Update - DH56 with FTD
I am so incredibly grateful for all the love and compassion and guidance you have all given to me. I'm sure you can all relate when I say that I am losing track of the days. Time is just floating by and I feel like time is like a ticking bomb right now. I know things will not get easier - different in a horrific kind of way - but until I can get these urgent tasks completed, it feels impossible to get to the most important thing - living. This means creating a new life for us to try as hard as possible to enjoy while we can. For us, this will mean a routine, staying active and visiting with loved ones. We will have little to no money to do most of the things on our bucket list and I am slowly coming to accept this.
I am someone who thrives when things are neat and tidy and organized. Yeah. You get it. I've got a million tabs open on my computer, papers scattered all around the house as I take phone calls and move around a million times trying to find privacy so I can focus. I say to myself in my mind that I have got to get organized so I can keep it all together and not lose my sanity, but two seconds later, something else demands my attention. It's like… woah. My head hurts. The laundry is piling up, the kitchen looks like a bomb went off even though I JUST cleaned it, the frig is empty, I can't remember the last time I changed the sheets, the special needs dog needs grooming, the in-laws are texting about Mother's Day, Oh. My. Goodness. Will it just stop for two seconds? Nope. It's 5/4 and I have to pay the bills! And then I start thinking about finances and around and around we go. So much to do and too much stuff in my head, which needs to get organized. I just need him to be somewhere safe and happy so I can get grounded in all of this. And then I worry if that time comes, will I drop from exhaustion and not be able to do what I have to do? I know you've all been there and you understand.
DISABILITY Thank you to everyone who replied to my post and sent me private messages. You are the best tribe ever and I feel like I have found "my people". I can finally get that started without fear of making a terrible mistake. I was so hung up on whether or not I needed to hire another attorney that we cannot afford for fear of losing money that will be essential. I have the appointment with the CELA at the end of the month for all the other essentials. My next decision regarding disability is do I go ahead and do it online or schedule a face to face appointment? Will his diagnosis be enough with just the MRIs and MRA and neuropsych evaluation or will we need that PET scan insurance may not cover? Will we be able to pull off the PET scan before our crappy, impossible insurance (Harvard Pilgrim - Elevate) runs out at the end of the month? The PET scan brings up a lot of fear. I don't want to think about proteins and what this means for my boys. I just can't go there right now 😭. Do they call the workplaces to investigate why DH was let go multiple times? Do I call his former employers and try to explain what was going on in an effort to save his dignity and reputation and also solve the mystery of why he was the way he was? Should I even care? So, so many questions and so many people involved in this dumpster fire.
RECREATION
My husband was a very active man for most of his life. He wants to go play "lunchtime soccer" with the team he played with for over 20 years. He hasn't played with them in four years. Is this safe? Should I tell the team manager? He wants to go on fat tire bike rides with the local meet-up group. Is this safe? Should I tell the organizer? I just don't know what to do. I don't want him to be discriminated against if he can truly enjoy these activities right now. But I also don't want to put him and everyone else in a bad and potentially dangerous position. Honesty and transparency seems best, but feels awful too. He was driving an hour to work just two weeks ago. It's so hard to discern what is the right thing to do. And honestly, I don't know who to pose these questions to. The neurologist was rushed and unhelpful at the last appointment. It was really strange because he was amazing at the first one.
FINANCES This ugly disease has destroyed our finances. I have shared that I have been at home for over 20 years since our first child was born. I have a degree and a resume that feels like a dinosaur. I think getting a job is unlikely at this point. It infuriates me that I have to worry about every cent and asset we have keeping us from getting benefits he has worked a lifetime for. It infuriates me that this disease has made it so it will be painful to live through this journey. He worked SO HARD for everything we have/had. When the boys were little he had four things going at one time (his main job, two side jobs and he coached for a professional sports organization). Having me at home with our children was so important to him. We paid term life insurance for the past 20 years. It was planned out perfectly. It was something we could afford until I went back to work, which was the plan for 2022 (Covid, his behavior, our dog's failing health (bloat, anxiety and Wobbler's Disease) and helping two sick family members made that extremely hard for me to take on and now here we are). The life insurance ran out this year and we could not afford to renew it. It went from $365/quarter to over $4,000!!! We're so screwed it's hard to believe. The 401K was drained to pay off all the "FTD mistakes". What's left in our checking account is all we have to survive on until disability kicks in and most of that will need to go towards paying off the CARE credit card and our high deductible bills that will be streaming in any day now. Honestly, it's just too hard to believe. We have four vehicles. Yes. Four. Another "FTD thing". My vehicle is a 2004. He has a truck he turned into a monster truck, a commuter car from the long-term job he lost in 2020, and the big one… a supercharged Camaro - his dream car we always planned to get him when the time was right (minus the supercharge thing that makes me feel like I'm going to have a heart attack when he starts the car up). The idea of selling them gives me so much stress. And I don't know if this will work against us too. I don't know why I'm sharing this. Maybe in hopes that anyone else that has experienced this financial distress can relate and offer advice or hope. Also because our financial situation is such a reflection of his disease and most people I have confided in don't get it. They don't get the trauma of it all and what it's like to be the spouse who watched it all happen while trying their best to hold on and keep everything together. All of this and I have managed to keep his credit perfect to this day and all for nothing. It's maddening. Okay, that was a lot. But that's where I am.
I'm sorry that was so long. I just needed to vent to people who TRULY understand all of this. As someone on this forum said perfectly, I have been living in the Twilight Zone. For several years now I have woken up each day and thought, "Where am I and what has happened to my life? And who has stolen my husband?" It's just so hard to believe and it's going to take some time to wake up from this nightmare, I think. So much love and gratitude to all of you who are navigating this journey.
Comments
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Melissa, some of this will get easier as you tick things off the list. New things will arise. So much in your post, I will only comment on two aspects: yes, tell people in private who will be coming in contact with him. I know it can feel like a betrayal, but it's not, it's part of keeping him safe and preventing misunderstandings, especially with the unpredictable behavior of FTD. Talk to the organizer of the bike rides, for instance. When i had to start doing this for my partner, every single person reacted with compassion.
The other thing I would urge you to do sooner rather than later is find a geriatric psychiatrist for him. You will almost certainly need one as the disease progresses, and it will be better to have this crucial medical resource already in place rather than scrambling to try to find medication help in a crisis. There will be a wait, so get on the list now. You can perhaps sell it to him as a second opinion.
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Thank you. I appreciate your thoughts and advice. I'm sorry - I know my post was a lot. I could feel it as my fingers just kept typing away, unloading the things in my head. And that just scratched the surface. But I know you all know this place I'm in. There isn't much to look forward to in this journey, but if there is one thing, it's being able to breath after all these things have been put into order. I have always been a planner and right now I am feeling like the biggest failure. I should probably take a break from all this for the weekend and focus on the household stuff since I can't do anything on the business end and my head is not clear enough to do financial work or planning. I'm starting to feel paranoid about myself too. This is an awful feeling. I know I'm not losing it, but I have this fear that I am going to appear that way to others. I'm just incredibly stressed and overwhelmed. And so very tired. I haven't slept through the night in three years. Ugh. DH is off on a walk and a huge part of me knows he is fine, but now I'm paranoid about that too because of all the information in my head. I'm trying so hard to stay logical, calm and balanced. It sure is a challenge.
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During a very tough year last year i started a list called "today's tasks." Just to help me track and feel like anything got done. Some days the only thing that got accomplished was making coffee, or filling a prescription. But it helped keep me grounded.
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Melissa, Re DH going out, you may have read this elsewhere, but I can recommend the tile devices linked to the Life360 app. You can create a circle of family members . For DB we got the credit card size for his wallet, a key fob, and they were linked to the app on his phone. You may want a key chain fob if only to get it working for yourself before hubby. The only cost is for the Tile, there is no recurring monthly cost and the apps are free (skip the bells and whistles for a premium). When I read of your hubby going on these Adventures I thought good for him from a social point of view, and I thought the above might bring you peace of mind
Re prior employers: DB had private IT customers in addition to hi day job. His wife recently showed me two stale dated checks from an old employer. DB said something that he didn't think he left on good terms in their last encounter. We called and it was agreed the checks would be replaced if I dropped off the originals, which I did Friday morning. I was asked to sit down and was asked how DB was. Protecting his privacy, I thanked her for asking and told her he'd been dealing with some serious medical issues that are now being diagnosed and treated. Maybe you can use that phrasing. She went on to tell me how nice and kind he had always been in their dealings.
Lastly, if I may, I've been helping DB and SIL untangle a lot of financial issues. Seeing this through your eyes makes me feel good about the part of the burden I'm lifting
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In grief counseling we talk about doing “the next one thing “. Because you’re an organizer, you are feeling overloaded. This is something you’ve never done before. The one thing you didn’t mention was taking time to stop and using it to enjoy your family. Getting them together doing something that brings some laughs and good memories. You’ll burn yourself out quickly if you stay at this pace. Accept the fact that you’re not going to be able to control or organize this disease. Make the lists, prioritize the tasks, take time for yourself and family. Then begin checking items off one task at a time. No time rules, no chastising yourself because you’re not perfect or because you didn’t expect something to happen. We aren’t super human. We’re just people trying our best and supporting each other. New issues will continue to arise. And you’ll deal with them like the others. Step by step, the next item, the next thing to do.
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Thank you so much, @concerned_sister . Your brother and his wife are sooo fortunate to have you. I just want to give you a big hug right now!
I will look into the Life360 app. I've heard about that app in the past (mostly from parents using it to track their children) and now more recently. I had been trying to track DH for past year driving to work on Find My iPhone and it's been difficult. I am so glad he still wants to go do things and remain social. I think at this stage and with all the information I now have, I am just really scared that he'll be out and this will be the day that another neuron goes and who knows what ability he will lose and what FTD symptom will rear its ugly head. I'm not certain what stage he is at, but I'm fairly confident he is somewhere in stage 4.
I love that you were able to meet with that employer and that she showed care and concern and gave you that positive feedback.
Thank you, again, for taking the time to respond. My heart goes out to you and your family as you navigate all this.1 -
Thank you for all of these important reminders. All of your words resonate and make sense. I am definitely thinking about taking the time to stop and enjoy family. It will be a huge part of our "new normal", but it feels like it's got to be on the back burner for the next few weeks as I try and navigate all these urgent matters. I so wish I could just "skip ahead". Even though he is likely in stage 4 and we have some time, I fear wasting every minute, although I know it's essential to get our ducks in a row.
Yes. I will burn out quickly. In fact, I've been dealing with burnout for well over a decade witnessing his personality change. I have been chronically stressed and feeling depressed for as long as I can remember, but I just keep on going. It's really hard and I do worry about myself. I am so self-aware and yet, at times, finding balance and doing anything to keep me from losing my own mind feels elusive. It's like playing a never-ending game of whack-a-mole.
It's strange because I have been feeling a lot of the same feelings lately that I felt as an overwhelmed stay-at-home mom. It's like I have all these great ideas and plans to create the best life possible while we still have DH and yet all the day-to-day life BS takes over. All I keep thinking is that I have got to do better this time. I don't want to have regrets when he is gone. Thank you so much for your reply. You have helped me a lot!2 -
Melissa i hate to pile on with one more thing but: if he is stage 4, he should likely not be driving. This is a huge issue and a huge fight for most, but needs to be on your radar for sooner rather than later. Once you talk to the attorneys, you may have an opportunity/need to sell the vehicles, and the one you keep or buy should be one that he is not familiar with and therefore less likely to drive. But many of us including me have had to fight this battle on many fronts...
Edited to add: definitely have this front and center to talk to the neurologist about tomorrow. Sometimes it helps if he hears it from the doc and not from you. Let us know how the appointment goes....
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Melissa, this isn’t about doing it “better” or planning special memory moments. It’s about making the best of what is right before you. You are so spot on! The daily chaos controls our lives! So how can I make the most of it in the middle of it. You’re modeling to your children how to deal with uncertainty and keep your sense of humor, your flexibility, your love in the midst of the moments given you. Learn to ride the waves. Go with what is happening, make as much lemonade out of it that you can, and then lock yourself in a closet and have a good cry. I strongly suggest you go online and find a counselor. An hour a week will go a,long way towards giving yourself time to take care of you.
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Oh, yes, it is most definitely on my radar - front and center. It's the #1 thing he's struggling with right now. The neurologist really wasn't any help. He left the door open to driving even though I expressed my concern. We don't have his driving evaluation until the first week of June. Even if they say he passes, I still don't want him to drive for all the reasons many of you have struggled with. And there is no amount of reasoning with him as far as "doing the right and noble thing" because he has anosognosia and truly believes he is fine. It's extremely stressful and makes me feel like I'm going to have a nervous breakdown because ever since his MRI in January of 2023 I've hated watching him drive away. So anyway… I'm working on it. As for the cars, I was waiting until I meet with the lawyer to discuss that, but the plan is to sell the monster truck and sports car and hopefully save a ton on car insurance. But at this rate, I'm not getting my hopes up for any good news! It all feels so grim.
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When I said I have "got to do better this time", I meant it in terms of letting the unimportant things go, not trying to be perfect, self-care, etc. That kind of thing. And your examples are great. Thank you so much! :)
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Hi Melissa, I have no good advice for you, but I can so relate to your situation. My husband started showing signs of dementia in his mid 40's. I was a stay at home mom. Term life insurance termed out, and became way too expensive to continue. Almost 6 months until disability funds kicked in after he had to quit working at age 51.
I did go back to work, because there was just no other way to survive. Our son was in 8th grade, we needed health insurance and some kind of income.
The stressed everything all the way through. No stage was easier than another. I am so so so sorry you're going through this. No one should have to.
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Oh, wow, ((( @JoseyWales ))). Thank you so much for reaching out and I'm so sorry you and your son are going through this.
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since I have gone through the SSDI process myself, here’s my two cents. It’s easy to file online. I did that and was denied (standard practice). But for you, I would suggest an in person appt. SSDI does rush through the process for certain disabilities like your husbands. But the online form is too generic. I encouraged my brother to make an appt recently because he’s under 60 with a rare heart condition. The person who helped him got the ball rolling and told him because of his disability he was smart to come in and provide the necessary information directly. You can schedule an appt online. Our local office also takes walk ins. The best of luck to you.
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Thank you SO much for this. I’m going to make an in-person appointment tomorrow.
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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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