It just doesn’t matter

brokenheartAlzheimer’s disease is a thief. It robs you of your loved one, it robs them of their lives and it robs emotions. I teeter between this very intense reality of watching my mom slip away into just a body, just a tiny version of her former being, to complete denial this is happening in my life; some sort of self protective armor. The problem, to way oversimplify things is, that I do not live like an ostrich so the bury your head in the sand approach not only doesn’t work in reality but has never worked for me. I am a talker, a sharer and an open book. So if I really need to express what I’m feeling now as some form of catharsis, you will need to bear with me.  I go to see my mom every weekend. At first there had been some conversation, little snippets about things in a magazine we looked at it or about the boys and school. Over time there has been less and less and I don’t ask any questions. I learned when Bryan was little that when you ask someone with a language deficit too many questions, it raises their stress level so high that even if they could answer, they now would not. For the last few months I essentially have talked or just held her hand or just took her for a walk. Sometimes we would sing songs because the remarkable brain can still somehow conjure up words aligned with a tune.

In the last few weeks there has been a noticeable decline. Although when I say “hi mom” she still perks up, but not sure if it’s just because I say that or she has recognition. I will say every now and then we still get a somewhat knowing glance. It reminds me so much of the times when I connect with Bryan, particularly when he was small and just the eye contact where the gaze is held for more than a few seconds, communicating an entire paragraph’s worth of info. Over the last few weeks there have been some disturbing physical manifestations going on. No, not the top of mind things like incontinence, we are way down that road already. I’m talking about finding her with a bruised lip or face, her hand swollen, a few scratches on her arm.  I can imagine your thoughts. What type of place did you stick her in? It’s not that, it’s a fabulous place with great care. She has extremely paper-thin skin and has always bruised easily. Her balance is not great so she can slip easily. She apparently has been somewhat defiant with the folks that work there when changing clothes. When the boys are with me on the weekends they go with me to see her. I am proud to say they want to see her and do not shy away from this or make me drag them. Due to some scheduling issues Jason had not gone with me for a few weeks. Bryan and I alone went on Saturday and she had two major bruises and I could see the worry on Bryan’s face. We now only stay about 15 minutes. There were stains on her shirt and she seemed disoriented. There is virtually no conversation and often she does not say a word. She is having more trouble walking, she sort of shuffles,  so we take very very short walks. When we left I was teary and I hugged Bryan and when I looked at him his eyes were filled with tears. “you’re sad because Grandma has a purple face” (clearly referring to the bruise by her eye). I have never taken a bullet, but I can imagine what it must feel like at this point.

Yesterday Jason wanted to go. I gave him detailed prep because I didn’t want to see the shock on his face that I saw on Bryan’s the day before. We found her sitting outside in the sun. Jason did a great job of holding it together and hugging and kissing her. He sat next to her and just held her hand. She looked at him and said “I love you”. He has this tender way of dealing with people and I think she just got it. She didn’t know his name or anything about him but her heart reached out to him. I could see he was happy. She seemed sleepy and detached after that. We left and when we got outside Jason completely lost it. He literally sobbed uncontrollably and of course then I started. Bryan said “you are heart crying because of grandma”.  The rest of the day we kept busy and focused on other things.

My dad really does the heavy emotional lifting. He lost his spouse, best friend and partner in crime. He and my mom have been together since college and they had that kind of relationship we all long for; where the best times you  have are just when it’s the two of you alone. He has had a tough year both emotionally and physically. He called me late afternoon to tell me he found out some more info on things going on with my mom and I literally could hear the pain in his voice. I tried to reassure him that we would get her the help she needed but we cried a little together about how she is declining  and changing and how horrible this is for all of us. That’s the difference between Autism and Alzheimer’s. Autism always presents hope. For Bryan, there is always something new and exciting just around the corner.

After I hung up Bryan came over and gave me a hug. He gets so upset when I’m upset. He is so connected to me emotionally that I wish I could have prevented the tears, for his benefit, but I couldn’t. Jason heard all of this and came downstairs and we had a group hug and kiss and  all just cried. What becomes of the broken hearted?

 

This post, brought to you by the letter A.

groverSo many significant things in my life begin with the letter A. The obvious, autism, plus my overwhelming love for my favorite dogs, australian shepherds. I do have a somewhat new “A” in my life, a rather unwelcome one, but one that I knew would probably be there: Alzheimer’s. My mom has it, my grandmother had it. You may think I’m nuts, which if you are reading this blog on a regular basis this may be a foregone conclusion, but I think that autism and alzheimer’s are diametrically opposed, yet fundamentally, there are so many similarities, I have to share my thoughts. They are not the same in the most basic way, with autism, there is always the hope, chance, drive for improvement, goal reaching, achievement. With Alzheimer’s there is only the ability to slow down, contain, hold off the inevitable end. So how are they alike you might be thinking? They are invisible disorders/diseases. If you were to see my beautiful mom, even yesterday, she looked as lovely as ever. Hair and make up perfect, all of her clothes matching, especially shoes and purse. ( My dad picked everything out for her, in case you are wondering if she really has the big A). If we were to walk into a restaurant or store, you would think to yourself, what a handsome couple. Bryan looks like a big beefy teenager, no visible traces of anything amiss. But if you tried to have a conversation with my mom, you would be stumped, flabbergasted and sad. I am trying very hard to process the slipping away of my sweet mom, but when she is right there in front of you, it’s bizarre to say the least. I am not dealing with it well, because on some level I am not dealing with it at all. Does this make sense? Not really, but what I mean to say is, I have not really explored the loss that is right in front of me. It is so like autism here, yet not.

I say autism and Alzheimer’s are diametrically opposed. I say that because one is getting better and one is not. One is coming alive, learning growing and the other is retreating, shrinking. Yet, they are the same. Here is someone you love more than words can say and you cannot have a real conversation with them. You can share your thoughts, they understand them, but they do not process like you or I do. With my mom, the new conversations are short, fleeting. With Bryan he remembers everything and can retrieve it at any time. Oh the goddamned irony!

My Dad is the ever present caretaker and I have not been as involved as I should be or would like to be. I know I have my life and my responsibilities but there is never enough time in a day to deal with everything. On some level it is almost too painful. My Dad is now realizing first hand just how hard it is to be with someone you love and yet cannot reach them in the way you want. He is realizing just how tough it is to be patient when someone you love is not behaving or reacting in the way the typical world does. While very very difficult for him to handle, we have bonded over the insight he now has in my dealing with autism. So profound if you are me. So profound if you are Bryan. Most people that see Bryan or know us, see a small glimpse of what is like to be with a kid on the spectrum. But to get it, you have to live it. I wish he didn’t have to do this, my Dad, but supporting him through this, is helping me deal with my mom.

Another A, always hanging out, is anxiety. Yesterday Bryan was very upset with me because our plans had changed suddenly. He said, “I have anxiety”. So while I’m not very fond of that A, I was so happy that Bryan could identify what he was feeling and tell me.  At the end of everything, the most important A of all is acceptance. We accept our autism and our alzheimer’s and love our family as much as we can.