Introductions: Are you caring for someone with dementia?

@IndianaScott . Isolating very true! That is how we are at this point. I cannot understand when my husband tries to speak. Frustrating for him as well. No help ffrom physicians, etc; just patience and praying to be able to figure it out. Just found out that Primary Progressive Aphasia is a rare disease when not caused by stroke. At my wits end. So depressed, getting therapy....and praying for strength to get through each day. Thanks for your thoughts.

@dianajane - it must be heartbreaking not to be able to understand his words. My husband struggles with words, but he usually gets them out in one form or another. Can your husband write his thoughts? Curious whether you and your husband have been through the HABIT program at Mayo ? It's specifically for people with Mild Cognitive Impairment and their partners. It was a godsend to us. My heart is going out to both of you.

@debbraw

@debbraw No he cannot write legible. not sequencing well. ?Mayo program? What is it.

@debbraw what a great idea! Calling 2 friends. I shall try it. Althought husband has aphasia, can't talk well. We shal see.

@debbrawdebbraw Looks interesting. We are in Michigan. I believe he has advanced from MCI to moderate to severe.

Hi @bfbflattenor Please let your granddaughter know I think her new word is wonderful! I’m also happy to hear you feel at home here! I am sorry to hear you’ve been unable to find anyone to talk to with a similar condition.

Can hou tell me what B-PLL stands for?

Strength, courage, and peace

Hi minina.. I am new here and not sure you will get this but my husband was diagnosed with behavioral variant Frontal temporal dementia in 2013 and passed away in 2017. He was 63. I went through SO much partly because he was so young. I am writing this because you can make it through this awful decease. I mananaged to take care of myself and him as well caring for him at home until the last few months.

@debbrawdebbraw Looks interesting. We are in Michigan. I believe he has advanced from MCI to moderate to severe.

I really get what that's like! My husband seems to me to be displaying some very early symptoms of cognitive decline. He's 74 and otherwise very healthy. For awhile I thought I'd just gotten very boring and bad at communication since we could discuss something one day and the next, he didn't even remember we'd discussed it. Then I had one of those stomach-sinking "Aha's" - that's a dementia symptom. So far he can still drive, although on long trips, we take detours when he stops listening to the GPS because it confuses him. So far, no trouble getting around by himself in town, even if it takes a bit longer. He also still takes care of routine maintenance around the house. But odd things like suddenly he is incredibly frustrated by the remote control for the TV -- and it's the same frustration every day -- apparently no learning is being retained. We recently joined some friends for a simple domino game and he just couldn't get it -- the rules were overwhelming and the patterns on the dominoes confusing. He had to stop and count them each time, despite the color-coding. This is a former executive with an MBA. He still maintains he is fine and it's just normal senior moment stuff. He gave in and promised me he would ask his doctor about some testing, but I'm pretty sure that's one of those conversations he won't remember having. And despite the fact that he doesn't want me to, I plan to call his doctor and at least share my observations and concerns. When we are with friends or family, the main thing we notice is that his contributions to the conversation are not of the same quality we have experienced in the past. He's still enjoyable to be around for the most part (except when he is having one of his episodes of being aggressively frustrated by things he used to understand but now has trouble figuring out). I'm so glad we were able to get lots of wonderful traveling in before we became caretakers for Mom 7 years ago. Our hope was, after her eventual passing, we would enjoy the rest of our retirement together traveling and volunteering and such. It's discouraging to consider the possibility that for me it will just be an extended gig of caregiving instead. But as I said, we had a good run and a good life and some great trips. No use fighting this hateful disease--but I am sure looking forward to the kind of progress with dementia treatment that we've seen with cancer in the past few years! Glad there's a place to share about it with people who don't pat your hand or roll their eyes, but actually share frustrations, ideas, and tips!