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?

 

What does the J stand for?

I go to see my Mom in her new place on the weekends. Yesterday, Bryan and I went on our way to his usual speech therapy and social group. We planned a regular visit which is about 20-30 minutes. I typically like to take her for a walk. She doesn’t talk much and mostly I feel like Shecky Greene doing a monologue (if you are too young to know who that is google it) but I try to get her out in the fresh air and talk about what’s going on in our lives. The bad news is she doesn’t remember what I tell her, the good news I can tell her the same things over and over and she doesn’t get bored. Ok, I know that’s really not funny, but humor is my way of coping and at this point, nothing about this is funny so I have to make a joke out of it. We sat down outside at a table and Bryan was looking at his phone. I wear a “J” initial necklace and my mom said to me, “what does the J stand for?”. I said “Jane” and there was nothing but an “oh, ok” from my Mom. I had to look away. I felt that hot feeling come over me, and no not a hot flash, but that feeling like when you are holding back tears and/or vomit. I thought for sure she might say something like “my daughter’s name is Jane or right”. I don’t care for the expression “the new normal” but somehow it’s fitting. We left not too long after and I didn’t cry when we left. I took Bryan to his speech therapy and sat in the car for a few minutes reflecting. How does the brain  retain so much info and then slowly lose it all. Fortunately, for now she still recognizes me when I come to see her. She doesn’t know that I’m her daughter, but she does know she knows me. She is always excited to see us; at least for now. The strange thing in all of this is even though she does not recall details, like my name or how I am related to her, she does know that I belong to her. Last week when I was there we sat on a bench and we flipped the pages of People magazine.She likes to look at the photos and it does help give me some things to say to her. We notice the fashion and the ads. She looked at me and said “we love each other”. I smiled but again my eyes filled with tears; much happier tears. When I leave her and  I’m alone I always break down. She is doing well, but the reality that she is not ever coming home still gets me each time.

When I go now it reminds of a time when Bryan could not really make a sentence or have true conversation. I remember when we were still living in NY and I took him alone out to dinner. His inability to make an exchange, even in a small sentence, was a big trigger for me to know he was not a typical child. Ironically my mom is now very similar to that small Bryan. I guess the best lesson is that it doesn’t matter whether they can answer back as long as they know they are loved.

 

Go Team!

img_0241The similarities between the approach I’ve taken to Alzheimer’s and my mom to Autism and Bryan are becoming more obvious. It’s interesting to me how much one good methodology can be applied to multiple situations. For years I have been saying that you need to harness the collective when it comes to raising a child with autism. As the mom of one of these kids, you need to realize you are the quarterback of an amazing team of people, family, therapists,friends and other parents. These people each have their individual skills, but getting them to work together, in the way that works best for your kid, you need to have a sense of both the near and far. You need to call the plays because at the end of the day, you know your kid better than anyone. Over the years we have adjusted the playbook, taken on some new players, and retired a few for the best interest of team Bryan.

My mom’s placement in the Alzheimer’s home came as a team effort too. We did our research but in the end the recommendation came from a friend whose father had been there. She is a warm and trustworthy person so we knew we were in good hands. The adjustment has been difficult for all of us; however she seems much better so that is what counts. My dad has been going to the support groups that the home sponsors. He is learning to share with others how he is feeling about my mom’s placement and learning  that by hearing other family’s stories and their pain, he will not only feel a sense of comradeship but will also get some relief. There is a safety, a warmth in belonging to a group. Identifying with those similarly situated is incredibly uplifting. I have noticed when I go to see my mom that  I see the same family members and we have started to know each other. We all say hello and have empathy for our mutual plight. Today I got to the home about 10:30 and two of the family members were in the entry way. They were telling me that they had seen my mom and how sweet and cute she is. I told one lady that yesterday her husband said hello to me and gave me a big smile. I walked in having that familiar feeling of community. While I know my mom will not get better, and that is always lurking in my psyche, I do know she is doing as well as can be expected. The boys feel it too. Last weekend I took the boys to see her after we had breakfast with my dad and sister, our new Sunday morning ritual. My dad is terribly lonesome and the early mornings when he is alone in his house typically sting. Usually when we walk out of my mom’s place I get about two steps from the front door and start to sob. I am ok when I see her, but leaving her in a place that is not her home is quite disturbing. The boys had been very affectionate with her that day and I didn’t feel so sad when we walked out. Jason turned to me and said “Mom, you’re doing so much better with Grandma”. Ok well so much for doing better because his tenderness made me sob in a different way. I knew they were impacted by emotions, but had not felt it so directly. We are experiencing this change all together and learning how to support each other, go team!

The hits just keep on coming

IMG_3302I know I have said before that Autism sucks. Well it doesn’t, at least not really or by comparison to Alzheimer’s. Alzheimer’s really sucks and takes suckage to a whole new level.  If you know us and/or if you are a regular reader of my blog (thanks by the way) you know that my mom has Alzheimer’s Disease. I was familiar with this joyful disease when my Nana  had it in the 80s. But, she was my grandmother, didn’t take great care of herself, it was in a different era, blah blah blah. My mom has it and we are now making some changes in our family for survival purposes; her survival and my father’s survival.

My parents never told me important things when I was growing up. There was always a lot of shushing and Yiddish when anything went down. You knew something was up but you only found out much later on what occurred. I do not subscribe to that philosophy. I think age appropriate descriptions of what is going on in your life affords your kids the opportunity to grow and learn and deal. On Friday we were able to place my mom into a Memory Care Facility for Alzheimer’s patients aka nursing home for people with the disease. The decision to do this was ultimately my Dad’s since it is his wife, but as a family we are all mindful of what is best for my mom and my dad. I’m proud of the tenderness and understanding we have shown each other during this time.

So I need to tell my boys what is happening. Bryan and Jason are so close to my folks and they have watched the transformation of their highly engaged grandmother to this tiny childlike woman. I feel not only grief-stricken for my dad, my sister and me and our close extended family,  but for my boys. The difference in her is obvious and while they do not cry, since she is still around, they have mentioned many times the change and ultimate deterioration of her mind. I was a little tentative to share with them; we are still WAY grieving the loss of my aunt. The nights are the worst; it seems that the nights have a way of playing with you. I’m sleeping briefly and then waking up to, did this shit really go down? Is my Aunt gone? Where is my mommy? I always get off topic! Ok so I decided to talk to the boys over dinner on Thursday night. I had mentioned to them previously that Grandpa, Aunt Frannie and I were going to take Grandma to a place to live, but that now was the time and it was going to happen the next day. Jason asked the typical questions, where is the place? will we be able to see her? does she know? how is Grandpa doing? (that last one, I am proud to say, is who Jason is, ever concerned about the casualties). Bryan did his typical Bryan giggle which happens when things are awkward.We talked through what I knew and what I would find out. I was very very emotional that night. I literally could not reel it in. I reassured them I was ok but since I don’t  hide things I know they felt bad. I guess on some level they needed to see that I was grieving.

Later in the evening I went to see Bryan in his room. He was just resting and I was teary. It kind of went like this:

Me: Bryan do you understand what I told you about Grandma?

Bryan: Is Grandma sick?

Me: Yes sort of, her brain is sick.

Bryan: Is Grandma going to die?

Me: Everyone eventually dies, but she is not going to die now. She is just going to live in a place that is safer for her, where they can take care of her.

Bryan: Are Grandma and Grandpa getting divorced? (can you say sucker punch to the gut on that one?)

Me: No honey, it’s just that Grandma has  brain disease and Grandpa can’t take care of her anymore with it. She needs special care.

Bryan: She’s going to the hospital? She’ll be home soon.

Me: No, she’s not coming home.

At that point, I had to stop and tell him we will talk more tomorrow. I literally got so overwhelmed with being overwhelmed I knew it was better to take a pause. He was very tired so he went to sleep.

I, of course, was not able to sleep at all after that. How do you explain to your kid with autism something that while intellectually you know but can’t really explain to yourself? What really kept me awake, however, was that I didn’t have the language I needed to give him. Bryan talks to so many people, calls, FaceTimes, etc and I want him to “get it right” so people won’t be worried or confused about what he is telling them. I could not find the words and truthfully still cannot. I was completely dumbfounded. I know this might sound a bit melodramatic, but I wanted him to understand and to represent appropriately. I guess I am my mother’s daughter because she was so proud and private, I want to make sure she is not embarrassed and can retain some sort of atmospheric dignity. So crazy, she will not know, but I guess I will know and that is the point. A few days have passed and we have been getting some typical reports from the facility. I still do not have the words for Bryan nor for me.