Author: Betsey

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 9^th 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 28^th after a week of goodbyes, there was no doubt by hospice or anyone that it would be her last day.  So, on January 28^th, 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 29^th my phone started dinging.  The first text was from my cousin and simply said:

It’s January 29^th 

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 29^th, 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 29^th,  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 29^th 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!

Early this morning our mom passed away peacefully. Her girls were by her side and our dad was holding her hand.

In this last week she has showed us again what it means to be courageous and we will draw strength from her as we continue to fight Alzheimer’s disease and bring awareness in her name.

For now, it’s time to celebrate her life – a life full of faith, love, and memories that we will carry with us and to which she is now reunited.

You can rest now mom, we’ve got it from here. We love you.

Betsey

By: Betsey

Nearly every day someone asks me how it is going with my parents. I am so appreciative of all of the support and understanding everyone shows our whole family.  We are so lucky to be surrounded by good friends, family, co-workers, and neighbors. While the question is an honest question, my answer is never really honest.  I usually say something like, “just the same!” “She’s hanging in there!” Or, my fav, “for how bad it is, it’s going fairly well!” What the heck does that even mean?!

People genuinely care and want to help, but I never find a good way to describe how it is really going.  Maybe I feel disloyal to my parents by telling the truth, maybe I want to spare myself, or most likely, spare the innocent person asking the question. 

Maybe, which usually the case for me in this matter, words seem insufficient, so I don’t even want to try.  How do you describe your mom being on hospice and essentially non-responsive for over a year.   How, you get a call and think that her time has come. So, we drive up to the house in the middle of the night and gather around and say good-bye.  Then, the next day she steadies.  You are so relieved, but you know the relief is merely temporary. Then, repeat. How do you describe watching the toll this rollercoaster has taken on your sisters, as they constantly respond to every need my parents have while working full time and raising small children? How do you describe living in limbo for a full year watching your mom unable to walk or talk and be in obvious discomfort and wanting peace for her but knowing it will absolutely destroy your dad when the time comes.   All at the same time, my dad’s absolute devotion to my mom has placed his physical and mental health in crisis.  Whether he knows it or not, he can’t do this much longer.  How do you describe trying to come up with a new solution every single day to ease his strain, yet for reasons out of your control, you are unsuccessful on each attempt?  Do we have to hope for my mom to die so my dad can live? How do you describe that to your co-worker who asks how your parents are doing at the coffee pot? You don’t.

So, I guess when I tell you my mom is holding in there, in response to your question, and I smile and change the subject, please let me.  Maybe I don’t have the words that day. There is no way I could ever sufficiently tell you about this 10 year journey we have been on. But, know that we appreciate everything you are doing to help us.  We can never repay the kindness of our family who show up for every crisis, day or night (or Mary who shows up day and night for us), or my parents’ neighbors who show up with food, advice, and play puzzles.  We will always be grateful to you.   In the meantime, as my sister said, we will keep going on. We will keep laughing and cheering each other on and raising our awesome kids and trusting that peace is coming for us.  When this journey is over, I vow to help others, who like me, don’t always know how to tell their story.  We have to draw more attention to Alzheimer’s disease and its impact on families.  When my mom was diagnosed, I never could have guessed all that was in store for her or us.  We have to tell this story and the story of the caregiver and hope for better for the future of Alzheimer’s disease. 

By: Betsey

In the beginning stages of Alzheimer’s disease, schedule a session with a professional photographer for your family. Stay at home and have the photographer come to you/your family home. Take pictures of yourself and your parents, your parents and your kids and your parents together.  Take group photos, candid photos, and individual photos of your loved one.

After a few years not only does age naturally change everyone, but after awhile, your loved one with Alzheimer’s will start to take care of themselves differently. Their hair will not be styled the way when someone else is doing it for them and eventually they will no longer pick out their own clothes or dress themselves.   So, my advice for the early stages is to take professional photos now.   

We did this recently and got one group photo of my parents, sisters, kids, spouses and all grandkids. It is a great picture but I wish we had done it sooner, when my mom looked more like herself.  My mom doesn’t have much motor control anymore and it is difficult to get a photo of her looking at the camera, but we were able to get a few good shots.

Also, something I wish I did very early on, when my mom was very first diagnosed is to go over with a video camera and interview her.  I would have asked her about the recipes she made.  Was I really as sassy as my daughter when I was 5? Surely not?! Tell me about the day I was born, what was the weather like, what do you remember about that day?  I wish I had made a video for each of my sisters of my mom talking about them. I wish I would have had her say something to my dad. 

There are so many things to do in the early stages, but this would be my number one tip – document and capture memories early!

This doesn’t just have to be for those with Alzheimer’s.  Ask more about your loved ones now and hit record!

By: Betsey 

The real hero of this story is our dad.  I have been hesitant to write about him for many reasons. One of the reasons is that he is very private and I don’t want to share anything he isn’t comfortable with.  But mostly, its because I know that all of my words about him will be insufficient.  There is no real way to detail what he has done for my mom and his part of this journey over the past ten years.  There is no word to detail the level of selflessness and love he has demonstrated.  

My dad has been the sole caregiver for my mom for 10 years.  He has fought every suggestion to put her in a nursing him or give up the fight in any way.  My mom since her diagnosis, through the rough and the rougher, has lived at home.  My dad hand feeds my mom.  He bathes her. He dresses her.  He cares for her day in and day out.  He holds her hand in the middle of the nightwhen she is scared.  He sacrifices everything for her.  

My dad was an athlete and shy and he fell for my mom in that garage dancing to Misty by Johnny Mathis.  He was so young when he got married, just 20 years old, but I have never met someone who lives their vows day in and day out like him.

My dad spoiled us girls.  On a rare occasion if one of us was grounded, he would sneak peanut butter sandwiches in and sit with us.  He was a dreamer and encouraged us to do and be whatever we wanted.  If my mom was the captain of our ship, my dad was the cruise director.  While my mom baked the birthday cake, my dad was the one smearing it all over his face to make everyone laugh.

No matter what,  Dad took our side in any debate and believed us, always.  He is very faith filled and treats everyone with kindness.  He is the most honest person I have ever met and he never passes by someone in need.

My dad was always the sole provider for the family.  He worked hard as a salesman and worked for the same company for over thirty years.  He was still working and in the prime of his career when my mom was diagnosed.  He retired about two years after her diagnosis to care for her full time.  He also made many other sacrifices over the past ten years, and has basically put his own life on hold.  His retirement has consisted of around the clock caregiving.  There was a period of time during this illness when my mom was very angry and sometimes violent towards him.  He never gave up on her and if you were to ask him, he would tell you all of the good things about the past ten years.

My parents had a very traditional marriage.  My mom took care the household chores and my dad did the yard work and tinkered in his workshop.  Growing up, my dad never cooked or cleaned and probably did not know how to run the washer and dryer.  However, when mom stopped being able to perform her usual household routines, my dad took on his new roles with gusto.  It is funny to talk to him now about laundry detergent and what he is cooking for dinner.   He became quite the clothing stylist and impresses us with his outfit choices for Mom.  He always makes sure she looks nice and that her hair is trimmed and analyzes how she may want to wear it.  He plays her favorite music and movies for her and loves her devotedly.

Their relationship has evolved in so many ways through this disease.  They are such a pair and the love that they share isn’t just obvious from my dad.  For the first time in my dad’s life, and much to his delight, my mom started laughing at my dad’s jokes over the past years.  She looks at him so adoringly, it is amazing to watch.  For the past year, his name has been the only name she says. 

Some statistics say that those with early on-set Alzheimer’slive approximately 3 to 5 years.  My mom has been going strong for 10 years.  I truly believe this is 100% due to her bravery and his undevoted care of her.

My dad has always been our personal weatherman.  He is always keeping us posted on the forecast for the area and to this day will call me if a storm is headed my direction. He will call back with frequent updates and to let me know and when it is all clear. Sometimes I even hear my husband on the phone with him talking about river levels.  

I remember on several occasions growing up going for a walk around our neighborhood and it would unexpectantly start to rain.  My dad would always come find me in his big white car to bring me home.  Even though I obviously would have been fine to make it the short distance in the rain, I never had to question that he would come get me. That has always been my dad.  It was a pretty amazing way to grow up, knowing that someone would always come for you in the storm.

 It is fair to say we are in the worst part of the storm now.  Sometimes when I want to give up and I don’t think I can handle this disease any more I see my dad, waking up each day to make sure our mom is safe and protected.  The thing is, he doesn’t even realize he isgetting wet.  The toll this disease has taken on him is difficult to describe.  Watching his care for her at the sacrifice of himself is both beautiful and devastating.  Alzheimer’s disease is cruel is so many ways, however, we were unprepared for the level of impact this disease has on the caregiver.  

When this storm is over, I have no doubt that my mom will find the comfort she deserves in heaven.  For my dad, he will have no regrets for the way he has devoted his life to her these past ten years and their whole marriage.  For us girls, I pray that one day my dad will pretend to walk in to walls again and work in his workshop and windex our windshields as we pull out of his driveway.   For the time being, we will have to be the ones to hold the umbrella over him and pray that when this journey is over peace will find us all.    

By: Betsey

I thought this was a good time to tell you a little bit more about my mom.

My mom is one if 5 kids. She has three brothers and one little sister who she adores and who is also her very good friend.  She and her sister were known to dance on tables at church New Year’s Eve parties… 😊 My mom also revered her dad, a very strong Italian man who stood up for everything he believed in.

My mom is beautiful. She had long jet-black hair and awesome style.  She used to make her own clothes and has always been the best dressed one in the room.

She met my dad in high school in a garage party.  Rumor has it that he was dancing with another girl and my mom told her to scram and the rest was history.

My mom had three daughters all four years apart (very organized of you, Mary).  She didn’t work when we were young but as we got older she served as a teacher’s aide at our school and worked at a decorating store in our home town. She later worked at Pottery Barn and even took on some small jobs helping people re-decorate their homes using items they already had.  My mom had a wonderful talent for decorating and she could make everything beautiful.  Our home was always clean and cozy and it was an amazing place to grow up.

When we were young, my dad would travel for work sometimes. When he was gone, she would make us breakfast for dinner and I got to sleep in bed with her. She was always there to take care of us when we were sick.  She was the true captain of our ship and kept all of us girls organized and gave us everything we needed. We always had nice clothes, great birthdays, and she made Christmas magical.

She could cook! It seems like every night we had a  huge homecooked meal and it was delicious.  She was Martha Stewart before Martha was a thing.

Something many of you who know our family already know is this very key detail about my mom: she loves the song Celebration by Kool & the Gang. Word on the street is that this was the song she and my aunt were dancing to on the tables….  At weddings when Celebration would come on and everyone else would quickly leave the dance floor, my mom would be out there shimmying around.  She didn’t care if it was just her dancing or who was watching. If her song came on, she was going to dance! Her love of music has remained constant throughout her disease. Up until recently she would still dance around with us during dance parties.

She was excellent with older people and volunteered with Meals on Wheels. I remember her really going above and beyond for a particular woman who was lonely. She was always going back by her house and dropping off slippers she bought her or a little treat. She always volunteered to clean our church, help make meals for funerals, or assist as needed.

Here’s something else about my mom – she is tough.  She was no wallflower.  She get’s that from her dad! She beat uterine cancer without blinking an eye. She has had early on-set Alzheimer’s for almost ten years and is still fighting.

It is very difficult to see her now, unable to care for herself, and sometimes it is all I can see when I look at her – this very different version of who she really is. I know it is hard for her friends and family  to see her this way too.  We have all had a rough time lately, so for today, I think I’ll stop talking about her disease and how she’s doing, and I’ll choose to think of her on the dance floor – just her and Kool and the Gang…

By:  Betsey

What do you do when a parent or loved one is first diagnosed with Alzheimer’s Disease?  For us, it was an overwhelming and scary time. We didn’t know where to turn or what to expect.

Below are our best tips for the time right after the diagnosis.

1.  It’s Okay to Grieve

It is okay to feel shocked and overwhelmed after the diagnosis. I remember when I heard the news, I couldn’t help it, I kept googling my mom’s specific type of Alzheimer’s Disease.  With any illness, people warn:  Do Not Google, but I couldn’t stop! There was no good news. Nothing I saw made me feel better but I wanted to try to understand what was happening.   It’s scary because you have no idea how much time you have but you do know that there is no recovery.  It is okay to grieve and take time to get used to the news in your own time.

2.  Forgive Yourself

As I detailed before, for a long time I felt very guilty. I had noticed the changes in my mom but didn’t consider Alzheimer’s.  I teased my mom for forgetting things. I felt like a jerk. It took me awhile, but eventually you have to forgive yourself and focus on the road ahead.

3.  Find a Good Doctor

Find a neurologist that you are comfortable with.  Get recommendations from your family doctor and do your research. It is okay to visit a few doctors to see who the family is comfortable with.  Lately, when my mom has a neurologist appointment the entire family goes.   It is nice to develop a relationship with the doctor and all of their staff as you will be spending a lot of time together.

4. Get Involved with the Alzheimer’s Association

The Alzheimer’s Association is wonderful and provides many resources. They have support groups, a helpful website, and a surplus of reading material. In the beginning my Mom signed up for the program where she was matched another person who had also recently been diagnosed with early on-set Alzheimer’s Disease. Through the Alzheimer’s Association, they would call each other at specified times to talk about what was going on in their lives and I think she enjoyed this program. Also, at various times, all of us participated in different support groups.

The most beneficial thing we did early on was set up a care consultation. Through this program a trained consultant from the Alzheimer’s Association met with our family to answer questions and provide resources. Looking back, I will always remember this time as the moment I realized how brave my mom was. She was still very much aware of what was happening at this point. She sat there  at this meeting as the care consultant discussed the changes she and we all would be facing. The care consultant advised that my mom stop babysitting my nephew immediately. It was devastating news to her. She loved babysitting my nephew but she never would have done anything to put him in jeopardy.  She didn’t argue or push back but I was horrified at how awful this must have been for her, sitting there, taking it all in.   I will never forget that meeting and thinking the whole time how  I never knew how brave my mom was and wondering what else I didn’t know about her.

5.  Make an Appointment with an Attorney

Find an attorney that specializes in elder care and estate planning and make an appointment right away. It may be hard to imagine right after the diagnosis, but a day will be coming soon where your loved one won’t be able to make their signature and will not have the cognitive function to make necessary decisions. It is important to get key documentation and other long-term plans in order now.

6.  Start Documenting

From day one, start documenting the changes that occur with your loved one and when they happened. Keep a timeline of key events and mile markers as later on you will want to reflect back on this time and see when certain changes occurred. My sisters and I discuss this all the time and we wish we had kept a better timeline following the diagnosis. We have tried to go back and piece together key periods and changes, but it is difficult, so start right away.

7.  Reconsider Driving

At first, we thought Mom was totally fine to drive. She seemed like herself. She maybe couldn’t do extensive math problems but surely she could drive up the street to Walmart? We fully intended to let her drive around to her normal spots initially and now that sounds totally crazy. Luckily, at a doctor’s suggestion, we did a driving simulator test early on. My mom’s reflexes were slow and her nighttime driving was very poor. The day my mom completed the driving simulation test was the day my mom stopped driving. That was a difficult time as my mom was very much aware of what was happening to her and she was sad to lose her independence, but it was definitely the right decision.

8.  Run for the Sun

Reconsider your loved one’s bucket list immediately. Has she always wanted to go to Paris? See the Grand Canyon? Make it happen immediately. Plan a trip, plan a family reunion, plan a celebration, and do it now. A few months after the diagnosis, we surprised my parents with a trip to Italy.  My mom is a proud Italian and had always wanted to visit.   Like many people, my parents had saved such a trip for retirement.  However, their plans accelerated quickly. When they went to Italy it was early enough that my mom was physically healthy and was able to enjoy the trip to the fullest extent. So, early on, go for it. Make a plan to cross items of your loved one’s bucket list and revise your own bucket list while you’re at it!