Would it have been better not to try?
Outings are rare and exhausting for me these days,
but this is Mother’s Day, right?
And she is my mom,
my much-loved mom,
my disappearing mom,
losing pieces of herself from minute to minute.
I’ve been at home since the scary thing,
going out only for lab results,
a few groceries here and there.
My husband got the flu very late last week,
something neither of us needs me to deal with,
so we’re both on meds and holding our own.
Maybe I should have just called it a day
and talked to her on the phone.
But she misses me when I’m not there,
even though she has no idea how time passes,
cannot remember that I have been injured,
and doesn’t always know who I am.
She knows that she loves me. That I’m ‘wonderful,’
that I’m important to her.
So I went.
I stayed home from church to do it.
I carried a lovely big hydrangea,
a pretty new scarf.
My brother sent chocolate covered
strawberries, which we enjoyed after
the meal.
After lunch,
I scurried around her room,
making space for the flowers,
tucking the scarf in a very confused-
looking drawer.
And then we sat down for a visit.
Oh, it was a strange one,
one that stirred deep things in me,
including anger and tears.
Both of those have been lying around,
latent, contained,
for a long while now.
But occasionally, when ignited,
they flare and wound.
Before this stage of the disease,
my mother could often wield her
tongue as a weapon,
implying things with her wry,
sarcastic humor,
startlingly able to make me feel guilty
with just a word or two.
(Why do mothers have such power?
Do I?
Oh, I hope not,
I try not.)
She is restless.
My mother has always been restless.
She would like to move somewhere else,
and who can blame her?
She wants to go back to where she was
before we brought here her,
that fine place south of here,
that place where they would
have locked her into a small unit,
with no single rooms,
her friends unable to visit easily.
Back then, she and I decided to move her
nearer to me.
And most of the time,
that is reason enough for her.
And I should know by now.
I should know to just nod my head and say,
“It’s nice to dream, isn’t it, Mom?”
But somedays, I don’t seem to be able to do that.
I want her to understand,
to know why she’s here,
why she needs to be here,
why we’re out of options.
So I told her.
Again.
“Your brain isn’t working like it used to, Mom.
And I am so, so sorry. But this is a good place,
a place where they take care of you well,
and I am so near to you now!”
And then, out of the blue,
this line . . .
“Well,
I’m just sorry you don’t think
I’m worthwhile.”
And I lost it.
“What?? What did I possibly
say to make you think that?”
“Oh, you didn’t say anything.
I can just tell.”
How could she possibly tell?
She can’t tell the time, the date,
the place, the people.
But this, she could tell?
And then it came,
lancing through me,
soul and sinew:
“You never invited me to your home.”
I threw back at her the myriad times
she has been in our home,
the birthday parties over the years,
the long weekends,
the train trips,
the Christmas Eve services since
she’s moved here.
But I knew.
I knew what she meant.
She meant I never invited her to live here,
to be cared for here.
The very thing she told me
over
and over
and over again that she never wanted
to do.
Ever.
Truth be told, I know myself and our relationship well
enough to know that we would not survive it.
And yet, I carry it with me.
The guilt, the wondering, the heaviness.
To hear her say it literally knocked the
wind right out of me.
Lord, have mercy.
Give me grace to release all of this,
the anger, the guilt, the wondering,
the fear.
All of it.
It does me no good,
and it surely doesn’t help her.
I want to love her without reservation,
and to know she is safe in you.
I don’t want to wallow, waffle or wonder.
I want to feel anchored,
loving, loved.
So this is what I will choose to
remember from our time together today.
Walking from the dining room to her room,
she began to hum under her breath.
‘What ya singing, Mom?” I asked.
“When we walk with the Lord. . .” she replied.
And so we sang.
We sang loudly as I moved around her room.
First verse and chorus of that old chestnut,
the one that sums it all up.
Do you know the one?
It’s called, “Trust and Obey.”
Yes, yes.
That is what I will choose to remember
from this Mother’s day celebration.
Please, God.
Only that.
Love and prayers for you and your mom, Diana. Strange, isn’t it, how memory loss can have such a dulling affect, yet brings moments when the sufferer is so painfully sharp. I remember that from Grandma. And, unfortunately, those most involved receive the brunt of it. I’m so glad you can carry, also, the beautiful and good from your visit.
Thank you, Elena.
Oh, Diana. So hard. Thank you for letting us in and for living (and so showing) a faithful way forward. Happy Mother’s Day.
Thank you for these sweet words, Holly. This is a tough road that way too many of us are walking these days.
oh diana, I needed to read this today. I have been teary here today, wishing i missed my mom when all I can think of is the last year of her life when she couldn’t receive my help the way she needed it. I remember the ways she didn’t’ understand me.- she the organized stoic one, me the ADHD disorganized one who was a very feeling person. I have even written an essay that was healing to me in many ways yet I find my self today just wishing I missed her more. There were so many good things about her. yet in the later years i realized we missed each other in so many ways and by the time we were closer to talking about some of these things she became ill and her deteriorating medical condition took over. And so we missed our chance. I have done a lot of personal work around this, but sometimes it’s still hard. So anyway, thanks for this.
Sweetie, don’t be so hard on yourself! You are allowed to enjoy Mother’s Day without guilt or regret. You did what you could. And so did she. Keep doing the work – it’s important and continuing. Ask me how I know!
yes, i need to remember we both did what we could. thank you for the reminder of grace in your words. Yeh…i’ll keep doing the work. I can guess how you know.
Over 20 years worth of work. And, as you can see, I still do battle from time to time.
Thanks for sharing your heart. I can’t imagine what this would be like.
Thank you so much, Morgan.
This. This is hard. And I pray you will both find grace for the days ahead.
Yes. It is. Thank you, Susan.
I am so sorry Diana. There are truly no words to express how hard the journey of dementia (in any form) is to endure. I’ve had similar conversations with my mother-in-love. I’m going to be asking the Lord to bring good memories to the forefront of your mother’s mind and a settledness to her spirit. Enduring peace to you Diana. <3
Thank you for your prayers and kind words, Caryn.
Every decision you have made for mom has been thoughtfully considered, engaging mom in the process to the degree she can participate, considering what make sense for her as she slips away while at the same time dealing with the harsh truth of her condition. Every decision has been CORRECT, regardless of the difficulty and pain. Your care for our mother is inspiring and leaves me ever grateful that you’re my sister. Not to mention the fact that you’re as good at being a mother as being a daughter. So accept the fact that you’re doing things right and have a Happy Mother’s Day yourself.
Love you!
Love you, too, Tom. Thanks for these words, bro.
Diana, You and she are still singing her home! Blessings to you, my friend!
I hope you’re right, Nancy. Thank you.
You have always been a loving daughter and even if she cannot express it , I know she is so thankful you are HER daughter. Hope your Mother’s Day was wonderful!
Thank you, my dear cousin. You know parts of this story better than anyone else, not the dementia part, but the wonderful, complicated, loving mom part. We are blessed in our moms, but neither we nor they are/were perfect.
Oh Diana, my heart hurts for you both. Dementia sucks.
Thank you, Donna. You are exactly right.
So hard. Thing is, and I’m sure that you know this, that even if you’d invited her to come live with you, there would have been something else she would say that would cut and wound. Relationships and Mother’s Day can be so complicated. But to end the visit with a hymn? Oh, what grace is that. I love you, friend. So wish we lived closer.
It didn’t end that way, but that’s what I’m choosing to remember! Love you fiercely, dear Patricia!
Trust and Obey was my mother’s favorite song. She hummed it a lot when I was little. What a lovely memory. Love you, D.
It is a lovely memory, Carolyn, one I’m clinging to these days. Love you, too, C.
Oh, Diana. I’m just a weepy wreck here. I’m so sorry this is so hard, so hard for her, so hard for you. I wish you didn’t have this long fading. I pray that that hardness and hurt of it all will one day fade and you’ll remember well–the trust and obedience, and yes, the love. Because you love well. So well.
My situation was so different, but still a wave of guilt and heavy washes over me from time to time, and fear that my mom’s end will be mine. But in the end, there’s grace. Always grace. I love you. I love you so.
I think guilt is part of the complex mother/daughter thing and I pray my way through it most of the time. But it’s so deeply ingrained that it takes hold when I am tired or struggling, both of which are true these days. With my best self, I see the truth, but it feels important to write down the more raw feelings, too. And as always, I discover there are so many others who know exactly what this is and how exquisitely painful and lonely it can be. Thanks for your tears, my friend. They are a baptism of sorts for me.
I am so sorry, Diana – this is just terribly hard. I know it’s probably not much of a consolation, but I hope you know that in opening up your hard, hard journey so honestly and authentically, you are helping others feel not-so-alone on their own hard roads. Bless you, friend.
Thank you for the blessing, my friend. I feel it. I need it. And that’s the main reason I write any of this stuff down. Well, that and some personal relief/reflective work for me. 🙂
Life can be so complex. My father had Alzheimer’s but I wasn’t there when he suddenly died from a stroke and I missed the opportunity for a final goodbye. In comparison to my best friend whose hubby also had Alzheimer’s, I realize I was spared some of the most difficult experiences of the disease’s later stages. Sometimes my father had remembered who I was, and sometimes he hadn’t, but he was *usually* kind to me.
My friend believed she was doing the right thing by keeping her hubby home with her, honouring her ‘for better or worse, in sickness or in health’ vow, until it was no longer safe. (He became accusatory, angry and violent…would hit her, even knock her down.) Long after it was finally necessary to admit him to a care facility, she felt guilty that she had somehow given up on her responsibility to care for his needs.
Her later visits with him were still emotionally painful, but eventually, in retrospect, she realized that his mind had been so devastated by the disease that he was no longer the same person. That realization was important. Her initial reactions were based on feeling that he was deliberately being unkind and hurtful. Understanding that it wasn’t *him* at all, but virtually a stranger, took some of the sting away. Some of that knowledge came as a result of a support group that she attended. She said she wished she had joined it sooner and could have been better prepared for what to expect…that preparation would have made things easier.
I’m not sure anything can totally prepare you for the increasing disappearance of the woman you love, Diana, but I pray that you’ll be able to separate the hurtful memories from the good ones and put them aside. Know that you are a blessing to your mother during this horrible time, even during the periods when she can’t comprehend it.
Oh, Carol – these are such sad, hard stories we all share! I sometimes find myself praying for a sudden stroke! And I am deeply, deeply grateful that my mom has basically become truly beautiful and gracious through this hard process. What was hard about this particular conversation was that it was familiar to me – and not much is on these days when we’re together. That’s perhaps the strangest part of this whole process – how brief glimpses of used-to-be pop up now and again, adding to the general confusion and loneliness of the whole process. Thanks so much for your words, friend. I’m grateful for you.
It takes such courage and practice in open-hearted living to share this lancing, personal pain, Diane. Your pain touched a deep place in my soul where the Oneness of all lives. I hold it there, with you. And I pray today for your mom and for you. May it lighten the heaviness in your heart, even a little, to know that many hold you.
Thank you, Lisa, for these lovely words and for your prayers. It does help to know that others know this experience and are praying and encouraging!
Dearest Diana,
Whenever you write these touching posts, I sit and nod and in my mind invite you in for tea and talk and tears. I’m walking through the same thing with my parents – mostly my Dad. The accusations, the subtle jabs that go straight to the heart.
I have a friend who wisely tells me to simply nod and make agreeing noises. But more often than not I rise to the bait and want desperately to remind and to justify and to make him see the reality of things.
I will join my heart with yours in looking for the good things and praying for grace.
Much love.
Yes, my husband tells me the same thing, over and over again. But it’s sometimes so difficult to do. I want her to be HERE, present, comprehending, clear. And she simply cannot be. Yes, let’s pray for one another and all of us who deal with this dreadful process. Thanks for your encouragement, sweet Linda.
Diana, I can just barely bring myself to read all the way through your story, because it is so close to what I am living today. The big difference is this: my mum is in my home, and even so, I fail her every day in a multitude of ways. She never fails to remind me of it, so, truly, sharing your home with her would not have been a golden ticket to her happiness or approval or to your peace. We are fallen on every level and every relationship bears the horror of it. Praying for you right now that God would take the sadness and brokenness of yesterday and leave your heart free to remember the singing.
Oh, Michele. Somehow I missed this piece of your story. I could not do this and I know I could not. You are not failing her!!!!!!! You are doing the best you can with a crappy situation. And there are no golden tickets – this I know. My mom is in the best place possible for her, at this time, with her disease, with her need for round the clock care. I am now officially in the elder class category myself and caring for my husband and for this aging body is about all I can manage. She is where she needs to be. It’s just that somedays, I want her to be able to know that. And she cannot. Soon, your mother will need someplace else, too, Michele. This cannot and should not be done by people in their 60s and 70s — it is way too taxing. At least find respite care, okay??
I read this on twitter today: “In these hard times, we must learn to melt the fear, to weed our humanity, to soften the anger, pain, bitterness or they will eat us alive.” That’s exactly what you did, Diana, as you wrote so beautifully about your Mother’s Day. And then sent it out for us to pray with you and for you and your mother. Trust and obey, for there’s no other way to be happy in Jesus. but to trust and obey.
Oh, thank you, Sandy! Perfect words and kind encouragement, too. Lovely.
Diana,
I wish I could have read your words a few years ago. I nod my head–yes, that’s how it is. There is no “good” solution (filled with goodness), only the best we can do with the choices we have. You do what you can to preserve the relationship with your parent and try to keep yourself and the rest of your immediate family healthy. I had a child still at home, a job, and a new grandchild, when I cared for my dad with Alzheimer’s. He is gone now. My mother passed away a few years ago (Parkinson’s). The could’ves, should’ves still buzz around my head at times.
Oh, yeah! I know those could’ves, should’ves all too well. Writing this out has helped me to let them go a bit more and engaging in dialog with others on this path helps even more. Thanks so much for commenting, Constance. (Or is is Connie?)
I’ll answer to either. : )
Good to know!
Diana: I am always blessed by what the Lord outs on your heart to share and this message was even more moving for me. I too am walking the journey of dementia with my Mom as you know and as the sometimes brief but very real glimpses into yesterday that I see in her eyes touch my heart they remove the struggles and challenges and pain for those brief moments and she is “Mom” once again.
You truly bless everyone who reads your words and provide comfort and strength and encouragement and yes, even humor as we face each day never knowing what it may hold.
Thank you Diana – I pray that the Lord continue to bless you and your mom and your entire family and let you fell His presence every step of the way.
Thank you so much, Donna, for your kind encouragement and for reminding me of the ‘glimpses’ we’re given now and again I guess I should not be surprised when some of the glimpses are of the not-so-pretty parts of my mom. She is a great lady. But she’s not perfect – and neither am I!
To be sure some of those glimpses are “less than pretty” – and some of the “today” experiences are tough – it’s during those times when I have to remind myself that it’s the dementia and not Mom . . and I have to step away for a bit to regroup. Doesn’t make the hurt less though – but at least more bearable because the Lord is holding me up (and reminding me to hold my tongue:) At the end of the day I ask Him for forgiveness for any not-so-nice thoughts I may have had during the day or any sharp words I may have spoken.
My Mom was such a sweet (though not perfect lady) and to experience those barbed wire moments are tough. And although we aren’t perfect He is –
God bless!
“Barbed wire moments” – PERFECT. Thanks, Donna.
Oh, Diana, my heart aches for you, that after all you’ve done for your mother, she still jabs at you with guilt and mean remarks. Add growing dementia to the equation, and it’s no wonder she steps on every nerve before the end of a visit! I remember my mother, who also suffered with dementia, making comments like, “I wish you’d come for MY birthday like you came for Dad’s.” (I HAD been there, but she didn’t remember.) Or, “Your brother is no help at all,” which wasn’t true either. He mowed their lawn, ran errands, took them to their doctors’ appts., fixed things around the house, etc. But again, she didn’t remember. It is painful for the family, and so scary and frustrating for the dementia patient. I am praying for a cocoon of peace and grace to protect you, Diana, from the emotional sabotage inflicted by your mother. You’ve absorbed enough!
Thank you, Nancy, for your kindness and empathy. This is the first time in a very long time when I’ve seen even a flicker of this behavior. It’s always hard when it happens, but I’m trusting that it will be minimal and that I’ll survive it without exploding! And yes, those comments you note from your mother are the kinds of things that are so hard to roll with. And must be so frightening for them, as they cannot remember anything most of the time. Thanks for your prayers, friend.
Oh, Diana… Charlie and I have survived this with his mom and his dad. The most devastating part to live with is not being able to resolve issues that have taken root from years of not resolving them in ways that would still honor the parent who had hurt you in one or many ways through the years. For when they are no longer the parent, for now they are more a stranger living in that body, you must honor their memory of times well lived and loved. All the past pain and anger and sorrows from misunderstanding who you are as an individual or who God created you to be, has to be let go… in light of their failing memory and health.
I am now entering that time with my mother, and finding the time to let the words and past hurts go is getting less easily. Forgiveness is done, love is constant, and yet some words spoken will still find their mark.
Love is kind, love is gentle, but love can also bring pain that must be ignored because the one whom we love is no longer the one who remembers who we are, their beloved child.
I will continue to pray for you, your mom, and your recovery.
This is the fourth time I walk this journey, this is the last. It never gets easier. This one is almost the hardest – because otherwise, she’s remarkably healthy. With Dock’s mom it was much the same way,but she relapsed into almost complete silence the last two and half years. My mother, ever the extrovert, will probably not stop communicating. And most of the time, that is a gift. Not so much yesterday.
I’m wrecked over these broken words Diana. It’s just all too close to home right now. My siblings and I have started to discuss plans for my dear mother who is in the early stages of dementia. She doesn’t go out much anymore and cares less and less for herself. She often won’t remember if she’s eaten. So we’ve begun talking about what we’ll do. She’s still stubborn and doesn’t want to live in a facility. She doesn’t want to live with one of us. She’s struggling so hard to hold on to her independence but I see it slipping away every time I make an excuse for the missing pieces of her memory. Jesus Give us grace to love our mothers well today and every day…especially today. Hope your Mother’s Day was great Diana. You have my heart friend and I’m praying for your mama. You’re the #GiveMeGrace Wordsmith of the Week!
This seems to be a very shared story. I am so sorry, Lisha, that you are beginning this journey. It’s such a hard one. There is some reading you can do, and you and your siblings must begin to research care facilities. It too soon becomes dangerous, for her and for all who love her. I am so very sorry. Maybe start with a neurology visit??
Thank you for sharing this Diana. The waves of guilt are so familiar- my mom has a terminal illness and watching her body betray her is no fun. Yet her words cut me deep too. She has chosen to use the death with dignity law to escape her situation. I’m also supposed to feel guilty about that too I suppose. I appreciate your words here, they give me hope. There is still much to say to my mom, I pray that I have time and the courage to do so.
Oh, Staci. Another sad, hard story. My prayers are with you as you make decisions, and wrestle with your own guilt, as you seek wisdom about how to respond. It is not easy. It is not easy.
This is so bittersweet. Just beautiful, Diana. Sending much love to you and your mom.
Thank you, Laura.
I have walked a similar path. The struggle between their mind, our heart and the reality of the situation is an incessant tug of war. Tears, laughter and fist pounding all at the same time. I get it. Still and yet, she may one day not remember this moment but you have the memory of time spent well. There is grace in it all…sometimes hard grace but grace nonetheless. I am visiting from #GiveMeGrace and I am glad I stopped by.
So many have walked this hard road! Thank you for walking a little way with me.
Oh Diana, are we sisters, never met, of the same mother? Bless you dear-hearted one for continuing to love big as your mother grows smaller each day; for choosing to love full of grace, despite the echo of hurtful words; for choosing (and praying) to remember the “song”, the one you sang together. For years.
Sometimes I think that is what life’s journey is about – growing smaller.Thank you for these kind words.
Hi Sweet Friend, Just wanted you to know that I think of you & your mom often and always say a prayer for both of you. I am out at the Outer Banks with my mom & Casey. At 3 am this morning, the closed door to my bedroom swung open, the light next to my bed was turned abruptly turned on and my mom frantically said, “I can’t find Dwight!” My dad has been dead for 20 years. Needless to say, I did not find my way back to sleep. My care journey with my mom has been relatively easy for most of the last 18 years, but these days the challenges are painful and harsh. So painful, that I find myself not looking at her: her skin is just falling off her carcass; not talking to her: the perseverating loops make my head hurt; she is now missing some of her always-beautiful teeth; and I keep a doterra aromatic dispenser in every room where she lives that releases scents into the air because keeping her and the rooms that she is in from stinking is a constant challenge. When I find myself spending more time and touching the dog more than my mother, I remind myself that she is still a human being that needs love, conversation and touch as well as food and help with hygiene. It just makes me achingly, deeply, sad. I have no words for how it hurts. So, I ache with you, dearest friend. Is there a redemptive purpose to this awful-ness?
That was beautiful Diana! Raw and Real and Beautiful.
Thank you, Jacci.