My mom has dementia.
Last week I was able to spend some really nice time with my mom and it was just what I needed. I also think it was what she needed.
I have shared with my readers previously that my mom is in a memory care unit at a facility in Ohio. Her diagnosis of dementia was made several years ago and we have watched the progression as she moved from independent living to assisted living to her current memory care unit apartment.
Dementia is gradually taking my mom away from me but I am determined to hold onto her as long as I possibly can.
Two of my siblings, my brother in law and one of my nieces came one afternoon to visit and to have a pizza party with her. She seemed to enjoy the pizza but anytime there are more than a couple of people around she retreats into herself and becomes quiet. I have noticed this becoming increasingly the case over time and I think she gets lost in all of the conversation which is kind of understandable. We can be kind of overwhelming when we are together. In a good way but still. To someone who is struggling it must be just a bit too much.
The day after the pizza party I went back to see her late in the afternoon. Yes, I had told her I was coming and yet she had forgotten. When I left I repeated that I was coming back to spend the entire day with her the next day and she was thrilled.
When I arrived the next morning she was laying sideways on her bed. The staff had warned me that she was sad when they got her up in the morning and crying so I was prepared when I entered her room. But maybe not prepared enough.
Sometimes you just have to do what feels right so I just laid down on the bed next to her and started talking to her. I have to admit it was really hard to see her looking so frail and distant but after she realized it was me (and yes that is a gift) she told me she was sad because she didn’t think she was going to see me again. I assured her I was there all day and she couldn’t get rid of me.
Her air conditioner unit was not working correctly and the maintenance man came to repair it and so I repositioned her on the bed and laid down beside her. We spent an hour that way and I just continued to talk to her and we had a really nice visit.
Dementia is such a weird thing. It slowly robs the individual. The official definition is as follows:
Dementia is not a specific disease. It’s an overall term that describes a group of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person’s ability to perform everyday activities. (www.alz.org)
I have learned a great deal during this journey with my mom and am still learning. Every conversation is new, every day brings a new challenge and I have learned to accept the changes a little bit better each time. Here are a few tips if you have someone you love who is on the dementia journey.
- Just be present for them. They may not remember the next day or even the next hour that you were there but I truly believe it makes a difference in the moment.
- Try to refrain from saying “remember” . This is a tough one because it is a natural part of our vocabulary. Sometimes when I share with my mom I talk about things that I remember from my childhood with her and she enjoys hearing those stories even if they are new stories to her.
- Touch is so important and I never miss the chance to hold her hand or just have a hand on her arm when we are together.
- Sharing pictures of what I have been doing or of the family always perks her up. I am making a Helen’s Family scrapbook with simple pictures of the family with names so that she can have that on her coffee table to pick up and look at when she can’t remember who is who.
- Even if the story that she is relating sounds off the wall and impossible don’t disagree and indicate that it didn’t happen. Just go along with it and affirm that the story is real to the person. It does no good to disagree and usually only aggravates the situation. It is very real to the person and just listening to them relate it time and time again is what is important. I do try to redirect the conversation as quickly as possible if the subject is upsetting to her.
- Talk to the staff. They are trained to know what to expect and what is best for your loved one. They are a valuable asset and it is important for your loved one to have staff that is engaged and who know that the family is engaged as well.
I am not an expert by any means but I do know that so many are on the same journey that we are on with my mom. It’s not easy but I am blessed with each phone call and visit. I still have her and I still need her. Our roles have changed a little bit but she is still my mom and I love her. I miss the way she used to be but I am embracing and loving the new version just the same.
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This is so hard for all of us. Your tips are right on. We have decided to spread our visits out so we aren’t all there at once as mom gets overwhelmed also. Mom worries so much about us and is often convinced something bad has happened to one of us. My son, bless him, drops everything and sits with her and tries to convince her we are all OK. I assume this is because of years of worrying and also because she did lose my brother all those years ago. But usually, the staff tell me, she is in a happy mood and always smiling. I can’t wait to see her in December when she turns 90. Sending huge hugs to you and your dear mom. xo
It is a learning experience that is for sure. And each visit is different so I have to adjust a bit eath time. But I am so blessed to still have her with me and I do cherish those visits and wish I lived closer. Thanks for sharing about your mom as well. It helps to know when others have similar experiences. And how exciting she will be 90! My mom will be 89 in November.
I too wish I lived closer. But we Skype when my aunt visits her, about twice a month and it’s good to see her sweet face. Like you, I feel blessed to still have her.
You are loving your mom so well – a reflection of how well she loved and loves you! It is an impossible thing, but God is the God of the impossible! Love you!
But you, my friend, are my hero when it comes to showing what true love for a mother is. YOU have been on this journey far longer than I have and have shown such love and grace and compassion to your mom. Thanks for being such a wonderful example.
You are too kind! I am sitting here with my mother. She is eating an ice cream cone and telling me that she is hungry and wants to eat!
A sense of humor comes in handy!
A sense of humor is definitely in order. My mom was relating a story about sleeping in a box this last visit. I have yet to figure that one out. 🙂
Poignant post, Beth Ann. I shared your post with a friend whose mom has dementia. Even when people with dementia lose cognitive function, they still have feelings—happiness, sadness, etc. Your visits are surely a comfort to your mom.
Thanks for sharing my post with your friend, Laura. That means a great deal to me. We all deal with things in different ways but I am learning the best way to deal with the changes in my sweet mom. It is not always easy but we love each other so much and that is what gets me through. Thanks again.
Your compassion and understanding will hopefully serve as a loving guide to others who are going through this with a loved one.
It’s so difficult, both my mother in law and mom went through the struggles of dementia and the ordeals of Alzheimer disease. Thanks for sharing your story and journey.
Ozzie, thank you so much for sharing your experiences with me –it is definitely a journey but one that I am embracing . I think we all manage to find strength somewhere (God given) when we need it most and I am so grateful for that.
You have great insight in to your mother’s needs right now. She is blessed to have you as a daughter. It is one tough journey that has many warm and spots also, Blessings and prayers for you both as you travel this road!
Thank you so much, JoEllen. You know first hand how this journey can have twists and turns along the way but I just keep on loving her and know that that love with get us both through.
What a blessed lady she is to have you for a daughter and her family to love her through this difficult stage of life. I know of others who have experienced dementia in their families and they didn’t handle it as lovingly and with the understanding that you have. I’d say you both are blessed as you experience this new reality and God will bless your times together.
Thanks so much for your sweet words. It definitely is a difficult thing to watch our loved ones deteriorate before our eyes but love conquers it all. She will always be my sweet mama in my memories.
Your mom is such a blessing. It was difficult but I’m blessed we didn’t go through this with my mom. Hugs
Thanks, Robie. We are all on different journeys but it does not change our love for our parents one bit. Thanks for stopping by.
I am in tears. I know how difficult this is for you. But the part that made me cry is that you decided to lie down next to your mom and talk. That just melted my heart. What a right and comforting act of deep love. Beth Ann, I appreciate your insights which I will use in dealing with my mom’s increasing memory loss. Many hugs and much love.
I always wonder about hitting “publish” on posts like this but it is so therapeutic for me to write it down and share with others in hopes that it touches someone else. I have heard from several who can really identify with this subject and it makes me know that there is a time and place for me to share these thoughts and experiences. I do love my mom and it hurts to see her floundering but then there are definitely still a lot of moments of clarity and I cherish those. Thanks for you sweet words.
My Grandmother recently got an Alzheimer’s diagnosis and many of the symptoms you’ve talked about I’ve seen too. It’s SO hard to watch and see. Lots of love your way and prayers for strength for your family..
Prayers and love coming your way as well, Julie. There are so many who are dealing with this and it helps to know that others understand and “get it”.
Thank you for sharing the ways you can still enjoy being with your mom. We can be your support group for you.
Although my sister was able to see my dad almost everyday, she did find it helpful to attend a support group with others at times. She looked for one where she felt comfortable with the leader, not necessarily where my dad lived.
Thans for sharing this, Beth Ann. When my mother was nearing the end of her life and struggling with dementia, my sister saw her most days. Unfortunately, I live on tbe other side of tbe world so saw her only occasionally. She never recognised me but she did my sister. So I encourage you to visit as often as you can. Your mother will continue to recognise you and enjoy those visits too.
Beth Ann, what a beautiful blog. Thank you for sharing this precious time with your Mother. I feel she knows that her family is there and still love her very much. God bless you all. <3
Oh Beth Ann, this brought tears to my eyes. I am so sorry you all are going through this. The image of her laying there crying just got to me. But the image of you laying down with her brought back an image of me laying next to my Mom in her bed during one particularly bad night the last week of her life. It was bittersweet. You will look back on these moments initially with sadness but then you will come to think of these moments as a true honor. To care for an ill parent is, in my mind, one of the greatest things we can do in life. Sending hugs and prayers. ❤️
Thanks, Marci. I do consider it an honor and privilege to do whatever I can for her now and I really do try to be in the moment when I am with her. It is not always easy but my love for her will never change. Fortunately we have a very supportive family and the staff at Copeland is taking really good care of her so it helps me when I can’t be there in person.
Thanks for having the courage to make that post, I know it was probably very difficult to share. You are an incredible person. Your insights are definitely helping me get through this particularly difficult journey. Love you, little sis!
Love you, Mark. We have a very special family and together we will get through this journey!
Thank you for sharing your family’s journey through dementia. My step grandmother is really struggling right now. It’s really difficult to witness!
This is beautifully written, Beth Ann! My mom is getting on in years, but her problems are physical rather than mental. I don’t imagine many of us get out of here without some challenges. It sounds as if your family is doing all it can to keep your mom engaged and feeling loved — that’s important to all of us! Hang in there and rejoice you’ve found a competent, caring place for your mom to live. Sending all of you a virtual hug!
Thanks so much. We do feel like the staff really cares for her and she has had so many great years there living independently. It’s just another phase of the journey and we are all doing our best.
I hope we all have someone so loving to care for us someday in our old age. Love to you and your mom.
[…] care unit at Copeland Oaks in Sebring, Ohio. I got so many comments and reactions to that post (you can read it here) and I thank each one of you for […]
This is a wonderful article! You have shared great advice and suggestions!
Thanks so much, Delores. I appreciate your kind words.
I was just reading this and the date hit me in the heart because seven years ago on August 16th we were informed by Mom’s doctor that there was no more they could do and she needed to go to end of life care. I hang on to the posts about your mom because she is the last of Mom’s cousins still alive. I remember Mom was so fond of her and I always loved spending time with her when I got to. I wish as kids our families could have spent more time together because I know we would have been close. I pray for all of your village right now as I love each one of you and of course I am praying for your mom too! God bless each of you!!
Thanks so much, Coleen. We are all working together to make sure she has the best care that she can have. Unfortunately no one lives super close but Paula and Chris live about an hour and half away so they fill in the gaps. Sometimes we see glimpses of my mom – her sense of humor, her smile and her compassion and so we cling to those moments. Thanks for your prayers.