Hello, sweet friends. The other day on Instastories I invited you all to ask questions about our journey with Alzheimer’s. I was blown away with the amount of questions I received. It made me realize that there is a conversation to be had and I am more than happy to have it right here. There were far too many questions to answer in one post so I will plan on adding to this page week by week. I can not offer you expert advice, but I can offer you our experience.
While I am furious about what this disease has stolen from my mom and my family, I am intent on sharing my mom’s story so that she can continue to impact lives in this world. While this disease may not directly affect your family, it may in fact hit close to home for one of your friends. Please feel free to pass this along. We are all in this together and need a strong support system.
Your questions are always so heartfelt. At every stage I have sought out others who can relate and understand. I have been thirsty for answers and for guidance. I hope that this offers you even a small amount of encouragement, support or knowledge.
How long has your sweet mom been on this journey? How old is she? Worried for my mom.
My mom is 76 years old. We first started noticing symptoms when she was 67. To think she has been on this journey for over nine years is unbelievable. My children were 1 and 3 when this all started to unfold. Just babies. It breaks my heart that they never knew Grammy at her best. But their bond has always been strong. If you have recently been given a diagnosis for someone you know, this post may help.
my daughter with grammy
What were the early warning signs your family and mom experienced?
Without a doubt my mom was more forgetful, but it really was the way she attended to a conversation. Or didn’t for that matter. My mom was the most attentive person I knew and our conversations were always authentic and real. She gave the best advice and was so devoted to our happiness. We were sitting outside of Nordstrom and I started telling her a story about the children but she seemed uninterested, it was frightening. And devastating. She seemed elsewhere. The opposite of her usual supportive and caring personality.
Does your mom like to hear memories or is that frustrating for her?
I can remember going to lunch with mom roughly two years ago and when I told her stories about her past she loved them. She would light up when I spoke about her dad. While she didn’t quite put it all together, she was impressed and happy that I knew him, too. She no longer connects with stories from the past.
There are days when I do tell her stories and she may laugh or think it’s funny but she does not have a personal connection to the event. Even when I tell her stories about my own children and things we are doing there is little to no reaction. Because she can not truly carry on a conversation, it is often difficult to keep her happy or entertained. That is why shopping at Target and looking at thing is so fun for her. It brings our her best and gives her some of her independence and dignity back.
Does your mom have any angry outbursts as a part of her journey with Alzheimer’s?
Oh my, yes! My dad told me stories of how she would throw her shoes at him. This is a woman who never said a bad word in her life and never raised her voice to me growing up. She lets a few choice words fly now and my kids can’t get over it. We all read her extremely well and can sense an outburst a mile away so we are constantly training in the art of distraction. A dear friend once told me it’s like being an improve actor. You have to take whatever she is tossing her way and spin it to keep things joyful.
The major outburst (we had one last Saturday) is when it comes to showering. She refuses and does not like water of any kind now. It makes her extremely uncomfortable. Even washing hands. You can only imagine trying to bathe someone who doesn’t want to be and can’t communicate. It’s heart wrenching. And yet understandable. It’s the most vulnerable you can be and you are no longer capable. The caretakers at my mom’s new home are absolute saints in my book. It is incredibly challenging.
What’s the best way to support a spouse whose parent is beginning this journey?
I really appreciate this question. Surely everyone handles this differently but I can honestly say that the best thing my husband has done is to be there. To listen, to let me vent and to let me cry. This journey is a roller coaster of emotions. There is no getting around that. But he doesn’t belittle my concerns or fears. The other invaluable thing he offers is teamwork. I often get so overwhelmed thinking I am responsible for mom and her care. I wrongly take that on when I know I have my sister, brother-in-law and husband. So when he reminds me that we are in this together it’s like a 100 pound weight gets lifted off of my shoulders.
As the disease progresses it’s very difficult to manage being a mom, spouse, friend and daughter. It’s like worlds that don’t really fit are colliding at once. Understanding that you need time away from it all is also so important. Offer that escape every now and then with a date night, a long hike, a trip, etc. The mind and heart need some room to just be.
Have you been told what sage she’s at? How many years since diagnosis?
We are more than nine years into this journey. My mom is now in stage 6 (known as severe decline).
The following is from Alzheimers.net
People with the sixth stage of Alzheimer’s need constant supervision and frequently require professional care. Symptoms include:
- Confusion or unawareness of environment and surroundings
- Inability to recognize faces except for the closest friends and relatives
- Inability to remember most details of personal history
- Loss of bladder and bowel control
- Major personality changes and potential behavior problems
- The need for assistance with activities of daily living such as toileting and bathing
- Wandering
She still gets around great! In fact she walks non-stop and never sits down. It’s difficult in the sense that she will not sit and relax. She will sit down to eat her meals but when she is done . . . she’s done!!! And on the go again.
When did you realize that your mom needed to be placed in a memory care facility?
Another great question. And rather complex. Knowing that my mom is stage 6 and what that entails makes it easier to understand the need for around the clock care. My dad was taking care of her full-time in their home. It was far too much for one person but he insisted and loved her unconditionally. He devoted his life to her. When my dad unexpectedly passed away (brain aneurysm), my sister and I were facing our biggest fear. We had always said, “What if something happens to dad?” My mom was no longer safe without 24/7 care and it wasn’t realistic to bring her into one of our homes.
Raising a family and not being able to be with her at all times would not have worked. We knew she needed to be with expert caregivers who had the resources and knowledge to give my mom the care she needs. She has weekly visits with the doctors, around the clock nursing care and the most loving caretakers. She has the freedom to roam around the property and is safe. That is priceless. As I mentioned before, she does not sit. Ever. She can wander the halls, sit in on activities and most of all, everyone that works there loves her and understand her needs.
Any tips for the guilt of having to place a family member in a home?
This question strikes right to my heart. I don’t know the answer. While I know with every fiber of my being that she is in the right place, it is extremely difficult. You feel like you have failed in a way. Lately I have been giving it up to God and accepting that I can not control the situation. I just pray that each time I am with my mom I have the strength to meet her right where she is and bring her joy. I have to come to terms with the fact that it’s not all rainbows and sunshine. She has bad days. She has bad moments. But had those with my dad, too. You have to do what’s best for your loved one and for your own family.
A few years back we were at one of my son’s baseball games and I was crying talking with my dad. I was so worried about him and just so sad that their lives had taken such a drastic and difficult turn. Being the rock of our family he was trying to console me and said, “Court. Mom and I have been there. We’ve done this. We’ve done the soccer games, the volleyball games, the college send-offs. It’s your turn. You have your family. You need to enjoy them and do this with them.”
So I often hear those words when the guilt creeps in. This disease is awful and there is no handbook for how to handle it all. But I hope you take heart in knowing you are not alone in the struggle. All of it.
Lessons to be learned.
I truly believe that my mom is teaching us so many life lessons right now. We are learning patience and to slow down. My children are learning that having compassion comes from deeply feeling the hurt and wanting desperately to bring joy. We are standing at the ready to learn all the lessons.
Thank you for your questions. I will continue to answer them in this post.
Learn more about our journey here.
Oh Courtney, I feel your pain. My mother passed away seven years ago after an 8-9 year battle with Alzheimer’s. She was also physically handicapped, to make matters worse. My dad insisted on keeping her at home, neglecting his own health in the process. We were finally able to get in home care assistance for my mom, but honestly, that comes with it’s own issues. Having read your previous posts, I can relate to many of the things you’ve described. I first noticed that my mom was not able to follow a phone conversation and I found myself keeping conversations very simple. My dad realized she was forgetting to pay bills. We brought the subject up with her doctor (who actually brushed it off, much to our surprise) and she got very angry with us. My dad was devastated by her decline and constantly looking for ways to ease the symptoms, seemed like they tried every new medication available, and unfortunately nothing really helped. My dad was an extremely devoted caregiver, but also by nature a very anxiety ridden person, so my role, as it felt like, was to talk him down off the proverbial ledge on a daily basis. While all of this was going on with my family, my husband’s dad was battling another form of dementia, with very similar family issues. Our kids were very young when it all began and teens when both grandparents passed away. I know they missed out on some experiences with their grandparents, but they never complained. I try to remember to look for the lessons these experiences are trying to teach us. I think the challenge is to accept that we can’t fix everything and some things just are what they are. Such a difficult journey to go through, it’s good to talk to others in similar circumstances. Remember to take time for yourself, too! Prayers for your family.
Courtney, please know that your dear mom and all her caregivers are in my daily prayers.
Courtney, thank you for sharing from you heart. It is a difficult journey, and one that is unique for each individual on it. However, there is also a lot that is the same. Knowing others have been there, or are there, is comforting. It’s not about having all the answers, but rather being able to relate on so many levels.
While I don’t currently have any direct experience with Alzheimer’s, I just want to say how much I appreciate you sharing your story. Too often there is a stigma against talking about the hard things in life; your honesty and openness are refreshing and beautiful. And the love and compassion you show your mom is inspiring.
Thank you for sharing this! Caregiver burnout is real, and when I worked with families dealing with aging family members, we frequently saw the healthy spouse decline even more rapidly than the sick one. Respite care is so necessary, and I never judge anyone for having to make the decision to place a family member in a facility when that time comes. All the reasons you list make so much sense: 24-hour care, doctors, safety, and trained help who can assess the needs objectively and offer solutions. Your dad was absolutely right that this is your time to raise your family and make memories. You can still care for your mom and spend time with her without burning yourself out.
Dear Courtney
Oh sweet girl. You are such a blessing to your mom and to all those who read this. I was blessed with a mom who passed at 103 with all her mental capabilities but disabled physically. But Randy’s mom was diagnosed with Alzheimer’s at 70. My father in law finally couldn’t care for her anymore so she went to a board and care facility at 80. It was so hard for him. It’s a horrible disease and I pray for you and your family. I have such fond memories of your folks at 9am mass for so many years. God bless! Nancy❤️
Hi Courtney, thanks for sharing your story.
My dad has had Alzheimer’s for about 12 years now. It’s been a long journey. He is otherwise very healthy. And his mom is alive and well at 103 year old!
My mom has faithfully cared for him all this time. He is a wanderer and talks non-stop. He doesn’t just talk, he asks you questions, the same questions over and over again. If you don’t answer or engage in conversation he ups the game, talking louder, repeating or just gets up and tries to leave. It can drive you crazy!
After so many years of this my mom was exhausted. Plus he was wandering more and more. We finally put him in a home. So for 8 months he was in a locked facility. We have a studio in our backyard that we turned into a little apartment. So now my folks live in our backyard. It’s secure so my dad can wander around out back and be safe and we are here to help my mom deal with him.
Our last two kids are at home and don’t know who my dad really was. It breaks my heart sometimes. But they are very compassionate kids and they deal so well with him. They know that we are all on “Papa patrol”, and they help take care of him. It’s not what I would want for them but God can bring good from this situation. They are turning into really great people. My husband too is so kind and caring. He lets me cry when I need it, encourages me to get out for a little while and is always there giving his support.
You and your family are in my prayers always. Thanks again for sharing, it is nice to know that others understand and care.
I think of your mother often. And know that all the love she gave you is now being returned to her. Your dad was right, it is time for you to experience the joy of raising your family. I tell my children the same as they take time to help me on my own health journey. You are handling this with such grace and compassion, your dad would be so proud and in awe of your undertaking. . I know I am. With much love…
I am so deeply moved watching your instories of you and your mom. I can only imagine what an incredibly difficult journey it must be for you. All we can ever ask in this sweet life is that we have someone to love us through it. Love us through sickness, illness, debilitations, and all life’s challenges in between. Your mom is a lucky woman to have you love her so sweetly, unconditionally, so purely through the journey.
Wow,,your story brought back a flood of memories for me. If you can imagine, both my mom and my dad had alzheimers at the same time. I left my job to look after them and try and keep them in their home for as long as I could, I have the most supportive husband and the most understanding kids. It was heart wrenching and I shall never forget the day that mom and I were standing in their bathroom in front of the mirror and she looked at herself and said she didn’t know who that woman was. I guess she didn’t recognize herself at the age she was then. And then the real tear jerker after that, I asked her if she knew who I was (I thought for sure she did!) and she had no idea who I was. I balled my eyes out. It’s a very long sad story to tell dealing with the two of them. No help from my sister at all. I finally had to put both of them into a nursing home and it was the hardest thing I had ever done in my life. Anyways..they are both gone now. Mom in 2007, Dad in 2010. I can honestly say that I would never wish them back in the condition they were in. That would be for selfish reasons. If I could see them one more time, it would have to be only if they were “pre-Alzheimers”. You sure find out how strong you can be during those heartbreaking times. Just keep doing what you’re doing !
As a side note, I was wondering if you’ve noticed the sparkle gone from your mom’s eyes? Like an empty look. I found that very difficult as mom had always been such a firecracker and to see this lost, blank look in her eyes was terribly sad. Another sad moment was before her alzheimers progressed, I can remember her being very aware that something was wrong with herself and her being so frustrated. She had always been a good cook and I then I started noticing that she’d have a cook book out to make something very simple (like devilled eggs, for instance ). She also thought she heard kids in her basement talking and she would take me down there so I could hear them. Of course, there was nothing there. Such a sad devasting disease for “everyone” involved.
I love when you post about your mom and openly share the struggles caring for an elderly parent. You are kind, loving and doing your best to enjoy the little moments between the chaos.
I watched my mom care for my grandmother while she went through memory loss and the ability to care for herself during middle school and high school, and at the time didn’t quite understand how hard it must have been. Now as an adult I realize the tremendous amount of strength that must have taken for her to do so while her marriage was also falling apart.
Thank you for sharing your story.
As always, this post was beautifully written…honest, raw, encouraging, and full of love for your mom. Your posts and instastories speak right to me, as our moms are at the exact same point in this journey, and I always feel less alone after reading your thoughts on the challenges and joys we encounter as the disease progresses. Wishing you and your mom some calm and joyful weeks ahead.
Courtney, I give you 100% credit for sharing your mom’s story so openly.
One thing I hope you will discuss is the cost of memory care. I know that it is a sensitive issue for many. Before my mom died last fall, I was beginning to look at that option. In my area, memory care at an assisted living facility is $6k+ per month, so $72k per year not counting any special services. My understanding is that a person with dementia or Alzheimer’s would only qualify for Medicaid at a nursing home if there is another underlying illness like COPD, heart disease etc. Having dementia or Alzheimer’s disease isn’t “enough” of an illness. The costs of memory care can be devastating to families, particularly if a spouse wants to remain in the family home.
Wow, wow, wow…..I have been reading your blog for many years and have been following your mom’s journey with alzhemiers on Instagram stories. I love seeing you shopping together and I can feel the love, patience and compassion you have for your mother. I fortunately do not know of anyone with alzheimers, but have been so intrigued reading about your journey and what you and your family are going through. Thank you for sharing these personal stories and feelings. It has been very eye opening and also inspiring. There is no doubt that your mother is in wonderful, caring hands and I am sure that she feels the love from you every day. I will continue to pray for your mother, you and your family. God bless.
I stumbled on this while reading Bloglovin, and it couldn’t have come at a better time. I am 59 and my one and only sibling, my sister who is 68 , is currently undergoing testing for what now appears to be depression induced pseudo dementia. Of course there are no definitive answers regarding her exact diagnosis. My niece is finding herself in the same situations as you have described, and I will be encouraging her to start following you. You write so eloquently about your experiences with your mother, I think we will both be interested in any future posts regarding this terrible disease, not to mention all your other posts (I love your beautiful home and I totally enjoy your amazing fashion sense even though I am way too old for the styles you wear☹️) Thanks for the loving way you are telling your story as well as your mom’s❤️
Courtney,
I am so sorry that your mother has this awful disease. I work in a nursing home and specifically with dementia residents (Alzheimer’s is a form of dementia). As a paid caretaker I support your decision in your mother’s living arrangements. It is one of the most difficult decisions to make, but it gives you the opportunity to be her daughter and friend 100% of the time. As a paid caretaker, I can take care of the details (like showering) that can bring heartache to you.
As you continue to love and visit your mother, know that she is there. She may not be able to verbalize, recognize or engage with you, but deep down she is still your loving mother.
Many blessings to you and thank you so much for bringing this subject to the attention of others.
Mary Ann
Dear Sweet, genuine, loving Courtney,
Your love shines through every word and picture. Thank you for being public with the journey your family faces. The information you share has helped my husband. His mother had dementia although never diagnosed because she refused to see a doctor saying “I am not crazy”. He grew up with a mother who was very self-centered, vain and childish, consequently, he did not care for her. He was an only child and she used him as her pet. In her declining years, she grew more childish, or so we thought. It was your explanation of your Mother being drawn to toys and clothing for young children that helped. You see, his mother collected dolls and stuffed animals. When we cleaned out his parents’ house (we live 500 miles from them and they did not like our children with Down syndrome so we didn’t visit), he was disgusted with the amount of childish things on every flat surface. There were boxes and boxes filled with them. We did not know that reverting to childhood is a symptom. Seeing this displayed by your Mother and handled in a very loving way by you has helped dissipate his anger over her end of life childlike behavior. Removing this one aspect of his disappointment with his mother has helped. Thank you for it.
Thank you so much for sharing your story. My dad has Alzheimer’s and although we are still in the early to mid stages I see how this will all unfold. My grandmother had the awful disease too. It’s horrible. My strength comes from God and knowing that He will give us what we need each day to support and care for him as well as my mom who is his primary caregiver at this moment. The only way I can truly handle this is just taking it one day at a time. Thank you for being so real.
Precious friend – so many of these answers made me teary. You re so brave and courageous – and so incredibly amazing with your mama x
Love you Court. ????????????.
My father-in-Law passed away from Early Onset Ahlzheimers at the very young age of 60. Just 4 years from Diagnosis to death. It was a very fast decline and it was utterly heartbreaking. My mother-in-law has been a nurse her whole life and was able to keep him at home the entire time, but man, it was awful. And it’s such a hard disease to grieve! We want him back, but we don’t want him back as he was, we want him back as he was before diagnosis. My husband and I recently moved back to their hometown, and so many people in this area knew my FIL. It’s bittersweet to talk about him so often. We miss him so much.
Courtney-
Your writing about your mom is not only beautiful and loving, but very real. This is the face of Alzheimer’s and you sharing your story can touch so many going thru similar experiences. I am a therapist and work with dementia and Alzheimer’s patients daily. I just want you to know what a fantastic job you are doing! You are so correct when you say just be in the moment and love unconditionally! My mom had early onset Alzheimer’s in her 50’s and I became her primary caregiver. I was only in my early twenties at the time and I remember thinking at the time how unfair this was. My wonderful mom was slipping away from me and I was trying to hold on to her the best I could. Many people would try and talk me out of caring for her or going to see her regularly when she was in Memory Care. They would always tell me that she didn’t know me. I disagree, her heart and soul knew me! She may not of been able to say my name or know that I was her youngest daughter, but I knew her and I always wanted her to feel loved. When the time came, that she could no longer speak and was bedridden, I still went and massaged her legs and arms or put on her favorite music and told her stories that we always laughed about! I would not trade those moments for anything! You are truly showing the kind of loving and generous woman you are. It is easy to be kind, giving, and loving when everything is going great. It’s through these hard times that your true character shows. Wrap your arms around yourself and know that both your mom and dad are so incredibly proud of who you are!!!
xoxo, M
I feel so blessed to have found your Insta and blog! That you can share is so helpful to so many of us, I am just sure of it! When my mom got sick from this in 2009, I shut down. I stopped writing my blog and all activites other than work. And when I wasn’t working, I would spend time with her. I am so thankful for having that time. You seem to have so much support which is wonderful; I did not and felt like I was fighting the world. Thank God for my supportive husband, she adored him like a son and he could calm her down. I am so blessed to read your storey! I am praying for you and your mom 🙂
Hi Courtney,
Thank you for sharing this journey with your mom. How long did it take for her to acclimate to her memory care facility? We just moved my mom from her home to a facility here in southern CA (she has frontotemporal dementia), and I’m devastated. I hope she will settle in well there.