I never thought I would be writing about dementia on It’s Just Life.
But it is my reality now.
My mom who lives in Ohio way too far away from me has been on the dementia train for a while now and folks, let me tell you, it is tough. Really tough.
The part that seems to be the most difficult for me to handle is that my mom is living in two different worlds. On the one hand she has days when she is more aware of what is going on and hates “being in this place”. “This place” being the rehab part of the Copeland Oaks Retirement Community where she has lived for almost 19 years. At other times she is totally in a world that does not exist and she tells stories of sleeping by the water with animals. In that world she does not know who I am and she is cantankerous and grumpy. So totally not my mom.
The hard thing is that these two worlds can actually collide within minutes of one another so a visit can quickly turn from a nice calm conversation to a conversation that is completely false and imagined. And yet I have to play along and agree and not argue because that is not a solution for someone with dementia.
Each day is a new day and I am learning a lot about what not to say and what not to do so I guess that is good. Sometimes I look at my mom and wonder if there is any bit of her still in there that is the mother that I used to know. Then she says something that tells me that she is. Sometimes it is just a memory that pops up but the most encouraging thing is when she hugs me when I leave and tells me that she loves me and is proud of me. THAT is what gets to my core and reassures me that my mom is still my mom.
One of my new friends introduced me to the Dementia Society of America when she did a fundraiser for her birthday to honor her mom. I checked them out and found that they offer a lot of great information and resources. They have an amazing Aware & Share Card that I sent away for and am happy to share with my readers. To get your own simply click here and you can request your own.
I think these cards are genius. They are a physical thing that you can leave with your loved one to give others a heads up on how to respond in a situation where they may not know how to respond. It is all basic things that I have learned over time.
We are all on a journey in this world and sometimes our journeys take a little unexpected turn. I know my mom never thought this would be the journey she would take. As a fiercely independent woman it is so difficult for her to accept that she can no longer do what she used to do and has to rely on others. While most of this is for safety concerns she does not understand that and even though we repeatedly remind her that it is only so she stays safe she gets upset. The journey at this point is bumpy but I know that she will make it. The challenge for me is to just figure out how to accompany her on this journey and be helpful.
If you have a loved one on a similar journey please feel free to connect with me. I find that we are stronger when we support one another. I am here for you.
Leave me a comment today and Comment for a Cause where each comment on It’s Just Life this month means a 50 cent donation to the Todd H. Bol Vision Fund for Little Free Library.
My sweet mom during my last visit in October. I got her to smile and it warmed my heart.
30 Comments
Leave a commentI loved to see your mother’s picture. Thanks for sharing and for sharing her/your story. Love to you and your family.
I love that you stop to see my mom when you are in town and sing with her. That warms my heart more than you know. You are a very wonderful friend and we are blessed so much by our extended family .
Such great information. This is such a hard journey. I think back to before my mother showed symptoms and seemed to be so sharp. I remember thinking how grateful I was that my mother would “always” stay sharp. She never knows me now and that is ok because it has to be ok. I know her. I sit with her and hold her hand and tell her that I love her. I have a friend whose mom recently passed away. My friend told me that she is grieving for the woman her mom was, but also grieving for the woman her mom with dementia was. She said that she had grown to love that woman too. When I leave my mom after a visit, I always try to pray and ask Jesus to keep her feeling secure and comforted and to hold her hand. Love you friend and walking with you.
Your help on this journey has been invaluable, my friend. Your strength and example of the love of a daughter has been my example so often–you have loved your mother through it all and I totally understand what your friend meant. There are so many who walk this path and writing about it helps me somehow. If only so that others can share their thoughts with me as well –we are a community that supports one another and it is so good to feel that support come across in comments. Love you.
Praying. I can’t imagine. Love you.
Thank, Robie. WE are all working through the journey in our own ways but the Village is strong! Thanks to all of your family for the prayers.
So glad you were able to connect with someone else who is going through the same thing. Can’t imagine how difficult it can be to take this journey with your Mom. Prayers for you!
It does definitely help to have others who can share similar experiences. I am blessed to have found quite a few folks who have lived or who are living this at the moment with their loved ones. One day at a time.
Dear Beth Ann, I’m getting ready to spend the weekend with my sister, Kim, at my brother’s house taking care of our beautiful, strong, loving sister-in-law with dementia. Dean is going on a yearly hunting trip and much needed getaway from constant caregiving. It is heartbreaking to watch Gail slip further away. Her behavior would mortify her in the past but we just remember her how she was and deal with each thing that comes up. Kim is so excellent at helping that I take my cues from her. My other sister-in-law (named BethAnn BTW😘) and my brother, Joel, live nearby and help Dean the most. I thank God for my family and the love and support we can be for each other. You are doing great and a great service to others by sharing your experiences here. God bless you and your lovely mom!
Jill, thank you so much for sharing your own story. It does take a lot of support and love to get through the tough journeys that we are on with our loved ones with dementia and I am blessed that I have such a wonderful and supportive family. Your journey sounds very difficult as well and yes—my mom would also be mortified if she was aware of how she behaves at times. i keep saying to caregivers and staff “I wish you knew her when…” and they all understand that this is not who she used to be. We are so blessed to be able to have so many that do care for her in different ways and I am happy that she is getting good care. Just wish I was there closer. Thank you so much for your story—God bless you and your sister in law. So glad you could give some respite care.
It is so difficult to see our parents grow old and change. Dementia is cruel and difficult to deal with. As their children we need to be strong and patient. it is especially hard when we live so far away. The card with tips is perfect and I just love the picture of your sweet mom. Sending hugs.
Thanks so much, Darlene. Our family is learning so much of what to do and what not to do. Everyone has really stepped up and it has made us stronger.
Hugs. Our Aunt Vi had no dementia but as a similarly independent woman she hated having to rely on us and especially on the strangers in the facility where she spent her last year. It was very difficult for her and hence for us. You are right in your description of the bumpy road.
It is a really bumpy road and you lived it with your Aunt Vi. I know she was happy to have you caring for her even if she couldn’t’ express it. It must be the most frustrating thing to be trapped in a body and mind that no longer function as they once did. Thanks for the kind words.
A very hard road to travel, Beth Ann, for everyone concerned. It sounds to me like you and your family are doing the best you can. God bless you all. The picture of your Mom is lovely. Hold on to the good moments. <3
Shirley–thank you for stopping by and leaving your kind words. WE managed one day at a time and I know that it is a journey indeed.
Oh so good to get that smile from her! The journey your family is taking is difficult but God is granting you the grace to understand it and do your best to keep going. That resource card is wonderful and aspects like that are placed in your path by God’s hand to help you along.
It was a great smile, wasn’t it? The resource card is a real gift. Sometimes you “know” things but it helps to see them in print to be reminded.
Sending lots of love! Her love for you shines through so clearly, even when it pops in between tougher moments. I truly believe our loved ones are always with us in some capacity.
I truly believe that as well, Jeni. I cherish the moments of clarity and cling to those.
Prayers for your entire family during this journey. What a great resource you have found though. Thanks for sharing to help others.
Thank you so much for those kinds words and prayers, Val. I appreciate them more than you can know.
Thanks for continuing to share your story. Your experience and wisdom are very, very helpful. Continued prayers as your journey continues.
Thank YOU for your continued support and concern across the miles. It is so appreciated!
What a wonderful and outstanding post about dementia I believe that the party we love still comes shining through.
Thank you, Laura. I agree—the parts of my mom that I loved are still there and I see glimpses now and then.
What I love is your always positive attitude, no matter what life brings. And I love that you continue to see your mom even when it appears she can’t be seen. Those hugs are the reassuring physical act that continues to link you in love. Know that you are not alone in this journey, Beth Ann. So many of us are dealing with this aging of our parents and it’s not easy.
Thanks, Audrey. I try to remain positive in all things and I do know that the world she lives in now is very small and she feels that she has no control. That has to be maddening. I know so many like you and I who are not close to their loved ones and who have to be content with others taking care of their loved ones. It is definitely not easy but we try to be in the moment when we are there.
((empathy hug))
Tell her I said “What a pretty, lacy sweater!”
I will! I got her that sweater and I think it looks so good on her. Thanks for the comment!