I'm Great!

So it's been awhile since I have written- 6 months or so which is probably the longest I have gone since this journey started. I had to take a break I think yet I never really took one if that makes sense. Life keeps moving and the days wiz by so I never really stopped I just didn't have the thoughts to put in my head until now. They swirl around in there and then I move on to something else and days turn into weeks and weeks turn into months. That's life, right?

Lately I feel like if I stop to think about the last 18 months I may actually have a nervous breakdown. I am not sure what that's like or what it would feel like but I am pretty sure that would be it. If I allow myself to cry, I am certain I won't be able to stop so I just keep moving. When I feel the tears come I swallow hard and I keep swallowing until they're gone and I move to the next thing.  

That's life, right?! We just always move from thing to thing. Never really giving anything our full attention? Or maybe that's just what I do. It's how I function - never stopping. Never sitting and although my husband accuses me of "over thinking" I don't really think that I think nearly as much as I should because I'd end up trapped in the thoughts.

Let's re-cap - In 18 months, we (everyone out there) have survived a pandemic, social distancing, "remote learning" which could be a whole other blog for most of us, a toilet paper shortage (what!?!), car shortages (no chips), prices increasing (insanely), wearing masks, no sports, then masked sports,  vaccines and all the controversy surrounding that, back to school, back to normalcy(ish), getting a common cold and everyone thinking that you are dying and its an automatic Covid test, so so much more and let's just all toss in there our own personal crap because we all have it. Not just me.

Leading up to last January was nothing short of Hell. All my personal crap, midst pandemic! Seriously what else could go wrong?  Depends on what you consider wrong I guess.  We finally had her moved and settled and seemingly doing well.  It's tough to put your loved one in a home no matter how good it is.  I don't believe that any of us look forward to the day as children, spouses or even when we come to terms with ourselves that it's "time" to actually doing it.  You know that no matter the greatness of the facility, it's not "your home" and you aren't caring for or being cared for the way you would be with your family. Simple.  It's never going to be good enough.

Once she was settled, things seemed to be going ok. We all adjusted to our new normal.  Dad was doing great. Mom was doing "ok." We were still getting calls that she was having panic attacks and that they were worried. Nothing a few med adjustments couldn't help with. We visit weekly and bring her things and talk with her and meet her friends. All good, right!?

Well, sort of! I left off just before Easter weekend in my last "note" it's been all downhill from there!  I went to visit her that weekend of course and was essentially assaulted by one of her new "friends." She was screaming at me, telling me I was a horrible daughter for putting her there. Did I know that they were "locked" there and could never leave? Why would I do this to her if I was a good daughter and really loved my mother!? Ummmm....deep breaths!! I was sweet as could be and just said, "I love her very much. That's why I want her to be safe! She wasn't safe before and now she is" The aides were trying to get her away from me and my mom which made her more indignant. They told me this woman was a "problem" (ya think?!) and that she had actually physically assaulted some of the aides before! Seriously!?? And you are letting my mom go into this woman's apartment unattended!? WHAT THE HELL IS HAPPENING!?!?! I am having another out of body experience right now, aren't I!? I remained calm and smiled and was sweet as could be until I got to my car where I proceeded to cry for 15 mins before I could even drive home. What the hell just happened!? I told my dad and sister of course and they were beyond horrified.  The next day was Easter and as my Dad left to go see her, I called the facility to say in no uncertain terms was this woman to be anywhere near my dad or mom when he got there! There were many calls, emails etc after that. It was definitely handled but damn, that was a nightmare!

Things kept moving along and by all accounts were more "normal" until we got the call in April that Dad's cancer was spreading. Now it's in his lungs too! Mouth and tongue are good but esophagus and lungs not so much.  Out of remission and no longer "curable" it's all palliative now -Seriously, what!? I called the doctor to ask what exactly that means a few days after hearing this. He explained it, and none of it's good. We were given time lines which we really don't discuss (in fact, have never!) but it's there in the back of our minds always knowing that this will be how he goes out.  He is a fighter - damn he is brave. Fighting this thing until it takes his last breath! The most he has ever eluded to with knowing this will be it; he has always told my boys he will live to be 90. One day not too long after this news at my oldest son's baseball game he said "I need you and your sister to come so we can meet to go over everything" I said "what everything?" Him "well my affairs" I said "I thought everything was all set - in that ginormous binder we have - are you actually a millionaire and you are going to beg us to not fight over all the money!" Him  as he laughed "yes, well and some other things Les, 90 is coming a lot sooner than any of us realize" and with that I nodded, looked away, wiped the tears that I blamed on the pollen and walked away to take photos so I wouldn't pass out or burst out crying right at the field.

In June, Father's Day weekend to be precise, we had "the death talk" - My family is truly insane and has the most warped sense of humor and that's how we get through these things! He had a list - a long list - I, of course jumped ahead and started asking questions - They tried to reel me back. Everything is labeled in their house with who gets what -like LEGIT labels on the back. My sister confirmed this as she saw a label on a teapot I believe!! I can't stop laughing when I think about it. I hope he doesn't give her the blue cup because that's it, the gloves are coming off!  I know that death brings out the ugly and the fights but truly, they have nothing that either of us want with the exception of a couple of things that we had long since established that when they die I want this or that and we both wanted different things so we're cool!   Mom's jewelry has already been dispersed because she certainly wasn't bringing it with her so even that is all set.

He has requests.  We are trying to meet all of them. He asked if there were money left when he is gone that he get a bench in Newburyport where we grew up. T called me that night and said "we are doing it now!" and with that the plans were in place! It happened quickly because within 2 weeks, right before his 76th birthday he had a huge surprise. He got to live to see his bench.  What an amazing night it was. She truly out did herself with the planning. It was one for the memory books for sure.

Throughout the summer he took my youngest on adventures just about every week. Checking off some of his simple bucket list items. One of them was Battleship Cove in Fall River. He'd never been. He wanted to go to the Lexington Green so one day he drove himself there with a little picnic and enjoyed a nice day to himself. As fall approached we took him to Nantucket and then just last weekend he got a helicopter ride. As the song says "Live Like You are Dying" I'll be damned, we are trying.  

Mom is still plugging along. No real issues and the panic attacks seem to be under control but no longer recognizes him at all. It's hard. He is older and in her mind, she is 30 or so- she sees our selfies and asks "who is that old lady?" On top of being older because he is sick, he doesn't really look like himself and certainly not his 30 year old self.  He hates going but does so because that's what you do. I told him to stop. She truly doesn't know you anymore. I've got this. He goes less and less but still goes. It's so hard - what do you do!? Their 52nd Anniversary is Tuesday - she will have no clue that it's October 12th and when he comes to see her (if he does) she won't even know that this is the man she has spent 52 years with. It sucks - it all just sucks!!! He asked us during our "death talk" what we would do when he passes. Will we tell her? I said "No, I don't think so" and he nodded and said he agreed. Imagine spending 52 years with someone and not even realizing or knowing they are gone.

He asked that when he dies everyone wear bright colors - preferably purple for Alzheimer's in honor of my mom and our family's fight! He wants no flowers just donations to go to Alzheimer's and he asked that when we turn 50 - I immediately took this as a dig on my upcoming 50th (LOL) to please consider joining the Hope Study. It's a study that family members with Alzheimer's can join to track our progress as we get older. It studies genetic links etc. I called one month before hitting the big number to volunteer. I think my family is at the point that we will do ANYTHING to help cure this disease. It's horrible and beyond comprehension sometimes. I am still waiting to see if I will be accepted into the study but I have at least tossed my hat into the ring. Ah 50...AARP and Brain Studies! How fun!

When she sees me, she knows I am someone she loves - sometimes I am her daughter and other times her sister but she always smiles and is loving towards me. She absolutely LOVES when I bring one of the boys with me. She giggles and giggles and goes on and on about how tall and handsome they are. When the other ladies try to talk to them she is very possessive and holds them tight and says "They are hear to see ME or they are MINE" I laugh every time as the boys give me the "Help Me" stare!  They are still so good with her and try to rotate who comes with me to see her. She has gained weight since being there - A Lot of weight! She needed all new clothes. Every time I go I bring something new.  She tries it all on and it's a fashion show. She still loves her clothes and her style!! It breaks my heart to leave her sometimes but other times she kicks me out to be with her friends so it makes it easier to leave. I try to plan visits around meal times or activities so I can be in/out and not disrupt. I've gone at times and not seen her at all. She won't leave her activity and I just restock her apartment and leave. Why disrupt unnecessarily if she is happy doing what she is doing.

Yesterday I went and she was sweet and happy to see me. Yesterday was a day that I needed my mom. I wanted her back. I wanted to walk in there and have her know just by looking at me that I needed a hug and that I was going to cry for a long long time and she was going to just give me advice or listen or cry with me like she used to. Instead, she walked down the hall with me and said "how are you honey?" I swallowed hard, really hard pushed the tears away and said "I am great mom! How are you doing" and that was that. 

I'm Great!