What does it mean on National Daughter’s Day that I’m no longer a daughter? My mom passed away from her Alzheimer’s disease on December 31, 2018. I didn’t blog much in the last year of her life – it was just too hard. I tried to find the funny moments to share, but there weren’t many. If you’ve read past blog posts, you read about my mom’s journey with this disease, my journey with her, the hilarity that can often ensue with someone who has Alzheimers and/or dementia, and the impact of it on us both. When she died, it was a relief, it was a release for her. I wasn’t as sad as I thought I might be, until I realized that I had already done most of my grieving throughout the four years she slid further and further away from me. In the end, she was a tiny, frail wisp of her former self, and I wanted her to go, to be with Jesus, reunited with my Dad again, who (as I told him several times in the years after he passed away but my mom was still with us) had gotten his alone time away from my mom and it was time for them to be together again.
The morning she died, my best friend Carol came to hang out with my sister and I, but I realized I needed to buy new bras, so we went up to the mall to do some “grief shopping.” This was on New Years Eve. We were buying lingerie. The sweet girl behind the counter said “Oh I hope you’re having the best New Years’ Eve plans and get to have a great party tonight!” Carol was standing behind me whispering in my ear “tell her your mom just died an hour ago, tell her. It will really freak her out. Tell her.” I didn’t’ tell her. I couldn’t do that to anyone.
And now, nine months later I’m still trying to figure out what I’m supposed to be, and who I’m supposed to be. I’m no longer a daughter. I’m not a wife, I’m not a mother, I don’t want my primary role identifier to be a teacher – that’s my job, not who I am. I don’t know who I am.
I miss my mom so much. I miss holding her hand. I miss every time I would go see her in the Assisted Living Center she would hold my hand and tell me I was pretty. I miss having someone hold my hand and tell me I’m pretty.
What I do know is that I feel happy again after a long long time of trying to remember the last happy day I had. I feel optimistic more often than not, and now can count more hopeful days than hopeless moments that were a struggle to make it through. I have a necklace that I sometimes wear that says “hope” on it, and over the last year, I find myself holding that necklace in the middle of the day – literally grabbing on to hope. I believe in hope, I believe in healing, I believe in restoration and new beginnings, and I’m starting to believe in optimism again, if only a little at a time. But that’s what healing is, right? Little baby steps forward one at a time.
This is Puppy. (Puppy’s the one on the left.) Puppy is a stuffed animal. Puppy is not real.
Several months ago, my sister and I realized it was time to move my mom from the assisted living floor of her Senior Living center to the more structured, protected area designed specifically for residents with dementia and memory-care needs. Moving to this area meant that my mom would not be able to keep her dog Bonnie with her anymore. My mom had reached the point where she wasn’t able to properly care for Bonnie and she was going outside and wandering around more frequently with Bonnie which caused fear that her “sundowning” (Alzheimer’s patients have a tendency to wander in the evening hours, often becoming lost and/or incapacitated) would lead to a scary, dangerous situation. The only downside to moving her would be the loss of Bonnie who had been her only source of constant, 24-hour comfort.
With the advice of the staff at her residence center, we decided to make the move, whereby Bonnie would live with me, and my mom would move into the secure wing. It was a difficult transition as we knew it would be, but within a week of her move, my mom had transitioned into her new room and living situation and adjusted better than I’d ever expected.
A few days after the move, my sister and I decided to get her a stuffed dog to ease with the loss of Bonnie. Alzheimer’s patients eventually regress to a childlike state, and many times, patients are comforted by things like baby dolls, so we decided a stuffed dog couldn’t hurt. Little did we realize what a life-saver this toy dog would become.
During the first week after her move, my mom would carry Puppy (because we couldn’t land on a name and Puppy seemed as good as anything) around and would say things like “I know she’s not real but she’s just as cute as can be and so soft.” The second week, Puppy’s story became “She used to be a real dog but she’s not anymore and she’s just as cute as can be and so soft.”
By the third week, Puppy was real. Not just “formerly real” but real. Live. And still “as cute as can be and so soft.”
Here’s what I know about Alzheimers and dementia: you just go with it. Reality doesn’t matter to them anymore, so don’t correct them. Embrace their reality. When people ask me how my mom’s doing, I tell them she’s doing really well. And she is. She isn’t in any pain. She isn’t angry. She isn’t suffering. She doesn’t know that she’s lost who she was. She lives day to day.
Alzheimer’s sucks. It is an awful disease that has taken away my mom. She thinks that my sister and I are her cousins, she doesn’t remember that my dad died, and she doesn’t remember her grandchildren’s names. But she’s not in any physical pain, she’s not in distress, and for that I’m so very grateful.
The plus side of this is that now we have Puppy. Puppy has become a very real part of our new normal lives. Puppy has become a source of hilarity for my sister and I.
texts from my sister
Puppy has brought an entirely new creativity to text conversations between my sister and I.Puppy is a vital part of the family and plays the most important role in my mom’s life. Puppy is so important that, in addition to Original Puppy (the O.G. Puppy) who lives with my mom, Backup Puppy 1 and Backup Puppy 2 are riding around in the back of cars to be brought into the game in case OG Puppy goes missing.
Backup Puppy 1Backup Puppy 2 (Or maybe 1. Does it really matter?)
Here’s the other thing about my mom’s Alzheimer’s. She doesn’t know that I’m her daughter, she doesn’t know that her husband of 55 years died a year and a half ago, but she still has foundational relationships. She may think I’m her cousin, but when she sees me or my sister, she knows that she trusts us and we will take care of her. She can’t follow a story line or plot in a book or movie anymore, but she still writes down Bible verses in a notebook. She carries her Bible with her almost as much as she carries Puppy with her. Those foundations in her life remain, despite so much else in her history that has fragmented away. So when people ask me how my mom is doing, I say she’s doing really well. She’s carries around a stuffed animal that she talks to and thinks is real … but when I walk in as she’s taking a nap and find Puppy at her side, I know she’s doing really well. I remain grateful.
P.S. You can follow more of Puppy’s hijinks on Instagram: @alzpuppy.
My mom is a Lobby Napper. This is a good thing. An amazing, answer to prayer, hand-to-Jesus good thing. Last Saturday, my sister and I walked into my mom’s building to check in on her, and she was sitting in the lobby with her gang of friends (yes, she has a gang of friends. This falls under the category of “Miracles Answered”) napping happily away in the lobby couches around the fireplace.
Let me reiterate why this is so important: it means she is comfortable and secure. She has friends. She has settled in to this new phase of her life. This. Is. Huge.
For the first few months of my mom’s transition into Belmont, she would call me and/or or my sister up to 18 times a day. 18 TIMES A DAY. She was scared and unsure, and her only foundation to connect with something that she knew to be true was Christi or me. Alzheimers is a progressive, one-way disease. There are times when she asks where my dad is and she may leave notes for him if we go out so he won’t worry about her. She thinks that her mother and father and husband all died on the same day. She often thinks that I’m her cousin instead of her daughter and she thinks she can talk to the birds outside. (Since I don’t speak Bird, who am I to say they don’t understand?) She’s not going to get better and she’s not going to go back to being the mom I grew up with.
But a year ago, to this day, I was going into surgery to repair my shoulder after falling out of my car while vomiting from carsickness. Within the space of 5 months, I’d torn my labrum, my father died, my sister and I moved into my mom’s house, and I was about to spend Spring Break recovering from shoulder surgery. Today, when I went to see her after school, she was sitting with her friends at dinner, eating a cheeseburger & happily chatting about newspapers. Her conversations often don’t make sense … but they don’t have to. She’s happy. She’s content. She’s well cared for by the staff at Belmont Village.
I say all this to my friends who I know are going through hard times. They. Will. Pass. They will get better.
I’ve been listening to the Harry Potter audiobooks since Thanksgiving as a way to cope – okay, escape – what I knew would be a difficult holiday season. I’m not overselling it when I say Harry Potter got me through. I found escapism that I was expecting and wisdom that I wasn’t. I discovered truths about myself by reading the words in the characters of JK Rowling. That’s me. That’s been me for many many years – scarred by my own thoughts and misconceptions and insecurities.
The descriptions of Harry trying to cope after the death of Dumbledore mirrored my own feelings after my dad died. It felt like – still feels like on some days – that the grief comes out of nowhere and knocks me flat.
All of this is to say to my friends that are going through their own hard times – because we’re all going through our own hard times of some form or another – that you are not alone. You will get through this. And it will get better.
I ran a 5K last weekend. A year ago, 5 years ago, 20 years ago I wouldn’t have thought I would even want to run a 5K, let alone enter & finish one. But here I am. I’m on the other side of a really difficult period in my life, and I’m doing okay. That means that you can get on the other side too. You are not defined by this period in your life; you are bigger than the hard times.
And if you need a coping mechanism, I highly recommend Harry Potter. Seriously.
We’ve reached a new level in this whole Alzheimer’s thing with my mom. She’s fully in the paranoid/conspiracy/hallucination phase. That’s common in the later stages for Alzheimer’s patients, by the way.
Last week, she wouldn’t let me touch her sunglasses case because it had a note on it that said “Do Not Touch.” (the note was in her own handwriting, but whatever) There might be poison gas in it. Or a bomb. Or a severed finger. Still not sure, although we inspected for wires – because, you know, a bomb – and there weren’t any, so we’re leaning toward poison gas. Maybe the severed finger, although there is a historical lack of Mob Hits at the Assisted Living Center, so severed finger isn’t as likely.
You do NOT want to know what was in here. (Sunglasses. It was her sunglasses.)
I started laughing. Couldn’t help it – I just started laughing. Loud, wheezy, almost wet-my-pants laughing.
Paranoia is a common stage of Alzheimer’s. Since she moved into Assisted Living, “They” (the people who work at the Assisted Living center) have taken many things that have mysteriously reappeared under her mattress or stuffed in the back of a bathroom cabinet or hidden in some other hidey hole that she’s created for herself. (How many hiding places can there be in a 500 square foot studio? You’d be surprised.) She is hiding things that seem valuable (dog leashes?), then when she can’t find it, she’s certain They came in and took them. Most times, They come in the middle of the night (she swears she sees Them, although her dog Bonnie never barks at Them, because, you know, THEY’RE NOT REAL) and take the “valuables.” When my sister or I get there the next day and discover the “valuables” in one of the hidey holes, my mom swears They came back in and put the valuables back.
Last night, she called to tell me she was worried because A Man came in her room and stole some of her dog food. When I got there today, she said that he came in the middle of the night, rearranged the dog food from the top shelf to the middle shelf in her kitchenette, and she didn’t like that a strange man was coming in her room in the middle of the night to take/rearrange her dog food. I told her I agreed. I mean, who wants strange men coming in their home and rearranging the dog food? Not me.
Bonnie. Bad Guy Alert Dog.
My sister and I have decided the best way to deal with an Alzheimer’s patient at my mom’s level is to just go with it. Don’t tell her she’s wrong or crazy or hallucinating. Just agree with her. I keep reassuring her that Bonnie will bark at any of the bad people. As long as Bonnie doesn’t bark very long at someone, then they’re ok. We told her that the nurses and the aides who walk around in the facility shirts are also working as guards to ensure no bad people can get in and bother the residents.
We told her we’d have the locks changed so that That Man couldn’t get in anymore. Today, one of the nurses pulled me aside to talk to me and was very concerned that my sister and I might believe someone was really in her room. I assured her that we have always found the “stolen” items hidden somewhere in her room. Since her dog didn’t bark at the non-existent intruder, I feel confident that it was a hallucination and completely trust the facility’s employees to keep taking great care of her.
I took her to the grocery store this morning and on the way out, I gave her room keys to the receptionist at the front desk, asked her to give them back to my mom when we came back in and tell her that they have changed the locks to her room. Thankfully, the receptionist gets it, and when we came back in, the receptionist gave my mom her keys and told her the locks have been changed and no one can get in her room without her permission. My mom was so grateful.
What have I learned so far from my mom’s Alzheimers? It’s a forward-progressing disease. She’s not going to come back from this. Some things you can’t fix, you can’t reverse, and you can’t make it better. You just have to put your head down and get through it as best as you can. Many days, that means just taking it one day at a time.
Secondly, and probably most important for my sister and I: we have to laugh. We have to laugh at all the crazy and the bizarre and out-of-the blue comments that come out of my mom’s brain. When she thought her glasses case had the poison gas/severed finger, I couldn’t stop laughing. I finally told her that since her glasses case isn’t airtight, we should leave it, and by the time she got back from lunch, the poison gas would probably have dissipated and it would be safe to open.
I have no idea what neuron synapses are firing to get her brain to do what it does, but you have to laugh. I do, anyway. The alternative is to tilt your head at the sympathetic angle, lower your voice to Grief Level, and say – in a serious, hushed tone – how sad it all is. You can do that if you want to. I just don’t want you to do that around me. I choose to laugh. It’s my mom and it’s my grief, and if you don’t think my way of coping is appropriately mournful enough … well just keep it to yourself. I get to have my own way of coping and unless you’ve been with me to the Assisted Living center or the police station or the doctor’s office, I don’t want your suggestions. I may want you to listen to me or let me cry in front of you or hug me, but please don’t tell me what I’m doing is wrong.
Thirdly, you will have the breakdown days. Last week, my mom called me thinking she was talking to my sister and had an entire conversation with me, about me. She wanted my sister to team up with her and pray for me. She thought there were things that the two of them could pray about for me … and she’s telling me her prayers and reasons. I played along as if I were my sister, and told her that I thought that was a great idea and Cathy would really appreciate it. I realized that even in her advanced level of dementia, she still loves me so unconditionally and so fully that she is aware enough to want to pray for me.
At the end of our lives, mental or physical lives, or both … when most of the material things you’ve collected over your life become irrelevant and you’re only surrounded by a few people … will you have built relationships that exist even when your mental faculties are fading? Will you still know that even though everything else in your world is confusing and sometimes scary, you still have certain people that you love and trust so deeply that they remain a solid foundation in your world? My mom loves me that much. She loves my sister that much. I have no doubt about that. And that has become the most important thing in life for me. Developing those few, those vital, those so very solid relationships.
Keep laughing.
Well … that and hoping for more severed-finger/poison gas episodes so I have funny stories to tell when I get back to work every day after visiting her. Every day is an adventure.
I go back to school this week, and I’m reminded of one of the greatest things I love about teaching. The kids are the best and my favorite part – as cheesy as that sounds – but I love the fact that teaching allows for do-overs. Every new school year brings a chance to change what I didn’t like from last year; I can close the chapter of a bad year and start brand new with a new group of kids. It’s the same way I feel about Mondays and new months and new years … we always get a chance to start over.
Football started back this week (photo courtesy of KXAN news), along with all the other fall sports, and the start of a season means the kids and coaches have the chance to start the season brand new. Whatever happened last year doesn’t matter, they start keeping score from right here, right now.
My kids who graduated are going off to college to start a whole new life. Some of them are excited; most of them are terrified whether they’ll admit it or not. College represents a chance to start over & be whoever you want to be, create whatever identity you want & leave behind those parts of your high school self that need leaving behind. You get a do-over.
Even Blue Bell ice cream gets a do-over and is coming back to the shelves of Blue-Bell starved Texans who have suffered through #Summer2015 without the sustenance of the best ice cream in the land. But it’s coming back people, and we are on the road to normalcy.
A few summers ago, I decided I was going to have the Summer of Cathy and embrace all that the summer had to offer. I took a horseback riding class, cooking class, yoga class, photography class. I took road trips, spent time at the Farm reading books and watching tv and movies and going where I wanted to go and doing what I wanted to do. I didn’t get that this summer. This summer was a little more Real Life where I took care of my mom as best as my sister and I could. By the time she seemed to settle in to the Senior Living center and we were down to about 2 phone calls a day (from the 12-14 a day we got in the early days) I felt like I was actually going to get a summer. Not a full summer … but two weeks of summer. A Fortnight of Cath if you will. Enough to sit by the pool, and take a road trip, and finish reading a book, and see Mission Impossible. Plus, I got to stay in an Airstream with Gracie. It was enough. It was plenty.
On Thursday my do-over for teaching begins. That means that my do-over for reconnecting with grown adult humans & co-workers is also starting, and frankly terrifies me. I’m socially awkward on my very best days but take me out of circulation for 8 months, and quite honestly, I’m not sure if I can have a real-life conversation with someone other than my dog or my sister for more than 5 minutes. That will be my personal adventure. I’ll be sure to update on all the awkwardness that I have no doubt will ensue.
For now folks, go embrace these last days of summer if you still have some; college kids, reinvent whatever that part is of you that’s been wanting to be reinvented. Everyone else, go buy some new pencils and a notebook and remember what it felt like to start a new school year fresh and unencumbered by any mistakes from your past. What is it you’d like a do-over on? Go for it.
A week and a half ago my sister and I moved my mom who has Alzheimer’s into an memory care center. We thought this would be the end of one chapter and the beginning of another. That was not to be. After four miserable days (heartbreaking sobs from a woman who is not a cryer) begging us to get her out of there because “it’s not a happy place and no one smiles,” a few altercations between my mom & the nursing staff (and a few pieces of furniture), and my sister and I being unable to get past the feeling that this was just not a good fit, we decided to pull her out of one assisted living center and move her into a new one. When I asked for prayer last week as her transition was not going smoothly, one of the things I prayed for was a friend for my mom by Friday. As it turns out, she did have a new friend by Friday … just in a totally different facility. God is funny. We were able to move her out of one place & into another within a 24 hour window. She is much happier in the new “hotel” and has already made friends to sit with at meals. Clearly that feeling of walking into a lunch room not knowing anyone and wondering who will be nice enough to ask you to sit with them never goes away.
So I would ask you this, in honor of my mom: when you meet someone who might need a welcome or a hug or an invitation to sit with them … be bold and invite them to sit down with you. You might make someone’s day. You might give that person a reason to come out of her room the next day and struggle past her own insecurities and fears and loneliness. You might get a hilariously wacky story that involves wading through words that often don’t naturally string together, but come out “pleasantly confused.” Or you might get a real friend.
I am still trying to figure out how to live my “normal” life where I’m only responsible for my dog and I only live in one house instead of a few. I went to the grocery store a few days ago since I haven’t had real groceries in my refrigerator in months. (Real groceries are the ones that you remember you have in your refrigerator and they haven’t spoiled or gone rotten or have funky fur growing on them.) I walked up and down the aisles of HEB trying to figure out what I needed to buy when one eats real food instead of takeout or prepared meals from the deli. I ended leaving with spinach dip and pita chips. Clearly, reconstructing my life is going to take some baby steps.
Reconstructing my life also means I’m about to wage an all-out homicidal no-holds-barred war against the fruit flies that have become drain squatters in my absence from my home. It shall be a blitzkrieg which has not been witnessed since Hitler rolled across Europe and took a vacation photo in front of the Eiffel Tower. Because even Hitler takes a vacation photo in front of the Eiffel Tower when he goes to Paris.
If you are of the “fruit flies have rights too”mentality, your opinions are dead to me. I shall soon be whistling happy tunes as I flush out all the dead fruit flies, and clean my home with the joy of Mary Poppins. I have a dark side.
In the meantime, my mom is happier, and I’m praying that her friend circle grows and grows until she doesn’t want to live anywhere else. I’m also praying that I move beyond spinach dip and pita chips into actual healthy meals; that I go to a movie, maybe eat lunch or dinner out, and that at some point this summer, I just float in a pool or down a river like the normal people do.
This has been the hardest six months of my life. The. Hardest. I’ve been through some dark periods before (like when I asked my doctor for a hysterectomy because I couldn’t stop crying and I figured that would take care of it. He very gently suggested that perhaps I could try a low-dose of antidepressants as a first step instead of going for all-out removal of body parts). But this last six months has body-slammed me MMA-style to the mat.
My dad died of cancer in January and my sister and I immediately became full-time caretakers to our mom who has Alzheimers. Today – after 6 months of round the clock care with one of us spending every day and night at her house – we moved her into a Senior Living Center. I can’t think about what that really means in the whole big picture because I’ll fall apart. Again. It feels like that gut punch when I walked into my parents’ house and found my dad on the kitchen floor. It means she won’t be coming home again. Ever.
People have been asking me to write a blog for years – mostly because I seem to have hilarious life adventures that don’t seem like they could happen in real life. But the idea of putting myself SO out there in a blog has always scared me. I mean, the best stories – in my opinion, the most hilarious stories – are the ones of me getting rejected by one man or another. I have handled Life’s disappointments mostly through humor (yes, the Powerpoint of Rejection was a real thing that I made, yes it had a soundtrack, and no, you can’t see it because it’s been deleted), a lot of tears and some antidepressants. Still, it feels too vulnerable and honestly, too humiliating, to just go all emotionally out there like that. I mean, one guy seriously used the “It’s not you, it’s me” line. ARE YOU FREAKING KIDDING ME WE’RE ADULTS. You can’t even come up with something better than “It’s Not You, It’s Me?” Ouch.
But then my dad died on January 5. All of a sudden my biggest champion in the world who made me a better person and taught me how to live life well was gone. I moved into the Full-Time-Caretaker-With-My-Sister role for my mom who is no longer the mom I grew up with. And I realized that Life just sucks some times. It sucks worse than being told “It’s not you, it’s me,” or losing a friend because I sent an Ambien text that I don’t remember, or having a coworker rip me apart. It’s just hard. Like curl up in fetal position and eat your feelings through a box of ice cream Drumsticks kind of hard. And it’s ok to accept the suckiness. If I can share that suckiness, and more importantly, know that I can get to the other side of the suckiness, and putting that out there helps someone else get through their own suckiness? Well, then maybe it’s worth the potential humiliation.
What I have learned in the last six months is that God has never been more real to me & my faith has never been more real to me. By the grace of God & my sister, the unwavering love and support of a few friends and a great dog, step by step & one day at a time, Life gets less sucky. I will move out of this period into the next one, and the next time Life kicks me metaphorically in the groin, I’ll know I can come out the other side.
So all of this is to say, I feel like I need to apologize to anyone who’s come through my circle in the last 6 months; like I need to apologize for not really being a functioning member of society or a good friend. Part of me thinks “screw it” – I don’t have any emotional energy left to deal with hurt feelings when I’ve felt like I’m cracking apart inside. But that’s not right either … to be intentionally callous and insensitive toward others. So to anyone who I unintentionally hurt, I am sorry. To those of you who invited me to something and I didn’t go, I am sorry if it seemed like I was rejecting you. I wasn’t. I was trying to get through a day without falling apart. There will be days when I will continue to struggle to get through a day without falling apart. It’s not you, it’s me. (Oh, wait …)
Those of you who haven’t freaked out when I started crying awkwardly in front of you, or said something inappropriate to get past a painful moment, thank you for putting up with me and loving me despite myself. And to everyone else … life is never a cake walk and it’s never easy and it never goes exactly the way you planned it. But it’s pretty cool to look back and see how God works it all out. He is for me.
And really … let’s all do better than “it’s not you, it’s me.”
I didn’t blog much in the last year of her life – it was just too hard. I tried to find the funny moments to share, but there weren’t many. If you’ve read past blog posts, you read about my mom’s journey with this disease, my journey with her, the hilarity that can often ensue with someone who has Alzheimers and/or dementia, and the impact of it on us both. When she died, it was a relief, it was a release for her. I wasn’t as sad as I thought I might be, until I realized that I had already done most of my grieving throughout the four years she slid further and further away from me. In the end, she was a tiny, frail wisp of her former self, and I wanted her to go, to be with Jesus, reunited with my Dad again, who (as I told him several times in the years after he passed away but my mom was still with us) had gotten his alone time away from my mom and it was time for them to be together again.
and tell me I was pretty. I miss having someone hold my hand and tell me I’m pretty.
The descriptions of Harry trying to cope after the death of Dumbledore mirrored my own feelings after my dad died. It felt like – still feels like on some days – that the grief comes out of nowhere and knocks me flat.
If you are of the “fruit flies have rights too”mentality, your opinions are dead to me. I shall soon be whistling happy tunes as I flush out all the dead fruit flies, and clean my home with the joy of Mary Poppins. I have a dark side.