ONE WAY TICKET TO ALZHEIMER’S WORLD
Every single day I spend most of my life in “Alzheimer’s World” trying to anticipate mom’s actions and reactions. Sometimes I am successful, sometimes not so much. The following story is just one example how something very small can turn into something huge in just a matter of days, hours or seconds.
Last week my husband and I got up at our normal 4 am and stumbled into the kitchen for some much-needed caffeine. There laying in front of my husband’s coffee maker was a note from mom asking him to bring her home some boxes because she wanted to clean out her closets and box up her winter clothes for the summer. No big deal right…wrong!
My husband left for work and returned that afternoon with 4 boxes which he stacked in the laundry room for her, so they would be there when she needed them. He nor I never thought another thing about those boxes.
One Sunday night as we are laying in bed watching TV there is a knock on the door and mom sticks her head in. She doesn’t say anything, but I can tell she needs me. I get up and head for the hallway and when I get out there she is crying. I ask her what is wrong. She looks at me and says, “When did you say I had to move?” Of course, I am at a loss, not having a clue what she is talking about. I hug her and tell her once again that she isn’t going anywhere that she is staying right where she belongs.
She seems satisfied with my answers and goes on to bed. The next day when she gets up she is very “nontalkative” and I could tell something was on her mind. She said a few things here and there, nothing that lets me know what she is thinking. My husband comes home from work and then has to run back out. As soon as he leaves she sits down beside me on the couch. She looks at me and says, “do I really have to leave?” with tears in her eyes. I tell her once again that she is staying with us, that we want her there and then I hug her and tell her I love her.
Tuesday she makes a comment about her driving me crazy. I just told her she was silly, that I loved her. Now, for these three days she has been having nightmares every single night where she thinks I am telling her she has to move out. She says she dreamt she was on the side of the road with all of her things and no place to go. I’ve been racking my brain trying to figure out what could have happened between this week and last week when she was so obviously happy.
Last night I finally figured it out! She keeps seeing those boxes in the laundry room and thinks she is supposed to be using them to move out! She equates “boxes with moving”. That one small thing had sent her into a tailspin that lasted for days with no sleep for either of us.
Trying to play detective, to figure out why such behaviors are happening can be so scary and stressful. You have to be able to submerge yourself deep into “Alzheimer’s World”. You have to visit there often and try to make sense out of the senseless. It can be something as simple as moving some empty boxes out into the garage or it could be a UTI. You just never know until you show up with your passport and take that trip into another world.
I just hope one day I don’t forget my way back and get stuck in Alzheimer’s World myself.
Remember to:
Appreciate the good, laugh at the crazy, and deal with the rest.
I love you momma!
Hugs.. It takes a strong person to be able to handle this without coming completely unglued. Keep being strong for momma!
Thanks, Mary! Sometimes I do fall apart but thankfully those times are few and very far between. Thanks so much for commenting!
My heart goes out to you. Wishing you strength and positive thoughts!
Thank you so very much and I appreciate your comments so much.
such a good, patient, loving daughter. it’s not an easy road.
Thank you! I am only trying to show her the same love and devotion she has shown me for the last 45 years. I really appreciate your comments!
I’m glad you can see the humor in these situations, although I’m sure at the time your heart was broken to see your mom in distress. I can’t tell you enough what an incredible caretaker you are. The way you take each day as it comes and keep a positive attitude through all life’s trials and tribulations (mom’s alzheimers ,babies in the NICU) is truly inspiring.
Thank you so very much, Jen! It is very hard to see her like that, but I am very happy that I was able to figure it out rather quickly. I guess my theory is “life is tough, you got to be tougher” that and I know I am truly blessed. Mom may have Alzheimer’s…but she’s here and alive same thing with the twins I am so blessed to have them in my life. I wouldn’t change a thing if I could. I’ve learned so much about myself since all of this began and it has positively changed my life!
Heartbreaking. Your poor mom. When it comes to Alzheimer’s, we as a society always think the pain is suffered by the caregiver and the patient is unaware. Obviously that is a simplification. What a terrible disease.
I think that mom is very aware at times what she is dealing with, sometimes too much so. She seems to at least be making peace with it finally and that is something that I have prayed for. It’s a hard thing to watch and there are days I lock myself in the bathroom and have a good cry. I don’t allow myself to do that very often because I feel we are still truly all very blessed. I really appreciate your comments!
Staying positive is your greatest strength, Rena! That and your understanding heart. Great story! Your poor Mama!
Thanks Diane! I think having a positive attitude makes a world of difference but it’s not always so easy to pull off!
So sorry for your mom. That must be so unnerving. Just had a visit with a childhood friend who lives a great distance. We hadn’t really talked in years. She is dealing with her mother and the beginning stages of Alzheimer’s. She talked about the anxiety her mother feels. That was when they knew something was up. Stay strong and keep loving as your are.
I guess being a caregiver also translates to being a good observer/investigator. I hope your Mom is now feeling assured once again. Send me the boxes if you don’t want them in your house. I can always organize some more around here, hehehehe…..Hugs to you, Rena!
That’s true Joy! I feel like a detective most of the time. I think I’m going to hold onto the boxes haha! I need to start organizing you’re making me look like a slacker!
This is such a difficult way to live and my heart goes out to you, Rena. I’m also so sad for your mom, who I know wakes up every day believing once again that you want her to move out.
That is so true Karen and it breaks my heart. I want so much for her to feel loved and supported because that is the way she treated me my whole life.
Your statement: You just never know until you show up with your passport and take that trip into another world. — carried quite the punch. I know you have a delightful sense of humor which helps ease the pain of what you go through daily. I wish your mom could know how much you care and love her.
Thanks, Carol. You are so right if I didn’t try to maintain some humor I may just go crazy. I wish she could know how I feel as well but I think in some deeper level she must.
Oh Rena, so many of your stories bring back memories for me! The day we had to finally move my mother in law from her home, she turned around before she got in the car and said “goodbye house”. We didn’t even think she was really aware of what was going on, and it just broke our hearts. Your compassion and patience with your mom is a true gift. She is very lucky to have you!
I know you are still grieving for the loss of your mother in law Lana and for that I am so very sorry to stir up old, painful memories. I think we are both very, very lucky to have each other.
Poor thing. I’m so sorry Rena. She’s lucky to have you
Thanks Liv, it breaks my heart whenever something upsets her like this and it happens quite a bit. It’s a very hard disease to live with whether you are aware or not.
Sending you love. I don’t know what else to say x
Thanks Katie, very much appreciated.
It’s like having your heart break every single day. I think the hard part is that some days she knows what is happening and others she does not. Stay strong and take care of YOU, too.
Thanks so very much and I couldn’t agree more. I never know what she may be aware of and what she’s not and it makes it very difficult sometimes. I just have to keep emphasizing how much she is loved and cared for here and hopefully the rest will work itself out. Thanks so much for your comments.
Wouldn’t it be nice if you could stick an electrode on her head and then one on your’s to transfer her thoughts so you could unscramble them?
That would be amazing Laura!
You really are a great detective. It’s a heartbreaker of a disease, it is.
That’s for sure Carol! It’s so sad to watch.
How traumatic for her to have been thinking about this for days, and for you too. Glad you were able to figure it out!
I know! When I finally figured it out I was so upset. Things are back to normal now.
As I read this Rena, I was struck by how this challenge could be experience by an alzheimer’s caregiver or the parent of a child with a need for a clear consistent routine. You do such an amazing job providing that for your mom – and are tuned in enough to her needs that you figured out how to fix this for her.
As I’ve said before, she is so very lucky to have you and your husband, and she must have been a good mom to have raised you so well. Wishing you easy days ahead, you are a remarkable caregiver and a friend.
Thank you so much Susan! I want so much to see her enjoy her days and it just about killed me when I figured out what was happening. I’m so happy to have things back to normal.
My heart goes out to you. I wish you all the best. Warm greetings from Montreal, Canada.
Thank you Linda! I live in South Carolina and have always wanted to travel to Canada! Thanks so much for stopping by and commenting. I hope you enjoy your visit and will return soon!