Lonna Whiting

Crafty writer, strategic thinker, curious learner.

Archive for the category “Alzheimer’s”

Cramer staffer has wiped old butts and he cannot lie

 

 

 

During the 2015 Alzheimer’s Advocacy Forum in Washington DC last week, I had the pleasure of meeting with Andrew Nyhus, an ambitious young staffer to North Dakota Congressman Kevin Cramer.

As an advocate representing North Dakota at the forum, I had to ask our congressional leaders to stand by us with full support for the HOPE for Alzheimer’s Act, in addition to supporting an extra $300 million in NIH funding to support research efforts.

Nyhus, hardly out of his own pull-ups, said he understood the gravity of the disease and that he, too, has “wiped butts” in nursing homes and didn’t find the experience all too pleasing.

Instead of raising a stink, I opted not to poo-poo his disregard for the admirable job of caring for the elderly. I listened and watched carefully as he pulled out a sheet of paper and drew me a pie chart indicating the NIH is already overly-funded and that an additional $300 million just wouldn’t work.

I think it’s safe to say that Andy flushed our NIH funding dreams down the toilet.

Never mind the fact that Medicaid payouts are plugging up our nation’s fiscal plumbing and will begin to overflow as Baby Boomers start needing their own butts wiped.

 

Nyhus just couldn’t spare a square. Not even half a ply. His response reeked of disinterest and boredom.

My face flushed with disappointment.

Not everyone raised such a stink. Instead of giving me a nickle-and-dime excuse as to why funding Alzheimer’s research is a bad idea, Senator John Hoeven actually gave me some of his time, explaining how his own family has been affected by the disease. His empathy and grace – and support – for more funding at a federal level, gave me hope that my efforts in DC were not wasted.

I hope that next year when I visit Nyhus on the Hill, he won’t skidmark the issue and make such an ass out of himself.

 

Going to the Funeral is the Easy Part

Going to the Funeral is the Easy Part.

From the writer of “My Demented Mom” blog, who writes about a fact that enrages me about victims of Alzheimer’s and related dementias: the mass abandonment of friends and family unwilling or too scared to see it through. Yes, perhaps the funeral is the easy part. Face it: dementia does and will happen to people you love, maybe even yourself. Fear will not prevent it from happening. Bravery will help you create a fulfilling experience despite the slow deterioration of one’s memory, faculties and personhood.

 

‘D’ Word x 100

  1. You will notice something just isn’t quite right years before a diagnosis.
  2. You will dismiss an inability to maintain finances as simply being bad with numbers.
  3. Your mother will lose sight of a daycare child while in her care, only to later find him down the street at a neighbor boy’s house once the authorities have been notified.
  4. You will make up excuses to Child Protective Services when they call and ask if you think your mother is a danger to the children in her care.
  5. You will take your mom out for dinners and have to order for her.
  6. It’s just depression.
  7. It’s because Dad left.
  8. It started when Grandpa died.
  9. Her thyroid could be off.
  10. There might be a vitamin deficiency.
  11. You will give her premium vitamin supplements.
  12. You will watch another year go by.
  13. You will take your mother out for a beer and she can’t follow a conversation.
  14. You will think she’s socially awkward.
  15. You will be embarrassed shopping with her when she thinks she recognizes a stranger as someone she knows from her past.
  16. You will have a difficult conversation with your sister-in-law that begins with the words: “We need to get your mom checked out.”
  17. You will set up an appointment with a neurologist.
  18. You will throw a digital clock in your mother’s face after it takes you two hours to show her how to set the alarm.
  19. You will notice your mother no longer wears her hair curled.
  20. You will wonder why your mother’s house isn’t as tidy as it used to be.
  21. You will watch her eyes fading to gray.
  22. You will know something isn’t right.
  23. But it can’t be.
  24. She’s overmedicated.
  25. Too much cholesterol medication.
  26. Sleep apnea.
  27. You will take her for a neurological exam that she fails miserably.
  28. Another year.
  29. You will admit your mom to a psych ward after she panics when she can’t make the babies their bottles.
  30. You will pray with every molecule of your being that it’s not that.
  31. You will see her on visitation day and watch the looks of pity from the suicidals.
  32. You will consult with the resident psychologist who says it can’t be that because she’s too young.
  33. Further observations are needed.
  34. More tests should be ordered.
  35. Time will tell.
  36. You will force your mother to retire and give up driving.
  37. You will tell her she can finally do everything she’s always wanted to do.
  38. You will lie. Over and over again.
  39. You will try to explain over the phone for 20 minutes how to microwave a burrito.
  40. You will visit and watch a children’s cartoon because your mother says that’s all she can find on TV.
  41. You will help your mother pack away 37 years of her life as a daycare provider.
  42. You will give your mom books to read because reading is good for her.
  43. You will realize she can’t get through a full page without forgetting what she just read.
  44. You will call Mayo Clinic.
  45. You will notice your mother is no longer wearing makeup.
  46. You will dust off her car parked in her garage.
  47. You will take her to a restaurant and have to order for her and explain how to cut her food.
  48. You will get 20 phone calls in one hour asking about a cable television bill.
  49. You will lose your cool.
  50. Over and over.
  51. After every test is performed.
  52. After your mother gets lost walking down a hallway to the bathroom on the 8th Floor of Mayo Clinic.
  53. After they say her brain has atrophied so much that they can’t tell what it is.
  54. After the neurologist says it’s statistically most likely to be Alzheimer’s.
  55. After the nurse educator calms your fears.
  56. It’s sporadic.
  57. It won’t happen to you or your brother.
  58. Have you gotten Power of Attorney.
  59. You need to talk about assisted living.
  60. After the ride home.
  61. After your mother says she doesn’t feel safe alone.
  62. After you try and try and try to hold off the inevitable.
  63. After the pleas to social workers for help.
  64. After the Medicaid denials.
  65. After the family tells you you’re not doing enough.
  66. After you started drinking a bottle of wine a night.
  67. After you throw dishes and punch the wall.
  68. After you cry and cry and cry.
  69. After your mother says Meals on Wheels is gross.
  70. After your boyfriend says one more breakdown and it’s over.
  71. After you say you’re a fierce advocate for Alzheimer’s research even though you feel like a weak coward.
  72. After you decide to sell your mother’s house.
  73. After the POA papers are signed.
  74. After your mother moves in with you.
  75. After the first time you have to help her in the shower and realize she’s not wiping her anus.
  76. After you call her a child.
  77. After you throw a baby doll at her and say she’s worthless.
  78. After you shame her.
  79. Over and over.
  80. And you cry and you cry.
  81. And rage and rage.
  82. After you watch your mother put a sock over her boot.
  83. After you help her curl her hair and put makeup on.
  84. After you read her horoscope to her and know whatever it says can’t be true.
  85. After you tell her she’s getting an “apartment.”
  86. After you sell the house and use all the money for assisted living.
  87. After you put your mom in a home with 90 year olds.
  88. After you decorate her room but you know it doesn’t matter to her what it looks like; it matters to you.
  89. After the first holidays she doesn’t know it was the holidays.
  90. After the nights and days worried every time you forget someone’s name.
  91. After you realize your mother is thriving in her new “apartment.”
  92. After it settles down you realize.
  93. More changes are coming.
  94. More questions and forgetting is inevitable.
  95. More grief and pain and rage.
  96. But before things change more.
  97. Before it gets worse you spend as much time with your mother as you can.
  98. Before she no longer recognizes you.
  99. Before the long, long goodbye is finally just goodbye.
  100. Right now this one word has changed your life forever: dementia.

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