Mother’s Day And End Stage Alzheimer’s Disease
Mother’s Day 2011 and End Stage Alzheimer’s Disease
By Lori La Bey of Alzheimer’s Speaks and Senior Lifestyle Trends
Mother’s Day was an interesting day with my Mother. Once again my preconception of what the day would be like was wrong.  In my mind I would go visit my Mother in the Nursing Home and spend some quality time together, with laughter and giggling. Today was different though.
My daughter Danielle and I went to visit Grandma together. When we arrived we noticed the label on Mom’s door had been peeled off and her name was in a crushed sticky ball on the door frame. At first we thought they had moved her to another room. The door was closed so I knocked and then peaked in to find she was being changed and so we waited in the hallway with my Mother’s melting McDonald Hot Fudge Sundae. Propped up against the wall Danielle and I waited patiently.  I envisioned her eating her favorite treat, the Hot Fudge Sundae. It was her favorite and we always loved to watch the pleasure she got when we brought one for her. Yes today would be a good day, or so I thought.
As Danielle and I entered the room we felt a light breeze coming from the open window. It was nice to finally be able to get some fresh air in her room and at my house too. Spring was finally here. Grandma was lying down in her bed sleeping. We both greeted her, but got no response. No words were spoken. No eye contact. No giggle. No movement of any kind. Grandma just lay in the bed still. Danielle changed the music playing on the radio to classical. I pushed the remote button at the end of her bed and told Grandma I was going to raise the bed so she could eat the Hot Fudge Sundae we brought. Still no response, not even as the bed rose.
I read Grandma her Mother’s Day card and put it close to her ear so she could hear the message Danielle recorded on it along with the music it played. Still, no response.  The Sundae was melting and so I took a couple of spoonfuls of the slosh to try to avoid spilling on Mom. The next spoonful was for her. Mom’s lips were shut tight and she was not about to open them. I thought for sure the cold on her lip would get a reaction but nothing. I tried again with the same reaction. NO RESPONSE.Â
Danielle and I looked at each other in shock. This was very unusual. In fact, we had never seen her turn down a sundae. Without speaking any words, I knew Danielle was thinking the same thing, “Now what?” That was the one thing we knew still brought her pleasure. Danielle was very calm though, which I was grateful for. She works as an activities person at the assisted living attached to the nursing home. Out of what seemed like know where Danielle said,” Oh Grandma’s just having an off day. She must be tired Mom.” It was so nice and comforting to have her reassure me! It was so nice not to have to feel I had to be the one to put a positive slant on things.  I could just accept things for what they were.Â
As the sundae continued to melt, I had a couple more spoonfuls and then tried again to feed Grandma. It wasn’t going to happen. With a dry towel we wiped the ice cream and fudge from grandma’s lips and I slowly finished her sundae with a heavy heart.Â
Danielle and I stayed a bit longer. I joked with Grandma, that she must want me to have her sundae as her Mother’s Day gift to me. I got low and have a sleep “yep” out of her. Danielle and I laughed. That was our moment to capture that day. Nothing big, long, or outrageous; just a”yep” was all it took to make our day. Oh and the growl which turned into a two second giggle when I was putting some lotion on her arms. I thought I had warmed it up in my hands but apparently not enough! The growl shifted to a giggle as I apologized for the cold lotion and then Danielle and I both giggled. She picked up on our mode and giggled with us.
Later that day my brother Mark called me to wish me a Happy Mother’s Day and to tell me he went up to see Mom. He too brought her a McDonald’s Hot Fudge Sundae…no nuts. He said he feed her like a baby bird. She was happy and content, even though she couldn’t say his name, which he so longs to hear, Mark made her day and mine by calling and letting me know Grandma was connecting again.
Once again, I was blessed with the small simple pleasures life offers. Filled with gratitude I bent my head and thanked God for these beautiful gifts wrapped in aging and illness.
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This is so heartwarming and at the same time sad to read. I felt as if I was reliving that same day, years ago with my mom. Thank you for sharing this beautiful, poignant story Lori. Your daughter is beautiful, just like her mom and grandmom.
Hi Emily
Thanks so much for writing. It is always good to hear others thoughts. I hope you are having a wonderful day!
Lori
I’d like to share my Mother’s Day experience with you. I am at the stage in my life that I no longer buy Mother’s Day cards because my mothers have passed away. My mother died 16 months ago from complications from Alzheimer’s and my mother-in-law passed away 1 month ago after a long battle with cancer. After I lit candles to honor them both, I jumped onto Facebook to invite our friends to view: Alzheimer’s: A Mother Daughter Journey. Yes, I did sell some books but more importantly I received beautiful notes from friends whom I’d know almost as long as I’d known my mother, and complete strangers who were touched by my compassionate story. They shared stories about knowing my mother as a young, vibrant woman and some even shared stories about their own personal challenges parenting their parents. In short, it was day that had the potential of being sad, empty and motherless. Instead, it turned out to be full of joy as we all shared stories and photos of the women who helped shape us.
HI Celia
Thank you so much for sharing your thoughts. I so appreciate you comments.
Lori
Thanks for reposting the post!
Lori
I have so many questions that I need answers to. My mom has alz. She is in a nursing home (which we said we would never do that to her) after she fell and broke both her wrist in Aug. 2010. Well my dad couldn’t take care of her by himself so we did what we had to do. Anyway one question is why do the patients kind of stop eating? My mom for the last month has had 5 days of eating one meal at 50%, and maybe during the rest of the days only about 25%, is this normal. We try to have her eat more, but she refuses, spits it out or just gets mad at us. I understand the anger and frustration of dealing with this, I do pray and ask God for guidance on how to deal with this everyday, as i know there is no cure or that she won’t get better. That is my one biggest
Hi Tina
Thank you so much for writing. Where are you located? If you are close maybe we could meet. If not, well I’m happy to assist you by communicating through the blog or even talking by phone. The not eating thing is very common.
There can be many reasons for not eating. Behavioral, truly not hungry at meal time… could be her body doesn’t require as much food as it used too, to she has forgotten how to chew and swallow, to she has had snacks prior… to she doesn’t like the taste, texture, smell or temperature of the food, unable to use the utensils…
Sometimes it can be as simple when we are feeding them, how the spoon hits their lips. Are we trying to force it in their mouth or are we feeding them like we would a baby and tickling their lip gently with the spoon first, which usually triggers their mouth to pop open like a little bird. Understanding our tone of voice and choice of words can have an impact as well.
I would love to her a bit more about your Mom. Is she able to feed herself? Can she use utensils? Would finger foods be better? Describing her dining environment… at home in a community… From there I might be able to guide you better.
I look forward to hearing back from you! Have a wonderful weekend.
Lori
Hi Tina,
I remember feeling the same way as you..about putting Mom in a nursing home. But in the last year of her life it became necessary because she was at risk of hurting herself as well as others. Medically it was in her best interest that she would live in a nursing home, but it was a extremely painful decision.
Try to be reassured that you know your Mom is in an environment where she will be properly cared for 24 hours a day and she will received skilled services. Just let your Mom eat what she wants. Trying to force more food will only make her more frustrated as well as yourself. I had the same experience with my mother.
Continue to ask God for direction and guidance in handling this. And you can always come here for excellent advise. Lori was very instrumental in helping me along the way with my mother and was always there for me. My Mom has been gone since January 7, 2010 and not a day goes by that i don’t think about her. I miss her with all my heart. Try to treasures the moments you have with your mother. It will be important in the days ahead 🙂
Sheri
HI Sheri
You are so wonderful to respond to Tina! What great advice!!!!! Hope things are going well with you. It’s crazy busy here with me, but I think I function best in that nutty mode. 🙂
Love ya
Lori
Really moving post, I cared partnered with my mother and used a lot of fun therapy stimulating the senses, favorite perfumes, colors, TV shows and music., It helped so much all these years that her behavior were pleasant all day,. really moved to see your mother, because when my mothers eyes locked I did not understand, the how and the whys and was upset the doctor had no medicine for it,. I did not call it the end stage only because it developed on the early part of our 10 years of this illness so I could not believe it switched off so suddenly. If you can call me at 201-222-9179, have some questions to see if you had similar changes thank you, Berto