Battle Fatigue

IMG_0459You know, it’s just lunch. Simple, right? I get in the car, I drive over to Mom’s care facility, I punch in the magic code to open the door, I gather her up, confused and beautiful as she is, I open the door so we can both go out into the sunshine.

She says, “Do you really want to bring this old thing?” pointing to her walker.

Every time, she asks me this question.

EVERY TIME.

“Yes, Mom. You can’t really walk well without it and it fits right into the back of my car.”

I settle her into the front seat, lock the seat belt around her, nudge her gently to move her feet completely inside the car. I load the walker in the back and come around to the driver’s door, belt myself in and begin to drive out of the residence area.

“What a good driver you are. What a nice car this is — so smooth!”

“Thank  you, Mom.”

I hear these two sentences EVERY SINGLE TIME WE GO OUT, which is every 3 to 4 days. But 3 to 4 days is an eternity to someone whose brain is full of holes. 3 to 4 minutes is an eternity. Somedays, 3 to 4 seconds.

“Now tell me your name again and why you came over to get me today?”

And we’re off. The litany begins.

Again.

And again.

“Do you have children?”
“Do you live nearby?”
“What do you do?”

“Where are we going?”
“Why are you being kind to me?”
“Now tell me your name, please.”
“Do you know my family?”

Round and round we go, the same set of questions, the same set of answers.

Today we went to a place we have not visited often. She is, however, convinced that she has been here, “many years ago.” Often, this is at least partially true. Not today. We’ve been here exactly twice in the last 3 3/4 years.

The sun is warm, but the restaurant, located directly on the sands of Ledbetter Beach, acts as a wind tunnel for the ocean breeze. She is immediately shivering, despite being fully covered with two layers of clothing.

So I return to the car, get my wool shawl and my wide-brimmed black hat with the droop-down brim and wrap her up as much as I can. She continues to hold down the brim of the hat or to place her hand over her ear during the entire meal, despite the fact that she is no longer in direct contact with any kind of air movement whatsoever. Once cold, always cold, I guess.

I order her a diet Coke and get a glass of water for myself. We sip quietly as we wait for our lunches to be delivered — a kid’s sized grilled cheese with fries for her, a salad with grilled salmon for me. 

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“Here, don’t you want some of this?” she asks.

And she asks.

And she asks.

AND SHE ASKS.

“No, Mom, ” I tell her each time. “That is your drink. See, I have one of my own. I don’t need yours.”

When lunch arrives, she relishes each bite. But begins immediately with the same, recurring question/statement: “Oh  my, this is delicious! I am so happy, so happy, so happy! Here, take some of this. It is really good.”

She seems to be unable to see that I am already eating from a very full plate. I tell her exactly that, every single time she invites me to eat her lunch. “No, thank you, Mom. I have my own lunch. I don’t need to eat yours. Please enjoy your meal and stop worrying about me — I am doing just fine.”

“Well,” she says timidly, “I surely do not want to ever seem to be selfish.”

“You are not being selfish, Mom. You’re enjoying your lunch, which is yours, all  yours. Please enjoy it!”

After I finish my salad — which I always do, LONG before she is halfway through her own plate — I begin to take a French fry or two from her plate. And she is ecstatic!

“Oh, here! Have some more!”

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I cannot even begin to put into words how deeply enervating I find these outings. I love that she loves to go. I love that she finds happiness in simple things. I love her. But being with her is the most exhausting thing I do these days.  

And there is no end in sight.

I heard a bit of a cough today and, God help me, I found myself wondering if this might possibly progress into something serious, something that might help her transition to that place where she will once again be able to think and remember. 

That is not likely. She is 95 years old, can’t see, can’t hear, can’t remember, can walk short distances only. But otherwise, her health is excellent. Her mother lived to be 101. Her mother’s sister to 102. So chances are, she’ll be with us physically long past the time when what remains of her mind has completely left the building.

I give thanks daily for her life. I see the beauty shining out of her face, the unceasingly cheerful spirit that is indomitable and gracious. I enjoy her occasional attempts at humor and the increasingly rare flashes of that mom-that-used-to-be insight and self-deprecating trash talk. (Today for example: “I imagine those children I hear are looking over here and wondering what strange sort of woman is sitting there under that hat!”)

But I am tired. I am tired of continually telling myself to keep my ever-present impatience at bay, to respond with kindness to the 20th version of the same comment/question, to smile, to hug, to touch, to encourage. I do it, yes, I do it. But sometimes it feels forced, even phony, and I don’t like that part. No, I don’t like it at all.

So I am weary at times. Today is one of those times. I returned her to her room a bit earlier than usual, settled her into that recliner chair in the corner, the one by the window that looks out onto the patio with bright red geraniums. I kiss her and tell her I love her and that I’ll see her next week. I find someone on the care team to tell them she is back in her room.

And I exit the building as fast as these aging legs of mine will carry me, willing myself not to cry out, “How long, O Lord!! How long?”


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Comments

  1. Your title is exactly right. There isn’t a single bit of this post that I can’t relate to. I can still feel the bone-weariness. I’ll offer no platitudes. You know them all already and they aren’t what you need. But I do pray REST and renewal. 🙁

  2. I wish I could take you out to lunch instead.

    Fondly,
    Glenda

  3. Two very beautiful women! You have every reason to be exhausted from these times spent with your Mom, and you shouldn’t feel guilty at that or at wondering how long you (and she) can endure. Not only is the barrage of repeated questions tiring, but your patience is coupled with the distress of ‘losing’ the mother she once was. It’s so understandable but I know dissecting the rationale doesn’t make it any easier. That you continue to be there for her is love in action.

    Is it possible to invite one of your mother’s caregivers to join in your outings? Would that make it easier for both of you to have a third person buffer sharing the conversational challenges?

    • You are so kind, Carol! I don’t think they are allowed to leave their posts and we don’t have the funds to hire a personal caregiver. I do have a dear friend of 40 years who just moved into the Samarkand with her husband. Maybe she could come with us occasionally . . .

  4. Regardless of whether your mouth made the sound of “How long..,” your heart surely called to the Merciful Father from the depths. Somehow, if she can (or could), I think your beautiful Mother understands. I wonder what her heart calls out and says? I don’t know if it helps, but somehow, I am carrying the weight of this with you tonight…I pray you can feel it.

  5. prayers and love winging to you
    in the maze of endless circles I remember well
    may You find Him around each and every curve
    and deep, deep comfort

  6. Oh, Diana. She is so beautiful You are so beautiful. I wish I could go out with the two of you. Know that my heart is walking next to yours.

  7. I completely understand these feelings. I think any long term caregiver of an aging/ailing parent can. You’re a wonderful daughter!

  8. You and your mother are so beautiful, Diana. Like many others, I relate to much of what you are going through. What if a friend or other family member joined you in these weekly excursions — to somehow share in the physical and emotional toil? Sending much love, dear friend, and prayers for endurance AND rest. xox

    • There really isn’t, Patricia. And some days are better than others. For some reason, this one was harder than most. Next time will be better. Thanks for your encouragement along the way, friend.

  9. Sigh.

    My dad has not drifted so far yet, but it’s coming, I’m sure. This window into my future is helpful, as I prepare for the inevitable. Thank you for your honesty, and I’m sorry.

    • I am sorry to say that you are correct in your assessment, Annie. There is only one direction with this disease. There are definite ups and downs and everyone’s journey is different. All four of our parents have journeyed through one kind of dementia or another, and each one was different. Mom is the last one, and for me, personally, the hardest.

  10. Laurie McBurney says:

    I echo what Ann (above) says so eloquently. My mom’s memory impairment is not quite so pronounced yet – she is almost 90 – but given family history and the way things are going it will happen. I want also to thank you for your honesty. I love the respect you give your mom along with your love, freely and without judgement, but with compassion for the bewilderment that comes along with this long decline. I wonder what I may learn in this time; what I can do to bring comfort; and the only thing and the hardest thing seems to be to give my company. It would be far easier for me to be seeking out doctors and organizing activities. But to sit and abide with her, that rubs against the grain; and yet what is most important.

    • You pretty much nailed it, Laurie. I have discovered that I must parcel my time of companionship with some care, however, or it becomes overwhelming, on many different levels. Twice a week for about two hours each time works for now. We’ll see how it all progresses.

  11. Oh Diana. I could weep and weep over this. My Mom isn’t as deep into that foggy world as yours, but we have similar conversations. The repitition and then repeating the answer over and over again in ever increasing volume. I am exhausted when we leave the Assisted Living. And my Dad….he is so bitter and verbally abusive.
    Thank you for your honesty. I thought I was the only one who had such thoughts. I feel so guilty when they flit across my consciousness – like the worst person on the face of the earth.
    Then there are my friends who have lost their moms and they tell me how blessed I am. And so I am. It just gets so heavy at times.
    Praying grace and peace – and even joy for us.

    • Sweet Linda, I know you know this, all too well. And I am so sorry! Prayers for strength, patience, peace and extraordinary love for both of us.

  12. My heart aches because of the ache you carry, Diana. You speak of ever-present impatience, yet your faithful visits, attentive care, and gracious responses to her barrage of repeated questions all indicate strong patience. Anyone can be patient who FEELS patient. You are undoubtedly demonstrating the supernatural variety that comes from the Spirit–a fruit medley (!) of love, kindness, goodness, and self-control, as well as patience. I pray you find some small comfort in that.

  13. Oh, Diana – I’m so sorry you are going through this. I know that weariness and pray for you to find strength and moments of joy. Thank you for being a faithful daughter – you will be rewarded. If you have read my book you will see that I reached the very end of a very long rope at the end of Mike’s life. Take good care of yourself, I wish I had done better with that.
    God bless the caregivers!

  14. Donna Meredith Dixon says:

    While reading your post, I felt again the conflicting feelings one experiences during a nightmarish extended season … one without good resolution on this side. I also gave thanks for you – for opening the door to your soul, letting us into both the love that compels you to kindness and the weariness that drains. Transparency and vulnerability are often costly, but welcomed gifts we give others.

  15. It broke my heart to read this, Diana. When we take care of an aging parent, it is both the most rewarding thing we can do and the most frustrating of experiences. May God bless you both, and continue to give you all the love and patience required to do the right thing by your mother.
    Blessings!

  16. “I see the beauty shining out of her face, the unceasingly cheerful spirit that is indomitable and gracious. I enjoy her occasional attempts at humor ”

    This same thing kept us going through that season of our lives.
    I believe that the spirit is alive and well, so I talked, even when the ability to respond left my beloved Mother-in-law.
    The day, the joy light left her face, I prayed Father take her home.

    I pray a strengthening of your whole being Diana as you walk through this valley.

  17. My heart aches for the burden you endure. I can feel the love but also, the heartache, frustration, impatience and exhaustion in your words. I pray to God that I am spared this cruelest of diseases.
    Not for me but for the sake of my children.

  18. Lynn D. Morrissey says:

    Diana, this touches my heart beyond measure, and I’m so very, very sorry for the battle-weary fatigue (and it is a battle against disease and death and not for the faint of heart; God, please strengthen Diana!). You have proven so worthy of this battle, Diana. All I can think of is what a beautiful, devoted daughter you are . . . and that even minute by minute you are making your mother happy and peaceful. I know the disease is a ravager. I lost a dear friend, my age, this past January after a long, devastating decline from Alzheimer’s. Sadly, her son never visited her. She lived o.o. town, and it was hard for a mutual friend and I to travel to see her (a very long drive). She was alone in a battle-ship gray institution, and never left it or her room. Because of your love and devoted kindness, your mother sees the light of day and the light in your eyes. Somewhere deep in her soul, she sees you. I am staggered by your love for her. Praying for your eagle’s-wing strength and uplifting.
    Love
    Lynn

    • I am sorry for the loss of your friend and that she was so very alone at the end. And thank you for your beautiful and kind words, my friend. I am grateful.

      • Lynn D. Morrissey says:

        In your own kind of grief, thank you for reaching out to me in mine. She was a saint (my matron of honor) and a sweet Jesus lover who led me to Him. Diana, she wrote the most poignant letter when she was first diagnosed, and mailed me a copy. All she could do was thank Jesus for being with her, and asking Him to help her if one day she went to a nursing home . . . and that He would use her as long as she had her mind to help others more unfortunate than she. It was the most unselfish thing I have ever read. I mailed a copy to her son after the funeral, so he would know how much she didn’t want to be a burden to him (which she expressed in the letter) and to be of a comfort to others. I think you have this same generous, unselfish nature, or you could never do what you are doing (especially as weary as you are). May the Lord continue to hold you close. Praying!!!

  19. Diana – I have no words that have not been spoken by your many friends already – but I share in their understanding of you as a splendid daughter – and a generous teacher to us all, offering us your pain and exhaustion to comfort each of us when we too will face inexplicable, arduous journeys of love. Thank you. On another note – you would have been perfectly refreshed and delighted to share in Barb’s joyous, fun 75th birthday party. It was a ball.

    • Oh, how lovely! I wish her (and Mike) nothing but the best! Thanks for stopping by and leaving your usual words of encouragement, Sue. Always glad to see you here.

  20. I have no words to give…it’s such a sad disease for the families as well as the patients. May God give you all you need and your mom too.

  21. Thank you, Vicki. Seems to me your words are the best ones possible. I am grateful for them.l

  22. I love you.

  23. I have followed your journey so closely Diane because of my experiences with my mother-in-law in a nursing home. So this…it’s so easy to relate to in several ways. Even though your mom is in a facility and receiving care, you are the main care-giver from an emotional stand-point, therefore, of course you are weary.

    While it was difficult for you to write (publish) this post, I’m so very glad (is that the right word?) you did, because I think most people can relate to your feelings, whether or not they’ve experienced Alzheimers disease. Who among us hasn’t wondered how long [oh Lord] a season will last when someone (including themselves) is suffering ~ whether that’s through health issues, a wayward child, devastating financial loss, etc.
    I pray that someone takes *you* to lunch! You need an emotional break, even if only for a short time. That’s not selfish, or unspiritual or anything other than truth. I wonder if you could invite a friend every now and again to go with you and your mom to lunch? That might actually break that cycle of questions ~ or at the very least, she will be asking *them* those questions. I have found when visiting the nursing home, my father-in-law gets a much needed break just being able to visit with my husband and I while I feed my mother-in-law and attend to her needs.
    May the Lord renew your strength and bestow a renewed and necessary joy to you in this season.
    Sending virtual {{{HUGS}}}.

  24. Karen Grove says:

    Deeply sad, and painfully familiar. Please have Dick give you a hug from me. Love to you, my dear friend.

    • Oh, I know you know this story all too well, dear Karen. I am trying to grab extra hugs these days! I hope you are, too.

      • Karen Grove says:

        don’t get as many as I need, but that’s mostly because I don’t ask for them. It’s a searingly painful and ugly and unbelievably-awful feeling to wish someone you have loved so dearly would die. One of the darkest feelings I think that I have known. This summer has been one of the hardest relative to my momma. And, of course, what people like you and me do, when we are feeling such conflicted and awful feelings is that we turn the knife on ourselves. Which, of course, is insidiously stupid, unproductive, unloving, not-self-honoring and not redemptive in any sense of the word. And, the shadow side of the entire experience is knowing that we’re next. crap, crap, crap and more crap. So, I’ve been re-reading One Thousand Gifts which is helping me again with perspective.

  25. Diana, this is so … so… I have lived this and know this and feel these feelings all over again. Mama has been gone for 3 years now. She lived to 98 and 10 months. I cared for her in three different care facilities over 15 years. I lived within 2 miles of all three…a senior apt. building, an assisted living and finally a nursing home after she fell and shattered her ankle. Mama was diabetic and had dementia. She was confused at times, and angry, but mostly delightfully my precious mother. I loved her dearly and miss her so, but grateful, in so many ways, that she is with the Lord. I had those same thoughts of wonder when she would get another infection or pneumonia or ???
    I hold you in prayer and ask God to rain His peace upon you, reign in your heart as you care for and about your dear mother. Looking at her in those photos…I could see my own mother sitting in those same positions, with her hands tucked into the sleeve of the other arm.
    Caring through Christ, ~ linda

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