THE SOUNDS OF ALZHEIMER’S
I sit in the darkness of the early morning enjoying the peacefulness of “me” time. It’s blessedly quiet because it’s 4:30 am. I just sent hubby out the door to work and I have about 4 hours of time left that I can hear ticking off of the old clock by my desk. I have my desk in the living room because it is the center of the house and I can keep my ears if not eyes on everything going on.
At 8:30 I hear the creak of the door and the shuffle, shuffle, shuffle of mom going to the bathroom. The toilet flushes, the door opens then that same shuffle back to her room. I hear drawers open and shut, open and shut and this never ceases to amaze me because I know that by now there are no clothes in those drawers. They are filled with all of the little things that she picks up throughout the house and then hides like a squirrel stashes his nuts. She finds the closet where all of her clothes are now hung, stuffed to the brim with anything and everything that will no longer fit in the drawers.
I hear her moving around making her bed, brushing her hair and I automatically know when she will come out. When I hear the spray of the aerosol hairspray can that is always the last step in the process. Then the shuffle comes out again and down the hall. She notices me sitting at my desk and asks me if “I’ve been up all night” every single morning. “Nope, I got up at 4” I say and get the same “Whew! That’s early”.
She heads on into the kitchen. The morning is when mom is at her best. You can almost pretend that she is well and fine…almost. She bangs pots and pans while trying to figure out if it will be Poptarts (blueberry with no icing only), blueberry bagels or oatmeal. One of those three every day. She has her own cabinet. It’s the only one she will open so I started keeping all the foods that I know she likes in there. I hear the chewing of her breakfast, the beeping of the coffee maker and then the splash of water in a cup for her medicine.
She will head back to her room again and fiddle with straightening or looking for something and then everyday at around 10:30 I will hear the sound of change spilling out of a jar as it hits her bed. She counts this same change every single day. I have no idea how much is in there or if she adds to it or subtracts from it, but she counts it every single day. I often wonder if this is her “I’m going to run away from home fund” in her mind or if it’s just a long held habit.
She’ll then shuffle back to her sewing room and start on her projects. Quilting is her saving grace. She has always been extremely talented in creating beautiful works of art through quilting. Things have changed though. She can no longer figure out how to piece those intricate designs and she can no longer remember how to work the sewing machine. So we search through thrift stores, junk stores and Goodwill for quilts pieced together but with the ideas and hopes of quilting them long given up. This is what mom can still do. She will gather the top piece, whatever we can find and she will add the batting (the middle that makes it warm and snugly) and finally the backing and she will quilt all three pieces together.
She will sew like this for hours taking Poptart and coffee breaks off and on all day. I will fix her lunch because she cannot live on Poptarts alone although she would if I let her. I have a hard time keeping her out of them. I know in my head she should eat healthier, but in my opinion she is eating the sweets because the Alzheimer’s has reached her tastebuds. I don’t know if this is true or even possible but everything tastes bitter to her now and it never did before. She complains about it often enough that it has gotten my attention. It makes sense though because it has taken everything else from her.
I am of the mind that she is almost 79 years old and should eat whatever the hell she wants. A box of blueberry Poptarts a day seems extreme for me so I try to draw her focus away from them from time to time. Her new thing has been to take my shoes. Yes, you read that right. No matter where I put them in the house she will take them. I hide them in my bedroom now because it’s dark and she won’t go in there. I have searched this house over and over only to find them on her feet time and time again. This is funny to me because I have one pair of sneakers and she has 4 and her feet are bigger than mine. Yet, she takes my one pair.
I plan and cook the meals, she peels the potatoes. It’s usually fried potatoes every night, but every once in a while I can coax her into cutting them for mashed potatoes. That is her contribution and it is a very important time. This is when “sundowning” is happening so I try to keep her here with me as long as possible, keep her engaged and talking. Sometimes it works, sometimes it doesn’t.
It’s a life that never seems to change until you realize that it is changing every single moment of every single day.
Remember to:
Appreciate the good, laugh at the crazy, and deal with the rest.
I love you momma!
Thank you for sharing your day as an Alzheimers caregiver. Although I have not had any experience with Alzheimers in our family, I have been a caregiver for my mother.
I just saw something recently on TV where I learned about Alzheimers symptoms and how people would collect odd items or put things in odd places (like keys in the fridge). I had never known that before.
Thanks Marysa it is often difficult to put into words how watching her change before my very eyes feels to me but writing them is a little easier.
You have an incredible knack for capturing the mundane perfectly.
I can’t believe she still takes her own meds.
Yes she’s losing her tastebuds. The last taste that stays is one for sweets so pop tarts make sense.
Thank you Pia, I put them in a daily organizer for her every week and I have found that if I make it a daily routine that she can remember most if not everyday. I do go and check to make sure but she only takes 3 pills a day and they are things that she had taken before she got Alzheimer’s. I figured as much but it is nice that it is confirmed that her taste buds are going.
How lovely that she has quilting to occupy her time. It also has to make it easier for you. Blessings to you both, Rena!
You are so right Carol it is a huge blessing that she still finds way to keep herself occupied. I don’t know how I would do it otherwise.
All of that routine is so comforting to her, and you are wonderful to let her have it. My mother in law only wanted to eat Haagen Dazs ice cream bars. We let her have them because why not? She did eat a little lunch and dinner, but towards the end I swear she lived on that ice cream.
Thank you Lana I know that when she gets out of her routine she becomes frazzled so we try to make everyday the same as long as I keep plenty of pop tarts things go well!
I’ve said it before, but I have to write it again. Your mom is so lucky to have you. You are giving her just the right amount of freedom for independence, yet there when she needs you. I think she steals your shoes because she wants to be just like you – and walking in them is the closest she can get.
I’ve also commented before on your writing talent – this piece is absolutely beautiful.
And 4 a.m. IS really early 🙂
Oh Susan I think I am the lucky one. Sometimes I miss the way my life used to be. Being able to come and go as I want and to travel more but the alternative is not having her and I just can’t see that it is worth that for anything. That’s a nice thought about the shoes and made me smile. Yeah 4 am is very early but I love that morning time to myself.
You are giving her such a peaceful shelter for her day. Hugs to you and your mom!
Thank you Diane how could I do any less than what she has always done for me. Hugs right back!
Reading this now with a huge lump in my throat. My mom is in a nursing home now, but I remember the times leading up to that. Words and actions repeated, repeated, repeated. It takes inordinate patience … but you do it for love. I was blessed with caring father, two sisters and a brother. You are an angel!
Thank you Beth for your wonderful comment. Our parents show us love and patience all of our lives how can I give her any less?
I can’t imagine how hard it is to watch her go through Alzheimer’s. I bet she is thankful you are there for her to be her caretaker. I would let her have all the poptarts she wants as well.
I truly hope so Tammi! Thank you!
Thank you for sharing this peek into your life as a caregiver for someone with Alzheimers. I think you are right about the Poptarts, she should be able to eat what she wants at this point, especially if it brings her comfort. It’s fantastic that she can still quilt too, and that you do different things to keep her engaged and contributing.
Thank you Nikki! Watching this whole process is very hard but writing about it gives me a much needed outlet.
You know that’s intriguing because my grandmother too at the end of her life would want to eat only sweet things. And, that was so very atypical of her because she always watched her weight, but we decided that she should be allowed to indulge from time to time at her age!
That’s the way my mother was Roshni. Very healthy in her exercising and her diet. Thanks for your comment.
Rena, this is beautiful. To be able to vividly describe your Mom’s day and yours by the sounds you perceive is brilliant! And to do it in a manner where I was able to FEEL love, sadness, gratitude and a sense of resignation all at the same time makes it even more special. Thank you so much for sharing this. Xoxo
Thank you Joy what a wonderful thing to say! Thanks for sharing!
I feel so much love in your words, Rena. How beautifully and respectfully you describe your mom and her routines. I spent days with my mom and realized her ‘silly’ habits/rituals were comforting and held meaning for her. You are blessed to have her with you. Very intimate look and sound of caregiving at its best!
Thank you Joan! There is lots and lots of love for sure!
I agree with the Pia on your talent for capturing details and drawing us in to your day, your experiences, your feelings and your thoughts as you care for your mother. Thank you for this insight – I’m sure it’s great for you to have an outlet and I appreciate you choosing to share so you can inform, educate and encourage others.
Thanks so much Michelle your comments are very much appreciated!
Rena what a beautiful post. I think it is wonderful she still can quilt. My mom used to love to quilt.
Funny a friend and I were talking about his mom and her only wanting to eat sweets.
It is so wonderful for your mom to have a stable, loving environment.
Thank you for providing an insight into your world. You brought a tear to my eye and lump in my throat.
Thank you Kathy. I know it will only get worse with time but for now I am appreciating the good.
This is so very close to my heart. I watched my mother take care of her mother through the 8 years that she had Alzheimers before she passed. I was the only caregiver my mom would trust to watch my grandmother when she had to have a break. Your mother is still rather high functioning and that is such a blessing. The repetition is definitely helping, speaking from past experience. Cherish the good days and reach out to your support system for the bad days. Positive thoughts sent your way.
It’s a very hard thing to witness for sure. I love my mom and only want the best for her.
thank you so much for sharing this with us today. I love this story about your mom. She sounds like a wonderful person, regardless of her Alzheimer.
Thank you Lauren she is one very special lady at least in my book.
I am taking care of my mom, who is 70. Salute your patience and positivity for there are moments when I get irked and irritated. As you mention in the comments, the thought of not having her is dreadful. Simple easy warm writing.
Alka you are not alone in your feelings. Sometimes I get so frustrated that I could scream and times when I have before I stop and think. It’s a hard life to live day by day and you are not feeling anything that every other caregiver has not felt at times. You just have to remember that the frustration is with the disease not your mother. That underneath it all she is that same woman she has always been. I will keep you in my prayers and I hope that you will stop back sometimes! If you need to vent you can always email me at rm29303@gmail.com
This had to be something extremely hard to write. What a wonderful mom you have and i’m sorry that Alzheimer is something that no one should ever have to experience but you are making the best of something given to you. Keep your head up and keep girl. Thanks again for sharing.
Thank you Erica. It’s a very hard job but one I wouldn’t trade for the world.
It always amazes me how you can make me smile and tear up all at the same time.
My grandma did not have Alzheimer’s but at the end of her life we were in complete agreement with you, whatever she wanted to eat, if that made her happy that was fine with us.
What a lovely thing to say! I appreciate your support so much Karen!
I’ve seen my parents and stepparents die of cancer, emphysema, congestive heart failure and Alzheimers. Hands down, Alzheimers is the most heartbreaking. My heart goes out to you Rena and your mom. A beautiful post.
I agree Kathleen my father died of a heart attack when I was only 15 and he was 46 I thought that would be the worst thing I have ever gone through but lo and behold it wasn’t. Thanks for your comments and your friendship!
Pop tarts won’t kill her and if she likes to eat them daily! Great that she can still do some quilting.
It is a huge blessing to me that she can still find things to keep herself entertained and interested. We are between projects right now so I am searching the world over for the next one. When she doesn’t have one like now she is like a bored 12 year old.
Oh yes – let her eat those poptarts! I’m so impressed with your generosity of spirit and patience. My mom is also 79 and has Alzheimers (at least she’s on meds for it – could be dementia). But oh she is mean! Very difficult to handle and quite delusional. Sending you love and strength!
There are times that mom does become mean Lisa but it’s the disease talking not your mother. I’m sorry that you have to go through such agony and I hope that you have a good support system in place to help you when things get bad. It’s a very hard thing to deal with. My husband is picking up two more boxes of Poptarts on his way home from work today, as a matter of fact. If you need to talk you can always email me at rm29303@gmail.com. I will keep you and your mother in my prayers!
I loved reading your post. Very interesting to read daily life through the eyes of a caregiver. It is amazing to me how the disease affects people in different ways. My grandmother is inching her way closer to the grips of Alzheimer’s, but sometimes, it amazes me how much she remembers. My Mom keeps telling me examples of how she is forgetful, but I don’t really see what she sees. Every time I speak to her on the phone, she asks me almost the same questions, and it gives me comfort that she remembers me, my life, what I do for a living, and even my boyfriend’s name.
I think that it is all about routines Yona. When your grandmother does the same thing day after day she can remember to do those things because it has become automatic. It is the short term memory what she did 5 minutes ago that is what is lost but those memory loses will get longer and the gaps between few and far between. My mom has times where she has a clarity to her that you would never believe that she has this awful disease then turn around after she has just eaten and ask if you are going to feed her that day. It often depends on the time of day it is as well. Mornings seem to be better and then as the day wears on the memory goes away.
Thanks for sharing this blog post. My granddad suffered from Alzheimer’s so I know somewhat what it is like to experience it. I was not able to be around him during the final stage but at least I have good memories of him to cherish forever.
That’s so wonderful that you have these great memories of your Granddad. I often worry that the disease will alter my memories of my mom that I have. That I will forget the woman she was and only remember the shell that remains.
The beauty of your piece, beyond the lovely writing, is that it shares with us, that in spite of all your mom may not be able to do anymore, there is so much that she still can do. I know that’s where I maintain my focus with my mom. And I think it is good for both of us. Thank you for sharing and giving me something to think about.
Thank you Meg! It took me a long time to realize that but once I did everything got better. It makes life not only easier but happier. Bless you and I will keep you in my prayers.
You touched me in places you could never know about and hurts too much to share. Rena, you painted one of the best word pictures I have read in a long time. I appreciate you – everything about you. Thank you for sharing this from the bottom of my little heart!
Thank you so much Carol. You have been a great friend and a great shoulder when I have needed one. I appreciate your comments and you so, so much!
You have so much strength and compassion. This was a beautiful read and great insight into something not easily understood. You have a gift for expression and I learned so much by reading this. Just beautiful.
Somehow your PopTart thoughts make me think of my boyfriend’s dad, who was suddenly diagnosed with diabetes a couple of years ago. He’s in his 80’s and simply refuses to admit that anything’s wrong – doesn’t want to take his insulin, or test his blood, or modify his eating at all – my boyfriend’s mom is stuck in the painful position of being the food cop (she’s in a good position to do that as she handles the family shopping, but it’s still no fun for her and makes for a lot of friction between them) and my boyfriend occasionally says things about how if he was closer, he could make his dad do the medical things he won’t do. I keep it to myself because there’s plenty of stress there already but every now and then I find myself thinking, “At his age, maybe it would be better if they just let the man do what he wants to do, eat what he wants to eat”. It’s hard watching good people go through this.
This is sadly beautiful. I am awed by your strength and compassion. <3
christina recently posted…Get your facts straight!
Thank you so much Christina! This is a very important piece to me and I am thrilled that you enjoyed it!