My mother has Lewy Body Dementia

 I've been writing less the past few years, and with my mother's permission, I'm going to write a bit about one of the reasons for that.  She was diagnosed about a year ago with Lewy Body Dementia.  It's a new challenge for our family, but in some ways, it feels familiar.  Janey's autism has prepared us in some ways for this new phase of our life.  

I'm no expert on Lewy Body Dementia (LBD, I'll call it for a shortcut), but here's a few things I've learned.  It's the 2nd most common cause of dementia.  It's related to Parkinson's Disease often---my mother was first diagnosed with Parkinson's Disease Dementia, and she has some features of Parkinson's.  It affects people differently than Alzheimer's Disease in some ways.  For one thing, it's much more variable.  Some days, she seems barely affected, other days, much more so.  It affects speech and memory less than Alzheimers, but affects other areas much more.  For example, she cannot understand time at all any more.  She often thinks it's day when it's night, or vice versa, and something like telling her we will be there to visit tomorrow is beyond what she can understand.  Anything that takes any steps at all to do, like cooking or cleaning or even the things she was always the best at, like reading or playing the piano, are near impossible for her.  And she hallucinates a lot---one of the hallmarks of LBD.  Almost every night, the house is filled with people that only she can see.  She often makes my father whisper, as to not bother the visitors.  She is very, very anxious.  A lot of this is focused on their cat---worrying where the cat is, not wanting to leave the house even for a minute as to not upset the cat, etc.  There's more, but that gives an idea what is going on.

As she starts to require more care, I'm often torn in two.  I can't do all I wish I could do for her, because of course Janey needs me too.  Tony is a wonderful caregiver for Janey, but he can't do it alone.  We are visiting Maine much more often, just to check on things and to give my father a little break, and I call them several times a day, but even if their needs become greater, I'm not going to be able to do as much as I am sure many people do for their parents in similar situations.

There are some parts of the dementia that are easier than they would have been if I hadn't been Janey's mother all these years.  Cognitive impairments are not hard for me to see.  I don't mind the days my mother has trouble talking, or when she gets confused.  I don't mind repeating things, or explaining things carefully.  She is able to tend to self-care things mostly still, but if she stops being able to, that is also something I have experience with.

I think the part that is harder for me, though, is seeing her regression.  That can bring back the hardest thing I've ever experienced---seeing Janey lose the skills she had before she was 3 and never get them back.  My mother was accepted to Harvard (Radcliffe, then, although she chose to go elsewhere).  She was a professional musician, and she read day and night, ran a successful business for years, had the energy of ten people.  And that is all ebbing away.  It is heartbreaking to see, in many ways, as it was heartbreaking to watch Janey lose her language as a three year old.

To say I feel a lot of stress lately is putting it very mildly.  A pet peeve is reading articles about what you can do to avoid dementia later in life---something I want to do, obviously.  They all talk about avoiding stress as being so important, as well as getting enough sleep---as if those are thing that are within my control as a parent of an autistic adult.  

Something I think so often (as Tony can vouch for---I think he's sick of hearing it), something all this has taught me---is to enjoy the now whenever possible.  When Janey is having a good day, when my mother is having a good day, whenever I am able, I do things I like and don't feel guilty doing so.  If we have a choice between planning for some big goal in the future or doing something to live in the now, I pick the now.  I am so very aware that the now is all that is guaranteed.  

I will write more about Janey the next time I write.  She will be 21 in less than two months.  We are approaching the "falling off the cliff" age of 22.  So there is a lot to think about there.  But for now, I'll leave you with this picture of Janey from our trip a few days ago to Maine, to see my parents.  I love being in Maine in the summer, and sharing what that is like with Tony and Janey.  Thinking as always of all of you.

What did and didn't bother me about what RFK Jr. said

 I reacted strongly when I read about what RFK Jr. had said about autism.  If you have any awareness of the autism world, you probably already know, but here's some of what he said...

"Autism destroys families, and more importantly, it destroys our greatest resource, which is our children. These are children who should not be suffering like this," he said. “These are kids who will never pay taxes. They'll never hold a job. They'll never play baseball. They'll never write a poem. They'll never go out on a date. Many of them will never use a toilet unassisted."

I reacted strongly.  I was most bothered by him saying that autism destroys families.  That hit me hard.  I think what bothered me most about that was that felt like he was putting blame on people like Janey---like he was saying that someone like her destroys a family.  I don't think he meant that, totally, but it made me angry and upset.  I was also upset by his choice of examples of the things people like Janey will never do---holding a job, paying taxes, playing baseball, going on a date.  It felt like he was saying that she and others like her aren't holding up their part of society---that she doesn't contribute anything valuable to the world.  Again, that might not be what he meant, totally, but it hit me that way.

I've seen a lot of people in the autism world saying that they are glad that people are speaking out about severe autism, profound autism, the kind of autism that isn't glorified on TV shows, the kind that can't be self-diagnosed because those with it aren't able to express concepts like that, the kind that isn't simply a different way to seeing the world, but rather a life-long disability. And those people have a point, a good point.  It's a very telling thing that Janey wasn't upset by what was said.  That is because she has no idea what was said.  She can't read, she doesn't know who RFK Jr. is, she doesn't know what autism is.  And so the hurt at his statements wasn't something she felt.  And yes, I am glad that voices of those caring for someone with severe autism aren't being silenced, as I think they were for quite a few years.

But the vital part missing from what he said was the humanity, the value, the innate personhood of someone like Janey.  If all you knew about severe autism was what he said, you would not picture someone like Janey, or like so, so many of the people I've gotten to know through this blog, either in person or virtually.  You would not picture my beautiful, fascinating girl.  You would picture a burden, a sad, suffering burden.  I don't think what he said was a call to provide more help to the people like Janey.  I don't think he's proposing funds for more housing, more respite, more recreational opportunities.  I think he's mostly interested in PREVENTING people like Janey from coming into being, not in helping people like Janey who are here.  

I feel like there is a balance that can exist in talking about severe autism.  Without really intending to, it's what I've been trying to do for the last 17 years in writing this blog.  I want to be honest---completely honest---about the challenges that having a child like Janey can pose.  I have tried very hard to be honest about the tough things---and there have been plenty of tough things.  I have done that for a few reasons.  One is because I felt often that the truth of autism parenting was something that wasn't being talked about, that we parents were being told directly or indirectly that being honest about how hard it could be was wrong.  I wanted to let others know they weren't the only one---that there were other families like theirs.  And I needed to hear from others for my own sanity, so I knew that I wasn't alone.  I also wanted to be honest so that hopefully those in the position to help with the kind of things we desperately need help with would understand our needs.  We need respite.  We need programs for when our loved one with severe autism turn 22 and age out of school.  We need kindness.  We need medical care that understands severe autism.  

However, it was and is extremely important to me to also show the joy Janey brings to us as a family, and the joy that others like her bring their own families.  I want to show how cool Janey is, how much fun she can be, what a important and valued part of our lives she is.  I love sharing stories about Janey, how she uses her limited speech in amazing ways to get across her point, how her smile can melt hearts, how her love of music transcends her limitations.  Every person with autism has value, has importance, has a place in the world.  

There is a horrible thing I often think about.  It's that one of the first groups of people that Hilter killed was children with severe disabilities, and that he did so saying that they were a burden on their families.  I am in no way suggesting that is anything that was or will be done here and now.  But I don't want to go even a tiny step in that direction---and portraying those with severe autism as non-taxpaying family destroyers---well, I can think of many, many ways to talk about severe autism that are both honest and loving, ways that illustrate what we need as resources and help while also showing why our children are worthy of all the love and respect that all of us, taxpaying or job holding or poetry writing or baseball playing or not deserve.

I think the general public is capable of understanding that it can be very, very hard at times to be a person with or a parent to someone with severe special needs, but that there is also joy, and love, and humanity there. I don't think we have to settle for a portrait of those like Janey that only shows the burden.  I wish RFK Jr. could meet Janey. I wish he could meet all of your girls and women and boys and men like her, and that he would put his passion and influence and power into giving families like ours the help we so need, not because our families are being "destroyed" but because our loved ones with severe autism deserve a life with all the love, dignity and happiness in the world.

Actually writing a blog post...

 I've never gone this long before between blog posts.  The longer I go, the harder it feels to get going, so I thought tonight I'd just write, even though my thoughts aren't that organized.

Why has it been so hard to write?  It's hard to say.  Janey has been herself---which is to say, up and down, here and there, but not really that much different than in the past.  We had a few very, very rough patches with tons and tons of crying and screaming, but also some wonderful patches with lots of happiness.  We've also had times of her being awake for nights in a row,  and other times of lots and lots of sleepiness.  As the years go by, the most consistent thing with Janey is her lack of consistency.  She is very, very cyclical, and although it can be hard to see in the middle of the tougher cycles, it's helpful for us to remember that even the worst times get better after a while.

I think part of what is making it hard to write is that the closer Janey gets to 22, which is when she will no longer be in school, the more I am terrified of the future.  From what I can see from others in our state, it's very hard to get anyone into programs.  We are aiming for a good day program, but even without looking for a residential placement, I hear so often of others getting nothing---nothing at all.  From how Janey does during vacations and even to some extent weekends...well, that will not be good.  

I am not very political, but I have to say the current scene here in the US doesn't seem to be one that cares much about people like Janey.  I worry that the things that make us able to get from day to day will disappear---the social security that allows us to afford what Janey needs, the structures that will at least give us a shot at an adult program for her.  And I fear very much that those younger than Janey will not have a public education like she did.  We have had so many wonderful teachers, therapists, aides...so much love and caring from extraordinary educators.  I despair when I think of the possibility of that not being the case of others like Janey.

And my own ageing---that is scary.  I will be 60 next year.  It seems impossible to believe. I don't mind getting older, but I wake often in the night in terror thinking of life for Janey when Tony and I are gone.  She has her brothers, and I know they will do all they can for her, but I think what scares me most is that she won't understand some day when we are gone.  We lost Tony's brother last month, and although of course we tried to explain this to her, I know she has no understanding of death.  

There are so many times lately when it all just gets to me.  Sometimes I let myself fall into feeling the unfairness of it all---a useless feeling but one I will admit to. Why is Janey autistic?  Why didn't she progress much at all after her horrible regression at three?  Why are things still often so hard with her?  Why does it seem impossible to completely toilet train her, to help her speech get better, to keep her from screaming during the tough spells, to get her to sleep during the awake spells?  What are we doing or not doing?  I feel like I used to be better at staying positive.  

So...maybe this is why I have had such a hard time writing lately...fear, discouragement, tiredness, worry.  

However, through it all, there is luck and there is love.  I am so lucky to have the husband I do, the most wonderful father Janey could have ever had the luck to have.  I am lucky to have the friends I do, including the ones I have made through this blog.  I am lucky to have my amazing sons.  And Janey, I am so lucky to have you as a daughter---my beautiful, mysterious, fascinating, frustrating, amazing daughter.  The fear I have is because you deserve everything.  You deserve a world that values you, that will protect you, that will invest in caring for you, and for all others living lives like yours.  I will work toward that world until my days are through.