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
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.