My family has dementia.

Wait.  What?  The family?

My husband is the only one who's been diagnosed.  Major Neurocognitive Disorder with Behavioral Disturbances.  He's very "high functioning" so many people who don't know him don't realize he's ill, but he is.  He's a great guy.  He's very smart, funny, pleasant, quite charming.  We've been married for almost 30 years.  We promised ourselves we'd never stop being busy, being productive, enjoying life.  Things are different now.

But the WHOLE family?!!

Yes. The WHOLE family.

If you live with someone who has dementia or brain injury you either understand or you're thinking "it sure feels like it sometimes".   Depending on how far progressed the dementia is or how severe the brain injury…thats what you have too.

When that was first said to me,  I was startled, then relieved…all in the space of about 5 seconds.  This life I'm living is damaged and it feels damaged.  It took a while to really sink in... I have dementia too.  I do.  My life is about dementia, most everything I do, how I cook, what I cook, when we eat, where we sit when we eat, when appointments are made, who drives, where we put our clothes, which snacks are left on the kitchen counter so they're easy to find, who we socialize with or we don't, where we live, how we sleep, where we sleep, what we watch on TV, how loud the volume is on the radio…..and on…and on….and on.  

My brain works well (some days it doesn't feel like it is at all) but it's painfully true, I have dementia.  Not medically diagnosable, but I have dementia.

But the whole family?  Everyone?

Yes.  Our children are grown, the youngest graduated from college two years ago.  It affected them, it still does.  Dementia decides when we see each other and for how long, how we celebrate holidays and who is there, do we stop for coffee or rush home, always measuring the time so it's the right time, not too much time, measuring what they say and listening to disjointed stories that might or might not fit the conversation.  They have a mother who also follows all the schedules, uses all the "tricks" and no longer "does the things she used to".  Yes, their father and their mother have dementia.  

I've done a lot of advocating for families with brain injury and dementia even though I have no education or training in medical matters.  For a "regular" person I have learned a lot over the last few years, on my own but mostly from others who are also in families who have dementia.

Why blog?  It's kind of a pain from what others tell me.  I don't have much free time, sometimes not much "brain space".   The dementia isolates my husband and I.  Sometimes alone is easier for both of us.  Sometimes alone makes me feel things I've never felt before…sad in a lonely way, or it that lonely in a sad way?  I'm not sure…and that's what's worrying me.  How do I feel?  I don't know. Maybe if my words go "out into the universe" I'll hear them when they bounce back like they're new and I'll hear them in a way I can't when they're still inside my head.  I refuse to let this journey be any worse than it has to be….until it just is…worse.

Not sure where to start….I guess am right here.  As important as anything I hope you'll comment.  I think all of us need to hear our stories "out loud".  Once I get the hang of blogging, I'd like to figure out how to post some of your stories and maybe we can all have the small release of all those feelings and make having dementia just a little bit easier.