Hi friends. Today is not my usual style or home decor post, but something much more serious and dear to my heart. You all know that Alzheimer’s is a part of our lives. I have shared more and more through Instagram and stories and I am often flooded with questions. I know many of you can not relate and to be honest, I am envious. But I hope that I can be a resource for so many of you who are now walking down a similar path.
How long has your mom had Alzheimer’s?
For over nine years. Hard to believe. It’s been quite some time. According to the Alzheimer’s association, on average, a person with Alzheimer’s lives four to eight years after diagnosis, but can live as long as 20 years, depending on other factors.
When was your mom first diagnosed?
Good question but difficult to answer. I am choosing to go into detail about this because I have heard from many of you who are experiencing what we did. Soon after my mom began showing signs, she overheard a conversation and was extremely upset. So upset that she didn’t speak to my dad for over a week. It was at the point, that a fear of upsetting her set in and he never addressed it again. Very unfortunate. She didn’t receive an official diagnosis until after my father passed away.
If just given a diagnosis, I encourage you to have your loved one complete a legacy journal.
What stage is she in currently?
If you are not familiar, Alzheimer’s can be categorized as early, moderate, and severe (or late stage). Often times these categories are broken down into 7 stages. Currently my mom seems to be in stage 6 which is considered late stage. She needs care around the clock and now needs assistance with basic functions. She still gets around very well but does not understand basic instructions and can not carry on a conversation. Eating requires more cueing than in the past and she does best if someone is sitting directly beside her helping her with what to do.
Did your dad have help caring for your mom?
No. He used to say that he did because my sister and I helped at least once a week. But he was a saint and took care of her 24/7. It was extremely difficult. It’s not uncommon for spouses to try to cover-up how much their loved one has declined. He did this for quite some time. But in the last year before his passing, he was very honest with his frustrations and struggles caring for my dear mom. It took a major toll on him psychologically, physically and emotionally. I was never without my phone because he would often text me his frustrations and I welcomed him being able to communicate that with me. He needed that human connection because he was no longer in a partnership. It is so vital that if someone in your family is the primary caretaker, you truly offer as much support and interaction as possible. It’s quite common to slip into depression because life has become so difficult and draining. Losing our dad has been heart wrenching. Truly such a tragic loss.
If we are in public and my loved one does something inappropriate, what do I do?
I’ve gotten this question a lot lately. This is something we all can relate to if you have been with someone who has dementia or Alzheimer’s. Of course you love your family member to pieces, but it’s hard when social norms go out the window. It just complicates things because you don’t want others judging or looking oddly at the person you love. Here is an example (although I could list millions): when shopping at Target, my mom can not handle anyone following close behind her. To be honest, I don’t like that either, but we are talking 3 yards away. She will literally stop, let them pass and make a really unhappy noise and face. I have mouthed, “Sorry!” to countless people while hugging my mom. Instances like this are going to happen all the time. So you have a choice. Do you avoid social situations and further isolate you and your family member or do you stay strong and equip yourself. I hope it’s the latter.
Perhaps printing up a business card with a simple, “Please be patient, my _______ is suffering from Alzheimer’s” is all you need. You can easily pass it off to a hostess at a restaurant or the salesperson in the store.
My other piece of advice is to be very open and honest with the people you often encounter in your community. My parents frequented the same exact restaurant, Starbucks, and local Nordstrom Café every single day. Not kidding. While it may seem so monotonous to you, to them it was a safety net and a circle of people who embraced my mom. Everyone loved seeing my dad love my mom and my dad was such a great man and easy to talk to so they all welcomed them with open arms. They were very fortunate to have that. But to be honest, it wasn’t fortune. What you put out is what you receive and my parents always treated others with the utmost love and respect. Genuine and kind to the core.
mom helping with cookies – her being involved is a huge moment for us
What are some of the challenges during the early stages?
Gosh, even though it’s been nine years, I still remember that frightening moment when I knew something was off. I was sitting outside of Nordstrom (big surprise) having coffee with my mom. My daughter was eating her muffin and being a typical three-year old while my son was in his infant carrier. My mom and I were best friends. Talked daily and most of the time, a few times a day. She had the same relationship with my sister. Very close mother-daughter bond. We knew each other very well. While sitting there telling her a story about the kids, she didn’t look interested at all. My heart literally sank. It was an odd feeling of being alone. Besides forgetfulness, a blank and uninterested look were the first signs we noticed. The confusion was setting in and we had no idea the journey we would embark upon.
My loved one still knows who I am. How did you handle not being recognized by your mom?
While nothing really prepares you for that, I want to encourage you and truly let you know that because that is on the horizon, be mindful and appreciate the now. That has become my new mantra. Yes, one day, your beloved will not recognize you. But that is ok, because you can still make him or her feel loved and comfortable. While my mom does not immediately know who I am (if at all), the way I greet and hug her and love on her makes her feel happy and comforted. Isn’t that the most important thing?
Along these lines, I would encourage you to have plenty of conversations with your loved one as soon as possible letting them know how you feel about them. What have they taught you? What can you thank them for? I wish I had started earlier, but about two years ago during my Friday lunches with my mom, I began thanking her and truly telling her how I felt about her as my mom. Sometimes she teared up and grabbed my arm. Sometimes she didn’t fully comprehend. But you know what, I told her. And to me it’s about not having any regrets. While a sudden death rocks you to your core (as we know from just losing my dad so unexpectedly) this disease forces you to go through the grieving process for years. So to turn that into a positive, make good use of that time you are given.
Why do people with late stage dementia like stuffed animals?
My sweet mom loves stuffed animals. When I take her shopping I feel like I have my little ones again and I have to show restraint not to buy a new one every time. With my mom, we are now swapping out her stuffed animals. Due to her disease she won’t know one is missing and then I can reintroduce it later. I am not a professional so take this with a grain of salt. I believe that the stuffed animal serves a few purposes. First and foremost, my mom is more child like know and has reverted to enjoying things that she once did as a child. Furthermore, the stuffed animal is something to hug and hold and care for. She desires that. It is very comforting. Beyond that, they serve as a conversation starter. In her new environment her lack of communication skills make interacting impossible, but everyone can gather around the stuffed animal she shares. It’s something that brings her the attention she needs and thrives on. I’ve heard the same can be true about people who once had pets. In fact they now make special babies and animals that look quite real. I believe they are called Memorable Pets and Believable Babies if you are interested.
I hope this has been helpful. Please feel free to leave questions or comments below. I am happy to answer more.
In case you missed it, I wrote about what you can do after receiving a diagnosis in this post. There are many helpful resources listed at the bottom.
I will also place a button on my side bar so our journey is easier to find in case you want to pass it along to a friend. While you may not be personally dealing with this, chances are you know someone who is walking this journey.
Enjoy the day, my friends. Each one is precious.
Courtney, this post is so touching. I don’t know you personally, and I don’t know anyone who has Alzheimer’s at this point in my life, but I can imagine your honesty will be helpful to many readers. You seem like a lovely person and daughter, so I offer you as much encouragement as a person can who does not know much about this disease. Thank you for straying from your regular type of posts to take an opportunity to educate us. I always enjoy your InstaStories when you’re with your mom, so please continue as long as you are comfortable <3
Beautifully stated! I completely agree! Sending lots of support, good thoughts and thanks.
I couldn’t agree more with everything Michelle said-
Thank you so much for giving such a beautiful voice to such a harsh and hard reality.
Meghan G. says
Courtney, wow. Your sweet mama obviously raised a wonderful daughter and your relationship is clearly so special. Having the ability to be so patient, kind and loving every single day in the face of something that is so frustratingly random and tragic is remarkable. I know it will be helpful for many readers, regardless of the difficult situation they may be facing. And it serves as a good reminder for all of us to slow down, find joy in the little things and cherish time with dear family and friends. Thank you for sharing this.
Nancy Jumper says
What a fabulous daughter you are. I was lucky that my precious mom lived to be 103 with no dementia but my mother in law was diagnosed at 70. She lived 12 years with it. My father in law reluctantly agreed to put her in a board and care facility in 2010. Randy would go to see her in his wheelchair. She didn’t know who he was but she told him he’d be ok. I have the sweetest picture of them together. And when he passed away, she didn’t know she’d lost her first born. Sad but fortunate for her. Prayers to you for continued strength. God bless~Nancy ❤️
Thank you for sharing this. You talk about how amazing and wonderful your parents are, well it has clearly passed down to you. Telling people you love them and are thankful for them is the most important thing. <3
I am so glad you are facing this journey with such love, honesty, and courage. We have been on this journey years ago, when there was so little help. No one knows how emotionally draining it can be, as well as financially, unless you’ve lived it. Your mom is. and has been so well loved by her family….it is a tribute to her love for you.
Courtney, thank you for opening up about your mom. My friend’s dad has Alzheimer’s and is a home. Her mom tried to take care of him as long as possible but she then went into deep depression. My dear friend was not only taking care of her dad but also her mom.
I’m going to forward this to my friend. I think it will bring her some comfort during this difficult time.
Thank you for this post. From my outside view, I see you handling the journey with such grace and compassion. I can’t imagine how your mom’s diagnosis affected your other family relationships, but I think your children will learn so much about how to love and be loved from this experience. (and that picture of your parents together is just beautiful)
Bless your heart and thank you for sharing all of this with us. This post is very helpful and I am truly touched by your courage and willingness to be so open and honest.
You and your family will continue to be in my thoughts and prayers ????
I so admire your willingness to share so much and use your platform to speak out- what a beautiful community you’ve built. Praying for you, your sweet mom, and your whole family.
Thank you for writing about this. Such a hard situation but so many are dealing with it. I think the business card idea is a good one. We had an encounter in a restaurant once with an older man who was terribly nasty to a young mother and her well behaved children. He made a scene, made the mother cry, and was incredibly rude and insensitive. My husband confronted him, politely but firmly, and his family was just sitting around a table not doing anything. I often wondered (after we all calmed down) if he was suffering from dementia and his family just didn’t know how to handle it. It would have made a world of difference for everyone if we could have understood what was happening.
Barbara from 21 Rosemary Lane says
Courtney I know something of the pain of you are going through as my dad suffered from vascular dementia which presents challenges similar to those of Alzheimer’s. One of the things that can help with declining memory is to have pictures from different stages of your mom’s life with various family members in her room. This way when she wakes up in the morning not knowing who a loved one is, she can see the pictures of herself with that person and know that she has a history with them. It helps with reducing fears and anxiety. Hope this helps. I will be keeping you and your family in my prayers as you continue on this journey.
Courtney, so many prayers being sent your way. I have a daughter with autism and can certainly relate to the scenes in public. You have the absolute right attitude – your mom needs to feel comfortable and if that makes others uncomfortable for a few minutes, well, so be it. And I love what you said about not having any regrets – no doctor can be absolutely sure that your mom does not understand what you are saying – maybe some days she grasps your arm and does not on other days – you keep on telling her what she means to you!
What a sweet post. I bet it’s hard to write posts like this but I appreciate your honestly. You are such a loving daughter to your mother. My thoughts and prayers are with your family.
Sharing your journey is invaluable. Although I don’t have a family member with Alzheimer’s, my father has been diagnosed with a slowly progressive neurological disease and my mother is his main caregiver. I haven’t been blessed with a close mother/daughter relationship, and she is not the easiest to get along with, but you have reminded me to support her as a caregiver regardless and look past the petty stuff. So thank you. 🙂
Thank you for sharing this – I hope it will be helpful to someone else in the same situation. I wish I had seen it when my mom was diagnosed 12 years ago (she died less than 4 years later – her disease was rapid and unrelenting). Our experiences are so similar raising children while losing our moms. I wish you peace in this whole ordeal.
I found you and your blog just recently. Of course, I browsed your content for a good few hours and during that time came across your journey with your sweet mom. I immediately felt a connection with you because, my momma too is battling this disease (currently 6 years in from diagnosis, however probably more like 8 years in). My dad is currently where your dad was at – caring for my mom 24/7 with no help, except from me. I have the same worries that you had for your dad. I’m nodding my head in complete understanding with each word you write on this topic. Thank you for your honesty and complete transparency on how truly difficult this journey is. There are so many layers involved and as those of us affected know, speaking with others who are walking the same path is so very helpful. My question to you is about the transfer of care once your dad passed. Did you mom live with you for a short time or was she moved into a care facility right away. I’ve been trying to encourage my dad to talk about the what ifs in the event he goes first, but that has been a challenge. I too worry about my dad’s mental and physical health that this has put on him. Would you mind sharing what your dad’s cause of death was with us. Again – thank you for allowing us to be apart of your journey with this.
Dianna Noeth says
Thank you for sharing, sadly I know the heartbreaking effects of Alzheimer’s on a family. It is so difficult both emotionally and physically. Although I don’t know you personally I can relate on some level. You are doing the best you can and I’m sure your sweet mama appreciates it. Xoxo.
Courtney, thank you for this heartbreaking but beautiful post. I have not had a loved one with Alzheimer’s- yet- but friends have so I very much appreciate the insight into this horrible disease. You speak so highly of your parents and I want you to know that it is quite obvious that so much of what made them special has been passed on to you. I just love your heart and the honest yet sensitive and respectful way you are sharing your journey with your mom. And I agree with the commenter who said that your children will learn so much about love, patience, devotion and honoring their parents from this experience. When you lost your dad I wrote your name on a post-it and put it on the desk in my kitchen so that I would remember to pray for you and your family when I see it. Still praying. I am sure many others have prayed for you, too. I hope you can somehow feel it.
Sweet friend, your open and honest dialogue about Alzheimer’s and your relationship with your mom will not only help those who are in the midst of the disease, but those who will be and those who know someone who is or will be. It really does take a village, just like raising a child. I mentioned that both my Granny and my Step-Grandmother were diagnosed (never confirmed upon death), and now my mom is “exhibiting” some signs, but also suffers from anxiety, depression (mental illness) so hard to tell. Having others to openly talk with helps tremendously. I do worry about my dad as he insists on caring full time for my mother without “help”. His dad did the same and I saw the toll it took on my Grandad. As his only daughter, I have had to have those hard conversations with him about when he can no longer do it on his own (and I hope and pray it’s not when his own body gives out).
You are inspiring. Thank you. ❤️
Thank you for sharing! My MIL has dementia and alz,it’s simply heartbreaking. We were the best of friends for over 20 years! I saw the signs and encouraged the family to have her tested. Our biggest wake up was when I had our second daughter almost 9 years ago. She stayed home with our 3 year old daughter. When we got home from the hospital, newborn in hand. She had her bags packed at the door and asked where the nearest Nordstrom (HA) was, she needed new bras. Didn’t hold my baby girl or even stay for 2 min after we walked in. Insanity. Such a wretched disease. Much love to you and everyone suffering from this.
Courtney, Tonite, I thought of you & your sweet Mom. I’ve written to you before, but especially now with my Mom’s decline. We also go shopping & did today after a morning of sadness following a very bad night for her. It lifted her. Night time is the worse for her. I feel so protective & wish I could make this go away. But today especially, I wanted to reach out to you & ask questions. Then, later tonite I came upon your post! It was as if God led me to you. Thank you for sharing!! I’ve been Mom’s advocate for taking her off any mind altering meds & she’s on a lot for different health problems. I would really love to discuss this area but I understand fully if too personal.
Wow! Thank you for sharing. My parents both passed from cancer, I was 31 when my dad passed and pregnant for our 3rd child and 33 when my mother passed. My mom was my rock and best friend as well. I never went a day without at least one if not several calls to her. I definitely understand the pain of losing the communication and support of the mother/daughter relationship. You are an amazing daughter to your mom, and have a great strength and positive way of dealing with your moms disease. May God continue to give you strength!
As mothers, we can only hope to raise daughters who are as loving and committed as your are. Both your mom & dad are very lucky. Much love & respect to you and your sister for all you have endured – and with a lot of grace. I’m praying for your entire family during these most challenging times.
Thank you for sharing! My maternal grandmother had Alzheimer’s for over 20 years. I’m wondering if my dad is exhibiting symptoms. You look so much like your handsome father! Does she realize he is gone?
Ellen from Ask Away Blog says
I volunteer with Pixie my Chihuahua for pet therapy. Every week one of the places we go is the place right up the road which is an alzheimers/dementia home. I love the residents I visit and ive learned a lot. Hang in there <3. We need to educate ppl more and understanding it and being more compassionate to people who (and whose loved ones) are suffering from it.
Danielle Woodruff says
Thank you for sharing this. I’m sure it was difficult but also therapeutic. I watch your stories and you are such an amazing daughter. I think about you often on Tuesdays. I have a grandmother with memory issues. Nothing defined yet, but this is good information to have if/when she ever gets the Alzheimer or dimensia diagnosis.
My gorgeous friend, you are changing and supporting so many lives through your experience, your heartache and struggle and this precious blog of yours. Thank you for always being so real and so honest – you are an amazing woman x
Thank you for sharing all of this great information. My mother passed away at age 81 almost three years ago. She was in a memory care facility the last 2 years as my father had passesd away when I was 16. She didn’t know who I was for the last year, but I would talk to her and hold her hand each time I was with her. She really couldn’t communicate, but I know she felt loved. She also loved her stuffed animals. You are doing a great service talking about this awful disease. Thank you
Lisa B says
I follow your stories and your choice to share this is so brave. Although I do not have anyone with Alzheimer’s, I know that you are helping many with your honest and open account of what this road is like. xo
Megan K. says
Thank you so much for sharing. My mom is in the same situation. (stage 6 and my father passed away 2 years ago). This is so hard. Your posts have inspired me to set a regular date with my mom. I do see her often but it always seems to be to help or fix some emergency. I want to make sure that I take the time to appreciate where she is now. Have you joined any support groups (online or in person)? I have not but I’m sure it would be helpful (reading your posts shows me how nice it is to “talk” to someone who understands).
Thank you for this post! My mom is 63 and she was diagnosed with early onset Dementia in her mid fifty’s. The emotions that come along with this disease are indescribable. As a daughter whatching her mother go through this, it truly changes your soul.
Hi Courtney! I’m new to your reader group. But I just want to say how important a legacy journal is. My dad was diagnosed with early onset Alzheimer’s when he was in his 50s. My sister had him fill up a legacy journal which took him quite awhile to complete, but he did most of it. He unexpectedly passed away 9 years ago not due to the Alzheimer’s but because of a hemorrhagic event in the brain. He was just turning 63 then. We were all taken by surprise. Never did we think he would be taken away just like that. But the journal has been a source of comfort. Reading the journal, even after he’s been gone for 9 years, still brings tears, if not real bad crying, to my eyes. He would have been 72 years old this year. I am deeply saddened that my children don’t have their grandfather’s insight and wisdom to go to, but his journal and seeing his handwritten desires for all his grandkids brings some comfort. I pray that you continue to find comfort each day as you miss your father, strength to take care of your beautiful mom, and the intentionality to savor every minute of every day.
I have been watching your Tuesdays with Mom instastories for a while now. I’m not sure how I even stumbled across your feed, but I am so glad that I did. Everytime I get to the end of the Tuesday stories, I pause and pray for your mom, you and your family. I also praise Him when it looks like she is having a good day. Thank you for sharing this difficult journey with the world.