Family

June 06 2013
22


Every couple of months in this space, I am chronicling the journey with my mom (and a similar journey with my husband’s mom) through the ravages of dementia. I have learned that I do not take this journey alone, that many of you walk this road, too. And somehow, writing it down, saying it ‘out loud,’ helps us all to manage the pain and the fatigue of this particular path.
You can read earlier posts here, here and here.

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Enormous chunks of time are gone now.

How can I watch this? How can I help? How can I say the right thing, do the right thing, be the right daughter?

I am beyond knowing most days. Beyond knowing.

We made plans last weekend for my youngest brother’s two sons and one daughter-in-law to make the long drive from their home to ours. My youngest brother, the one who died in his sleep just over three years ago. This would be the first time these nice kids would see Mom in her new living environment, the one we moved her to in February. The one designed for memory and cognitive loss residents.

The one that reminds me every single time I am there that my mother is fading into the woodwork, that the woman I knew is vacating the premises.

I have learned not to tell Mom about visitors or traveling plans too far in advance. When I do, she frets over it multiple times per day, convinced that NOW is when it all happens. Several weeks ago, she asked me to contact Ken’s boys; she wanted to see them. I was happy to do that.

Thank God for Facebook — connections were made, plans set. One day before our time together, I told mom that we would all go out to lunch together. She was excited and grateful and seemed to understand – seemed being the operative word.

Alarming situation number one: when we arrived, parking in the subterranean lot beneath the wing in which she lives, riding the elevator and turning the circuitous route to her unit, we found her standing outside the building, as cars drove nearby. Maybe that bracelet will be necessary after all, the one that sets off the alarm if she leaves with no one noticing.

I dread it. Dread it.

Alarming situation number two: after greeting everyone gladly and expertly, she climbed into our car, while the younger generation climbed into their own, to follow us to the restaurant. “Who are those people?” she said.

Who are those people?

These, dearest mother-of-mine, these are the very ones you so wanted to see. The very ones. How do I answer you without letting the deep panic I feel creep into my voice? How do I DO that?

Alarming situation number three: my darling mother had no memory that her son, her baby, is dead.  Then it all came flooding back, right there, in the backseat of our Honda Pilot, as we drove to lunch on a Sunday afternoon. Tears, sobs, deep sorrow, and multiple explanations about who each young person was, how they were related to one another, to Ken and to her.

More and more, it feels as if this dreadful process is a strange and twisted version of Groundhog Day — the horror movie version. Old memories disappear, submerged beneath the sea of a shrinking hippocampus. Then they jump to the surface, fresh and sharp, like icebergs that head straight for the ship of her heart.

She was overwhelmed and embarrassed that she could not find the pieces, that she could not tell the story. “What must they think of me?” she asked in the car, “Have I abandoned them?”

“No, Mom. You have done nothing wrong — they are so glad to see you. Oh, Mommy! You are so good socially, they don’t even know you’re struggling!”

I think she believed me. I hope she believed me.

And she was able to cover her confusion, at least a little. But that is getting harder and harder to do. All during lunch that day, she would whisper to me, “Now, who is this sitting next to me?” Later that night, and the next night as well — “Tell me again who they were and how I know them.” Finally, today at lunch, she seemed to have most of the pieces in place. Until she realized that meant that my brother must have been married at some point in his life — and another round of panic set in. “Why can’t I remember?” she asks me, tears rimming those blue eyes.

Every dementia journey is unique, I’m told, each story a little bit different. I have to say that I do not like this one, not at all.  The only ‘happy ending’ I can see is a pretty grim one. It looks like this: my mother is no longer aware that she is losing it, no longer able to worry about what others think about her, no longer concerned about what she remembers and what she doesn’t, no longer frightened when she realizes entire chunks of her life have fallen into a sinkhole, never to be seen again.

The problem with this scenario is that once she gets to that place — that hard but strangely easier place — the only thing left is death itself.

And right now, death is looking like the best option available.

Do you have any idea how hard it is to write those words? How hard it is to think them? To pray them?

Oh, dear Lord, give me eyes to see your goodness in the midst of all this pain, to find grace in the grim realities, to remember that you are Sovereign over aging brains, that you love my good, beautiful, funny, outrageously intelligent and faithful, Jesus-following mama even more than I do.

Because right now, Lord, right now?  Trust is harder and harder to find. And I find myself crying with the psalmist, “How long, O Lord, how long?”

 

22 comments

  1. I am so sorry that you and your mom are suffering so.

    Fondly,
    Glenda

    Reply
    • Thank you, dear Glenda. You are such a good friend.

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  2. Weeping with you here, on this side of the screen. I can almost see the tears rimming your dear mama’s eyes as she struggles to remember. And I feel yours, not wanting even to think or write the words about where help and healing will come.

    Praying for you and your dear mother this morning. May God’s Spirit breathe peace deep into your souls to fill up those spaces where chunks of time are missing.

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    • Thank you for your tears, Nancy, and for your words of blessing here. They mean a lot to me.

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  3. “…no longer frightened when she realizes entire chunks of her life have fallen into a sinkhole, never to be seen again.”

    I had the strangest peace after my Dad finally crossed over to not realizing. He was in less pain and I think I was then allowed to be in less pain and tend to him just as he was.

    You are capturing this journey better than I have ever seen it done. I know you’d rather not have this story to tell, but it deserves a voice and your gift is to give it one.

    I hear the words I am saying to you and know I need to consider them myself as I face a story I do not want to be mine.

    Keep writing on this, as you can.

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    • Oh, sweet friend – thank you so much for these so-kind words. And I am praying for you as you wrestle with that hard story of yours. Some hard stories cannot be written – at least not yet. I’ve got a couple of those, too. This one is beginning to feel like a calling of sorts. I know it is a privilege, but one I’d just as soon not have, to tell you the truth. And I get that the shift to ‘not realizing’ is a relief in a lot of ways. Still, I dread it.

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  4. ro elliott

    This cruel disease is a mystery within God…continued grace, wisdom and endurance as you travel this hard road with your dear mother…her smile is sure sweet…who she really is still shines through.

    Reply
    • ‘a mystery within God’ – yes! And I am so grateful for that smile, believe me, as I am grateful for the flashes I still see of the mom I’ve know all my life. Thanks for commenting, Ro – you are always so kind.

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  5. I am so sorry. I hurt for you both. I know it’s not much to offer, but (((hugs))) and love and prayers from the heart. Thank you for sharing this.

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    • Hugs, love and prayers are not trivial things, Jamie. And I thank you for them!

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  6. Prayers, hugs, tears. Walking beside you.
    Left another comment on your home blog…

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    • Thanks for leaving kind words in both places, friend. I receive the prayers/hugs/tears with gratitude for them and for you.

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  7. This is the slowest way of losing someone and a dying so many times. I’m so sorry, Diana. As they say, the only way out is through and this seems like such a slow-burning fire to have to bear. Holding you in prayer. Sending love from here.

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    • Exactly – ‘a dying so many times. . . ‘ Thank you.

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  8. Someone once asked me a theoretical question: “If you had to have an illness, which would you choose, Alzheimer’s or Lou Gehrig’s?” All I could say was that I hope God would never give me a choice like that. To have full mental capacity and know that your body will totally fail you… or to have full physical ability but have the mind totally fail. Both are incomprehensible. During my father’s decline from Alzheimer’s he didn’t seem to recognize his memory losses, so except for brief times of confusion it rarely upset him. I also found his memory switched on and off, so one day he would recognize me, at least for a while, and another he wouldn’t. On the latter days he was polite as we visited like strangers. It broke my heart, but there was some relief in knowing that he didn’t realize his loss.

    I pray for your mother in this time of difficult transition, and especially for you. The day-by-day losing of someone you love is unspeakably hard… and yet you bless her and us by speaking of it.

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    • What a horrible question! And thank you for your good, truly empathetic words, Carol. You’ve been here. You know.

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  9. Oh, Diana.

    I’m crying. Not weeping. CRYING. For you and your dear mother. For my departed auntie (finally). For my own beloved grandmother. Yes, it was easier when she didn’t remember anymore that she was forgetting.

    The saddest “easier” of my life.

    Your faithfulness in holding a lantern to this wretched, twisting path–it’s a blessing to so many. I know God looks upon your care of your mom, your lighting a way for those of us who walk this painful mystery behind you, and He smiles. I just know it.

    You all remain in my prayers, dear Sister.

    Reply
    • Thanks for those tears, Sheila, and for these encouraging words. Sometimes it feels too dark to go there again, but it also feels important. There are beauties to be found, but you gotta look really, really hard. So that’s what, by the grace of God, I’m trying to do. (I’m glad you’re crying for your aunt, Sheila – those tears have been dammed up too long.)

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      • Thank you, Diana. Yup. A bit over a month. I just plunged right into everything that needed to be DONE, you know, because no one else was available to DO it.

        I’m welcoming this grief.

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  10. Oh Diana – my heart aches for you. I will be praying. I understand about trust. Just when I think I’ve settled in, life throws me heartache and trust begins to crumble. I am convinced it is the journey of a lifetime and that the Father wants, above all things, to instill it in us. I wonder if it is because to trust we must come to know who He really is?

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    • Thank you, Linda. It is tough to walk faithfully at times, especially when we feel overwhelmed by sadness and difficulty. But I do think it is there that we learn exactly what you’ve stated – who God really is. So, I keep plodding along, praying for eyes to see and ears to hear. And I thank you for your encouragement along the way.

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