it! So I crawled in my little hole and found ways to cope with the horrible situation I found myself in. He has now been in MC for a month, and I'm having to pick up the pieces of myself that were destroyed from dealing with his emotional abuse for so long. FTD is horrible. The constant negativity and nasty attitudes we deal with for years before diagnosis takes a huge toll on those that have to deal with it.
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Thank you all - so very much - I really needed these messages today. I wish I could hug you all or have coffee with you. I have felt myself getting more and more angry over the last two days and it's really hard because I know I need to let it out (constructively), but it's also not going to solve anything or serve me. I want so badly to be as positive as possible and make the most of this horrific situation, but it just feels like this whole challenge is set up against us from the starting gate. When I do get a free moment to make a plan and get organized, I either can't think clearly or feel like I'm going to collapse. I also recognize that this will pass, some things will improve and others will get more difficult. I just hate feeling like I have absolutely no control and can't take action that will make any of this feel better RIGHT NOW. Blah! I just toggle back and forth. My head hurts. Deep breaths. This too shall pass. Sigh.
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I tried to send you a message to thank you, but it would not allow me to do so. I really appreciate the resources and recommendation, Jeanne. You are all amazing and I'm so grateful :)
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Looking back, I believe the earlier stages (2 and 3) are not always recognized until later on. I am not sure FTD follows the basic 7-stage model for dementia, but I found that knowing the stages has helped me cope with my dear wife's decline.
Stage 4 hits like a ton of bricks. "Now, I know something is wrong."
The earlier stages seem more like your loved one is changing for the worse - apathy, indifference, and maybe even meanness. It's one thing for caregivers of parents, but when it is your spouse, it hurts. In many cases, caregivers question their choice of partner, and may begin to entertain leaving the marriage.
Until the later stages show up. Once you know it is a medical condition, and your loved one moves past the apathy and meanness, caring for them actually becomes a bit easier.
Changing adult diapers is not easy or fun, and neither is helping my dear wife eat dinner. It is better than thinking she no longer loves me, as I did in her earlier stages. This only becomes clear in hindsight. I wipe away a tear as I help my wife, now in stage 6.
This journey is tough, but once you know what you are in for (and what it was), your empathy for your loved one returns.
Love, Bill_2001
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I too am so sorry you’re in this awful, heart wrenching and total disabling position. I can relate as we all can. I’m also filled with anger, rage and fear and then comes that bewildered look from my DH and the sorrow kicks in and I want to do anything I can to make it better..then tears, cause I know I can’t. But what I can do is make his journey safer, calmer and hope for a little laughter and joy along the way. So usually I retreat, after I know he’s ok. My music blares 24/7, I journal, I scream into my pillow and I talk out loud to myself. The thing that scared me a lot was my failure to recognize the disease. My first husband died of leukemia in 1999 and i waited 10 years before getting remarried. I was 50 then and fear that I truly didn’t know him and the thing that keeps me awake all night is the fact that I probably married a PWD. It’s truly mind blowing. I’m almost 66 now and have been wanting a divorce for the last 15 years, not knowing and really wondering why I didn’t know about his brain disorder. Now that I know, I’m beginning to forgive myself and as the pieces start to fit I’m also starting to put into practice all the tips these wise people on this forum so graciously shared. The anger is getting a tiny bit less. Am I destroyed?..yes but not completely💜
Keep the dialogue going, it helps💕Hugs for you.
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I sent you a direct message, so hopefully you can send a reply. Let me know if I can help. ((Melissa))
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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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