When There Are No Easy Answers

Dementia is a strange process. My mother has been diagnosed with Alzheimer’s disease, but who knows exactly what kind of dementia she suffers with? On the way home from our quite wonderful worship service today, I said to my husband that I needed to be with my mom today — wonderful family events have filled our days during this graduation season and my time with her has not been quite as frequent as usual. And the sermon was on the centrality of the cross to our faith, with an emphasis on the power of self-denial (not self-abnegation or self-abuse). We were reminded, with great care and attention, that the centrality of our call to follow in the footsteps of Jesus from day to day is to, ‘pick up our cross.’

As self-serving as this may sound, I know what my cross looks like these days.

A quiet afternoon at home today would have been nice after our hectic week. A nap would have been nice. It is possible I was not in the best shape to spend three hours caring for my mother this afternoon. In truth, it is more than possible. 

As usual, I called her unit and told them I would be there at a certain time, could she please be ready? When I arrived, she knew someone was coming to get her, she knew that I was important, but she didn’t quite understand who I was or why I should come to take her out.

I do this, on average, every 3-4 days. Not daily, not yet . . . maybe never. But often and regularly. Each time, it is brand new to her.

These are the regular questions during the first five to ten minutes we are together . . . every single time:

“Where are we going?”
“Should I bring this (pointing to her walker)?”
“What a nice car! It rides so smoothly! Sure is a good thing I’m not driving — look at all those cars!”
“Now, who are you again?”
You’re my daughter?” 
“Oh, my goodness! How smart of me!”

We drove around and around the parking garage at the mall, searching for a place to put the car that wasn’t too far away from an elevator. She kept asking questions the entire time, a litany that went around and around the same territory.

Finally, a spot opened! In we went, out came the walker, out came my mama. Slowly we made our way across the row of cars to the large, very slow elevator, taking it up to the ground level and walking across the breezeway to California Pizza Kitchen.

After safely ensconcing both of us in the booth, I began to peruse the menu, trying to decide what to get for the two of us. We usually go out for lunch during the week and the CPK menu changes on the weekends. While I searched, my mother kept talking. Some of it was routine, some of it was convoluted, some of it made no sense. 

“Mom,” I said carefully and clearly. “Please do not worry so much. Let’s just stop and look around this lovely place and be glad we are here together, okay?”

She took a breath, I went back to the menu. Then she started in again. At a loss for what to do next, I picked up my cellphone, holding it in front of my face and I started taking pictures of her lovely, expressive face, wondering how to deflect this almost frantic routine. 

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“I don’t have any money. I can’t find it. I’m feeling a little confused, I guess.”

“What are you confused about, Mom?”

“Well, I think I need to find something to do, something that’s helpful.”

“What are you thinking about doing?”

“Well, I was thinking about where I go to get this done (pointing to her hair), and wondering what I might be able to do to help her up there.” (The beauty parlor is across the driveway and upstairs from where she spends her days.)

“Well, Mom, you’ve worked hard all your life. Maybe it’s time to just enjoy your life.”

“How do you know about my life?”

“Well, because I’ve known you my whole life.”

“Are you related to me?”

“Yes, Mom. We are family.”

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I then went back to reading the menu, looking somewhat frantically for the waitress to ask a question and then, hopefully, to order for us both.

She continued to talk.

“So, in some way we are related. So would it be all right if I asked you about that and we kept talking about it?”

I did not immediately reply.

“I take it from your silence that you’re not interested in a relationship with me?”

I looked up suddenly, momentarily a little confused myself! “Yes, Mom, I’m very interested in a relationship with you! That’s why I come and see you every few days, that’s why we go out to lunch together.”

“You come to see me every few days? Me? Are you sure it’s me you see?”

“Yes, Mom, I’m sure it’s you.”

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“Well, why can’t I remember that?”

“Because remembering is hard for you now, Mom.”

“I better get to the doctor!”

“We’ve been to the doctor, Mom. We’ve been to lots of doctors. I’ve taken you to doctors for the last eight years or so.”

You have? Why would you do that?”

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“Because I love you and because you wanted to find out what was wrong with your memory.”

Then, out of the blue, “I really need to go the bathroom.” So I got up, helped her to get up and we headed down the ramp just behind our table. Just then, the waitress arrived (thank goodness!) so I asked a question, got the answer I needed and quickly ordered.

Mission accomplished, we were back in our places in ten minutes.

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The questions began once again, heading in slightly different directions:

“I’m a Christian – are you a Christian?” (This particular topic was brand-new this week.)

“Yes, Mom, I am a Christian.”

“Well, that’s good. You know I used to be quite a spiritual person. And I think I need to be spending more of my time praying.”

“Well, praying is one of the best things you can do with your time these days, Mom.”

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“You called me, “Mom.” Why did you call me that?”

“Because  you are my mom, and I am your daughter.”

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“I’m your mom? Did I give birth to you? Did I take good care of you?”

“Yes, Mom. You have birth to me and you took very good care of me.”

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You’re really my daughter? Why, that’s wonderful news!!”

 

Yes, Mom. I am really, truly, forever your daughter. No matter how many times in thirty minutes I have to tell you that truth.

I am your girl.

You are my mama.

And I am exhausted.

 

When I brought her back to her room, I remembered to check her closet for the personal supplies that I provide for her care. She was out of everything. So a trip to CVS was in order, requiring a careful shuffling through my collection of coupons and discounts. I loaded my car, returned to the facility and a volunteer, seeing me fully loaded, pushed in the code required to open the door to her unit. 

As soon as that door opened, I saw my mama rushing (and I do mean rushing, moving faster than she ever does when we are together) toward the door, shouting, with a frown on her face: “Leave that door open! I’m going out!”

Ah, no, Mom. You are not going out. As much as you might like to go out, it is not to be. 

There were no jokes today. No threads of hymns, no singing. Confusion reigned completely this time. 

On my return visit, she did not see me. She did not know me at all. I was simply the one who opened the door and she wanted OUT.

I find myself praying that the way out will come near, near, near.

And in the middle of that prayer, heading my little Honda home, with tears building behind my eyes, I remembered the rest of this morning’s sermon: “Get thee behind me, Satan,” Jesus said to Peter. “Get thee behind me.” 

‘Behind me.’

Oh, Lord. Help me to place myself behind you. Not leap ahead into the future, not try to force anything by the (oh-so-limited!) power of my will. Not second-guess, not over-worry, not even ask ‘why?’ 

My mother is who she is. She is where she is. And despite all evidence to the contrary, I will choose to believe that she, too, is safely behind Jesus, following in the only way she can — blindly, gropingly, feebly . . . but . . . oh, so faithfully. 

Help me, Lord, to honor who she is right now, incessant questions, confusion, frailty — all of it — who she is right now. Help me, Lord.

 

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Comments

  1. Oh, the endless questions! It isn’t really a comparison, and yet I remember one of our grandchildren on a summer camping trip asking a seemingly unending barrage of questions about something a friend was doing. We three families were in adjacent campsites. The what are you doing, why, can I help, but how come, when will you stop, can we do it again, why, why not … the questions kept coming until our friend’s patience wore thin and he suggested the child’s mother must be looking for him. The child cheerfully ran off to check, but was back in about three minutes to initiate another similar conversation. I was amazed at our friend’s patience, knowing I would probably have given in to my desire to say, “Enough already. No more questions.” But that wouldn’t have been kind at all. And our friend was a very kind person.

    Like you, Diana. You have such a kind, compassionate heart. And you DO honour your mom, so very well in these difficult days. I can understand how stressful a glimpse into the future must be, and I pray for emotional endurance for both of you.

    • It is a kind of comparison, I think. I remember several years ago (about ten, to be more exact!), when we took both our moms on a cruise through the Panama Canal – Kathryn was 90 that year and my mom was 85. I wrote to my brother that it was a lot like herding toddlers, but the conversation level was a bit more erudite! That seems an eternity ago now – Kathryn began to slide into dementia about two years after that and my mom followed within another year.

      Sometimes it’s hard to believe that I honor my mom, especially when I can feel the frustration level and the impatience rising like bile in my throat. Lots of silent praying going on at those times, that’s for sure. Sigh.

  2. Gwen Acres says:

    Dear, dear Diana, This burden of love is not light. You have loved long and hard. It is so difficult to think how your Mama lives with all the confusion and fear. Thankfully she lives in one of the best of places and she has one of the best of daughters. May peace and rest be your Mama’s and yours.
    You have recorded an amazing array of your Mama’s heart and soul.

    Lovingly, Gwen

    • I cannot imagine what it must be like inside her sweet head! And, of course, I often do imagine it happening to me. I cannot comprehend the terror she must feel from time to time. She does live in one of the best possible places and for that I am deeply grateful.

  3. What a tender, yet haunting window into the world of dementia/Alzheimer’s… may His grace upon grace continue to give you what you need while walking this out.

    • “. . .haunting window. . . ‘ Yes, that is what I hope to provide. This disease is on the rise and almost everyone will be touched by it somewhere. If our journey can help normalize that in some way, then I am glad. But then, how can such loss ever be ‘normalized?’ Thank you for your kind words and sweet blessing, Donna.

  4. May God grant you His grace, peace and comfort as you tend your mother’s needs, Diana. You are, indeed, a blessing to her whether she is capable of realizing that or not.

    • Like everything else she says, I hear repeated, “Thank you’s” every time we go anywhere. She is deeply grateful for the chance to get out, to look around, to have a small adventure. And I’m glad I can provide that. Even on the days when she simply cannot get out of her own way, even when fear rules and the repetition is suffocating. Even then, I am glad we can go out.

  5. This so vulnerable, my friend. I know it is not easy to share such heartache, but your life is teaching me…all of us. Thank you.

  6. Pam Green says:

    Diana, my tears flow with yours. I just keep asking why? Does a spiritual reply come to mind? No, I’m afraid what popped in my head was the saying ” Ours is not to know the reason why, ours is but to do or die”. Not very encouraging or uplifting is it. But yet….isn’t that really true? You continue to visit your Mom because that is what you must do ,because you love her so very much. I’m sure after these times with her you feel like retreating to your bed in the fetal position, but through Christ’s strength you return to visit your Mom again . You are serving Our savior and giving Him glory. I pray for God’s continued blessing on you .
    With much love,
    Pam

    • Well, that phrase may not be biblical, but I do think it’s pretty spiritual, actually! And yes, it is true. Asking why doesn’t ever help very much because there are no easy answers. Hence the title of this piece! Most of the time, I actually love taking her out. But on days like this one — I am just done. I think what I’m witnessing right now is the downward slide again after the up-tick that the re-intro of Aricept brought us in March. And this time around, it’s just as painful as it was before. Maybe worse, actually. I thank you for your kind words, for your tears, and for your prayers, dear cousin. They all help.

  7. Well I got teary-eyed at lunch today reading your most recent story about mom and I thought I should share why. About thirteen years ago, my birth mother made contact with my dad while attempting to locate me. Mari, met with dad and immediately, he knew she was my biological mom. Her first question to him was, “Is she a Christian?” After all of her waiting and searching for me, she wanted to know if I was saved before anything else.
    Today, I am so fascinated by God’s lifelong connection with your mom. I am moved by your mom wanting to ensure you were a Christian too. In all her years of being a Christian and in the middle of her confusion, she witnessed to you, she advised you she was a Christian and wanted to know first thing (after finding out for the umpteenth time that you were her daughter) if you were a Christian too. Her faith is there, it’s always been there and you got a glimpse yesterday of how deep rooted not only her faith is but her witness of God’s grace to others, even those she has only known for a minute. What a blessing and confirmation of her long eternal life to come.

    • Oh, Kim. Thank you for sharing this tender story with me and for connecting it so beautifully to my story here. Yes, she belongs to God, body and soul and I stand on that truth, leaning into hope as I do. You are so dear to me, Kim – I am always so glad to hear from you. Please greet your family for me — all of them, wherever they are. I hope they are all well and happy.

  8. I’m quite without words dear Diana – thinking of my own precious sister-in-law, now silent, smiling sweetly, absent. So many of us are following your journey with your beautiful mother, thankful for the light that you shine onto this twisting, rocky path which we all pray to avoid. God be near.

    • It is so hard to watch this, isn’t it? And yes, I do pray that Dick and I will avoid this particular path. But I am also always looking for the patches of grace and beauty that remain. It’s just that this particular day proved to make that difficult to do. There are days like that, you know?

  9. Donna C says:

    Oh Diana, this is brutiful. Such a hard, hard place for you and your mama. Your constancy of love and care for her is inspiring.

    • That’s a good word you’ve coined there, Donna – spot on, actually. Some days, what I see is so lovely, it takes my breath away. This day was not one of those.

      I am working on getting you the newsletter, but so far haven’t figured out how to do that. What you may have to do is unsubscribe and then subscribe again. There is no way for me to send it directly – it’s an automated system and I’ve got my blog guru looking into ways around that. I’ll let you know.

  10. It’s a long, hard road to walk with your mama. I pray for God’s peace, comfort, endurance and strength be yours.

  11. You are the epitome of a gracious, loving daughter, Diana, attending to your mother so diligently, even though she cannot remember all you’ve done. Your photos of her capture the confusion and frustration she experiences. Such a hard thing–for both of you. I don’t think it is wrong for you to pray that your mom be released from her mental anguish. Even the apostle John prayed, “Come, Lord Jesus” (Rev. 22:20). Yet in the next verse he wrote, “The grace of the Lord Jesus be with God’s people,” as if to say, “In the meantime, Lord, as we wait for you to come, grant us your grace to persevere.” That’s what I see in this narrative-post: grace.

    • Thank you for your kind words, Nancy. When my mother still had more of her wits about her, I did talk to her about the fact that I am writing about her story. But I don’t want to in anyway be invasive, or overly personal in these accounts. It’s a very fine line to find, and this one worries me because of all the pictures. But somehow it’s the combination of the pictures and the story that really brings home the truth of this terrible process.

  12. Your words are always descriptive, as you are a good story teller, but these photos … oh my! The really capture what you experience each week and what your mom experiences, in her own way.

    Sending love from Chicago.

    Fondly,
    Glenda

    • I’m not sure what triggered this series of shots, except that I felt so lost myself, trying to help her make sense of things. Being with someone who is so seriously disoriented to their entire life tends to make the one not (yet!) suffering from dementia disoriented as well! Thanks for reading, Glenda. Love back to you!

  13. Margaret Kirk says:

    Sweet Diana,
    I can only “ditto” the comments you have already received. I, like many others, have walked a similar walk with my parents. My hearts cry was always may I honor them and may I have no regrets–meaning doing everything possible so that in the end I would know that I had done just that…it is so clear that you are honoring your mother even in the hard times; making hard decisions, responding to countless and repetitive questions, spending quality time even when her quality of life is failing. I found that in spite of all I tried to do for my mom I still have some regrets, but truthfully they are regrets in things that I had no real control over. Somehow after the fact it felt like surely I should have been able to make things better, different.
    I think of you often and always pray for you that God will ensconce you in his grace and peace each time you visit with your mother and that you will be refreshed and strengthened in your spirit though your heart is breaking.
    Blessings
    Margaret

    • Thank you so much, Margaret, for these kind words and for your prayers. I don’t want to have any regrets, either. But I think all of us who love are parents and watch this happen to them will always have some — even though, as you noted, they’re not truly rational. We can’t make them better — that is not ours to do. But we can, hopefully, make a few moments better, here and there. Before the dementia became obvious, I used to tell my mom – who lived three hours away from me then — that my monthly visits to her had one purpose: FUN. I felt like she didn’t have enough of that in her life, so we always went to lunch, to a movie, shopping when I came to see her. I think maybe the first clues of the incursion of the disease happened the last time we went to a movie, actually. She could not follow the plot at all. I wrote it off to her increasing blindness and deafness. But now I know it was more than that. Sigh.