Alzheimer

1:02am


By: Betsey

We are thinking of everyone during this crazy time. Like many of you, I am now working from home and being the principal of our homeschool, while being so thankful for everyone out there keeping us safe.

We are incredibly grateful for all of the support and love we have received since our mom’s passing and since sharing the news about our dad.  On one hand, I still refuse to believe he has Alzheimer’s.  How could that even be possible? On the other hand, I think I’ve known the truth for quite a while now. He was officially diagnosed two weeks before Mom died.  I will share more about this soon. *Footnote: Apparently, I am a sharer now. I even ended my stand-off with Facebook. I hope you are happy Kristin. ?

Around the time of my mom’s passing and since, it has been so nice to hear stories about my mom from her life-long friends and relatives. It is comforting to learn things about her that I had never known before. Although I have been grieving, I have had an immense sense of peace knowing that my mom is whole again.  She is not suffering anymore and is on our side, rooting us on for what we face next.  We will need her help.

The most common question I have received over the ten-year journey with my mom’s Alzheimer’s has been:  does she know you?  I understand this question and probably asked this same question of others before being thrown into this. But, to me that answer has always been clear.  Although my mom couldn’t speak at the end, it had been years since she could communicate in a real way with me, and she hadn’t said my name in at least 3 years,  I didn’t ever doubt that she knew me.  There was always something, a spark in her eye or how she would turn to look at me when I walked in that confirmed that she understood that I was her daughter.  And, as a mother myself, I know that there is nothing – not even this terrible and cruel disease –  that could trump a mother’s instinct and love for her child.  So, even though she temporarily may have lost her memories of me – yes, she knew me.  Alzheimer’s disease will never be more powerful than a mother’s love.

The loveliest masterpiece of the heart of God is the heart of a Mother

– St. Therese de Lisieux

One of the top things I will always treasure about my mom is how she made birthdays so special.  She would wake us up with breakfast in bed with a candle in our pancake.  She served it on a tray table and made the whole family gather around the bed to sing.   You would get to open one present at breakfast and then the rest with a dinner of your choice that night.  After breakfast, she would send us on a treasure hunt all over the house to find a special present. She put so much time and effort into it.  She would host friend parties and make our cakes for us.  She even took a cake decorating class and got pretty good! 

I like my mom, adore birthdays. We go all out over here and I carry on all of my mom’s birthday traditions.  *Footnote: However, please see Ryan and the kids about my cake decorating skills and the 2020 strawberry cake massacre…   

January 28, 2020, was my son’s 9th birthday.  As the day approached, we knew that my mom’s time was near. In fact, she had exceeded the predictions of hospice many times and held on much longer than expected.  We knew that she would be passing for about an entire week before she did.  Therefore,  we were lucky enough for that week to all be able to be with her almost the entire time.  Relatives came in, old friends visited, and we pretty much camped out at her bedside.  We all got to say everything we wanted to say. We played her favorite music, brushed her hair, and we held her hand. I found myself most of all saying thank you.  Thank you for being a good mom, thank you for making dinner every night, thank you for teaching me about faith, thank you for driving me around to sporting events, and thank you for making everything so beautiful but at the same time making us strong enough to handle this.

On January 28th after a week of goodbyes, there was no doubt by hospice or anyone that it would be her last day.  So, on January 28th, my son’s birthday, I obviously had mixed emotions.  I was celebrating my son, one of the very best gifts I will ever receive, while preparing myself for the day we knew was coming for ten years.  But, like any mom would do, I pushed my grief aside and celebrated the birthday without a crack of how I felt.  I celebrated my sweet and amazing son. We had streamers and balloons, a treasure hunt, opened presents, let him skip school and go to Top Golf instead, and made sure he had great day.  But, the entire time, I knew that at any minute someone could call me with the news. I popped in to see mom throughout the day to say goodbye again, witness the Anointing of the Sick, visit with relatives, and then I would turn on my mom hat and go back and meet up with my son and husband to celebrate. 

When I would see my mom that day, I would tell her about my son’s birthday, about him, and what we were doing to celebrate.  I would talk to her about my birthdays and what she used to do to celebrate with us.  Selfishly, I did not want her to die on my son’s birthday.  I didn’t want to think of her death every year on his special day. I didn’t want him to know I was upset and for him to have that memory of his birthday.  But, the other part of me knew she needed to go and I didn’t want her to suffer one more minute.  So, I would tell my mom all day that it was okay to go.  I would tell her not to worry, we’ve got this and you can be at peace. Don’t worry, we will take care of Dad and will handle everything.  I made peace with her death and was as ready as one can be.

After my son’s birthday dinner and after everyone was tucked in, I went back up to be with my mom, sisters, and dad.  While all week people had been in and out, in the end, it was just the five of us together at my mom’s bedside.  We talked and laughed and then finally decided it was time to go to sleep.

I took the first night shift and I sat with my mom and talked to her. I told her again it was okay to go. I told her about the day.  My job was to alert everyone if her breathing changed.  The nurses had told us all day that it could literally be any second and that they honestly didn’t know how she was still hanging on.  Hospice had told us earlier in the week that mothers don’t typically die when their children are in the room and that moms have a way of controlling the situation when death is near. They said that based on her vitals, my mom still being with us was an act of sheer and absolute will power.  So, knowing it would be any time, I sat by her and talked to her from 11pm to 12am.  She held steady. 

At 12:01 am on January 29th my phone started dinging.  The first text was from my cousin and simply said:

It’s January 29th 

It was now officially the day after my son’s birthday. I hadn’t known it, but across the state, some of the people that I love the most, had been waiting up with me.  I didn’t have to say it, but you were holding your breath for me.  You were praying for a small gift for me during all of the suffering we had endured this year.  Knowing that people were waiting up with me and sitting with me while I sat with her will always be one of the moments I treasure for the rest of my life.  Even in the dark, love shows up, and I am forever grateful. 

Shortly after midnight, Jenny took over on the shift and almost immediately my mom’s breathing changed. We all gathered around and my dad held her hand.  At 1:02 am on January 29th, my mom took her last breath, and won the battle with Alzheimer’s Disease.  That’s right, she won.  Even though there are no survivors of Alzheimer’s disease, if there was ever a fight against it that was won, it was her fight.  She was courageous, defied all odds, tough to the very end, and instilled in us the fire and strength to keep fighting. She was at peace now and didn’t have to suffer any more.

For the last ten years, the shift between being a daughter and taking over the care of our parents has been extremely difficult for me.  I was the baby, and man was I babied. ? When my mom was diagnosed, I was 29 years old.  My sisters were just starting their families and careers.  But, we had no choice but to take over. My mom was there in a very real way and I was so grateful to have her with us these past ten years, but in the traditional sense that you think of your mom, and my mom in particular, she was gone and we were in charge.  Alongside our dad, my sisters and I made sure she had her medicine, we worried about her clothes, we made her doctor’s appointments, we fed her by hand, did her hair, matched her socks, made sure she was warm, made impossible decisions, and thought of her every move.  For ten years, I haven’t felt like the kid. 

I know that everything about my mom’s death was between her and God.  But, when she died at 1:02 am on January 29th,  I was very sad and kind of scared, but I also felt an overwhelming sense of peace and comfort.  She held on by sheer will power until it was January 29th and I like to believe that was, in a small way, for me.  A gift.  She heard me trying to control the situation like always and heard me telling her it was okay to go, but I felt like in that moment, my mom was saying: hey little girl, I’ve got this now. You aren’t in control anymore. She held on until she thought the moment was right for all of us.  In that moment, after 10 years of intense suffering and deterioration and so many things out of her control, she became whole again, and at that moment, she went back to being my mom – the real captain of the ship. 

The thing about death is that it reveals so much life. The people who showed up in the blizzard, brought food, and sent their love during this time blows me away. It is all really a testament to my mom and how she lived her life. We appreciate you all.  

Also, I want to thank all the other women in my life that stepped in and show up for me and my family over these ten years.  By looking out for me, my sisters, and our kids, you have given my mom the best gift you can give another mother – looking out for her children when she is unable to.   You help take care of my kids when they are sick, teach me how to braid, make decorations, send food, pick up my kids from school, and bring your video cameras to their events. Mary, Jane, Linda, Dianne, Barb, RyAnn, Kristin, and most of all my sisters…  thanks for taking care of me and my babies.  I am so grateful for the love you show me every day!  Happy Mother’s Day!



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