“I don’t know…”

dementia

Time spent with mom has been alternately difficult and smile-inducing the past few weeks. She falls deeper into a mind that forgets days and dates and confuses the people that have consumed her life. Her world-in-the-now grows smaller as her world from the past paints the larger portion of her landscape.

I repeat (several times) to mom the day of the week that I’m there to visit and the month of my birthday. And of my brother’s birthday. Mom believes that she missed both, that she failed to celebrate either one at the appropriate time. “No mom,” I’ll say. “You didn’t miss them. We went out to eat for my birthday and we sent a card to your son for his.” After she fails to remember either occasion, she shrugs and mutters, “I don’t know…” Those have been her favorite three words of late.

Two minutes later, mom will ask again, “When is your birthday?”

I continue to be both this woman’s daughter and her sister, Jeanne. This past Saturday, mom asked if my husband and I had bought the family home in Milwaukee. (While she forgets what happened yesterday, she remembers the name of the street where she grew up.) “No mom, that was your sister, Jeanne, and her husband.” Mom wanted to know if Jeanne was alive and I said, “No mom, she died a long time ago.” I thought about this later and wondered if I had confused her further. Mom thinks I’m her sister, but I just told her she died years ago.

At least two friends have told me to not argue these points with mom, to let her have her own reality. It’s less confusing that way.

I did a better job a week earlier of letting mom believe I was, in fact, her sister. She asked me what I did all week and I answered the usual: I went to work, went to the gym and made myself supper. “The gym?” was mom’s question, which quickly led into, “Do you remember when we were at the gym, sitting on the floor, with our feet together…and I let one go?” She was smirking. I quickly replied, “You farted? How stinky!” There was a seldom-heard belly laugh from the 95 year old. Her sister/daughter joined in.

Those with dementia are still people and they still have stories and they still have character and they’re all individuals and they’re all unique. And they just need to be interacted with on a human level. ~Carey Mulligan~

The stories told, regardless of who I am on any given day, are becoming memories. I close my eyes and try to store them in a section of my own brain: The recounting of ice cream shared with siblings on the front porch, of an uncle that returned to his homeland of Germany, and the countless times that her mother made meals for a family of 15. Mom repeatedly tells me that her own mother “was a saint.” I often wish I had known my grandmother as I bet she was a strong and strict, but loving, woman. I cannot fathom the amount of time and energy she expended in taking care of her large family.

Back to my role as daughter/sister…I wonder why my brother is always her son, why that never wavers like it does with me. Mom never mistakes her son for anyone else. Never. My smart-aleck self screams, “It’s because he’s a sinner!”

What?

My brother has been in a long-term, non-marital relationship that goes against the grain of a strict Catholic mother. Every time I visit with mom, she asks, “Did he get married?” I respond “no,” but say they are engaged (I made that up for attempted appeasement purposes). Mom always replies with, “It doesn’t matter, it’s a sin.” Yes, mom. I agree for the sake of agreeing. It’s as useless to set her mind to rest over the matter as it is to resist The Borg or a double-dark chocolate chip cookie. I don’t know if it’s the dementia or mom’s persistent will, but she can be like a lion clamped down on a piece of raw meat. She doesn’t let go.

Mom’s confusion will drive her to make anxiety-filled phone calls to me in between visits.

“You need to come right away!” 

“Mom, it’s 7:30 at night. What’s wrong?”

“My checkbook…it’s a mess. The checks came out and now I can’t get them back in.” Mom tells me this with a trembling voice. To her, this is a tragedy.

I have no idea why she was in her checkbook as she doesn’t have the vision or steady hand to write checks. I could guess that it relates to her constant question of how much money she has and will she have enough to stay there. My answer is always, “Don’t worry mom, you have enough money and you don’t have to go anywhere.” It never calms her mind. She’ll ask again next week about the money situation. I did not rush to mom’s aid that night. A calm voice and a promise that I would fix her checkbook on that Saturday brought some ease, although mom ended the call with her favored, “I don’t know…” I suspect that she forgot about the entire phone call by the next day, instead focusing on how much she detests the food that is served at assisted living. She calls it “crap.” Evidently, that’s a word that she has not forgotten.

dont-know

This may sound awful, but I have learned to lie to mom. For her own well-being. Just as she worries about the balance of her checkbook, she has no clue what goods and services cost these days. I lie to her about how much her perms cost, how much she pays toward room and board, and items I pick up for her at the store. If mom believes that I overpaid for anything, she becomes agitated. “Fourteen dollars for a hair cut? That’s too much!” That was actually the truth. Fourteen dollars. I didn’t tell her that I usually pay around $30 for my own hair cuts, which I consider to be fair. Mom would probably faint. In reality, I try to share as much of the truth as possible, as long as the truth doesn’t confuse or irritate.  Some days, it’s a fine line that we dance around, kicking our heels up between the past, the present, and an opaque cloud of what’s in between.

Most days, mom remembers her husband, but she doesn’t talk about him as much as she talks about her childhood, parents and siblings. When we visit dad’s grave, she tends to be silent. On Saturday, mom asked if her name was still on the tombstone and if the flag would be all right through the summer. She does not remember when her husband died, unless I tell her. I imagine the last three years have felt like an eternity.

It is what it is, the present. There isn’t anything I or anyone else can do about mom’s situation. I can’t revive her sight or hearing or wave a magic wand for a clear mind. What I can give mom is the interaction of a sister/daughter, a day out for a meal and ice cream, or a listening ear when mom calls to insist she’s supposed to “be somewhere.” I used to pray for those things – a moment of clarity for mom or the ability to see flowers with color. That has changed recently, as I pray her prayers to be answered. Mom asked one of her repetitive questions on Saturday, which led to an interesting end.

“What kind of church do you go to?”

“It’s non-denominational, mom.”

“What’s that?”

“It’s not a Catholic church, mom.”

*pause*

“Do you pray at your church?”

“Yes, mom, I do.”

Then I turned into the questioner…

“What do you pray about, mom?”

“I pray that I go to heaven.”

“I don’t think that’s in question, mom.”

“You think so? What if they run out of room?”

I smiled. “That’s not going to happen, mom.”

“Are you sure?”

“Yes, I’m sure.”

With a sigh and a shrug, mom simply replied, “I don’t know…”

26 responses to “I don’t know…”

  1. Judy L. Brekke says:

    Beautifully written, Mary. You are a wonderful daughter and a gift to your mother!

  2. Dan Antion says:

    I had conversations like this years ago with my grandmother. They are hard but sometimes you gain a little something. It’s a good thing you’re doing. You’re a good daughter/sister 🙂

    • bikerchick57 says:

      I have actually learned things about my mother and her childhood that I never knew before, like the farting episode. Those conversations always warm my heart, but they also make me wish I had spent more time with mom and dad in their 60’s and 70’s. When they had their health. I missed so much.

      • Dan Antion says:

        I didn’t speak to my mother for another 15 years (long story). We made peace three years ago. Cherish the day, don’t beat yourself up over the past.

  3. Relax says:

    Poignant. I pointed out to Janet in the nursing home the photo on the outside of the anniversary album her kids had put together. Pointing to her, I said, “Is this who I think it is?” She smiled and said, “It is indeed me.” Then I asked, “Who is this fine looking man standing there?” She said in 100% seriousness, “Oh, that’s the man Janet married.” 🙂 Couldn’t make definitive heads nor tails of it. Hang in there. She’s happier than you know, I think.

    • bikerchick57 says:

      That sounds pretty familiar. Mom is always happy to get out on Saturdays for lunch, especially when the weather is nice. Spring and summer are good seasons for her.

  4. joannesisco says:

    Your post brought tears to my eyes. I too lived through this. There are times I laughed because the stuff she came out with was just so damn funny … and other times it broke my heart.
    I started to miss my mom long before she passed away.

    You noted in an earlier comment about how you wished you had spent more time with your parents when they were in their 60s and 70s. Yes – I know that one too. Lost opportunity.
    As you are discovering, the stuff she says now is precious because you get glimpses into her unknown past.

    At least it sounds like your mom’s past was a reasonably ‘happy’ place though. For that I’m really happy for you. My mom’s was not and her final years were filled with re-lived terror. It was heart-breaking and the years since she has passed away have not erased that pain.

    Big wellie-eyed hugs to both you and your mom ❤

    • bikerchick57 says:

      Joanne, I am so sorry your mom lived her final days with terror and that you had to witness it. In that way, mom is blessed with happy childhood memories. I fear that she has forgotten many of her memories with dad and with her children, but I guess that will be resolved when she makes it to heaven. 🙂

  5. M-R says:

    M-J … You know how much I love your writings about you and your mother, but this one seems, somehow, particularly wonderful. Not too many mothers in this world have daughters offering the same amount of love and care, of dedication and selflessness. Those little ‘lies’ you tell her are nothing of the sort – they’re reassurances.
    One day, I can see a book. I hope very much, that is. It would be a wonderful, exalting book.
    Please keep it in mind.

    • bikerchick57 says:

      M-R, do you know that I love your sock-changing backside? Thank you for your support and encouragement. It means a great deal. I’ve thought about writing a book, perhaps some time in the future when I’m retired and can put my whole heart and soul into it. Stay tuned!

  6. loisajay says:

    Shortly after my dad went into a home (about a year after my mother died), I was on the phone with him and he got real quiet and said, “Lo, you gotta get me outta here. These people here are all nuts!” Honest to God, I did not know how to respond.
    Your mom is a pistol and I loved this.

    • bikerchick57 says:

      Mom just called me and tried to talk to me sans her hearing aids. She wanted me to get her out of there and take her home. I called the office and the night nurse said mom was in a tiff because her laundry hasn’t been folded and put away. Yep, that’s my mom 🙂

  7. Cathy Ulrich says:

    This is beautifully written, Mary, and it’s very clear how much love you share with your Mom. You’re an amazing sister/daughter! I get from reading this, that there’s no way to make sense of everything, but in a way, it all makes sense. She’s trying and you’re trying and the love is still always there. Blessings to you, dear Mary.

  8. moylomenterprises says:

    Aww, so sweet and sad at the same time. Bless you both.

    • bikerchick57 says:

      Thank you! I often feel a range of emotions when I visit mom, because that’s how it is. She has, however, taught me a very valuable lesson in patience.

  9. I still hope I get to meet your mom, Mary. She can believe I’m whoever she wants to believe I am, and I’ll play right along and sip cosmopolitans with her.

    It’s got to be so agonizing to watch your mom become a person you don’t know, or not the person you knew for so long. I admire you for how you’re handling it. As someone said above, you’re burrowing into who she was most likely before she had you. Those glimpses are still her, just not the her she showed you as your mother for most of your life. I know that doesn’t help when you miss that person, and she’s sitting right in front of you, but she’s not the same.

    • bikerchick57 says:

      I hope you can meet her too, Andra. Thanks for the kind words, for being so supportive. I think I’ve stopped agonizing about the person mom has become. At some point, reality strikes and you realize you can’t change it, only make it comfortable. So I try to give her comfort in the ways I’m able, like taking her out for Saturday lunch. I’ve been enjoying our time because of the stories and finding out about the young Pauline.

  10. I got a bit behind but I’m glad I came back to this. Wonderfully written, M-J. You’re doing a terrific job in difficult circumstances and I love that you are able to keep your sense of humour.

    • bikerchick57 says:

      Thanks H. Keeping a sense of humor is important through all of this. Some of the things mom has said lately makes me LOL. Like when she called her food at assisted living “chicken shit.”

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.