My relationship with my mother in her Alzheimer’s is the best evidence for Freud I’ve yet found. I might mean a million things, but I’m only thinking about one, that we remain who we are as children. Or more accurately, retain. Somewhere inside the storm of creature that is me lives little Lisa. And she wakes up for my mother.
My adult self has Mom’s situation pretty well figured out. I made an infinite number of mistakes to get here, but she’s now got the right medical care and place to live, along with appropriate pearls and good shoes. Maybe close enough. Oh and I can’t forget that she needs a new wheelchair, but, she has enough shampoo. Johnson’s No More Tears in case you wanted to know.
My adult self has also built a nice cognitive framework to hold all this stuff I’ve figured out. Including the decline, the inevitable. I even feel like I’ve figured out the unpredictable, because that which you cannot exactly predict is still statistically certain. I think I’m all set.
Small Lisa, she’s less prepared.
We’re pretty sure Mom had been feeling a lot of anxiety for a while now. Hardest for her seemed to be the loss of language, which makes sense, given who she has always been. Her fragmented sentences would trail off into whimpering. Recently her medical team decided to try a new medication and it’s worked like a charm. While her language hasn’t returned, she now seems happy to talk no matter what she can’t articulate. For now, I say, knowing that it may all change tomorrow or even might be changing as I write, the whimpering is gone.
I visited yesterday in the rain. As you may know, we’ve had a lot of dry years here in California, but on Friday the parking lot was a puddle, drops splashing straight up out of the water.
Mom was in her bed, awake and chatting to herself after a nap. So I asked for help to get her into her wheelchair and put her in a clean shirt, the one she had on was stained from lunch. The caregiver looked through the closet and picked a blouse with light blue and white stripes. Mom looked pretty, like a girl.
She wanted to get out. I can’t recall what she actually said, only what I took from her words. I told her it was raining, but we could go downstairs. That’s where the people with moderate dementia live, Mom’s up with the more seriously affected. So I wheeled her into the lobby. We watched the rain through the window. Again, I can’t remember her words, she told me she hadn’t seen this for a long time. She liked it. It was a beautiful rain, rich and unrelenting.
Then someone opened the front door, and Mom kind of lunged forward. I asked if she wanted to go outside, she said she had to. Out we went. We stood under the porte-cochère. She leaned forward again, I understood that she wanted to go right out into the rain and I understood why. I really understood why. I remember her as having lifted her face to the sky for a wet minute, although I don’t know if that’s what actually happened. Then she indicated she was cold, so I asked if she wanted to go in and she said yes.
It was warm and cozy back in the lobby. And here I remember clearly, she said, “This is glorious.” I laughed. Then she said, “I must be warm at all times.”
Things went back to normal, we wheeled around downstairs, we went onto the patio, it was cold, we went back inside, we went upstairs, I went home.
Driving, I realized how much Mom’s well-being affects me where my cognitive framework is useless. I had felt exhilarated as I left, nearly floating. And although I have everything figured out, small me is so sad when she suffers. It turns out it doesn’t matter that 16-year old me yelled at her and said I didn’t respect her, that 25-year old me embarked on a kind of life she’d never even considered, that 40-year old me felt abandoned when I couldn’t confide anything to her of my struggles, that 50-year old me may have thought I’d folded up that relationship and put it neatly in an orderly linen closet. Lots of sheets for guests and peach cotton towels.
Small me loves my mother entirely, dearly, sweetly, and is probably always going to cry for her.
As I am my mother’s daughter, I am going to take the occasion to find a reason for cheer. If I love my mother so, maybe I can tentatively trust that my children in turn love me. It is not their job to convince me of that, it is my own.
Right. That was quite the Saturday morning. Love to you all, and rain.
102 Responses
Oh my dear, dear Lisa
Thank you for your beautifully composed words. I think of mum and yourself often. I can relate to what you say about there bring ‘two yous’ who are living with mum’s Dementia. It’s such a cruel illness to me because of those fluctuations of seeing the person you love unpredictably appear on the midst of words and behaviors that are so confronting and foreign.
X
@Sydney Shop Girl, Thank you so much. I am kind of surprised I had the guts, or at least the temporary lack of fear, to press Publish.
I love all the Lisas, but I hope I can serve as shelter for the small one, especially.
@lauren, In her storm of grown Lisa, yes, me too. There will be pets. xoxox.
Aw, sweetie. So beautifully written, so honestly felt. . . You know I have thoughts about mothers and our smallest/youngest selves, and this post resonated powerfully. Hugs. . . .
@Frances, Thank you my friend. <3
Thank you for sharing. Even when our parents are gone, we are still their small children at certain times. There are times when I don’t want to make the hard decisions. I don’t want to solve my own problems. I wish my parents were here to take care of those.
@dkzody, I’m sorry your parents are gone. Even though I imagine you can solve those problem I can also understand not wanting to.
Sweet cousin, I’m holding you and Aunt Nancy I my heart. You are brave, so is little Lisa. Your mom adores you, and she was ever fiercely proud of you and your siblings. Thank you for sharing your tender heart, and the rain.
xo Laura
@Laura, Thank you dear cousin. I always knew Mom was proud of us, I’m just kind of sad that she was also probably afraid of me in a way, and I hope somehow this time I have with her has fixed that even though the conscious she isn’t here any more.
Such a meaningful and touching post Lisa. I love how you have explained your relationship to your mother. I love how you knew what she wanted to do when it was raining I’m sending you every good wish going forward, hoping that you will have confidence in the decisions you make and find more joy in your relationship with your mother.
@Susan D., Thank you. Reading your comment, I understand that I need more confidence in myself and my relationships with those I love, and more joy with myself as I am.
Warm & lovely rainy peace to you both.
@Jb, Thank you:). It’s still raining, loudly, and I’m under a blanket. Maybe I’ll turn up the heat so I too can be warm at all times. xoxox.
My adult and little selves experienced the same dissonance when my very dear father’s life was nearing the end from cancer. Though he’s been gone almost 10 years, the small me still feels orphaned. You’ve expressed this so beautifully, thank you.
@Leslie K, I am so sorry small you, I send you love and a big hug.
Beautifully said, Lisa. Please don’t take this down. I felt the same way when I wrote of my brother’s death the same morning he died. I almost changed my mind and deleted, but I’m glad now that I didn’t.
I can relate, I guess we all can in a way. Not necessarily to your mum’s Alzheimer’s, but to her frailty, and your helplessness to hold back the inevitable decline. When I was last home with my mum, so many times I smiled cheerily, helped her do whatever, said it was all okay, and then rushed off to my own room at the other end of the house to wail at Stu over the phone. It’s hard to see her so very frail physically now, and in pain from arthritis that can’t really be alieviated, or fixed. So I cook and cook and freeze meals when I’m there, fight battles with bureaucracy, and then come home and hope all the plans and arrangements stay in place. Sometimes I despair that there seems to be no more “care” in the health care industry. But I know that’s just six year old me, feeling overwhelmed, and wanting some adult to solve my problems for me.
Take good care, my friend. ❤️❤️
@Sue Burpee, I can feel your relationship to your mom in your retelling, almost see her and you in the kitchen. <3 <3 <3 to you both. I'll leave this up, if only so we are all reminded of each other's various frailties. And for the comments.
Lisa, this is heartbreaking and beautiful. I am so sorry. But I am so happy she has you.
@Texan in Exile, Thank you. I hope in her heart she’s glad too. I intuit sometimes that she is.
Lisa, what a beautiful piece this is. I am struggling with my own mother’s progressing dementia, although she remains at home with my father for now. I feel as though I have so many things I want to say after reading this but I cannot find the words so I’ll simply say thank you for sharing it.
@Monica, Thank you for reading and adding a comment. Sometimes life with dementia takes all the words. xoxox.
So beautifully and honestly expressed. We can all relate to this feeling that there are many “small selves” inside us. I’m sorry that you have to go through this but you are doing it with grace and compassion.
@Jane, Thank you. I hope and imagine we are all doing the best we can, and that will be so different for everyone, right? Language and a desire for adventure are things I share with my mother. So. <3
A BIG hug to Little Lisa♥️♥️♥️
@Margy Houtz, Oh you are a mother soul, in my world. xoxox.
So touching and so very relateable. My mother had small cell lung cancer, and it is a swift and especially cruel and painful cancer that quickly metasticizes to the brain. My siblings and I were very fortunate that we were able to getva room in a residential hospice for her right after the diagnosis was confirmed.To watch the essence of what made her our mother disappear was very sad and disturbing. The hallucinations were incredibly frightening in the beginning. The natural response is to reassure that what she thought she saw wasn’t there. A nurse witnessed me doing this and grabbed my arm and escorted me to the hall where she told me that I might have thought I was doing the right thing, but, instead, we were supposed to go along with whatever she said. So we had to come to terms that she was already gone. I am so sorry you are going through this. I admire how organized and considerate you have been in arranging care for your mother. I know she would tell you how much she loved you and appreciated you if she could. Wishing you peace and comfort.
@Marsha, Thank you. I am very sorry your mother went so fast. I do know that even in this long disease, she leaves me, then she leaves me, then she leaves me, and I am to this day not sure she is gone.
Lisa, I loved this so much. How wonderful you can say exactly how we are affected by how they feel. I am thinking of you Lisa. Hope you get a few more of those kind of moments. They are everything in the struggle. Take care, Kim
@kim, Thank you. Your guidance and warmth means a lot.
The more honest and real you are, Lisa, the more beautiful you become. In speaking your truth, you give permission to others to speak their truth. I’m so glad you pressed Publish.
@Shawn, Thank you. This is lovely. Thank you.
Wow, this brought my little person right out. So beautifully written, you really have touched us with such a heartfelt and meaningful post.
Thank you so very much, Suz (crying a little) from Vancouver
@Suz, Aw thank you. xoxox
I completely understand and can relate to that (and it is so painful)……hugs to both small and adult Lisa
She’s so happy to have you and you know it deep down
Dottoressa
@Dottoressa, hugs back. xoxo. I am beginning to let myself believe I do her good.
Lisa, thank you for posting this. In the specific and honest anecdotes you have given voice to some universals. My mother died 30 years ago and my father ten. Neither had Alzheimer’s which is crueler in some ways than their iLlnesses. And yet the feelings you expressed resonate deeply with me. Powerful and meaningful writing.
@Wendy, Thank you. In thinking over your comment, maybe no one disease is crueler than another, per se, only the experience of the ill and the carers may be crueler depending on the circumstances and their relationship – if that makes sense.
The small me is so shattered. The grownup me can not believe my father is not here to look after everything….
Thank you… can’t stop crying….
Ali
@Ali, I am so, so sorry. I can feel your sorrow and pain. I hope that this crying lessens the burden somehow – it can happen, we just hope.
Oh Lisa, this is so poignant. Thank you.
@MaryAnne, xoxoxox
I’m at a loss for words. The piece is beautiful. Take care of that little girl.
Luci
@luci, Thank you. I feel I’ve been taken care of here. Love.
I rarely read anything this moving, or this good. I am sorry that it comes from a place of such deep pain.
@Terry, Thank you very much. Along with the pain has come a lot of happiness. I could think of it as growing pains. Maybe.
This is so beautifully and profoundly written. Thank you, Lisa. It comes from such a deep place in your heart. I am at a spot where my aging parents need a lot of care, and my 30-something children have struggles, and I don’t feel adequate to fix everything for anyone. I do express my love on a constant basis and try my hardest to be a support. Thank you for taking your mom out into the rain-what a beautiful picture of a daughter’s love. You have brought tears to my eyes today.
@Debbie, There are days when all the people I love who need something need it at the same time. It’s tough. Thank you.
THAT was BEAUTIFULLY STATED!
SO, happy I did not GO DOWN THAT PATH with MY MOTHER………although maybe it’s an easier way?FInding the right CAREGIVERS and SHOES was NOT easy!MY MOM was a size 10 in the shoe department!I’m still holding on to some of them as they are TOO GOOD to TOSS!I’m a size 8.5………..makes NO SENSE but you know what? I do not care!I like “FINDING” them in my closet!!
@LA CONTESSA, Sorry, I don’t quite understand your comment? You are so happy you didn’t go down what path? But thank you for the kind words about my writing, and I can understand how you might love to find your mom’s shoes in the closet.
What a nice visit.
@RoseAG, It was a good day.
Beautifully stated. Illness and all the complications are difficult. The day to day changes make predicting the next question/challenge hard or impossible. Your devotion to support your mother through this journey and ensure her care is meeting her needs is impressive. Clearly her comfort is your priority. Your skill and strength shines and, for this. you can be very proud. Thank you for sharing.
@Susan, Thank you for reading and for your kind words. It’s true, just as I think I know what’s going on, everything changes.
Wow – I have no words right now but this is so beautiful. So poignant. When she says: I must be warm at all times – that threw me.
@K-Line, It threw me too:). Thank you.
This is so beautiful Lisa, it evoked so many feelings in me that, like some others here, I can’t really say much more. Thank you for sharing.
@Patricia, Thank you xoxox.
How beautiful! Thank you for sharing both the hills and valleys.
@Ella, Thank you for listening. xox.
Beautifully written! Small Marla is how I’ve been feeling a lot lately. My mom is of sound mind and body at 88, but she’s gotten herself into some credit card debt. Her income is low, and I help her financially, but not really knowing the extent of her pickle since I try to respect her independence and privacy, I had no idea. She was afraid to tell me, thinking I would be mad at her. Not mad at all, only sad that she had been carrying this burden alone. It’s in the process of being sorted out, and it’s become clear that she’s overwhelmed handling finances. I had no idea, I see my mom as so competent and in control of everything. Your words hit so close to my own feelings! Much love to you and your mother!
@MarlaD, Thank you – love to you and your mom too. She sounds lovely, as does your relationship.
I was a daughter for 60 years, and one that has experienced what you and your Mom are now going through and you will end up, to cherish these days, like none other. The end of life, saying good-bye to your Mother, is something, you will NEVER ever forget,I know, just make it the best most loving, goodbye ever, there are no second chances. The bond you share will always be, in life and in death. I wish you love and hope…
@Bonnie Schulte, I have come to understand that what I thought I knew about my feelings for my mother, I didn’t know at all. I am glad you feel such a strong bond with your mom even now.
Lisa,
What a beautiful post about a special afternoon. I think you are a balm for your mother’s soul, as she is for yours. I especially am affected (in a good, but bittersweet way) when reading your posts about your mother, since my dad had Alzheimers. Being with him during those months was one of the greatest gifts I ever received. Hugs to you and to her.
@Ann, Thank you. Good but bittersweet is a good way to describe a lot of this experience.
Beautifully expressed, Lisa. Hugs.
@Buckeroomama, Thank you. Hugs back to you. xoxo.
What a touching post – thank you for sharing the reality of what you and your mother are going through – tears, laughter, anguish, sweet moments of remission….bittersweet memories of the past, looking anxiously to the future, all wrapped up in that tangled web that we call the human experience. It was wonderful that your mother briefly became herself, and was able to communicate that it was indeed a glorious experience. What a gift that was, to her, but also to you!
@sensitive poet, Exactly that, she did briefly become herself, and it was a gift to me – especially as I can see more clearly now how I am and/or am not like her. A gift to my understanding of myself.
“If I love my mother so, maybe I can tentatively trust that my children in turn love me. It is not their job to convince me of that, it is my own.”
This brought tears to my eyes. Thank u for sharing your feelings.
@Joannne, xoxox We are in some ways all here together.
This is beautiful, Lisa.
@Cathy, Thank you very much.
Dear, dear Lisa. All of my love to you and your mum and all of my love for your tender, vulnerable words.
@Cara, Thank you dear one and I send hugs and kisses your way.
Thank you for how you write about your mum. I think I need to begin to write about mine.
@Jessica, I have learned so much by talking about my feelings here. Highly recommended.
I loved reading this Lisa, and it made me feel so happy. To know that you are having these meaningful and really beautiful moments with your mother, despite the disease, it’s just extraordinary.
I understand too your feelings about your mother-daughter relationship at different stages in your life, you’ve articulated that so well. It’s wonderful that at this stage you have the time and energy to spend with her. And to be aware of your Little Lisa too. Love to you xo
@Dani, Thank you. I am so glad to have made you happy in the telling of this experience.
So poignant Lisa. So beautifully heart-wrenchingly said.
@Ame Silver, Thank you. I bounce from sad to floating with happiness. It’s so weird.
This is so profoundly moving and so deeply true for those of us who are caregivers to our elderly parents. Yesterday was my birthday and the day before it my 86 year old mother eagerly suggested she take me to lunch. I told her that would be nice and would call her the next morning to confirm a time.yet when I called her she never answered. After an hour of repeat calls, I was worried enough to drive to her apartment to check and I suppose I was relieved she wasn’t there which meant she had other plans. But little me was disappointed that once again she forgot even though adult me knows she has short term memory issures. Around 3:30 yesterday she called to wish me happy birthday and I asked her about lunch. Her response was “What lunch? I had an event at the senior center” I reminded her of her lunch invite of which she had no recollection. These lapses happen more frequently now even though she compensates by writing notes to herself.
On the bright side she remembered the birthday. We must appreciate the little victories.
@Karen Gaylin, That’s the hard part, appreciating the little victories at the same time we feel so sad. I wish you the best with your mama.
This is beautiful, Lisa, so human and all sentiment. I helped my mother yesterday with fraud transactions on her bank account, calling the bank to freeze her account. She tried to solve it own her own, but English as a second language, not understanding technology, forgetfulness made it difficult to fully assess the situation. Reading your post on the joy your mom felt seeing and being in the rain made me cry thinking about my mom.
@t, I can imagine that your mom was so relieved and glad to have you to help her, even as she felt maybe anxious or embarrassed about what she couldn’t do. It seems only right that we cry about our moms – they have cried about us at one time or another, for one reason or another, I am sure.
Beautifully written as always. I’m glad you’re having this time with your mother, I think of it as a gift of healing between you two. I wish I had that time with my mother. xoxo
@KSL, It has been a gift, I have healed more than I knew I needed, I can only hope Mom in some ways knows I’ve made reparations.
So much here. The deep and enduring capacity to experience joy…it’s everything.
@Susan B., It is everything – and it has always been such a deep part of my mother. That and her warmth.
So beautifully written. You’ve touched many of your readers deeply with this post. My mom has been gone nearly 21 years and I still miss her every day. Thankfully we had sweet (and bittersweet) moments as she drifted away.
Keep writing about this Lisa. You have a gift with words, and perhaps this is another book you must write. <3
@audri, Thank you. I am trying to imagine this experience as a book – I’d want to do so much research, to protect the readers from the mistakes I made. I am sorry you miss your mom but happy that you love her so.
So beautifully written, Lisa. And the comments show that you speak for so many other women.
@Maryn, Thank you. I take your remarks to heart.
As a mom of 20-somes, your comment about your children and their love went straight to my heart. Thank you for sharing these thoughts.
@Maryellen, You’re welcome. If many of us feel this way maybe some shame will lift.
Lisa, I so feel for you. My mother (died 2015) had severe dementia and a host of other ailments. I thought I had grieved so much during her last years that I’d be ok after she died. Heads up–I was wrong. Both of my selves–childhood and adult–still had a lot of pain to process. No getting around the hurt. From across cyberspace I send you much love and understanding. Thanks for articulating the emotional landscape so well.
@Maggie, I am sorry you lost your mother, and that there was so much pain left to go through. Thank you for enduring it and coming out the other side to let me know what’s ahead. Much appreciated.
The beauty and poignancy of your own writing, dearest Lisa, is matched only by the heartfelt responses of your readers. You have struck a chord that reverberates through our shared world in ways you may never know.
But speaking now as someone who first knew your mother “in the lovely April of her prime” (Shakespeare), what moves me the most is the way that you are keeping her alive through your writing about her – bringing her into other hearts, and allowing her to have an effect on people she herself will never know, but who will remember her always. I certainly will.
And please let me say her name: Nancy Powers Carter.
@Victoire, I guess you knew my mother in her very early 30s, didn’t you? Wow. She was so young, only 23 when she had me. I am so glad to hear that she affected you – she would have loved to have known that. I suppose I am finally discovering a way to love her blithe spirit if not glad grace.
Sometimes I wait days to open posts on this topic. My years of alzheimer’s caregiving ended fourteen years ago but I still shed tears after reading these posts as it brings it back so clearly. I’m not sure if it is your beautiful writing, how your relationship with your mother mirrors mine, the defiance of norms (you were likely the only ones out in the rain) or all of the above (most likely). I used to defy the staff and break all kinds of rules solely because it made my mother happy and, after all, we paid their salaries. Anything to make my mother happy. It is odd how the research shows the connections for speech become lost, but it does not necessarily mean understanding is always gone. Even towards the end I felt there were moments clarity shone through in her eyes even if not able to be verbally expressed. I only wish your blog was there when I was experiencing caretaking, as it can be such a lonely place without others who understand. Thank you for your beautiful gift of writing and I wish you the best on this journey.
Beautifully and honestly expressed, a truth. Faced with our mothers we are always small children, often sad and confused small children, wishing they could make mummy happy. No matter how much grown up me taps that anxious child on the shoulder, she continues to stare and wonder. I think, honestly, because we are aware that time is running out. And while it sounds trite, it is the tiny details that matter, rain on her face and a nice shirt. Everything else is bureaucracy. You have done a service with this post.
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