THE LONG GOODBYE
I posted my last blog on January 7th but it had been written days before she passed. I just never had time to post it because I had to rush up to Newburyport to be with her and my sister. She actually passed away on the 6th of January. She was already emotionally gone long before that date. It's hard to put into words what that last week, or really last few days were like. It's so surreal. If you have ever had the privilege of watching, helping someone pass on then you know what I mean. I went to visit her on Monday the 2nd and said "goodbye" of sorts not knowing how much time she had left. I think we assumed she had a week or two not only days. I knew I'd be back as it got close but what if she just "passed" quickly and quietly. I had to say goodbye in case I didn't make it back.
Alzheimer's is truly the long goodbye. I have talked about this for years. We said goodbye in some ways every day over the last 7-8 years but especially over the last 3. It got harder and sadder every day. Just when we thought it wouldn't get worse, it did. You prepare for it. You think you know what's coming but you never really do until it comes and then it takes your breath away at times. You live in the moments, the memories of the way life used to be.
I lost my mom, my best friend years before January 6, 2023. I became the parent; caring for her, helping her, nurturing her, loving her. I know she always loved us more than anything in the world and her grandbabies were loved at a whole other level. They would visit us from Ohio and as happy to see me/T as she was it was nothing compared to the smile on her face when she saw those grandbabies run out to the car to greet them! She would play with them all day, in ways I don't ever remember her playing with us! She was always a proud mom but a proud grandmother was an understatement!! I used to have to reel her in a bit when talking about them. I would have to remind her that they were not in fact the second coming! They were not perfect, they had their flaws just like every other kid and she would say "I don't know who you are talking about because my grandchildren are perfect, just as I said!" LOL - Oh Mom!
Alzheimer's is both physical and mental. You lose the mental piece which is really the hardest. The person you knew and loved is gone. You say goodbye to that person slowly, over time. You have to constantly remind yourself that this is not your loved one, just a mere shell of them but that you still need to love and care for this person you no longer know. They lose the ability to remember obviously. That means EVERYTHING. They ultimately forget things you don't even think about and take for granted daily. They slowly forget general life skills, like which utensil to use while eating, to where to put things away - we found the butter dish in the linen closet and the can opener in the fridge to name a few! You forget your most precious memories, the ones you swear you will remember for the rest of your life and you will "never ever forget!" think about how often you say that "I will never forget...." and those that you do remember become distorted, so distorted that when you hear them tell the story you laugh out loud! You correct the story, even though you shouldn't! You forget your children / grandchildren (the reason you breathe!), your spouse (of over 52 yrs), your friends and loved ones. You forget how to talk! Imagine something we do every day all day long most of us, suddenly forgotten! You forget to and how to eat. That's ultimately how you die. Think about that. You starve yourself to death because you forget how to eat! I often joke that I "wish" I could forget how to eat for a few weeks!! But do I really? There is nothing pretty about Alzheimer's - Nothing!
It's torture to watch. They say it's harder on the caregivers than the patient with Alzheimer's but I often wonder, is that really true? I think at times yes but then I also think, imagine being trapped in your head and body and not remembering or knowing how to communicate how terrified you are. I know there were moments when she was terrified and I couldn't help her. I tried to calmly walk her through things and calm her down. It helped but I always had to leave at some point. My sister, same thing - was she terrified all over again when we left? The things we think of could drive us nuts.
I remember the call, crystal clear! T called me on Wednesday, January 4th and said "Get back here - It's time! They said she won't make it until the end of the week!" I was in the middle of a teams call. I had turned off the camera and muted myself to take her call. I immediately msgd my boss that I was not coming back to the call and that I was on my way to my mom. He of course told me to take whatever time I needed!! I packed my things and hopped in the car. I remember the kids and Murph asking when I would be back and responding with, "not until she is gone so however long that takes." They nodded and knew it could be quick or it might be a little longer but I wasn't leaving until she did. As I drove up there I am not sure I had too many thoughts other than, please hold on until I get there mom. I am coming!! I figured she would but you just never know in a situation like this.
When I got there, our cousins were there to say goodbye. We laughed, we cried. We were so grateful to have each other but also to have had her. She was the glue that held everyone together. She's been gone in so many ways for so long but yet we all always rallied around her. Now what would we do when she was gone? We hunkered down. It was going to be a while. It was obvious she would not pass that night but again, who really knew. She was in control now. Finally, she was in control again.
I remember at some point saying to my sister, "we should sleep?" She agreed and we left and went to her house to get a few hours of sleep. Do you really sleep though? I mean, I think I did for 10 mins or so but every time I heard a noise or a voice I was ready to jump back in the car. I think we were back at the nursing home by 5am.
What a day. Hospice was there. Truly truly a godsend and I have said it before that they are angels on earth. Her nurses / care manager were no exception. They laughed with us. Cried with us. Waited with us. We listened to John Denver. We talked. We discussed her arrangements and what we planned to do. She even tried to leave us a couple of times that day and we thought it was over but she came back. Why? What's keeping you here?? GO!! Please go mom! Be free. We joked that it was my Dad telling her "not yet, I am still enjoying my peace and quiet!" Ultimately, I think she stayed because there was NOTHING my mom loved more than being the center of attention and having her girls around her. Well she had us. We were there and she could hear us laughing and talking and she didn't want to miss a minute. She never did! Always her favorite time was with us. She relished every "girls day" every conversation we had, always.
They say two things to those about to lose a loved one. They probably say more but two things that always stick with me: 1. Their hearing is the last to go so talk to them. They want to hear you. 2. TELL them (back to the hearing) that it's OK for them to go. It will help them pass. It's not easy to do, trust me. We did it with my Dad and now here we are again telling our mom the same. Over and over we told her. "It's ok. We love you. We will be OK! Go watch over us! Watch over the boys. We will see you again. Say Hi to Dad (or Don't ) and Vovo and Papa and all those that are waiting for you! Go Mom...we love you!" To the point that I was thinking, she is probably thinking Jesus girls, I get it! You want me to die!! Thanks a lot!!
At one point I remember I told T, she won't go. She is loving this!! T's bff from childhood had dropped off a care package of wine and snacks! We were sitting there with red solo cups (maybe not red!) drinking wine and laughing like we were at a party as she laid there waiting to pass. If you knew Joanne, you know she wasn't going ANYWHERE! This was way too much fun for her.
I finally say, "I think maybe we have to leave so she will go" I said it with a wink so we will leave but come back after a nap! We decided to leave and try to sleep a little more. We felt incredible guilt because we knew she was close so what if she passed when we left after sitting there for 2 straight days. Were we really going to risk her dying alone? Do we suck? I knew my mom well enough to know that she wanted us there. I truly believe that but there was a part of me that also knows as a mom, do you really want your kids to see you die? I don't know. I am not there yet but if you ask me today, I would say I am torn. Is that really the last memory I want them to have of me?
What I finally said to T was "remember when Dad passed?" I mean seriously, how could she forget, it was only 11.5 months ago (at the time)! The hospice nurses told me as I grappled with rushing out of Connor's basketball game and him knowing that meant Papa was about to pass or waiting "Leslee, we can't tell you what to do but what we can tell you is this. A person passes how they are meant to. If you are meant to be here, you will be. If your dad wants to do this alone, you won't be here and no matter what NO GUILT." They told me of a woman who wouldn't leave her husbands side for DAYS -I believe a week or longer and when she finally agreed to go home and shower, change her clothes and nap, he passed literally 10 mins after she left! They believe that he didn't want her to see him die. I do too. So, I said to T - "If she goes when we leave, that is what is supposed to happen" It's not easy to really believe that because we are both control freaks but we also were going on no sleep and were quickly becoming the hot mess express!
We left after a lot of convincing and guilt! Damn that shower felt good though and even the 10 min nap! At 2:30am or so, T woke me up and said "Let's go! Her breathing is changing" No, she doesn't have psychic powers -she'd called to check on her! We jumped in the car and off we went. We got there by 3 and could see the change. Ok kids, batten down the hatches, it's happening and likely soon...maybe!
We got comfortable and even started to doze off. At around 4:00 I remember T jumping up and smashing into my cot and waking me up. She said she couldn't hear her breathing so she wanted to check on her. Jesus Christ!! I had finally fallen asleep and you are waking me up!! ARGH...She kept apologizing and telling me to go back to sleep. I was like "Dude...seriously!!??" Knowing me, there were definitely some cuss words used! She settled back in and 10 mins later I popped up! I couldn't hear her and I was right next to her!! Shit!! Ok...T is up again "what's going on? Is she breathing?" Me (deep breath!) as I had my hand on her chest, "Not for much longer, come on - it's time" and with that...we sat up, held her hand repeated over and over how much we loved her and told her it was ok. She was safe and it was time" I remember looking at the clock - it was 4:19 -4:21ish ...She was gone. It was over. We did it. We helped her pass. Now what!? Now we make the call to hospice so they can come declare her even though one of the nurses confirmed that she was gone. I don't even remember if I called home to tell Murph until later. It was so late/early that I felt bad waking people up. Everyone knew it was only a matter of time so they were expecting it but why wake people up. It felt rude!
Tarah looked at me and the clock and said "I don't care what they say or what anyone says...She died at 4:20! That's our story!" I burst out laughing because I mean, why not and she may well have...it was a two minute window that is a bit of a blur! Time of death 4:20am on January 6th, 2023.
We sat there and waited with her until almost 8am (maybe later). Hospice arrived around 6-6:30 to declare her. After that we had to call the funeral home and wait for them. The staff came in and said goodbye to her. It was a lot but it was amazing to see so many people loved her so much.
We were able to sit and plan and finalize her obituary, clean out her room and donate her clothing etc. It's surreal but all things that needed to be done.
Once we were set, I hugged T. I can't remember if it was her or me that said it but we said "we did good" and I got in the car to drive home. It felt strange. I couldn't really cry. I haven't "really cried" I cry a little here and there -teary I'd say. I am a crier at many things but death like this, no. I was so incredibly grateful that she was at peace and finally free from Alzheimer's that I just couldn't. In my heart I had lost her long before the day she physically passed.
I will say that when someone passes, if you believe in signs, you will see them everywhere! For me, it was music. Every time I got in the car, or walked into a store, a restaurant, John Denver was on. Weird, right!? He's not someone you hear often anymore! It was CRAZY. To the point that I would just say "Hi Mom!" That was the biggest sign for me. There were lots of others too but if you knew my mom at all you know that John Denver was her guy. As kids we knew every word to every single one of his songs.
We planned her service if you will to not be a service at all. I have to give my sister full credit. I was skeptical. She wanted nothing to do with a wake. I was against this. I don't know why but I felt we owed her that. I was wrong and I can admit that. The party she planned was everything my mom would have wanted and more. Another thing about my mom, if you knew her, you knew she made jewelry - SO MUCH JEWELRY!! She would always say "what will you girls do with all this when I die!?" We are morbid like that! I responded one day with "We are handing it out at your funeral...no prayer cards...jewelry! You get a piece and you get a piece...Jewelry for everyone!" She would giggle and say "I like that idea!" We did just that! We had it displayed beautifully thanks to my cousins. I know that she was smiling from above with sheer delight! So many who came wore pieces she'd made for them and took more for themselves, as gifts for others. We didn't care. We want people to enjoy it and take a piece of her with them!
What an amazing day it was. So many laughs. A beautiful video playing. Flowers, jewelry, everything she would have loved. Great food, conversations. It was really a great day! So many friends we hadn't seen in far too long. It was a beautiful day. The perfect day. Just for her.
So, it's over. Now what? What do we do with ourselves? We have been caretakers for years now. What do we do to fill that void? My sister immediately signed up as a hospice volunteer and I plugged my way through my son's senior year of HS. I missed nothing. I organized an All Night Grad party for his class like my dad for me 30+ yrs ago...I kept busy. I told my sister that I apparently have custody of Mom and Dad as it got close to graduation because we have 2 cardinals that now live in my yard that perch themselves right where we can see them. They sit on a branch outside my office window and stare inside and when we go outside for photo ops - like prom, graduation, they fly over to the fence and sit and watch from there. It's weird and comforting all at the same time. I always smile because I know it's them. They loved their boys more than they probably even loved us and this was big! Connor, their first grandchild aka the second coming had big life events going on! They were front and center! Now though, even the excitement of graduation and him leaving for college is soon over.
I have thought about volunteering with hospice. I am not sure I am ready for that yet. I don't know. I don't have a problem with death. It's part of life and I am incredibly logical about it. Especially if you are suffering. I don't want anyone to suffer or be in pain so I always feel that death is a blessing in that instance but I feel like for years it's all that surrounded me. If it wasn't actually happening, I was prepping for it. I may need a break from it. I do think that I could be helpful to people though, dealing with death. Maybe I will give it a whirl. I remember when Mom passed T and I joked since we were out of parents now, maybe we should rent ourselves out to help those need help passing on because we are pretty good at it now. Who knows.
I work. I have a side hustle and I have a now rising sophomore in HS and a soon to be college freshman. That should be enough, right!? I still work with the Alzheimer's Association and will continue to. Maybe I should get more involved with that? I don't know. Maybe I should just chill but I am not sure I know how to do that. Some have suggested I write a book. What am I going to write about that I haven't already? I have all the blogs, except for the last few. My Dad left a binder with each one printed out for me in order of how they were written. I found it when we cleaned out his apartment. It was sweet so I have my "book" He always loved reading my blogs. He shared them with the Boston Center for Memory. They loved them too. Hey, if they help someone else deal with this disease then I am happy for that.
What is my purpose now? Do I have one? Has it passed? Was it to care for my mom and dad? I think for a time, that is what it was. I have no regrets. I / We did the best we could for them. It wasn't always easy or perfect but I am proud of how we handled things and I think that Mom and Dad would be too. We were always able to find the humor even in the darkest of moments. We never lost our senses of humor, even though at times I thought for sure, this is it- no more laughing, this is definitely not funny anymore! The laughter always came though. My hope is that it always will, regardless of our situations.
Should the day come where I am faced with Alzheimer's - then what? I think of this often, too often. Well, I guess we cross that bridge when we have to but I hope my kids face it with the same sense of humor that we did. I hope I was a good example for them. I hope they know, no matter what happens or how dark it gets, that I love them more than I could ever possibly express or explain and that they are the two greatest accomplishments of my life. I pray they listen to my request (along with all my friends - they've also been told and I am clearly saying it again!!!!) and they will hand out all sorts of pretty different colored pills, maybe hidden in candy because I love candy to everyone when it's "time" so they can all just hand me a piece (*pill) as they line up for their last visit until I take one last one and that's that! Adios world. Peace out!
Until then, I hope and pray that there is one day a cure. I hope more than anything I live to see it. Every day we get closer. I believe that. For now, we keep up the fight and pray. We live, we laugh and we love. That's all we can do until we say goodbye. My prayer is simple, I hope that it's not a long one.
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