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My husband, a retired physician, was diagnosed with frontal temporal dementia and while his speech can be generally good he gets tongue tied, can't find words, can't use the phone, watch TV, read, or remember events at all.

Answered by David Troxel

February 3, 2014

My husband, a retired physician, was diagnosed with frontal temporal dementia and while his speech can be generally good he gets tongue tied, can’t find words, can’t use the phone, watch TV, read, or remember events at all. My biggest problem is the sun downing which can start at 1:30 and will last till bed time.

Often he doesn’t know me suddenly and I have to leave the house and come back in as me engaging family to talk to him to see what he’s thinking. He sees people, is paranoid and unreachable. He never remembers in the morning and usually sweet. The Aricept and Namenda seem to have stopped working the past year and reducing the dose made no difference. I do all the things suggested but nothing works, he turns off the lights, music etc. Isn’t there any medication that can help with this? I am the sole caregiver because he is happy and good until afternoon or evenings and cries and is hurt if I leave him with my sister for an hour here and there. I want home to be as happy as possible each day and I know he will not accept a stranger in here. I’m sure I will explode soon.

Frontal temporal dementia is one of the toughest dementias. It is the only dementia that impacts more men than women and the peak age is 55–65. As you describe, it can impact language and personality and create a demanding caregiving situation.

As I read your issues it seems clear that you need some help! You say at the end that he is likely not to accept someone in the home, but have you tried? The socialization and engagement that can accompany some extra help can be beneficial for him. You may be right that he may not like it but if you get the right person to help out it’s amazing how a “no” can turn into a “yes.”

I’d recommend that you contact your local Alzheimer’s Association or society, or a local senior service agency and ask them to help you make a game plan. You might also consider a geriatric care manager, a nurse or social worker who knows local services and can help you get some assistance.

Doing this work is also important for his ultimate well-being. What would happen to him if something happened to you? If you build in some support, your family will have many more options.

When you get some help, you’ll be able to step back and gain some perspective and hopefully recharge your batteries.

Thoughts and stories from others

  1. June 6, 2015 at 04:16 pm
    Posted by Jennifer Walker

    Hi, I was 35 years old and i was unable to find someone to settle down with, someone to call my own. I was unable to find a husband. My family was placing so many pressure on me because i was the only one amongst my siblings that was still single. All my friends were getting married and having kids but i was left out unable to find someone to settle down with. I was depressed. I sought for help from counsellors, friends even dating sites. Whenever i met someone that i truly loved, they keep off from me. It was as if something was pursuing them away. I had examined myself an
  2. January 6, 2015 at 11:47 am
    Posted by Amy

    So far, this is the story that I can mostly relate to. My father-in-law is now 65, I think that he was diagnosed with dimenshia, around age 58-60. His wife was his caregiver until her passing almost two years ago. I don't know exactly what his exact diagnoses is because he will not co-operate with trying to do the MRI's or CT scans. I have taken him 3 times and myself plus one of the techs have had to physically hold him down and still don't have clear results from any of the tests. But the way that you describe your husband's actions, sounds exactly like him.
  3. March 13, 2014 at 11:15 am
    Posted by Pat

    My husband was diagnosed with FTD in 2009. I am struggling to find concrete information to help me manage our lives. He has been a competetive athlete all his life & brings a huge sense of competition and ultimatley anger to our life as he refuses to accept any of the limitations on his life as a result of the diagnosis.I would be grateful for any resource information.Pat

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