Do you ever stop to think about when was the last time your loved one did something? When was the last time you took your mom out to lunch or to go shopping? When was the last time your dad came over your house to fix something? When was the last time your wife cooked a meal for you? When was the last time your husband mowed the lawn? Or even simpler things, like when was the last time your loved one took a shower and got dressed by herself? When was the last time he didn’t need your help to use the bathroom? When was the last time she walked or fed herself? Do you ever think about these things? I do.
It’s crazy, but no matter how hard I try to remember, I have no idea when the last time was the last time. I have some idea from looking through pictures or Facebook memories, but I don’t know exactly when the last time was for many, many things. With Alzheimer’s, you lose little pieces of your loved one steadily, over a long period of time. My mom was diagnosed almost nine years ago, so for the last nine years, I have lost little bits and pieces of her, but not all at once. It would be different if I lost big chunks of her at a time. Then I would probably be able to pinpoint the losses and figure out when they occurred. But in losing her bit by bit, I have no idea exactly when it happened. My mom didn’t just suddenly stop walking one day. It occurred little by little over a span of time, until one day she just wasn’t walking anymore.
Not only are you experiencing the continual, gradual loss of your loved one, but you also never know when the losses are coming. Alzheimer’s is unpredictable. Your loved one could linger in a certain stage for a long time or it could move quickly from one stage to the next. Just because your loved one is able to feed herself this week doesn’t mean she will be able to next week, but it also doesn’t mean she won’t. It’s completely unpredictable. We can’t anticipate what’s coming. We don’t know when the little pieces will be lost for good, so we never get the chance to say goodbye to any of them. We don’t get the chance to appreciate and enjoy what we have before it’s gone. If you knew today would be the last day your dad ever spoke, you would make sure you spent the day listening to his voice, burning it into your mind and heart forever. But Alzheimer’s doesn’t give us that luxury.
Losing someone slowly, piece by piece, makes it difficult to remember what they were like when all of those pieces were put together. It’s easy for me to remember parts of my mom, but I struggle to remember what she was like whole. I remember the way she dressed or the way she wore her hair, but I forget what she looked like. I remember her voice or certain things she would say, but I forget what it was like to have a conversation with her. I remember how she hated to cook and loved to keep a neat, clean house, but I forget what it was like when she was able to do all of those things. I remember pieces and parts of her, but I forget what she was like as a walking, talking, fully-functioning, whole person. When I just loved my mom and she just loved her daughter and there weren’t all of these complicated emotions involved. I don’t remember what that was like.
Sometimes I sit and think, I mean really wrack my brain, trying to remember what my mom was like “before” and I just can’t. How sad is that? My mom has been sick for so long that I can’t even remember a time when she didn’t have Alzheimer’s. Pictures and Facebook memories help, but I can’t remember her on my own. When a person dies, you remember them as they were when they died. You don’t remember them from ten years ago. You remember them exactly as they were right before they died. The way I see my mom now is not how I want to remember her, but sometimes I feel like I don’t have a choice. It’s so hard for me to remember her before and I worry that I’m losing more and more of those memories as time goes on. Once she’s gone, will I have anything left?
I’ve lost so much of my mom and so many memories of her, but she isn’t even gone. I’ve cried so much and endured so much pain, but the worst is yet to come. There are a lot of terrible illnesses and diseases out there. There is no good way to die, but sometimes I wonder. Is it better to rip off the band aid quickly, all at once, or to pull it off slowly, little by little, so you can feel it pulling each hair on your arm? Both hurt like hell, but at least the first one is over and you can move on. Then again, I’ve never experienced the sudden death of a loved one. I’m sure it’s equally as painful, just in a different way.
Some people still don’t understand how horrific Alzheimer’s disease really is. It’s not just that your loved one forgets things sometimes. It’s so much more. The pain that a family experiences losing a loved one, slowly, little by little, is unlike any other. The helplessness of standing by, watching while your loved one is stolen right out from under your feet, is unmatched. Alzheimer’s is an unforgiving, unrelenting, menacing disease and there is nothing else like it.
I understand I feel your pain! It hurts like nothing I have ever felt! Its hard for people to know unless they go through it! Thanks for sharing !
It’s completely heartbreaking. I’m so sorry you’re going through this, too. Thank you for reading.
I went through that with my mom. Held her hand as I slept on the floor beside her bed. Now it’s my husband who is drifting away.
Can’t talk or walk and looks at me like he doesn’t know me. Now my Dad is beginning to forget. God gives grace to me to keep Caregiving. Stress is overwhelming for caregivers.
Wow, I’m so sorry you’re going through all of that. Breaks my heart. Thank you for reading.
So true, and it’s hard for those who have not been through it to fully understand the devastation that the disease brings to a family.
Even with all of the information that’s out there today, I still don’t think people can fully understand unless they’ve been there themselves.
I just recently had a conflict with a coworker who went to my boss and complained that I am out of the office too much, all due to helping my father take care of my Mom. This coworker failed to remember just a few short years ago when she had to be out a lot with the illness and deaths of both of her parents. She and I both were called to the HR office to discuss our conflict and I looked at her and said “I’m sorry it has taken my mother 7 years to die unlike yours.” That was a very INSENSITIVE thing to say to her and I regretted it, but that’s really how I feel. What have we all done sooo terrible in our lives to have to endure this horrible disease??? Some days are just harder than others.
Angie, my blood is boiling right now that you even had to deal with that situation! I’m actually proud of you for saying what you did, insensitive or not. Speaking our minds is the only way to make people understand. Maybe you should print out a few of my posts and leave them on her desk for some light reading haha. Don’t beat yourself up! Maybe she’ll back off now. You’re doing the best you can.
Angie never regret the time you spend away from work to care for your loved one. I regret that I didn’t stand up and take the time I needed for my Dad. My boss called me in and said. “how could your Dad turn so bad so quick” as if I was not telling the truth. I said, I’m sorry it may seem quick to you but I have been watching my Dad die for 15 years so its not that soon for me.” All I wanted to do was to work through lunch and take off an at 4:00 because I had to drive 45 minutes away to see him and they acted like it was an terrible thing for the company for me to do that. I regret that I did not just tell them I was doing it any way. I even had them show up at hospice to see if that is where I was. I took care of him the best I could but this is the one thing I would change for sure.
My Mom had Alzheimer’s for like 15 years at least, we can’t pin point the actual time it started, I just know when it finally ended which was the 4th of July this year. Five years ago while I was working at Ortho Michigan, Flint, Michigan, I had been working there for 7 years at the time. I was in the process of living with my Mother in Law because she had dementia, mentally and physically raising our 9 year old Autistic grandson whom was having a terrible time in school. My Dad started calling me and asking me to come over after I got home from work, made dinner and go see what my mom was doing so I could understand what was going on. Oh Dear Lord, I’m glad I went over there that first night because no one could ever explain that on the phone. She was walking back and forth in the kitchen bobbing her head with her eyes closed and mumbling. I couldn’t get her attention, I knew she had Alz., but nothing had ever prepared me for this. She talked about little children she thought were all around her feet, asked me where her sandwich went, while grabbing at the air. After that day, I went in to work and put in paperwork for the “family leave act” where I could legally take 3 months off to care for my parents. My boss, Cindy, acted like I was just wanting the summer off like I was vacationing! I just said I hoped her mother never got Alzheimer’s if that’s what it would take for her to understand. I didn’t go back to work the next day. She called me and said she must have misunderstood what I was doing. I said “what part of my parents are dealing with severe Alzheimer’s, I need time to get our ducks in a row”. I spent the 3 months taking Mom and Dad to a Gerenentologist, calling the Alzheimer’s association to see what direction they could send me. We went over their finances, only to find out that during mom’s onset, she had cashed in both of their life insurance policies to get cash, she had taken out a credit card that she had jacked up to $31,000. , Yikes! My dad is a veteran so I got ahold of them to get financial help for a nursing home and for respite for my dad to get away from mom a few hours a week after I went back to work. I was like a deer in headlights! I needed a sibling to help but I have 2 brothers that are alcoholics and drug addicts soo no help there. Just when I got our heads wrapped around this, I went back to work. I walked in, my job, that I loved had been given to someone that bearly ever showed up to work. I was given a job like a floater, same as being demoted to almost washing the dumpsters! I was horrified! My heart was broken in so many directions. Shortly after, I just walked in to my boss, Cindy’s office and said I needed my insurance information because I’m leaving. She’s like right now? I said no at 4:30 but you have made it impossible for me to take care of my poor parents and my autistic grandson without you running your mouth about what I’m doing, I wish something like this on you, Karma is real!, Give me the paperwork.” She handed it to me and I walked out at 4:30 and never went back. I was able to spend time needed with my mom and give my dad a break and got over thinking that I was putting people out by asking relatives and friends to set with her for a few hours to give dad a break. They were willing to help until she physically couldn’t walk anymore and I contacted the doctor, he said to take her to Hurley Hospital and they would walk me through the steps of this. They did and they got her into a nursing home. I spent as much time as I could with mom just to watch her deteriorate every time, I bawled so much. I couldn’t believe I was grieving so hard and she was still there for me to talk at, hug and what ever but she wasn’t really there! She was finally at peace the 4th of July. At 4:30 that morning, I was woken up by something I can’t even explain, it was like a big wind blew through our room and I sat up wondering what it was. 20 minutes later I got a call from the nursing home to be told my mom had just passed. Well, I guess the wind was Mom’s way of saying love you, good bye……….I really miss her
I’m sorry to go on and on but it’s so hard to explain.
Hi Lauren, I lost my partner Michael to Alzheimer’s 17 months ago. I know what you mean, remembering them only as they are, sick, unfortunately. But I’m starting to remember him as he was when he was healthy. Hopefully in time you will find the memories of your mom before she got sick too. Its beyond awful and I’m sorry you and your mom and family are going through this.
Thank you so much. I’m so sorry for your loss. I’m glad you are starting to remember him again! I hope I will have the same experience. Thanks for reading!