FTD from a Caregiver's Perspective

[@kathyschultz3071]

Hi! Thank you for making this video, sharing your heart breaking story. I'm 15 and my mom has FTD.... I remember the talk my dad gave me and my sister....he said that this disease is going to kill her. Ever since then my world has been falling apart. My mom also got diagnosed with Venous Dermatitis, which creates chronic inflammation (aka swelling) on your lower legs. In my mom's case it was her legs. We've been taking her to a lymphedema and wound care clinic twice a week. My dad told me that this will never fully go away, my mom will have to deal with this for the rest of her life..... Then on August 8 (2 days before my bithday) my mom fell off the curb when she was going to a doctor's office, and broke her arm.... It feels as if the world is against my family. Nothing ever good has happened this summer...but after seeing your video I realised that I'm not alone, there's other people besides me dealing with bad things in life. So keep your chin up Buttercup

[@RobinAlbright]

Phillip... just wanted to check in and see how you are... how your mom is... how your family is. I'm so sorry that you've had all of this to go through. Thinking of you and hoping you're well.

[@marybethprimeau5014]

Wow - finally had the guts to watch this. Dave is so much like my John, diagnosised 2 years ago. I feel your pain and am praying for you

[@RobinAlbright]

Marybeth... so sorry that you're going through this. It's the hardest thing that I've ever faced, as I'm sure it is for you. I feel your pain as well. Should you ever want to talk - I'm here. OR email me at [e-mail].

[@RobinAlbright]

Marybeth... how are you? How is John doing? I'd love to hear. Just wanted to catch up and say hello. Warmly, Robin

[@carolpoole7277]

Oh my goodness, you are describing my life right now. My husband has FTD, everything you said, you and Dave are going through is what I and my husband Jim are going through. I’m the kind of person who wears her heart on her sleeve, I want to do anything I can to make Jim’s world better. I sit and cry in the bathroom, for 15 minutes allowing myself a pity party. Maybe 2 times a week. One of the most difficult things for me right now is what you mentioned about Dave not remembering how much he must have loved you. My Jim, is showing all these signs as well, along with anger and frustration, he sometimes acts as a child when I tell him he can’t do something that might hurt him. I know you are not suppose to argue with them, and Jim is always right, no matter what, he always has to have the last word. I feel sad and lonely now that we can no longer do the little things we loved. Unfortunately for the caretakers it is just as difficult. Robin, thank you from the bottom of my heart for sharing your story with all of us. I have a strong Faith and know God will help us through every stage of our new journey together. God Bless you and everyone that is going through this horrible disease ❤️🙏

[@chrisb1190]

Robin, thank you so much for this incredible and touching video. My husband and partner of over 40 years was diagnosed with PPA four and a half years ago. It's a somewhat different variant of FTD, but one with so many similarities as those you described. You expressed, as no one but a spouse can, what a horrible, slow loss this terrible disease creates, and your description of living with a different person speaks to me. I can only hold fast to the belief that what a couple of other women have told me is true: in the end they felt blessed to have had the opportunity to care for their husbands on this journey. Thank you again for your wonderful words. Chris.

[@RobinAlbright]

Chris - thank you for the kind words. This road is a tough one and from what I understand the stretch ahead will be even tougher but at least we have one another to share our experiences with and learn from one another. Take care of you and know that I'm sending you a big virtual hug.

[@claraedouwesdekker6389]

Bless you Robin! Thank you. My husband was diagnosed with FTD 10 years ago. It is hell. We have depleted our financial resources, I am 70 yrs old, with own physical disabilities, and am petrified that I will not be able to give him the care he deserves. To lose one's beloved thru this dreadful, cruel, unfeeling, unemotional disease ..... to live with a stranger ...... and yet to have this dispairing love and longing for what used to be, truly sucks. I cannot think about tomorrow or the day after. I simply cope with one hour after the next. And I am permanently exhausted. I unfortunately have no bright ideas or positive hints to share, I only know, intimately, what you and every other carer/wife goes through.

[@TheSchazam]

My mom (55) was diagnosed with FTD last summer and it is absolutely heartbreaking to slowly lose her, bit by bit. Someone told me to grieve the loss of who my mom used to be, but to embrace my mom where she's at today as much as I can, and to love her as she is. It's so sad, it's indescribable. This video helped me feel less alone in the experience of losing a loved one to FTD.

[@ldio2221]

Thank you for this video! I sobbed and sobbed...there's no light at the end of the tunnel. I wish I could be stronger.

[@marij3219]

I have experience with dementia and am now afraid it is visiting my life in the worst way possible, the love of my life, my husband. But today I'm only here about you. You are brave and honest and very very helpful. You have a great way of presenting your story and important information about medicine and how it can let you down. God bless you. My heart breaks for you. Take good care of yourself. ❣

[@wingzofsteel]

My son has just been diagnosed. It really does suck. Thank you for this presentation. Prayers for you and your family.

[@MarcyNelsonGarrison]

Finally had a chance to watch this - Oh Robin, My heart aches for you and I am touched by your commitment to reach out and share your story - creative, courageous and powerful!

[@yuvgotubekidding]

I just went through this from beginning to end. My wife just died 11 days ago at age 61. Two years and 10 months after her diagnosis. After much reflection and looking back our family and friends realized the symptoms go back 2 years prior to diagnosis. I was fortunate to have a pension that allowed me to retire. Her Social Security Disability approval took only 2 months via Compassionate Allowance terms. I cared for her myself at home the entire duration of her illness. Since it is 100% fatal I prayed to God for mercy for her. He answered my prayers. There was no pain or struggle. She entered her new life peacefully.

[@RobinAlbright]

I’m so very sorry for your loss. You sound like a wonderful husband. FTD is so baffling to me. My husband is slowly progressing. As a matter of fact - there are days that he seems close to his old self but then the other days - it’s obvious that he’s challenged. I worry so much about the future and try to be mindful while running our household and being the caregiver but Dave was much better at being “in charge” than I am. It’s hard. I don’t mean to take away from what your experience has been. I’ve heard that the ones who go quickly... it’s really hard. So - again - I’m so very sorry for your loss. Sending prayers of comfort and healing for you my friend.

[@christinewaddell3509]

Thank you for this video. It has helped me in my journey to fight for a diagnosis with my husband. I keep getting told "he's too young to have Dementia". I have been told its depression, PTSD, etc. but the symptoms just keep worsening and not improving despite the conventional treatments for those. I finally fought back and got the family doctor to secure an appointment with a neurologist and a specialized memory clinic. I so understand the good days and the bad days slide. I live this daily and wake up always wondering what day it will be today? The financial hardships and stress is incredible as you never plan for something like this at our age. Thank you for this and yes, I will keep my chin up but on some days its very hard.

[@dr.bethgioia6980]

Oh Robin - the same substance of my soul..... This is wonderfully healing and will be amazingly helpful for many..... God has a way of helping us find our calling through suffering. I miss you soooo very much..... Tickets are cheap in Sept......

[@jelafean]

Thank you Robin for taking the time to make this video, I have been a caretaker for my mother for the last two years who is in end stage FTD, as you said, A very difficult disease to be a part of and to witness, thank you so much for sharing,

[@sami_am7860]

Thank you so much for this Robin. My wife has been diagnosed with FTD after 4 months of doctors not knowing here or there. I can identify with your pain. God bless you!

[@bakokat6982]

Thank you Robin, your video says everything ! We are going through this, my husband shows all these behaviors and symptoms, except for thankfully the aggression. I miss my husband too, he shows many of the same symptoms plus Parkinson’s symptoms. I feel robbed as well. Bless you dear.

[@1hamblin]

Thank you for sharing this with me Robin. My heart hurts for you and Dave.

[@RobinAlbright]

Nate... thank you. How are you? I hope well. Warmly, Robin

[@nancyalexander7528]

You certainly have your hands full. One thing I did while taking care of my mother and husband, was usually once a day "God doesn't give you any more than you can handle." That is hard to understand but it seemed to help me get thru the days. Hope it might help you some, cause it isn't easy.

[@knulife8344]

Thank You, Thank You for posting this. My husband was diagnosed a week ago, it been a long 3 year journey to this diagnosis. Now, that I have an explanation for the madness of our life I am numb. Feeling that something is very wrong and finding out it’s not just in my head is a strange cruelty.......mental illness is cruel. Your story is very similar to ours. Robin I pray you are finding as much comfort as you have given me and that Dave is peaceful and enjoying your new life together.

[@RobinAlbright]

Knu Life ... I’m so sorry to hear about your husband! It really helps to know what you’re dealing so I’m glad that you’ve finally acquired a diagnosis. I can’t imagine how tough the past 3 years must have been. I’m just so sorry. I’m glad my video helped. There is much comfort in knowing that we aren’t alone. There are FTD support groups scattered across the US (more and more are popping up here and there). I’d encourage you to find one. It really helps! Remember to take care of YOU through all of this. It’s not easy but I imagine you to be quite strong. ❤️

[@cynthiaarons9373]

Well done! Love your illustrations. Thanks you for sharing.

[@tammysmith4154]

Oh Robin, I am so sorry you and your family are suffering through this. You are with my thoughts and prayers.

[@roseguber3240]

The husband is suffering more, especially if he has lucid times..I would rather my husband had another woman and retained his brain capacity...

[@breezyveezy1]

My mom was diagnosed with Bulbar ALS and she has symptoms of FTD as well. Thank you bc your video describes her flat affect and personality changes

[@timothyb949]

Oh my dear Robin... I so wish you all the best.

[@constancefry1156]

Thank you for sharing! You put into words what my life has been for the past 4 years!

[@RobinAlbright]

Hello Constance. How are you? I just wanted to touch base, say hello and that I hope you're well. Hugs from me. Robin

[@angieyoung3746]

Thank you for sharing this video. I have been watching different videos to get a better understanding of FTD. My mom was recently diagnosed with FTD. She is also going through a traumatic divorce due to FTD. My mom has been staying with my son and I for one month. My life has literally been turned upside down. I experience very similar behaviors and you expressed in the video. I am her primary caregiver and some says it's ROUGH. I am currently seeking a sitter for a few hours to give me a break. Again thanks for sharing this video.

[@debradixon9430]

Thank you so much Robin. We are going to see his physician tomorrow and I am going talk and be very honest with his Dr. They keep saying that it's depression but it is something more too. Very much more. I will let you know how tomorrow goes.

[@RobinAlbright]

Debra... how was your doctor's visit? What are you finding out? I hope you're finding answers but I sincerely hope that it's not FTD. It's such a hard disease. Let me know. Sending hugs and prayers. Robin

[@123beardie]

This was wonderful Robin! Prays your way!

[@RobinAlbright]

Prayers coming back to you as well. Thank you.

[@franStamps]

My mum has just been diagnosed with FTD….she is 86 but I believe this has been developing slowly over the last 3 or 4 years. I became really aware of it last year when she couldn’t cope with her incontinence and started to do strange things like licking the cutlery clean instead of washing it after using it and putting it away. I’m reading a lot about couples as it’s a form of dementia that starts in younger people but nothing much of how it affects older people . I recognise a lot of the symptoms you describe in my mother….the blank look, apathy and lack of empathy. I sometimes forget she has good and bad days….occasionally I see a glimmer of my old Mum…. Thank you for sharing your story.

[@janetborden6315]

Thank you for this. I am at the beginning of all of this, he isn’t diagnosed yet but appointments are made. I miss my “Dave” more than I can say.

[@bfields8943]

Thank you for sharing your story. This sounds just like my mother who was diagnosed at 58 this year with bvFTD.

[@lindagarcia8826]

Hi Robin, Thank you so much for sharing such a personal story between you and your husband and FTD. I know my Mom has FTD. Thank you again you touched me we're not alone. I will pray for you and your husband much love your Sister in Christ Linda

[@nanolight4337]

most excellent presentation. yes to thankfulness for meds that keep caregivers from fearing for their lives from someone that is now a mean shell of what they were. left out feeling guilty wishing the life would end because this is not life for any of us. Federal employees took free flu shots for decades and study underway indicates they are the most numerous cases.

[@lindauribe6872]

I just lost my husband to this at 74 and he stopped walking and talking limited and could not get to the bathroom no sex drive and he was a retired police officer and Detective for 33 years..His brain changed and he would get confused and his heart began to fail and breathing needed oxygen..My son and I took care of him until the last two months..Thank God we were retired and I now have his full retirement.. But I cried than and I cry now..I lost him slowly over the last 2 years..but when he died I lost my husband in the final way..I am crying now and today is my 75th birthday..We were married 38 years.

[@RobinAlbright]

Beth... I miss you too and thank you for the words of encouragement. Big hug from me to you.

[@RobinAlbright]

Tammy, thanks so much for the thoughts and prayers. It's certainly been tough but we all have something that we go through. ♡ Hope all is well with you.

[@RobinAlbright]

Diane...I'm so sorry that your family is dealing with FTD. It's nice that we have the ability to support and encourage one another (via KZbin, Facebook, etc...) I'll pass along Bill's BBQ site! It looks wonderful. Thank you for the nice words.

[@sandieeisenberg5996]

When I watched this I thought my God I could have written this myself. Your story is almost the exactly like yours.. You are right, this sucks!! Prays for you and your family . It is hard and only gets harder. Thanks for sharing.

[@RobinAlbright]

Hello Sandie, How are you? I just popped on here and wanted to reach out to people who have been dealing with this disease. Just wanted you to know that I'm thinking of you and I hope you're doing ok. Warmly, Robin

[@daleyounts3426]

Thank you for sharing your story

[@Corinna_Schuett_GER]

Dear Robin, idk how you're (both?) doing after these years but we have made good experience with mykotherapy (medicinal mushrooms) to slow down the symptoms and control the process. Blessings your way from Germany! 🙏

[@bonniecapewell4780]

Thank you for sharing, for your honesty... I am sorry for what you are going through . Though now it is 2020 and I would imagine your world has greatly changed. I am just starting my journey with a husband who has some kind of “brain issues”... not yet to be figured out 😢👎

[@phyllisjohnson9581]

Wow. You put together a very sensitive and touching description of this beast of a brain disease. I really need some good legal advice but there seems to be a dearth of it. My husband filed for divorce based upon paranoia and delusions, after leaving home in the middle of the night. His brother died of complications of FTD. There are many similarities, although differences in the onset and symptoms for each of them. He doesn't think there is anything wrong with him, although those who come into contact with him can see it. I now am defending myself against his outrageous claims. His attorney has taken on his irrationality. Neither my attorney nor his seem to want to understand the disease; they are treating this like a "regular" divorce. My estranged husband is floating around out there...I have a restraining order...and his angry letters to his attorney show that he will do whatever it takes to get as much money as he can. The disease is destroying everything we built together. Is there anyone out there who can advise me?

[@RobinAlbright]

Phyllis - I'm so very sorry that you're going through this. Between the support groups that I've facilitated and this little video... I've heard so many horrible stories of the destruction FTD creates in a family. Has your husband been properly diagnosed? if so... what if you reach out to the AFTD and ask for advice. Maybe find someone who represents and understands FTD to stand up with you. Ask his doctor to get involved. It all sounds horrible and again... I'm so sorry. Take care of yourself. I'll keep you in my prayers and send positive thoughts your way. Chin up.

[@phyllispalazzola9269]

phyllis johnson said

[@111455]

the gist of this heartbreaking story seems to be docs not taking close family seriously about observations and/or turning their noses up at the input because what do we know? we didn't toss half our lives at schooling for this.

[@RobinAlbright]

Thank you Devon. Prayers backatcha!

[@CathyRadkecureistolaugh]

Your story sounds so similar to mine. My daughter is 24 years old and since a grand mal seizure her whole behavior changed. Same rodeo with doctors. I cannot thank you enough for your story. Were not alone and you remind me of this. Thankyou

[@RobinAlbright]

Cathy, I'm so sorry for the challenges you're facing. My new thing is that I'm trying to remind myself that I have a new normal and to let go of the past - not to forget all of the memories but rather to let go of expecting anything to go back to how it was. It's hard but I'm getting there. I look for a smile or a happy moment and at the end of the day... I gather them all together and remind myself that my new normal is full of positives - just have to intentionally look for them. Just know that I'm thinking about you and sending you happy thoughts.

[@RobinAlbright]

Cathy... I'm so sorry that your daughter is having problems. Is she better? How are you? Let me know. Hugs... Robin

[@SisterSunshineTV]

My father in law had bvftd now my husband is starting to withdraw and I am quite afraid he may have it

[@christinemeehan3900]

2015 my husband of 29 years and father of two great kids 19,22 was diagnosed with bvftd. he too has similar symptoms. Watching you lose your husband is torture. I don't know what is worse a sudden death or this slow debilitating one. I need help.

[@RobinAlbright]

Christine... how are you? I thought I'd check in. Hoping that you're doing well. Let me know. Warmly, Robin

[@christinnovak7519]

This is Good!!! It is hard! I still can get better. “Faith”

[@debradixon9430]

Robin, I don't know if you check this site any more but I think my husband may have this dreadful disease. The biggest change is he has no real interest in me and he did have a very significant sex drive. He loved me above all things. Now I'm lucky if he touches my hand and he has checked out of life. He can sleep all the time if he gets the chance. He has become an angry and complaining man who sees no good in the world. My whole family can't stand to be around him anymore and I am heartbroken. The man that loved me is gone. This new man is very difficult to be around and I cry a lot. I just don't know what to do and I feel so alone.

[@RobinAlbright]

Debra. Hello. I’m so very sorry that this is happening. If you’d like to talk sometime, please feel free to call or text me sometime at 309-261-0934. In the meantime - I’ll be thinking about you and sending you warm comforting thoughts. ❤️

[@RobinAlbright]

Oops... I put your reply above and in the wrong place. You can certainly tell that I'm a newbie. What I tried to say before is: "Thank you. My mom used that phrase often when I was growing up. Your comment serves as a great reminder" :)

[@jont2576]

I have FTD and I'm only 32....I'm afraid.....it's like all my previously complex and varied thoughts and deeply introspective thoughts are gone.....I have trouble accessing past memories in my life......my brain doesn't carry on a thought past the current or basic surface anymore..like I try to carry on a thought into deeper and more philosophical and convoluted thoughts Like it always does it's like there's nothing.......my mind feels like it's dieing and shrinking.....I don't feel anything about anything anymore.....like people are just people,like they are just there,all my biased or prejudices that I'm sure I had that people have conciously or subconsciously,it's like my brain doesn't sense that instinctively anymore like if girls that would feel attractive or anything....or make me feel threathened in the past by my own insecurities I'm sure,people are just people my brain thinks or perceives nothing of them,even my racial bias or prejudice that ashamedly harboured,it's like my brain doesn't feel anything it's like my brain doesn't know itself..... When I look at food and drinks I swear I don't feel anything anymore ,the brain doesn't know or tell me what it wants like it used to...it has no thoughts or feelings about anything....all my preferences or addictions I don't even know or feel or understand all the deep regrets And existential angst of my life and I had alot growing up,I was a deeply depressed and socially anxious and kinda reclusive or introverted kid would kind of like missed on parts of his life something he carried with great existential angst and grief and pain.....but now I can never fixed anything in my life...... I can only describe the rough outlines of who I am but I can't give the details or nuances I don't even know if I know what they are anymore....it's like the person is gone........ Used to post under the username or pseudonym frenchbriefs on edmw and sammyboy forum courtyard and axxs on social anxiety forum...and frenchbriefs on Reddit....have tens of thousands of posts over the ten years,it may be the only record of who I am left......and Jon_t(I think u can figure out my email by now) on KZbin.....also thousands of comments over the years....might be the only record of me left....think I had a blog too .....wonder if I could or someone tech savvy would do a trawl of me on the internet and like collect all these Or email the admins for the database......

[@RobinAlbright]

Hi Jon. I’m so sorry that you have FTD and you’re only 32. That’s so young. I will keep you in my heart and prayers. ♥️

[@jont2576]

@@RobinAlbright thanks....r u the wife of the husband in this video?

[@RobinAlbright]

@@jont2576 - yes I am. The Mrs Albright to the Mr. Albright.

[@dianefehon7812]

Oops, I didn't realize I was signed in as my son, Garrett. Sometimes I think I'm getting FTD, too, because my brain has to think for 2. : )

[@RobinAlbright]

Diane... how are you? Let me know. Hoping that you're well.

[@sherrymcmahan8846]

FTD "This disease Sucks!" I thought I had a corner on the words "This disease Sucks!" He had the Progressive nonfluent aphasia (PNFA) variant. My Dad passed away this week from choking on food. Every meal was eaten like an animal wolfing it down. I am grateful he has passed because I was ripped apart by watching him beating himself to death falling down. "This disease Sucks!" We would be arrested for letting an animal go through what my Dad has gone through. He could not see that there was anything wrong with falling down a dozen times a day and he could not deal with being restrained in any way. "This disease Sucks!" He used to be fun. He used to laugh and He loved to tell stories. He used to love to read. He loved good food. He loved to build things. He loved my Mother. Slowly he did not Love anything. He basically could not talk. He just stared and stared and stared. He didn't shave. He didn't brush his teeth. He could not remember loving my Mother. "This disease Sucks!" And now he is gone. I miss my Dad and I am glad he doesn't suffer any more. "This disease Sucks!" I hope some day I can quit crying. "This disease Sucks!"

[@RobinAlbright]

Sherry, I'm so sorry that I'm just now really reading all of these. I think that I've been overwhelmed myself and haven't really paid attention since I put this video out there. I hope that life has improved and that the happy/fun memories of your dad have made their way to the front of your memories... rather than the crappy FTD ones. I'm so sorry that you've had to experience FTD. I hope that you've found your smile again. Love to you... Robin

[@hannahrosa5485]

Our story almost exactly. He passed in 2014.

[@RobinAlbright]

Jnia ChildoftheKing - I’m so sorry for your loss. When was he diagnosed? I’m just so sorry.

[@hannahrosa5485]

@@RobinAlbright He was diagnosed at age 60. We'd been married for only two years before he could no longer work full time. He was a professor. The hardest for me to cope with was his retreat into himself and unusual obsessions. I felt like his widow ten years before he passed. Still miss the old Rod. I am sorry too for your loss. Keep well.

[@123beardie]

I'm a newbie too! So much so that in apparently signed in as my son, sorry!

[@KenWAnderson]

Dear Robin, thanks for sharing these devastating circumstances. At the risk of sounding trite or simplistic, please, please, please investigate non-medical avenues of treatment protocol. The medical profession has cancer by the throat (and makes tons of money on it) ... but more and more people are realizing that meds are not the answer ... and are being healed through natural means. I'm wondering if someone in the know might be able to help you with BVFTD as well. I'll pray to that end anyway. Heartfelt. Ken

[@GarrettFehon]

Thank you for this touching, heartfel video, Robin. My husband, Bill, also has behavioral variant FTD. He was diagnosed in Nov. 2009. I relate to your story so much! I cried a lot until we finally got the diagnosis. It was a relief to find out it has a name. It's a tough, exhausting, beyond-challenging journey for anyone caring for someone with FTD. It's living loss that cannot be fully grieved. Like you, we want to spread the word about FTD, so others can get a diagnosis quickly. We make and sell Bill's recipe for organic BBQ sauce and donate 10% of the profits to the Association for FTD. Find out more about our story at www.billsbestbbq.com.

[@RobinAlbright]

Diane... let me know how you are.

[@RobinAlbright]

Hi back :)

[@carriermom]

Hi

[@RobinAlbright]

Hello... Amber. Your dad still has this disease and one day, I fear that you'll regret alienating us. Please consider reaching out. Love, your mom