Most of you know that my mom suffers from Alzheimer’s. I have been very open about it on Instagram and every now and again I share our time together. Alzheimer’s is the most common form of dementia and 5.7 million Americans are living with it. What most people don’t know is that it kills more than breast cancer and prostate cancer combined. We need a cure.
I am not an expert and don’t claim to be. All I know is our own journey and what I have learned from it thus far. So many wonderful readers have reached out asking so many questions. I can sense the heart-felt emotion in each one. Perhaps it will be helpful to pass along what I have gathered along the way. We are learning as we go. To those of you who have recently discovered a loved one in your family suffers from dementia or Alzheimer’s, I want to welcome you to the family. I firmly believe with all of my heart that it is through community and sharing that we are propelled to move forward. There is an instant bond that forms when you are walking a similar journey. I hope and pray that my mom’s suffering will somehow help even just one of you.
Today I want to share thoughts on things you can do when you find out a parent or loved one has Alzheimer’s Disease.
Don’t Panic
Quality time abounds. While life will begin to look and feel different, it is still precious and wonderful and there is great value in staying in the moment.
Find Your Tribe
I can’t stress this enough. Find your people. Reach out and find someone who is walking the same path. While each journey is different, there is great comfort in being in the presence of someone who “gets it.” Only recently I discovered a couple of friends that know exactly what we are going through. You will cling to those friendships as they are deeply rooted in compassion. Believe me. You’ll find someone. This disease touches far more people than you can imagine. If one of your parents is diagnosed, I recommend you connect with someone whose mom or dad is suffering from Alzheimer’s. They will offer support that you need.
Learn About Clinical Trials
Money is being raised on a daily basis to search for a cure. I know as we are actively involved with fund-raising and my dad contributed on a regular basis in hopes of seeing a cure uncovered. In the meantime, there are many clinical trials being conducted. Your loved one may qualify.
Find Resources in the Community
My local Alzheimer’s Association is fantastic. No matter where you are there is a 24 hour number you can call and we did just that after my father passed away. I have reached out to them on numerous occasions for various reasons. They are there to help. Truly. It’s a group of fantastic people standing at the ready. There are so many resources available. Use them. I wish we had taken advantage of them early on. You can educate yourself on very important topics here (legal and financial matters, etc.). Of course you need to speak with doctors and be familiar with what to expect.
Start a Journal
The range of emotions you will feel are vast and real. From fear to anger to denial to acceptance and back to anger. All of it. Express yourself through writing if you can. If that doesn’t work for you be sure you have someone to talk with. A family friend, a pastor, a counselor. Whatever it may be, the emotions can’t be avoided but must be felt and traveled through.
Invite Your Loved One to Tell Their Story
Whether Alzheimer’s affects your family or not, I urge you to do this. Shortly after my mom started showing symptoms, I had my parents fill out a legacy questionnaire. Believe it or not, I just recently found these journals. Tears streamed down my face. To see my mom’s handwriting. To read her responses. To hear her story. A treasure. I have yet to re-read my father’s as it’s too painful right now but I am so so happy to have their written testimony. My husband and I plan to do ours very soon.
Document Life and Relationships
If you haven’t already, please start. Take photos. Write down stories. You will quickly learn that the most important aspect of this precious life we have is our relationships with others. Make time for them. Treasure them. Document them. Enjoy them.
Don’t Push Others Away
I saw first hand how pushing others away can really exacerbate the feelings of isolation. And I understand the instinct to do just that. My dear dad wanted to protect my mom. Especially early on. It’s natural. But it can really put a strain on friendships and be deleterious to the support network. There is no shame in this diagnosis and there is no shame in asking for help and support. I want to shout that from the mountain tops. Now is the time to draw your inner circle even closer.
Maintain Traditions
Keep on keeping on. There is so much life to live and savor. Continue with everything you are already doing. These traditions will grow even more dear to your hearts and to your family.
Create New Rituals & Routines
Alzheimer’s patients thrive on routine. You will see this as the disease progresses. Most of you know I did Fridays with mom. We would go to lunch and shop together. As time progressed she didn’t know it was Friday, but she knew we would be together. Those moments are so so special. Consistency is key and helps your loved one feel safe.
Care for the Caretaker
This is a particularly difficult topic for me. Our concern for my dad was off the charts. I spent most of my days distraught over how hard my dad was working. He refused help. The caretaker suffers. There is no doubt. Ultimately he paid the price with his own life. Do what you can to help them as much as possible. Another reason why you don’t want to push the inner circle away. I highly recommend the book, ‘My Two Elaines.’ It’s a very important read.
cheers to our hero and mom’s caretaker
Act with Compassion
Treat your loved one with compassion. Nothing less. You never want to look back and think you could have been kinder, nicer or more patient. It’s trying and it’s hard. But if you treat your family member with nothing but compassion, the path will seem more clear. I promise.
Be Good to Yourself
Don’t neglect yourself. As time goes on and the demands on your time mount, it is easy to disregard your own needs. You can’t take care of anyone else if you don’t care for yourself first. It’s not being selfish, it’s being smart. Get a massage, go shopping, head to the beach, turn off your phone, go out with a friend.
Excercise
Both of you. You need it and your loved one needs it. Get outside. Take a walk. Go to the gym. Whatever it may be, exercise will not only help you physically but mentally. Emotionally, you will benefit as well. When things get really rough for me I toss on my sneakers and go for a hike. Your loved one needs the exercise, too.
Be Open to the Beauty
Alzheimer’s Disease is unfair. It really is. But you will experience such beautiful moments on this journey. At some point, the cares fade away and the person you love will simply live in the moment. Isn’t that what we all yearn for? Be in the moment with them. It’s freeing and it’s beautiful.
Say What’s in Your Heart
Tell your loved one everything. Early on. As my mom progressed, in a way I started to say good-bye during our Friday lunches. I would tell her what an amazing mom she was to me my whole life. I thanked her for coming to sit with my every single day of bedrest with our first child. While she wasn’t communicating well, she cried and held my hand. She heard me. I wish I had started thanking her for everything even earlier. There is great peace in honoring the one you love while they are still here. Tell them how you feel. Don’t hold it in until it’s too late.
Embrace Music and Art
Research has shown that music can do amazing things for people with Alzheimer’s. I’ve seen it first hand. My mom does not use more than a few words when she talks and she can not recall anyone’s name. But when I play Frank Sinatra for her, she sings every word. If your loved one plays the piano or an instrument, encourage them to keep doing that. Art is just as therapeutic. Even now, I take crayons and coloring books and we spend almost an hour coloring together.
Go With the Flow
I still struggle with this. You need to throw your expectations out the window. This was harder earlier on for us. We so badly wanted mom to be mom. We longed for her sparkly reactions and playful demeanor. I could go on and on. As we began to embrace the new reality, it was less frustrating. Days will be good. Days will be bad. Moments will be good. Moments will be bad. A friend once told me I need to think of myself as an improv actor. You need to go with it. When interacting with your loved one, try to remember that you need to step into their world. When things get difficult, redirect. But ultimately, the more you can be fluid and go with the flow, the better off everyone will be.
My heart is with all of you who are on this journey. Know you are not alone.
Resources:
24/7 Helpline: 1.800.272.3900
Maria Shriver Fighting Alzheimer’s
My Two Elaine by Martin Schreiber
Know the difference between Alzheimer’s & Dementia
Important Information (Legal and Financial Matters, Medicare, etc)
Good morning, Courtney! Beautiful post about your Mom . . . My father-in-law was diagnosed many years ago and because his body was so strong, he has lived many years with this ugly disease despite bouts with seizures, infections and illnesses. It is a heart breaking disease, but my mother-in-law, husband and his two siblings are fighting the good fight, keeping my father-in-law home with a daily caregiver’s help and the siblings pitching in at night. And I SOOOO treasure the tender smiles, chuckles and expressions Frank made at our daughter when she twirled around or sang while playing. Thanksgiving a year and a half ago, I asked my husband to put his Daddy in the wheelchair and take him outside, he LOVED watching my daughter (and husband) climb a tree together. Unfortunately for my husband and his family, this is not their first experience with this dreadful disease, but it is mine and it has been eye opening but also has made me treasure my time with loved ones all the more. As I have read and seen so many times, the toll on the main caregiver is life sacrificing. I will pray for you and your family as you chart this new journey without your Dad at the helm . . . Do treasure your special moments for they quickly escape. Unfortunately for us now, my FIL is completely bedridden and shows little glimpses of life. I look forward to the day I see him on the other side of heaven for he is the dear soul who said “I hope Wallace meets her” . . . He already put me and my husband together before we ever met!
Beautifully written, Courtney. You have my daily prayers – just wish I could do more….
Thank you for sharing this. This may be intrusive so I understand if you don’t want to answer but did you have to place your mom in a facility after your dad passed away? If so, how is she doing? How are you doing with that?
You are my favorite blogger of all time. Even more so now than ever. There’s something about your writing that is just so genuine and humble. Your heart truly comes across. I read this post in tears. Thank you so much for continuing to share and always trying to help others whilst you are navigating such a difficult time yourself. So much love to you and your mom and your family.
Beautifully stated and I agree!
I echo everything Tammy said so well. Thank you for this post, Courtney. I’m sure it is helpful and encouraging for so many people. The fact that you can even think about helping others while you are very much grieving the loss of your dad speaks volumes about who you are. I am so sorry for all your family has been through and for all you are still going through. I’m praying for you.
This post is your best post yet. You have given so much great information on this topic. Your mom is just beautiful and I can’t even imagine what you and your family has been going through with your mom and dad. I am fortunate at this time, I don’t have a family member with this disease. But I will go back to this if I ever need to. I thank you for sharing with us everything you have experienced. I look forward to using the legacy questionnaire for my parents. Thank you so much for sharing.
Courtney, today I cried for the first time in a long time about my father who is deceased. I read your post this morning and it brought back so many memories of my feelings during his illness. He suffered from Lewy Body Disease, not Alzheimers but with many similar characteristics, including a dementia and hallucinations. It broke my heart as he understood something was wrong but not what to do. Together we worked it out. I still remember the day we sat together on the porch of a beautiful coffee shop and talked about what he wanted me to do when the day came that he no longer had control of his reasoning and logic. I held those promises I made through so many hard times: when his brothers and sisters turned on me for placing him in 24 hr care, when he would get mad at me over something he couldn’t understand, when I did my best to protect him when he got into unsafe situations. I thank God I had a wonderful neurologist/friend who guided me and reminded me frequently that my goal was to keep him safe even when I couldn’t always make him happy. If there was ever a time when I truly felt the presence of God daily, it was as I walked that journey with Him and my father. The advice you have offered others is very true and I commend you for sharing this with all of us. So many people end up walking this journey and your advice is important regardless of the disease your family member suffers from. Alzheimers is an especially difficult one. You need other people who share and support your journey! Bless you, your family and your mom!
Tears are flowing as I read this latest post, one of your best yet. I so admire your strength, and courage as you navigate thru this crazy thing called “life” Love and admire you sweet friend ❤️
Courtney, Thank you for writing this post. I’m sure it will be helpful to many of your readers. The mother of one of my closest friends was diagnosed with Alzheimer’s almost 10 years ago. While I’ve really just been an observer on their journey, much of the advice you’ve shared here is exactly what has helped my friend’s family navigate through this disease. I also want to thank you for your willingness to share so much of yourself through your blog. The grace with which you have handled some very difficult life challenges and the positivity with which you approach life, even when in the throes of those challenges, is inspiring. I know that we are strangers and that I only know you through the blog but I want you to know that this shines through with everything you write. I am drawn to your posts, not just because of the “fun” stuff – your lovely home, your beautiful family, the fashion and the recipes (though my family has become addicted to your Choc. Chip Salted Caramel Bars!) – but because of the heartfelt and sincere way in which you are willing to open yourself up and share some of the not so fun realities of your life. It is so easy, when faced with disappointments and challenges, to get discouraged and sink into a dark hole of negativity and, I’m sure that you’ve had more than a few moments of that – especially this past month. Yet, you seem to be able to, even in those darkest moments, find a way to focus on the positive. And, you have a gift for articulating it in such a beautiful way that really resonates with many of us. Thank you for your generosity and for reminding all of us that, while life can be hard, it is such a gift. Please know that you and your family are in my prayers as you cope with your mother’s illness and grieve the loss of your father.
I just found your blog and instagram a couple days ago, and I feel like it is a moment in which life presents to us exactly what we need in that moment. My mom is in the very early stages of Alzheimers, and it is a very confusing and difficult time for our family. This post made me weep, but was so helpful and important for me to read. Thank you for opening your heart and sharing your journey.
Sweet friend. You know my heart. I have been down this path with my father’s step mother, my mother’s mother, and now we are dealing with confusion/dementia and mental illness with my mom. I could not agree more on all accounts. I just yesterday had a conversation with my own father, “dad, you can’t do this by yourself.” He is very much like your sweet dad was. But…I can see the toll it is already taking and it truly scares me. I watched my grandfather, his dad go through it. And as you now, we are facing our own giant with my husband’s recent melanoma diagnosis and future surgery. It is KEY to reach out, to friends, loved ones, those who have walked the path before you, a pastor, a counselor, doctors. We weren’t meant to do this alone.
The only other thing I would add is that I wish others would show more compassion and less judgement. Unless you have walked in their shows, don’t tell them what they should and shouldn’t do. This speaks to what Linda above said about being criticized for putting her father in 24 hour care. The important thing is that loved ones are loved and kept safe, no matter the situation.
Beautiful and heartfelt words on your part. On another note–am I grasping, or does your daughter really favor your mom?
Know that you are continuing to make your father proud by the way you love your mother in his absence. And work hard to consider this: I bet there was nothing you could have said or done that would have changed the way he cared for her (i.e., his accepting help, taking respite, etc.). I’m not at all minimizing your loss–just saying that perhaps he died doing that which he considered most important. As much as we grieve and miss our loved ones, there’s some peace and comfort to be found in that.
She always looks so happy in your photos and has the sweetest smile.
Such a resourceful, raw, open and honest post. Thank you for sharing your journey.
I have Sirrius radio in my Dads room at his Care Facility. It’s on the Frank Sinatra station during his waking hours. Maybe this would be nice for your Mom. It is not the internet subscription. It’s the subscription where they send you a receiver and you purchase inexpensive speakers. It works great – just on/off. No messing around with a computer or WiFi.
A beautiful and resourceful post that honors your Mom, Dad and family as you walk through this uncharted journey. Having dealt with Alzheimers with my Dad, dementia with my Mom, and now advancing Parkinsons disease with my brother, you have my long distance support and prayers as you grieve for your Dad and lovingly care for your Mom. Staying healthy, positive and united as a family, and creating a support system is key. Blessings of love to you and yours…
Courtney – know that your mom could not possibly have a more loving and caring daughter. I can only imagine how difficult it is for you, but as you so eloquently stated, you will NEVER regret the patience and kindness you show to someone in need. My prayers are with you and your family.
Thank you for your beautiful post. I remember when Randy was sick and we took him in his wheelchair to see his mom in her Alzheimer’s facility. She didn’t know who he was but she told him he’d be ok. There was a bond even if she didn’t know it. What a precious memory. You’re a wonderful daughter. I treasure all our years at St. Tim’s seeing your family every Sunday st 9am. May your sweet dad rest in peace. Hugs to your momma and you. Blessings, Nancy
This post is full of great advice.
I am sure it was very difficult for you to write and share but so valuable.
Thank you for sharing,
Jane
Courtney, this post touched my heart and gave me so many reminders to always tell loved ones that we love them, to cherish our health and our relationships and never waste a day. Love you XO
I lost my mom five years ago to Alzheimer’s when she was 67. She was diagnosed with MCI at 57. Her mom and grandmother also died of AD. My Dad is showing symptoms of MCI now.
For many years I didn’t want to have children because I felt resigned to a fate of AD and didn’t want my kids to experience what I had endured. However, I decided to have kids and now have two daughters, ages 6 and 3. My oldest daughter took her first cross-country plane trip on her first birthday to attend my mom’s funeral. It was a very dark time in my life, to say the least.
Over the past 5+ years I’ve read a lot about epigenetics, brain health, nutrition and lifestyle factors that will change the course for me and for my daughters. I wish I had known more to help my Mom. I’m hoping to make some headway with my Dad. I would love to share the resources that I’ve found helpful if you’re interested! I’m a fellow Ladera mom.????
Thank you for sharing your thoughts! This article brought tears to my eyes.
Your life advice not only applies to families with a loved one suffering from Alzheimer’s but on how to cherish and make our relationships meaningful for life.
I am pinning this article and would definitely be revisiting it from time to time. You have a beautiful soul. God bless!
Courtney, you have a heart of solid gold – and you might not know it, but you are changing hearts and lives all over the world. Thank you for sharing such a personal journey with us but I know that you are helping so many others with these posts. my heart aches for you and your family, and all you have had to endure but I love the way you overcome so many hurdles and love with everything you have x