Every Little Thing Gonna Be Alright -

Wow my friends - where to begin. I last wrote in October which truly seems like a lifetime ago.  It's insane to me that it was 3+ months ago which isn't a long time but yet a lifetime. As usual, I have no idea where to even begin with so much swirling in my tiny little brain. This blog is going to be more about my dad and the end of his days vs. the Alzheimer's battle with my mom but not too worry, that will also be included as that is how this blog started and there is still plenty to share on that front.

When we last left off in October, Mom was still declining and really, so was he.  We didn't know it at the time but we would soon find out.  Probably right around Halloween, we had an appointment with his oncologist. The news we knew was coming.  "No longer treatable!" Not only was he not responding to the treatment, the cancer was in fact spreading like wildfire through him.  He had a decision to make - try a fourth and final round which the doctor said would absolutely kill him before the cancer does or just stop treating and let nature take its course. I know he was devastated. He truly believed he would win this fight. It was very clear that day that he would not.  I knew it the day we got his initial diagnosis but for him, I believed. I encouraged. I told him "fight as long as you want to fight, Dad. When you are ready to stop, we support you 100%." 

After the appointment he looked at my sister and I and said "What should I do?" With the bravest of brave voices we said "It's time to stop Dad. You heard the doctor. It's time for you to enjoy whatever time you may have and just live! You may have 3 months - maybe a year - maybe five - who really knows but whatever it is you want to feel somewhat "ok" to do whatever it is you still need to do!" He thought about it and the next morning (and I know it KILLED HIM) he texted us that he had decided to stop treatment and let God decide his plan.

It's a lot, to know your parents are dying. Not one but two of them at the same time. I hunkered down and went into overdrive. It's so crazy to think about this but a good part of the last three months are truly a blur.  I remember the crazy stuff like Halloween Eve (saturday night!) pouring, horrible rain and the phone ringing - It was him saying Mom's facility just called and they rushed her to the hospital. Could I help...Of course. I called the facility and laid into them!! They have been instructed REPEATEDLY to not call him. To remove him from the list as he is DYING!!! I am in charge. I am the POA / HCP - you can't reach me - You call my sister. No one else!! They apologized profusely of course but that doesn't help when you are already living on the edge.  

I rushed to Good Samaritan in Brockton. I am being polite when I say "what a shit-show." The 12 yr old working the info desk told me rudely I wasn't allowed in. I nearly pulled him through the wall and said "She has Alzheimer's and can not communicate - LET ME IN"  Incredibly long story short, but I was brought back to be with her within 10 minutes. LONG LONG night of nothing! They said she was coughing up blood. The hospital of course found nothing!  They sent her back! I drove her at 2am. She had no shoes. I had extras in my car so we put her little size 7 into my size 10's and I wrapped her in blankets from my photo shoots along with my coat and brought her back! I was livid!! So many things were wrong with what happened that night.  I knew this long ago when I started looking at facilities for her but damn is our healthcare system broken -especially for the elderly and god forbid you toss in Alzheimer's! No help at all. It's just gross

November was decent. The chemo and the meds were slowing leaving his body. He was feeling good. I actually think for a bit he thought he would beat this! We knew he wouldn't but for him, we always believed.  The Dr. was nothing but positive for him. He was amazing. Truly, I can not say enough about this incredible human that was his doctor. God forbid I have cancer one day, he's who I am going to. No question. 

Thanksgiving was tough. He seemed to be "off." In retrospect I would say that it was the beginning  of his true decline. He was more tired and seemed to be eating less again. Life was so hectic and busy that I regret to say, I didn't probably notice the way I should have.

December came and the holiday chaos began. Basketball season started for my oldest so we were full speed ahead. Football ended on 12/2 - we made it to the Super Bowl and that same week hoop tryouts were happening. Games kicked off and there was no looking back. No break either. He desperately wanted to go to a game to see him play. I guess in hindsight I should have realized that he wasn't "well enough" to go.  He just kept saying he was afraid of Covid still and with the new variant and the holidays coming he didn't want to risk it. I never argued as it made sense. I know at some point I said "Dad, you need to live - and staying in your apartment and missing these things isn't doing so." I don't think I realized how truly sick he was. He hid it well. I know I told my sister I'd be shocked if he lived until March but I had no idea how right I was.  

Christmas came and of course as is everyone, we were busy with get-togethers and fun festivities.  I know he was excited about everything that he bought for the boys. He couldn't wait. He took extra care in choosing their gifts this year and spent a little extra money too. Obviously, in part because he knew, as did I, that this would be his last Christmas.

On Christmas Eve we had good friends over as we do every year. He was here. It was a nice visit but as he got up from the table he nearly fell over. My girlfriend's eyes wide open and attempt to dive across the table alerted me and I reached up and grabbed him as he was sitting next to me! He explained that that happens sometimes and he's fine! Just needs a minute.  What!? What do you mean that happens sometimes? You live alone! That is dangerous and scary. I immediately enlist my son and our friends son to drive/follow him home. He was furious. I didn't care. I knew at that moment it was not safe for him to drive any longer. Shit! Who is going to tell him that? It sure as hell isn't going to be me!!

Christmas Morning he came for brunch as he (they) have done since they moved back here 5 yrs ago.  He couldn't really eat. He choked on everything. At one point I thought for sure that my husband was going to have to Heimlich maneuver him.  I was terrified. He seemed in good spirits but I felt sad. It was a tough realization that this would absolutely be our last holiday together.  After he left we got ready to go see mom.  He stopped going in October on their Anniversary when she no longer remembered who he was. 

She was dressed her best red shirt and happy as could be although completely clueless that it was Christmas. In that moment I thought "This is so surreal.  I have two parents but one will be gone soon and the other has been gone a long time although still here." It makes no sense and it seems so cruel but I remind myself that others have it far worse! The other piece - this was my first Christmas without my mom being there. She is "here" yes but I think everything else overshadowed the fact that she wasn't at our house and "with" us if that makes sense.

The day after Christmas my sister and her family came. Same as the day before. It wasn't good. He was so happy and excited to have us all with him but we knew, this was it!  She said after he left, "how long do you think he has!?" I said "I really don't know but if I were a betting gal, I'd say not long...a few months at best." I feel like we were going through motions. I was definitely feeling some anger over a book he gave me as my "gift."  It was a self help book. He feels that I am not "emotional or vulnerable enough" - I am plenty emotional and vulnerable - I just never let him or my mom see it because someone has to keep their shit together to get through all that we were dealing with especially in the last 2 years! Basically he told me to read it and work on myself...SERIOUSLY!!??  I thought in that moment if the Cancer doesn't kill him, I may!

I am somewhat ashamed to admit that the day after Christmas - I was DONE with him for a few days. I felt stressed, angry, sad - all of it.  I had to rally once again on New Years Day as he was coming to dinner. My cousin was coming to say "goodbye" She and her husband knew it wouldn't be much longer, so we did another big family dinner. I was definitely still "bitter" and it was tough for me to hide my upset.  I guess I feel like if I were dying, I'd probably try to be as nice and as loving as I could be. I wanted to scream at him and tell him he was an asshole and how could he be like that when I have done nothing but care for him and my mom for 5 years, since they moved back but alas I held my tongue. Life's too short they say. Lots and lots of deep breaths!

I called his doctor that Monday after New Years! I told him all that I had seen over the holidays and I was concerned. I wanted to express my concern over him driving and we had an appointment the following week. I asked him point blank "How much longer!?"  He said that for sure he would tell him no more driving! He also said his guess was 6-8 wks at best based on what I had said.  I was a little shocked. I told him I have a business trip the first week in February and asked if I should I go? He said, 'most likely not - that will probably be "the time" or close to it!" Shit - this is faster than I thought! More stress- this trip is important. I kinda HAVE to go!! UGH.

That week was tough. I went over and hung out with him. I put those feelings of anger aside and just "let it go" as the song says. Life is short, especially his at this point. I helped him with his new phone that I thought would be the death of all of us! Unsolicited advice, never buy a dying man a new phone. It's a disaster! I got him the phone closest to what he had (just 5 yrs newer!) but he couldn't figure it out. It was a lot. Calls daily. Trips over there to help him. Nuts. I threatened to take it away and give him back his old one but sadly his old one was so old that they wouldn't reactivate it! UGH.  That weekend we visited. I told him my hubby was sick and I didn't feel great but we were fine. I had taken a Covid tests, all negative. Wellllllll.....Monday my hubs and my oldest son - POSITIVE!! Seriously - can't make this up! Somehow, myself and my youngest continued to test negative but I was shocked every time that negative line appeared.  Regardless, he wouldn't let me near him, because you know, Covid would kill him.

That week was his appointment.  We had to change it to virtual because I couldn't go with him and obviously, I didn't want him to drive.  Thank the good lord for good friends as I had to have one of them run over to his house and set up his zoom because he couldn't figure it out. The appointment went ok. I could tell that the doctor was concerned. He did tell him "NO MORE DRIVING" He also convinced him that it was time to bring in palliative care and he'd get that started and they would be calling me.  I knew it wasn't good. I hadn't seen him in about 5 days and was stunned at who I saw starring back on the other side of the screen. The dr. said that it was time for some pain medication - He suggested oxy.  My dad said "Well, that worries me - I am worried about addiction" I literally burst out laughing uncontrollably. God bless his doctor as I watched him struggle to not laugh as well and say "Gene, the benefits here will far outweigh your risk of addiction!" 

After the call my dad called me and said that insurance wouldn't pay for the oxy. CVS had just called. Now, here's the thing, in the end my dad couldn't really talk so he asked that I take over all phone calls. I called the doc back and we got liquid morphine. Insurance would cover that. I stopped by CVS prior to the change or mid-change and asked how much for the oxy and why wouldn't insurance cover it!?  They said it would be $90. I said "whatever !! I will pay it. The man is dying! He needs this medicine!!" I told them if he ever asked it was covered and he didn't need to know I paid for it! The glitch - we can't give it to him until Saturday when my sister arrives because they don't want him taking it alone in case he falls and I am still "quarantined" because god forbid I give him Covid!

As I was leaving CVS, a beautiful older woman tried to give me her CVS bucks. I told her they wouldn't work. She insisted I try. They didn't work but when I went outside, she was struggling to load her car. I ran to help her. She was lovely and grateful. She warned me not to get older because "getting old sucks!" I laughed and said "well the alternative isn't much better" She told me she was 90. I told her she looked amazing and I hope I am as lucky to be that healthy and beautiful at 90. She made me laugh and I was truly grateful to help her. She thanked me 100 times. I got to my car and I laughed to myself and then I burst out crying - 90. How odd that she was 90. My dad always told us that he wasn't going anywhere until he was 90. He told me when he realized he was going to die that "90 was coming sooner than we realized" Ninety, Damn, I wish he could live to be 90.

Saturday was fast approaching. He sent my sister a full on grocery list - like a crazy ass list! When she got there she stocked him up and realized that he hadn't eaten in well over a week!!  WHY did he want all these groceries!?  So strange. We are still trying to figure that out a month later. She finally texted me and said "get over here!! I just lied to him and said you are free from quarantine today and that you just took your last covid test and you are fine so please come!" It's funny because I am vaxed and boosted as was he, but he was terrified! I went over and was stunned at the decline. One week - it had been one week!! WOW! How was he still alive? He was literally a walking skeleton. I was finally able to get him to swallow some of the morphine by putting it under his tongue very slowly. He was finally sleeping.

We had a conversation (my sister and I) I told her that when palliative comes on Monday we are convincing him to go to a hospice facility immediately. We had already started to prep him. We didn't use the words "Hospice" but we did say "a facility" because we can't care for him or give him the meds that he needs. He was receptive. I think what got him was "Do you really want us to change your diapers because it will get to that!??" That was a solid NO. 

That Sunday was a crazy day for me. I was busy running around getting ready for my son's football banquet that I was in charge of that was on Monday. I also wanted to go get my oldest  a suit so we weren't rushing around when my dad passed. In the midst of all this my sister said things were changing quickly with my dad. He had slept all day. His breathing was changing. She was nervous. I reached out to two friends that are nurses. One was in town, the other away but both wanted to help. I met my friend at my house at 5 and we ran over. As soon as we walked in he was wide awake and pleasant. My sister was like "what the Hell man!?" We chuckled but as we walked my girlfriend out, she said "you need hospice!"

I called the palliative care nurse that was supposed to come at noon and explained the situation. She was on it. She called me within a few moments and had a room for him at a Hospice facility in Providence. They would call me shortly. By 11:30 they picked him up. He was not happy. He asked why we were packing a bag? Why was he going? How long was he staying!? I said "Dad - you have to go. They will help you feel better. You can go home once you are well enough to do so." Off we went.  Weird knowing that when he was wheeled out, he would never return. So crazy to me.

First and foremost, let me say that Hospice Nurses whether they are in the homes or in facilities are special angels sent from God- Truly!! How do you go to work every single day knowing that someone will die. They are just incredible people that have a gift. I can't imagine doing that job but I am so truly grateful they do.  

As we were checking him in to the center, they were getting his room ready and T and I were sitting outside his room waiting to be called in. My phone rang. It was a Stoughton number which is usually my mom's nursing home. I answered it as always, expecting it to be a robo call update about something in the facility. Nope! Instead, "Hi Leslee, we just put mom in an ambulance. She was coughing up blood!" Me "WHAT!?!?!?  Are you actually serious right now!?? I am literally sitting here signing my dad into a facility to die - this is not the right time for this!"  Breathe - deep breaths!!!  I calm down (a little) and eventually my sister and I go out to call the nursing home again to see what the hell is going on.  I will admit that I wanted to reach through the phone and punch the person on the other side as she was trying to be all "We've got this, don't worry, take care of yourselves and dad!!" ....Well, if you've got this why did you call us and why did you send her in an ambulance for what is probably nothing!!!!!!!

As I speak to the nurse at the hospice facility my dad was mid "Spite" burst as my sister and I called it. He was livid! Felt we tricked him. I don't care! We couldn't care for him anymore. Not the way he needed.  She said to me "He may get discharged in a few days. He's way more alert and spry than we expected!" I said "WHAT!? He is NEVER and I mean NEVER leaving here - He CAN NOT!"  I think they thought I was truly losing it at that point. I ended up in the social workers office a few minutes later! As I sat there explaining everything, then telling her about the call I'd just received about my mom, she looked at me and said "WOW! That is A LOT" Me "Ya think?" and as I said that I looked out the window there was a gorgeous rainbow. One of the prettiest I'd seen in a long time.  I actually stopped her so I could take a photo.  I knew in that moment, everything was going to be alright.  Dad would pass, mom would be "fine" and our lives would move on.  I didn't know when or how quickly but they say God sends signs - that was mine in that moment. Every little thing gonna be alright - just like the song says.

My boys arrived shortly after and said "goodbye" as I knew things would go downhill quickly and I wanted them to see him awake and alert and yes a little pissed off because that was him.  T and I hung out after they left and he said "How long am I going to be here!?!" I said in my sarcastic, bossy tone, "Until you can eat a steak Dad" He was spiteful and immediately demanded ice cream. He'd start there and work his way to a steak. Watch me!  Damn near killed himself right then! When you haven't eaten in a week and you are filled with nothing but phlegm and disgustingness from the cancer in your throat, esophagus, and mouth -Ice Cream/Dairy - not the way to go!! Spiteful bastard.  I laughed but felt terrible all at the same time. Laugh or you'll cry, right!?

As we left, T said she'd be back in the morning. I said, I most likely wouldn't be able to get there tomorrow. I had to work and basketball etc. I told him I could skip the games but he said "NO - You go to the games" It was all too much. Of course if I had to be there I would have been but I also was doing everything in my power to keep life normal for the boys. They were about to lose their Papa! Their buddy!

I didn't know if this would be quick or if we'd have a long road. We got back to his place and started to clean up.  I never made it to the banquet that night. Oh and the hospital discharged mom because there was nothing wrong with her. She is forgetting how to swallow and had chewed her cheek or lip so much that she was bleeding so of course she spat up blood because it was bleeding!!! It's all part of the process and the Alzheimer's decline.

By the next day he was not really responsive. I sat at my son's basketball game getting phone calls that he was changing quickly! I almost ran out of there to get to the facility but as I walked into the gym after stepping out to take a call from them, Connor was seeking me out. He NEVER seeks me out. He must have looked at me 10 times throughout that game. Again, NEVER. I couldn't leave. I knew that if I did, he'd have known Papa had taken a horrible turn and how do you play in a game knowing this. He's 16. I stayed and smiled the entire game every time he looked at me. I even talked about it a few days later with him. I said "why were you looking at me? You never do!!" He shrugged his shoulders and said "I know I don't and I have no idea why!?"  - Weird. Deep down he knew something was up.

As I left the game I called them. They said they felt he'd make it through the night and to go home but of course that was entirely up to me. The one thing they repeatedly said was "he will die how he is supposed to die. If you are supposed to be here you will be, so never feel guilty because if he wants you here, you will be"  I was exhausted and decided I'd go first thing in the morning.  

Wednesday morning I walked into something I don't believe I was truly prepared for. He was a shell of my dad. He was non-responsive but the nurses said "Talk to him! They say that hearing is the last sense to go!" I sat down and held his hand and said "Ok Dad, it's time. You need to go. I love you but it's time. I have two teenage boys and they need you up there. I need you up there looking over them because you know them, you know they do a lot of stupid things! You are no longer helping me here so get up there. You have a lot of friends to see. Say hi to them, get caught up and then start watching over the boys, please!" As I finished, T walked in and said what she had to say (that's for her to share not me!) but we'd both told him it was time. 

As we sat there she said "Les, look - they shaved him! He's so clean!!" and at that moment the aide came in and asked if we'd like him to be cleaned again today. We said "yes, of course!" and we thanked him. My dad was a neat freak. Shaved every day but hadn't been able to for probably a week. He would have been thrilled to know (maybe he did) that he was clean shaven again. The nurse followed him in and said "I have to warn you, moving him at this point to clean him, could be "it." Are you ok with that?" We nodded, kissed him and went outside to the hall. Within a few moments the aide called for the nurse, and she grabbed us and said "It's happening - do you want to go in!?" We walked in, kissed him.  I repeated to watch the boys and T said her words and they asked if we wanted them to finish cleaning him. They said we could stay in there if we wanted but it would be only moments. We chose to step out. He was gone within 5 minutes.  

WOW - not even 48 hrs from him being furious and wide awake and talking in his raspy crazy voice he was gone.  It was insane.  We sat in his room with him. Made phone calls that needed to be made, starred at each other and then finally decided it was time to leave. We met up with Connor to pick up his new suit. We went to lunch and started planning. We had our appointment all set for Thursday, the following morning at the funeral home and had already spoken with them and chosen the date for the service.  This was moving quickly. The hard part was over though. He was finally at peace.

That night I felt relief, exhaustion, sadness, happiness that he was free, all of it. I didn't really cry. I still haven't and we are nearly a month out.  I choke up and tear up but "cry" not really.  It was and still is weird. 

The night he passed at 1am my phone rang. I thought for that split second, is this the call? Did he not pass yet? Was it a dream?  What is going on? I looked at the phone and realized it wasn't my sister. I immediately thought "Wrong night for a wrong number" and I don't know for the life of me why I even answered it but I did.  I hear "Hi Leslee it's Mary from the Arbors - we are rushing your mom to the hospital again!"  Me - "WHAT THE HELL!??!?!? Are you serious!? My dad literally died today and now you are calling to tell me my mom is going to the hospital!?  STOP!"  I get out of bed and say to my husband, "Seriously?  Am I being punk'd?"

I refused to call my sister in hopes that at least one of us was finally getting some sleep. Instead, I called the hospital every hour to check on her as they wouldn't have let me in because of Covid.  She was fine. Again, probably chewed her cheek or tongue or lip and it caused her to spit up blood.  The hospital as much as I hate it was actually wonderful to me that night. Grateful for small things! The following morning, I signed a DNH (do not hospitalize). They can no longer send her to the hospital unless it's serious - like really serious!!

I was bright and early  and on the road to meet my sister to plan the funeral.  It was / is still somewhat of a blur. I hope we did right by him. We decided on a wake on Sunday and then a private luncheon for his bff's at his favorite restaurant on the Monday.  We typed his obituary together in our homes on Google docs. Ain’t technology grand!! We were commenting, adding, deleting - making sure it was just as he’d want it. Once that was done we could breathe a minute. Literally a minute!

His bff of 53 + yrs or so called me on Friday as I was walking into my son’s basketball game to say he had Covid. I felt horrible. He was beside himself. He wanted to be there for us, for my dad. We wanted him there too but we get it. It's simply the craziest of times right now.  We kept him updated and sent him pictures. He was there for my dad until the very end. That's what mattered. As my sister said "the wake/memorial are a formality - you were there when it counted!" I second that.

Between his passing and the wake, I went to see her. Needed to check on her to be sure she was alright. She was in rough shape. So confused and out of it. She has no idea he passed. Why tell her. Within a second she would forget if she even comprehended what I’d said. It’s just insane to me that they were married for 52 years and she has no idea he’s gone. No idea that we lost our dad. No idea that all their possessions are now gone. No idea. None! Crazy. Just crazy. 

Back to dad, As for the wake and the days following, I was/ am in awe as things are still arriving. I keep sitting down to write thank you notes and I don't know where to begin. The generosity and thoughtfulness that has been shown to us can never be expressed. Food, flowers, cards, more food, calls, texts, hugs everywhere I went along with expressions of sympathy. Some friends dropped off ‘spirits." others gift cards so we don't have to cook....all of it, crazy generous!  I can't believe the distances my friends drove to be there for us. The friends from a lifetime ago that showed up. Those from all phases of our /their lives that were there. It was inspiring and amazing all at the same time. My dad was well liked and loved. That was clear. 

I know we are incredibly blessed in our lives to have such an incredible village.  I can’t figure out why it is that there were a few (very select few) that didn't show up and that is what I focused on?  What is wrong with me? Is this normal? It is what it is and I have moved back to grateful for those that were there but still even now typing this, I know who they are and I get angry! Very angry. Friends/family that knew my parents their whole lives. No call, no text, no card, no show at the wake. I get it that people are afraid of covid and it's a crazy time right now. Send a message. Tell us that so we don’t think that you are assholes because right now, we do. 

The last few weeks have been insane. Life doesn't stop just because someone dies. There are moments when you think it should. I didn't think it would but it would have been nice to get a little break. I went right back to work on Tuesday after the luncheon on Monday.  I wish I'd taken a day but that's not me. We still had sports, work, activities. You name it. I even squeezed in that work trip to TX.  My husband just said to me this afternoon "Les - if they ever split our brains open you'd never see two more opposite, I am sure. Your brain runs like New York City and mine is like a small farm town in Arkansas!"  I burst out laughing. He's correct. 

We cleaned out his place this weekend. It's empty. Again, thank God for great friends & family with trucks. Couldn't have done it without them. We have a pile of things, a very small pile in our sun-room. My sister took some things, an even smaller pile. I am in awe of how much we acquire in our lifetimes, only to have your kids just toss it.  Things that meant the world to our parents that meant nothing to us. Enormous guilt in giving it away but yet knowing we couldn't keep it either. It's the strangest thing. I know I want to gut my house right now and get rid of everything so when I die my kids don't have to do it. It felt weird closing his door today one last time. As we walked out with the last bag it slid off my wrist. Everything in it shattered. I lost it. I cried for a few minutes right there in the parking lot and then I laughed.  T and I had joked forever that we knew he had a million dollars stashed for us somewhere and we'd find it when he was gone. I broke the roosters that my grandmother had collected. I was keeping a few. I texted my sister - " FYI the million dollars isn't in the roosters asses. I know because I just broke 4 of them!" 

Life goes on. I know that he is watching over us. I feel it. I believe it. I see signs constantly. I hope that he is proud of us. Proud of my boys. I know that I will see him again one day but right now it's only when I have a dream about him. I constantly think, I need to ask my dad, or tell my dad this and then I stop. I look at our text thread sometimes and smile or tear up and I move on. Maybe one day I will cry, really cry, maybe. We had our moments, our friction, our "dysfunction" as does every family but here's the thing - Life is short. Very very short. Say you are sorry. Cross items off your bucket list together. Move on and be grateful for every moment you have because you might not get another. 

If you read this far, you deserve a prize! :) XO