Monday, December 31, 2012

to friends and family of people with dementia

You probably wouldn't be visiting this site if you weren't in some way touched by someone with dementia.  

Perhaps it is your parent who has this illness, maybe it's a friend.  Or instead it might be a sibling, a neighbor, a spouse.  Perhaps the person  you care about is related to or acting as a caregiver for the one with dementia.  

You wonder how you can be helpful.  And at the same time you are frightened by the spectre of a mind's parting ways with reality, with memory, with the ability to function through daily activities.  Maybe you have some ideas about what a person with dementia looks like--possibly from a visit to a nursing home, a hospital, perhaps from a movie or a book.  

If you are being really introspective and honest, the idea of dementia scares you silly.

But here's the thing.  It's an incredibly lonely, frustrating and sad experience we are having--the one with dementia and the spouse/caregiver as well.  The more pronounced the dementia gets, the more lonely, frustrating and sad it becomes.

I imagine you are saying to yourself that you don't know what to say, or what to do.  If, therefore, you say nothing, or do nothing, you are amplifying our loneliness, our sadness.  We do not expect you to have some cosmic thing to tell us about our situation.  We know full well there is no such thing to say.  We do not imagine that there is anything earth-shattering that you might do to 'fix' things.  (Seasoned caregivers have long ago given up the notion of the 'fix'.  There is no 'fix' to this illness.)  

Mostly we are just trying to get through another day.

If you want to help but don't know what to say, or what to do, just show up somehow.  Come by and keep one of us (or both of us) company.  Offer some respite for the caregiver, by keeping the other company for a bit.  Tell us some jokes.  Talk about old times.  Bring brownies,  or soup to share for lunch together.  Something from your garden.  Bring a photo from "once upon a time when", and reminisce.  Listen to stories, even if they are repeats.

Dementia isn't catching, and it is not particularly scary to witness.  Mostly, it just requires a slower, simpler pace.  (That is, if you are not counting the loss, but you don't need to talk to us about our loss.)  We want diversion.  We want connection to those with whom we have shared love and good times in our better days.  

Try to avoid filling the time with tales of your last trip, cultural adventure, romantic date, new house or couple's project.  We are happy for your freedom and your vivid connection to life.  We had great plans for our time together at this stage of life, and we grieve silently every day for those dashed plans. Comparison of fortunes is hard to avoid--particularly  for the caregiver, whose once open-to-anything life is likely to be reduced to the mundane activities of looking after a person with significant limitations.  

Try not to tell the caregiver that you don't see that anything is "that wrong" with X.   I know you mean well, but to us it feels like you don't believe us when we say we find things difficult.  It feels as if you might be suggesting that your experience trumps ours, and you imagine we are somehow exaggerating.  You may see an unexpectedly well-functioning person in your brief encounter.  Heaven knows she/he is working overtime to rise to the occasion of your visit.  What you won't see is how much it takes out of him/her when you leave--how much sleep is needed to recover from the effort.  But come anyway.  It is worth the effort expended to be connected for a time to people we love and miss.

If you tell the caregiver to let you know if there is anything you can do to help, do not be surprised if she/he never asks.  It is hard for us to ask for help--it's one of the top five challenges of the caregiver, really.  Put yourself  in our shoes.  You probably would have difficulty asking, too.  Instead, take action.  Call up and say you want to come over, or want to take X out for ice cream, or lunch.  Bring over a movie to watch together (not a complicated one).  Tell us you are going to the store and you wonder if there is any odd thing you can pick up for us for tonight.  Better still,  tell the caregiver you are going to ____ in a week and wonder if she/he can arrange to get some coverage so you can go together.  Often it is the caregiver who is starving for normal experiences.  Dementia narrows one's experiences drastically, a fact that is particularly hard for the caregiver. 

Finally, it is fine if you ask, "how is X doing?" and talk about how sad it is that his/her life has become so limited.  Please, however, be mindful that this illness limits both people in the couple, provides deep sadness and loss to the caregiver/spouse as well.   It means so much to have this acknowledged every once in awhile.  It makes us caregivers feel visible.  Human.  Understood.

Don't ever imagine you have nothing to give.

Connection.  Presence.  Showing up.  Laughter.  Diversion.  Friendship.  If you have been close to either one of us, this is what our time together 
consisted of before dementia.  See, you do know how to do this.  By heart.