Do I have to check the box?

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If you do not check the box does it make it reality?

I have a new doctor and I have to fill out the patient history portion to update my file. My first thought was, why can’t they just roll all of this forward to my new doctor. After all, I am not going to a new practice, my doctor simply retired.

I scrolled though numerous pages, recounting every pill, every surgery and then family history. It was all very mundane stuff: high cholesterol, high blood pressure, no cancer and other stuff like that. Then there was Alzheimer’s.

I hesitate at the question of Alzheimer’s in my family. I scroll down and look for dementia. Nothing.

Can I honestly say NO? We do not really know if Daddy has Alzheimer’s. We have called it dementia and I guess there is a little bit of comfort in that “d” word.

We have not been able to have specific test done because my dad cannot have certain test run that would confirm Altzheimer’s. He cannot have an MRI because he has a pacemaker and he is alergic to contrast dye, which eliminates other medical scans. So we stick with the “d” word. Is that wrong?

At times we think we want to put a true label on Dad’s illness. After all, if we know exactly what it is, we can give him medicine that will make life easier. Right? Maybe. Dad cannot take certain medicines that we have all seen advertised on tv.¬† It is too hard on his stomach. The side effects are not worth any benefits that might be gained from the drugs.

So it seems that we cannot use the drugs that are generally associated with the Alzheimer’s label. Does that mean we have to call it Alzheimer’s? Can we just keep calling it dementia?

Do I have to check that box on my medical history form?

I chose not to check the box. Was that the right thing to do? Maybe not but it works for me today. I plan to tell my new doctor about the dementia and if she decides to check the box, then that is her business.

I am not going to check the box. Not today.

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In Sickness and In Health

 

linked-wedding-rings-clipart-wedding-rings“I think until you see Alzheimer’s firsthand, it’s kind of hard to conceive how brutal it really is.”¬† Seth Rogen

I read this on the Alzheimer’s Awareness Facebook page and I have to say that I agree 100%. If you have not experienced Alzheimer’s or dementia first hand, you have no idea how cruel the disease is. You have no idea how hurtful the disease can be and you have no idea how painful this disease is. I hope you never find this out first hand.

My mom commented one day that of all the things she and my dad thought they might have to face one day, this disease was not one of them. For my dad it was like someone turned the light out one day. We did not notice a gradual decline. There was no “ah ha” moment. It was just like someone took the sunshine away. Forever.

If we take a moment and look back at some of the “weird’ things that happened over a twelve month period, my sister and I might have figured it out. But in the big scheme of things, we did not see anything alarming. We just noticed little quirks that we could explain away.

This has not been a great week. Plenty of wonderful things have happened: Maggie went to be a “buddy” at Bethany’s Kids at Camp McDowell. Vann and I have spent some quality one on one time together. Sarah Hayden is home from a long summer in Greensboro, AL. Douglas’ classroom is coming together. AND . . . My dad thinks my mom has a boyfriend! WHAT?!

I told my sister today that I know that I am not supposed to argue with Daddy. I know that I cannot reason with a person with dementia. But I cannot help it! It breaks my heart that my dad thinks that Mama has left him for another man. My parents have always been in love. They have never wavered in their love for each other. I only remember one vacation where my parents were not together and that was a girl’s trip with fellow teachers to Blue Mountain. My parents love each other. For better or for worse; in sickness and in health.

Last night, my mom asked me to talk to daddy to try to settle him down. I was upbeat and he tried to be upbeat. But in the end, he told me that his marriage was over and that my mother had a boyfriend. I was SUPPOSE to agree with him or distract him but how do you not disagree with a statement like that. So, although I knew better, I told him he was wrong. Mama would never have a boyfriend. Dad was her boyfriend.

It did not matter. There was nothing I could say to change his mind. So, I told him I loved him and would talk to him later. I felt bad for my mother because she could not leave. This was the sickness. This was the worst part of their marriage vows.

This has been going on since Sunday and today is Wednesday. I am hoping it is the full moon. I am hoping this will fade away and things will return to our “new normal.”

I know that I cannot convince my dad that it is this cruel disease that is making him think this way but I cannot “NOT” try to tell him that my mom is there. She is present. She is by his side, holding his hand, kissing him goodnight and taking his ugly comments in stride.

If dad was in his right mind, he would never talk this way to my mom. He loves her even though he thinks she is gone.

This is a cruel disease and I hate it.

Hate it!

Hate it!

I hope you never know how cruel this disesase can be.

You will hate it too.

Teepa “spot on” Snow

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I was cleaning off my kitchen counter this afternoon and found some notes that I had made last August about Alzheimer’s and dementia. First, let me assure you that this was not the first time I had cleaned off my counter since August! The notes were on an old legal pad that more recently held my beach grocery list!

It is actually quite timely that I found these notes. The notes were from a personal meeting that my mom and I had with Teepa Snow at Canterbury Methodist Church in 2015. Teepa seems to be the guru of Alzheimer’s. She trains care givers on how to care for their patients.

I remember my Mom asking me to go with her one Saturday morning for our private meeting. I am sure I was less than excited about spending my day hearing about all the awful things that could be headed our way with this terrible disease called dementia.

We were carefully ushered into a small conference room where we met Teepa and proceeded to spill out guts. We told her everything¬† that had happened in the last month to totally destroy our little world. Teepa listened to us and handed out kleenex. A lot of kleenex. I remember Teepa giving us advise and I am pretty sure that I sat there and thought “how does she know what we are going through.” I am certain that I did not give a lot of credit to some of her advise. After all, she was asking me to make a complicated situation even more complicated. There was no way I was going to take her advise and make my world more complicated than it already was.

So a year has almost passed since I sat down with Teepa and I am looking over the notes that I made:

  • They lose their skill before they lose their strength. Amen to this!! Daddy may be 87 years old but he is strong! If he does not want to do something . . . he does not do it! He may not remember how to read a menu but he knows where he wants to go and where he wants to sit.
  • Lose impulse control. YES! Dad’s filter is almost gone. He says what he thinks even if it is not appropriate. Fortunately no one has died of embarrassment and we can still laugh at some of the situations we find ourself in.
  • Inability to make decisions or choices. Yep! I can see where this will be true over time. Many times he cannot make a decision because he does not understand the situation any more. Fortunately we can guide him and it appears he is making a decsion even when he is not.
  • Self awareness changes. You better believe it!! I think that Dad becomes quiet when he is unsure of a situation. He may not remember who he is talking to or know where he is, so he withdraws. My once confident father is now not so confident. I remember my dad pointing out a disheveled old man and telling me to not ever let him go out in public looking that way. My dad was such a clotheshorse that I am sure I laughed and told him we would not have to worry about him turning into a disheveled old man. Not true! Some days he is still a dapper man and other days I have to wonder what he sees when he looks in the mirror.
  • Looking for the familiar. We know this is true! Dad often wants to go home and by “home” we think he means that he wants to go somewhere that is familiar to him. Not necessarily an old address.

It is funny that on that Saturday a year ago, I just knew I was smarter than Teepa Snow. Well, the joke is on me!! I have learned so much from Teepa. I have learned how to redirect my dad to change his behavior. I have learned that home is not really home. I learned that a menu might as well be a periodic table. I have learned how to tell “stories” to get dad to return to his apartment at Brookdale. I have learned to disregard some of the statements that my dad proclaims. And, I have learned that my dad may not be the same man he was a few years ago but he is still my dad. He still loves me. He still smiles when we walk in the room and although his clothes may not always match, he is still a handsome man.

I have learned over the last year that many of my friends are walking this same journey with one of their loved ones and I have told all of them to Google Teepa Snow. There are many wonderful videos online that will help you educate yourself on Alzheimer’s and dementia.

If you are lucky enough to be in Birmingham the weekend of August 13th, you can hear her speak at Canterbury as part of their Beeson Forum. There is a fee to attend but it will be well worth your money. My mom is sending their sitters to hear her this year.

You might find that you sit there and say “not me, not my dad.” And if you do have these thoughts, I pray that you are correct. But if you are like me, you will find your notes a few months later and read over them and see how “spot on” Teepa Snow is in her presentation.

Dad has a lot of good days and for that we are thankful. Some of his days are not great and on those days I try to remember to say a prayer for my mom. I am thankful for all the people I have met on this journey. We are all learning and praying together.