Sandy Karger: A FTD Caregiver Story

FTD Caregiver, Sandy Karger, shares the story of her husband's experience with Frontotemporal degeneration (FTD).

[@debibarrington4697]

What a beautiful lady and the grace and patience she exudes is beautiful

[@manueladarazsdi9675]

Well-spoken too!

[@huntercampbell765]

My grandpa was digionosed with ftd this year and it took them 8 years and many medical and neurological visits and he gets very agressive towards my grandma and is very hostile with his medication for his broken back thinking some one is stealing them Or putting a chemical on them he also sees people that aren’t there and talks to them he will also run out of the house he will cuss at them and hit them With his cane and the people aren’t there. He also doesn’t recognize his brothers and sisters and they are our next door neighbors. There are days that he doesn’t remember me my sister and his wife

[@henriettahenson]

I say Take care of yourself ...because my Dad died caring for my mother ...he had a massive stoke .... her illness wore him out ....she is in nursing care in last stage Dementia at 90 years old she has no quality of life now ...my fathers life was taken from him ...bec ause he would not accept help .....So don' t anyone be a martar to the cause GET HELP ....

[@mildredrose1038]

I am living her story presently. Good days; and not so good days. The problem truly is not so much him ( he has been easy to care for), but my sense of hopelessness when I realize it is I who must adjust to this new person, because he will only get worse, then further adjustments must be made.The memories of the fun times and how different he is today, how we have pulled away from social events makes me cry sometimes because that has been very hard for me. I don’t think it is an issue for him. He is content sitting in his chair, sleeping most of the day. Friendships have dwindled and I feel abandoned socially. It is a different challenge each and every day. With God’s help, I will persevere.

[@henriettahenson]

@@mildredrose1038 please try and get resbite even just for a day... You really have to take care of yourself mentally as well as phisically.. My prayers will be with you tonight 💕 🙏💖

[@queenbee3647]

Im so sorry. 💖

[@henriettahenson]

@@queenbee3647 thank you so much.... my mother past away in 2020... It was, a merciful release... Now I'm trying to just have happy memories of when they were both well and full of life....... Im wiping out the other horrible stuff.... Im 70now and I'm trying my best to stay fit and healthy... Because health really is, wealth.. Take care 💕🙏🏼

[@geraldineross5168]

Dear Sandy I was watching your video tonight and everything you explained you and your Husband are going through sounds exactly what my Husband and I are experiencing. My Husband and I have been married 55 years he is 76 and I am 75. We learned my Husband is in stage four Alzheimer’s Dementia and I am his sole Caregiver. Life has changed and I have lost the love of my life mentally. I cry at night when he goes to sleep just watching him turn into a child is so hard. Thank you for being there for people like me who are suffering through this terrible disease. God watch over you and your Husband and take care of yourself my friend.❤️

[@worlds726thbestguy4]

I hope you can find peace. Love from China.

[@sammyrichardson7305]

Hugs and love from the UK

[@kkdoc7864]

You explained the chaotic treatment journey so eloquently. ‘It’s like a moving target.”

[@susanberg5817]

Wise, strong well spoken woman. It must be such a challenge.

[@marysauter9858]

What a lovely, articulate lady! Her husband is lucky to have her…….

[@alicekane3913]

So much eloquence, wisdom and kindness in your story! I believe that my mother who passed away quite a few years ago, may have had FTD. (Her neurophysiologist in NYC determined that she did not have Alzheimer's, but rather a form of dementia.) Years later, so much more is known about variations of dementia. What struck me SO MUCH was your description of your husband's concentration on 'things on the floor.' A 'bell' went off in my head! I recall so clearly my mother frequently looking down at the street/or her apt floor, and often picking up 'bits & pieces.' This is the first time I've heard of this hyper visualization symptom! I loved my mother so very much, and it means a lot to me to try and fit the pieces together of what she was experiencing. I wish the very best humanly and medically possible for you and your charming husband. Alice

[@andrewhazenberg3398]

What a beautiful amazing classy lady . She explained this devastating disease very well . I hope she will be ok . 🙏💔

[@jerryvelders4457]

What a difficult illness to have to deal with. Your husband is blessed to have you there for him.. You have so many admirable qualities .. articulate, compassionate, self-aware, supportive, intelligent ... Thanks for sharing your story, and I wish you well.

[@cathyblock6197]

So well spoken, thank you.

[@honeybuzzard2843]

Wow...Great Lady. Wife, Caregiver. Very Eloquent Speaker. I could listen all day. I often wonder how I could listen to some people and not understand what they're saying. I listen to her, and understood everything she said. Why?

[@officetechtyping]

Because we hear and accept how we personally perceive.

[@officetechtyping]

Read Steinbeck, East of Eden. Pay attention to the servant Lee. He explains why no one can understand him, unless he speaks in a way that they expect him to.

[@bonniedunbar6717]

Your prom dress is beautiful. I wish young people still dressed like that.

[@carolragsdale1105]

Thank you, Sandy for sharing your story. My husband suffers from PPA, a form of FTD that has silenced his beautiful voice. I live to make every opportunity to communicate as easy for him as possible. Dr. Grossman and his team at Penn are wonderful. Sending many blessings and love to all those dedicated to this fight.

[@smiththomson95]

Hello Carol How are you doing today?

[@lindidischler1094]

I’m 52 years old living with early onset Alzheimer’s disease

[@sarahthomas2506]

This lady is very beautiful! She's the bomb! A warm heart and your husband is a lucky dude! Strong love!

[@smiththomson95]

Hello Sarah How are you doing today?

[@jahempress26]

Her eyes light up when she talks of him

[@bt10ant]

Penn Institute on Aging is to be congratulated on presenting this series. The videos are very helpful. Thanks so much!

[@Rosary716]

I’m in bed with multiple issues including a recent broken hip. My husband “isn’t a caretaker” so here I lie, alone all day, unable to leave my room. Since he’s not caretaking, does that me I still have to caretake for him? I’m a great caretaker, been doing it my entire life. Now, no one stepped up. Age 75, married 48 yrs

[@queenbee3647]

Unfortunately young selfish people dont morph into older angels of mercy. I was married to what my mom called her first grandchild for 24 years. He was that selfish. When I gave birth to my daughter it was very traumatic with complications for me and her. He was so overwhelmed he ran back to mommy and daddys house, jumped into his childhood bed, and hid there for three days recuperating! He was 34 years old! I tell you that because its why Im glad I finally said enough and divorced him. I am in the beginning stages of aphasia and cant imagine relying on him for any kind of support. My daughter lives with me and is great. Shes 34 herself, is a well educated professional. I never smoked, drank, did drugs....yet my health collapsed in my 40s. CHF with AFib, COPD, Cancer, now this. I couldnt do it without Kelsey. I hope you have a sibling or a child you are close to, physically and emotionally. It may well be time for your living arrangements to be adjusted. Things get more complicated as time goes on, not simpler. Good luck. 💖

[@catman8670]

Personally, the loss of independence,and becoming a burden to loved ones is unbearable!💔

[@doloresvanwyk1551]

It is a challenge,it change from day to day.And its tuff,if been doing it for about years.

[@zamyrabyrd]

I discovered FTD online in 2017 after years of not being able to get an explanation of my husband's erratic behavior. This started in fits and starts over decades, on the border of eccentric and funny but gradually degenerating into unmanageable impulsivity and mixing reality with fantasy. This made him vulnerable to con artists and scams in the same fashion as his father which made me wonder if at least in his case it was not genetic. "Moving target" is an excellent description of the shifting behaviors that could pass as "normal" to others. In the FTD forums I subscribed to, this was termed "Showtime" which makes you wonder if they had any control over their impulses, at least enough to impress the outside world. Following a diagnosis of lung cancer in October 2019, an MRI was done later that year which confirmed my suspicions, significant atrophy of the frontal lobe. He passed away in May, 2020. Sandy, if you are reading this, are you as I am, from Springfield, Delaware County, PA? Thanks.

[@ConcernFlush-j4p]

Martinez Maria Wilson Paul Hernandez Deborah

[@lindamcclellan8434]

The VA won't let me see his MRI or PET scan....your video was a great help to me....wish you were near.....I get nothing.....

[@junebixby7041]

What a lovely and articulate woman!

[@hannahrosa5485]

Nice lady. My husband had it for 10 years. Very sad.

[@chockpea]

I'd love to know more about the 'Hyper visualisation' she speaks of with her husband that she says is common in FTD. I haven't found any info on that anywhere.

[@sophiepalmer-doran344]

"Hyperfocus is an intense form of mental concentration or visualization that focuses consciousness on a subject, topic, or task. In some individuals, various subjects or topics may also include daydreams, concepts, fiction, the imagination, and other objects of the mind. Hyperfocus on a certain subject can cause side-tracking away from assigned or important tasks. Psychiatrically, it is considered to be a symptom of ADHD together with inattention, and it has been proposed as a symptom of other conditions, such as autism spectrum disorder."

[@tiffanyhall1944]

Hyper visualization, degenerative, psychosocial

[@heidimaude9137]

Amazing lady

[@sharonmathers2928]

Mom. Had.Dementia since. It. Was car accident last year.

[@noreenflaherty4309]

My husband was diagnosed with bvftd at age of 53 8 years ago.

[@sharonmathers2928]

But. Now. Mom. Is. In. Nursing homes.

[@zentafergiefergie7044]

Good luck to you 🌹

[@gamerm0165]

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[@kimmoore0427]

But aren't we all degenerating as we age.......