Caring for a spouse with frontotemporal dementia - Donna's Story.m4v

My husband and myself retreated to Spain, from London, so that he would feel like he is on holiday all the time. He can no longer drive, he cannot be left alone for too long, he cannot deal with anything related to daily life, like documents, contracts, the bank, etc..and you know what? He seems the happiest man alive. The only difference with most of the cases on these videos, is that he became like that after a road accident, which damaged his frontal lobe. He was then abandoned by his family, who never admitted, in public, that there was anything wrong. When I met him, and I married him, I took on his whole life, and all duties; I made his life as simple as possible. Obviously, as he looks good and fit, and reasonably talkative, people do not understand his issues, at least for the first hour. 27 years after, things are starting to deteriorate. She is right, it is like having a giant toddler..the Ipad is on for at least 12 hours a day, and he willingly tags along to whatever it is that I decide..but I have no husband, and no one cares...bless you all who are going through this

You hit it right on the nose. It’s a beast disease. My girlfriend is in late stage six. I’ve been to the journey with her since the beginning. Now she can’t talk, or walk. She’s in Assissted Living. And she could dance and she was smart and she had a great retirement. Beautiful house. Now that’s all gone. Her dignity is gone. And I feel the memory of her knowing me is slowly going. I see that every time I visit her. I’m taking a break for a little while. I’m mentally drained. And I need to recharge. But I’ll go back to see her. Always love her.❤️

My wife at 57 diagnosed with FTD. The comments in this video reflect what my life as a caregiver has become. I try to not make it about me and devote everything I do for her but there are moments I don't see coming. Suddenly reality hits me and I realize everything that we once had is gone. There is no more making plans to do and share things together. Our dreams are over. It has now become sort of a race to make the best of all the rest of our time together but their will be no memories to share with anyone. All the memories are mine only. Thank God my faith sustains me. It is an illness that robs you daily.

My wife was diagnosed a year ago at age 57. She can still communicate but has wild behavior and regressive memory. I went to John's Hopkins to get her correctly diagnosed. Most general physicians don't have the expertise to diagnose this disease. One thing that worked great for me is I got her an iPad with tons of games and easy to use Apps. She uses it about 8 hours a day. I would have gone nuts if she didn't have it. God bless you Donna and all who have to live with this disease.

She said everything I feel right now about my husband who was just diagnosed with early onset. Very few people in our families understand.

My mum has FTD and PPA. I'm sole carer. She's my mum in blood, but her soul has gone. It breaks my heart. You put it very eloquently. Thank you from Cardiff, Wales

Great she speaks out about the effects dementia has on the whole family. Brave lady my respect to her.

i just saw this video after reading about Bruce Willis....this woman is so giving and strong in sending out this message for all of us. she brought me to tears .... because of her humanity, her courage, and her love. overwhelmed...

I just lost my spouse from Alzheimer’s dementia. He lived with dementia for about 8 years. He was the type that threw away instructions and put things together without them. About 2 years after his diagnosis he broke 3 vacuums by taking them apart, misplacing parts and destroying the vacuum to the point where it couldn’t be repaired, he also broke a brand new washing machine. I’m not sure how many trips we made to the ER because he was in severe pain in his leg, knees, hip or back. There was never anything wrong but I had to be sure. Sundowning and sleepless nights, wandering and incontinence was more than I could handle. I placed him a memory facility and he died peacefully 4 months later. I will miss him but I’m glad he’s not suffering any longer.

Finally someone gets how I feel. Thank you for sharing your story.

My husband just died from this and Luey Body and he stopped walking his throat closed and he could barely talk..Yet every so many days he would almost talk and be normal but not walk..our son and I took care of him the last 2 years until He went into hospital the last 2 months..I kept promising he would come home again once he started walking and he would lie at the end saying he was walking on a day I was not there.He was a police officer for 33 years we were married for 38 years..I cry every day. He was 74..

What a precious guy, he didn’t have the capacity to understand his paint on the screen door was an issue then when you pointed it out, he painstakingly tried to fix his mistake with a pin. I can see why you kept it for three years, it’s visually symbolic of the impact of the cognitive degeneration. You are a great advocate and a great wife and your doing important work informing families and professionals.

My husband has this. He is my very large, very strong toddler. I love him but it's tough.

Omg my life sounds the same way. My husband has dementia and i am his caregiver

I too am going through this with my wife who is only 57, such a painful journey for our family as well.

It is so hard...i can't cry any more because i have no tears left...

You just told my story...amazing. Thank you for sharing Donna <3

My soulmate of 35 years got cancer suddenly and he got dementia. He became a shell of a man also. All of our plans gone. He passed a year later after diagnosis. I don't know how you did it for so long. God Bless you.

This is an important story we all need to hear. It could happen in our family, or to us. Isolating socially shouldn’t be necessary when we can all be aware allies, instead of judging fair weather friends. It could happen to you. Be the community you would want if it was you.

That is so right, and it also applies to many other variants of dementia. For some reason most people who havent seen or cared for dementia patients only ever seem to think it is about MEMORY. IT IS NOT! Memory loss can be involved in SOME cases! However dementia extends to the whole range of human facculties - and often a patient with advanced dementia may actually still have a FAR FAR better memory that you do! SO PLEASE EVERYONE JUST STOP WITH THE "no they can't have dementia because their memory is still good" myth. I cared for my partner of 25 years as she developed a form of early onset dementia. Her memory only started to fail in the very last MONTH of what was a four or five year illness. Halfway through - she had completely lost the ability to make sense of what she saw, and therefore could not wash, or cook, or look after herself, would often get lost around the house, fell over, and towards the end increasingly struggled to describe things in conversation, or recognise people - and yet if I had put my keys down somewhere - she was usually still able to tell me roughly where or when it was that I had lost them. She had a form of posterior cortical atrophy - which is different again from fronto-temporal dementia, but like fronto-temporal, is often not seen by those looking in, because conversationally she was still great - and so when the doctor asked her to talk through making a sandwich of course she could flawlessly run through the steps - because she could recall them... what she couldn't do was practically apply that recall to real world objects - and, for example, pick up the correct end of the knife - accurately take butter, apply the correct toppings and physically put the sandwich together. She died in 2013 - and thankfully I have since found a new partner, but sadly I STILL hear people mistakenly equating dementia solely with memory loss! So if your friend or colleague has dementia, or is caring for someone with it, please try to understand that you may not see it - but it does NOT mean it isnt real.