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.