Sandy Karger: A FTD Caregiver Story

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

[andrewhazenberg]

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

[marysauter]

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

[geraldineross]

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.❤️

[kkdoc]

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

[debibarrington]

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

[jerryvelders]

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.

[susanberg]

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

[lydon]

What a lovely, lovely lady. Stoical, pragmatic and sensible. Dignified, classy and so obviously loving. A lovely lady.

[Mary-odgi]

Well spoken....she has shared my oun journey with my husband and his FTD diagnosis

[alicekane]

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

[carolragsdale]

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.

[btant]

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

[sarahthomas]

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

[honeybuzzard]

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?

[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.

[jahempress]

Her eyes light up when she talks of him

[robynelliott]

I too have a husband suffering with FTD plus a reducing hypothalmus. He has had a pituritry tumour operation. This has gone on for 12 years. I admire this lady she is still very together and I appreciate her ability to explain the day to day life. I laugh when people say take care of myself.

[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 don' t anyone be a martar to the cause GET HELP ....

[catman]

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

[lindamcclellan]

The VA won't let me see his MRI or PET scan....your video was a great help to me....wish you were get