Tuesday, December 7, 2010

Mother, Interrupted

Here's what happens when your mom is diagnosed with Alzheimer's. At least if you're me. There's this total scoffing at the doctor's diagnosis. There's the trotting out of a hundred tiny facts your mother remembers even better than you and you're thirty years younger than her. There's the railing at a system of treating the elderly that throws them into categories: one gets dementia, then next Alzheimer's. Next!


Then you notice that she loses a few words here and there. Easy words like the names of her favorite restaurant or the word "checkbook." Then you notice her conversation becomes a little constrained, topic-wise, like she only wants to talk about food, she can talk about it for hours, yet she only says the same thing over and over again - how good it is. You find yourself missing your mother and she's sitting right in front of you.

Then maybe there's an interim event - a fall perhaps, or maybe a car accident, in your case. And then there's no more room for denial. Denial packs a bag and slithers away in the middle of the night. When your mother is recuperating from her injuries, which means she's finally left her convalescing couch, her world becomes constrained. She stopped cooking during her weeks on the couch and now, she tells you, she no longer cooks. Nor your stepfather. Food just magically appears every day and, anyway, they don't eat much. Some rice, some noodles, maybe a piece of challah. And, yes, it's good. Very, very good.

The mother you had - the annoying, argumentative one, the one you used to butt heads with, the one who used to find a way to interject a Holocaust story into every conversation until you were sure you too had lived in the forest running from the Nazis, that mother has been interrupted. And in her place? A different mother. A different kind of mother. A mother and a daughter and a child all at once.

Interrupted.

Have you ever had diagnostic news where your first reaction was denial? Have you ever had a relationship interrupted abruptly due to illness or otherwise, something other than you had planned?

24 comments:

  1. yes, with my brother. Watching him slowly wither is sad and excruciating. His unwillingness to acknowledge it is surreal. But at least he is with us. This must be so hard. Hugs.

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  2. Yes - my mother was diagnosed with throat cancer while I was in nursing school. I'll never forget the walk up the long dorm hallway to my room after getting the news on the pay phone. No one else in my dorm world knew, and I walked back into the room with my friends and suite mates and said nothing. Didn't tell anyone because that kept it from being real. As crazy as it sounds, I kept it on the down low for quite awhile with them. Sad little girl.

    I'm so sorry you're family is experiencing this but glad you have such a large family with whom to share this part of your mom's journey.

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  3. I'm so sorry, Linda. Each conversation with my mom seems to show her heading in that same direction. She used to be so kick-ass, so smart, so quick and suddenly, I'm the mother. Hang in there :)

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  4. Linda--You are handling this with such grace. I remember seeing Sandra Day O'Connor on "60 Minutes" telling the story of her husband who had Alzheimer's. He was in a home and he'd fallen in love with another woman. I was blown away by her love and grace for a man she WAS still married to. She still visited him and honored a man and their relationship by letting him go. Take care.

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  5. It is sad to see her this way. I just do what you do. Try and spend as much time as possible. Enjoy the new and old her.

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  6. I have a small sense of what this is like. Small. Both my grandmothers slowly disappeared to the disease. Every time I have trouble with my memory I hope it is only "natural aging" and hormones and stress.

    This must be extraordinarily difficult. Sending hugs.

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  7. I can't imagine how hard this is for you. I experienced it with my grandparents and it was very hard on my parents. Tough on me, too, but harder on my parents. I was older when my maternal grandma went through it, so I know what to expect with my mom.

    I feel for you. This is going to be very hard.

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  8. I haven't gone through this. It seems like hard stuff, but I guess my siblings and I will do our part if something like this arises.

    You're handling this with such grace, Linda. I know it must be very hard.

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  9. Linda, I know. Although Mom has Parkinson's, she is showing some signs of dementia, and resorts to lying when she catches herself slipping. It is so painful to see the person, yet, not know them. Hang in there. Hugs and prayers are coming your way!

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  10. My Dad was diagnosed with and succumbed to pancreatic cancer when my daughter, who loved him dearly, was in grade school - and... my one son was a toddler, the other an infant (he died two months after I gave birth - rejoiced with me in the hospital, helped us through the holidays, went to football games with my brothers, took a turn for the worse and was gone) - he never met my youngest. I was in such denial at first. I didn't know how to talk about a possible terminal diagnosis. Things got better and we were able to talk about the good milestones - successful treatments, a fantastic summer, the return of his appetite - whatever. Every illness like this is a journey - good, bad, always challenging. My friend writes a blog on her mom and her advancing Alzheimer's (she is getting close to discovering that her mom no longer recognizes her); I follow it on my blog list. She is direct and honest, and in that, her story is so poignant and real - something we could all relate to. Hugs :-). I'm sure this is so hard for you.

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  11. I'm so sorry, Linda. Alzheimer's is a huge fear for me. My mother once told me just in passing that my maternal great-great grandmother had it and my great- grandmother was terrified of getting it too. And ultimately she did and had to be put in a home. My grandmother, died of cancer in her 60's so she didn't live to an age where we were able to know if it was passed to her, but her sister is in her 80's now and she has it. My mom is currently 58 and still seems sharp, but I live in fear of it showing up in her and eventually in me... and then hope there is some sort of cure before Zoe is old enough to be affected.

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  12. Alzheimer's is a terrible disease. You lose your loved one twice - the first time in an incredibly slow and painful manner, and then to death. We are facing the same thing with my husband's mother. Now that she has progressed beyond the point that anyone can deny, it helps (in an odd way) to know that the Mom we knew is gone and we have grieved that death (we've had years). The shell that is left, who fixates on death and wants to live with us cause we're closer to the cemetary, is not Mom. For me anyway, it's easier to cope with the frustrations knowing that this isn't "Mom" and she's not doing it on purpose.

    Everyone copes in their own manner. I will pray for you and your family as you go through this.

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  13. I'm so sorry to hear this news about your mom, Linda. I can't imagine how hard it must be to absorb such a diagnosis and to reflect on the changes that it will bring to your relationship. Sending wishes for peace and strength to both of you.

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  14. Oh, Linda, I'm so sorry. This is a tough, tough road, and I will be sending you strength. Enjoy the time you have with her, the moments when she's the person you've always known. Hold on to those; they'll help you through and help you heal.

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  15. I will add my response to the many others. I am sincerely sorry. My grandmother has had dementia for years now (as part of her Parkinson's disease), and it has been extremely difficult watching her regress into an infant. My mother has been taking care of her for quite a while now, so I see her each time I come home. It has been so very hard to witness.

    My heart is with you.

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  16. This happened to my mother with her mother. My grandmother lived to be 93, but for so much of it, she had dementia. When she died, my mom said she had really left years before.

    So sad!

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  17. Chris, you have my sympathy. I haven't had to go through this yet with a sibling but I can only imagine with 6 of them it will happen. My best.

    Leslie, that reminds me so much of how it was for me when my dad died. Like one minute before I'd had a dad and suddenly everything changed? I didn't know how I was supposed to BE suddenly, fatherless. Thanks for your kind words.

    Lisa, I'm sorry that your mom's having some lapses too. You hear so much about the sandwich generation and then, suddenly, you're the sandwich. Oy.

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  18. Michelle, that is really unbelievable, about Sandra Day O'Connor. But I guess it's important to know what's the disease and what's the person. The person lies inside somewhere but she's not exactly steering the boat anymore, as far as I can tell. In that light, there's nothing to be mad about.

    Heather, as family, of course you know what I mean.

    Thanks BLW. The family thing is scary. I will say that being this close to it I'm pretty impressed with the progress they're making on medications that truly are targeting what appears to be the real issue after several failed trials. I believe it will be too late for my mom but not too late for you and I.

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  19. Robin, It's difficult but I live by one steadfast rule: I only handle what's on my plate that day. I don't try to solve all the problems at once - just what I can see in my headlights, so to speak!

    Lisa, it is a very different sibling role when the time comes. Some people can handle more stress than others, more planning and more disruptions. Some can't. It's important not to let the differences poison your relationships. But living through this now makes me realize the importance of planning for my own future situation so that I'm never dependent on my children and have a support system in place for my old age. And that I'll know when to give up my keys!

    Thank you, Maria. Your support and prayers are appreciated! The combination of argumentative and lying is unexpected when it first happens but then you just have to realize that they aren't the best eyewitness to their own life anymore and go with that.

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  20. Sherri, how heartbreaking about your dad, especially in that life and death were so close for you right then. I'm so sorry. It's so hard to lose a father; I remember well.

    Jennifer, read what I said to BLW above. There are promising new studies out that even I feel encouraged about. If I could make my mom participate I would but she has flatly refused. I'm sure if the trials continue with success there should be a change in this outcome.

    Dave and Tami, Thank you for your kind words and prayers; they are appreciated. I'm sorry you're going through this too with your mother-in-law. It's just like you said, two deaths and an acceptance that it's not personal, it's a different person.

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  21. Kristen, thank you for your kind words. We're straggling along, one day at a time.

    Thank you, Stacia. I'll try to be as good a mother to her as she was to me! And that was pretty darn good.

    Amber, thanks for your kind words. I'm sorry about your grandmother and I hope your mother gets breaks now and then. It is exhausting and the patient is demanding. Tougher than children because while children grow more independent, the adult grows more dependent over time.

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  22. Mary, I'm so sorry about all the suffering your grandmother went through. That's a long life to have spent a great number of years with dementia.

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  23. My ex mother-in-law, who drew little children to her like the Pied Piper, watched my little ones running around one day, turned to me and said, "How can you stand that?" That was it. Five small words. I told my ex "There is something wrong with your mother." No one listened to me. So I watched her carefully from then on. It took the rest of the family a year to see what I had been seeing. She was 59 years old.

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  24. Life in the Boomer Lane, how sad about your ex-mother in law but how true. sometimes it's just that one weird little thing they say that is so glaringly out of character and forms a warning sign of what's to come. with my mother it was her unaccustomed silence at family gatherings.

    Thanks for visiting over here.

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