Location: Wisconsin
(This is an entry from my myspace page.)
Tonight I decided I needed to put down some of my feelings of frustration, anger, & sadness about this awful disease. This is a long one... just me typing down my thoughts.
History: As some of you know Brad's Mom was diagnosed with Pick's Disease last Thanksgiving. Pick's is similar to Alzheimer's Disease in many ways. But unlike Alzheimer's it effects patients between 35-60 years of age, Cathy is now 53. The progression from diagnosis to death is 4-7 years on average. So essentially she is terminally ill & there is no treatment! She is seeing specialists at Mayo in Rochester, Minnesota & is in a study group... but this is more to help Brad & our kids... since they have a 50% chance of developing this!!
Today: The kiddos & I are up in Wisconsin helping out this week. We are spending 2 weeks up here. She was in Iowa with us last week. And on average we have been helping out a few weeks a month. It is tough (no physically but emotionally) & I am tired... Brad's Dad is 4 years away from retirement & travels a lot with his job so she stays with us for his extended trips. We currently are brainstorming her further care with much frustration. Not a lot of options... cost... care concerns... no long term care insurance (who thinks of that at 50) etc... And all 3 of her boys live far away. Brad/We are in Iowa, Ryan is also in Iowa, & Toby is in the Air Force.
Yesterday: I went to her 6 month f/u appointment in LaCrosse with Brad's Dad. I sat in the Doctor's office & watched his (the Doc) look of shock when he saw how fast she is progressing after comparing cognitive tests from her last visit. He (the Doc) apologized for the fact that he has nothing more to offer us except to take things day by day. And to take care of each other as a family. He feels she is well past half way & progressing quickly. He mentioned that many of his patients with this disease have traveled Worldwide looking for other treatments with no luck. As we sat there soaking it all in Cathy just looked around the room. Brad's Dad began to cry, trying to hold himself back - after all, Men don't break down- but he couldn't stop... I don't remember ever feeling so helpless. Cathy just looked at him, after all she doesn't understand what is going on.
The one & only true Blessing about this awful disease is that she is Clueless.
Clueless: To Cathy she is perfectly fine. She thinks things are as they always have been. She doesn't realize that she has stopped doing all the things she loved like gardening, cooking, walking outdoors, playing with her grand kids, spending time with friends. She doesn't realize that she can't remember how to cook, clean, shower, read, make change, drive, etc... She doesn't realize that all she eats is junk food (when she was the one who used to hide the cookies from me because she thought I didn't eat healthy enough)
Scary Clueless: Taking care of her means that we have to make sure she turns the burner on the stove off (yesterday she started cooking bacon & went to take a shower leaving the bacon on!), hide the car keys (she gets lost & drives unsafely), hide her pills (she forgets & takes way to many), hide snacks (she constantly eats - part of the disease process - the Doc says that most families actually have to lock up food!!), & many other things... new & strange things happen every day.
Kiddos: It is hard to watch our kids. Chase said to us a few month's ago, "I miss Grandma. I miss how she used to play with me & take me for ice cream." How do you answer that?? How do you explain this to a 6 year old. She is right here but they are transparent to her most of the day. At times the old Cathy shines through & she may help them with something small or give them a kiss on the forehead. Mia just climbs up next to her. She sits by her & watches what she is watching... just to be by her. Or today she took her hand & said, "Grandma lets go for a walk with the dogs." Today she actually went! It is these small moments we live for now. Little miracles in each day.
It is so frustrating being so far away. It is hard for Brad to be stuck at work & not able to help his Mom. We have discussed dropping everything to move up here to help. But his Dad does not want to see Brad quit his job (the Railroad is also his Dad's way of life... something he is proud of). Fear of watching his Dad lose everything financially. All they worked for all these years. They have family land in Wisconsin that has generations of stories behind it... will it be at risk... yes. Money isn't what you want to think about at a time like this... but you are forced too.
I know many families have been through similar situations. I also know it could be worse. She could be depressed, angry, in pain, she could have been 35 instead of 53, etc... You have to think of the positives & not focus on the negatives. When you look at all that is going on in the World around us, all the suffering, the wars, the loss of life... We are truly Blessed to live here, have the health care we have, the freedom we have...
But... right now, this very moment, it just plain sucks. Cathy has been a part of my life for 15 years. I am 30 now (ugh), that is half of my life. She is my husband's Mother & my children's Grandmother. Despite all the times I complained about Mother-In-Laws, all the things she used to do to drive me crazy, I still Love her. And I already Miss her. I want to do what I can to help. To be strong. To ease every ones pain. But How...
I can only Pray. And I Believe in the Power of Prayer! After working as a Nurse now for 10 years I have seen Miracles, I have held someone's hand as they died, I have comforted family & friends, I have wiped tears, I have felt this truly unexplainable feeling... a feeling of complete peace coming over me & everyone in the room, a feeling of comfort, warmth, Love. I wish everyone could feel that... the feeling of knowing that in the end - everything is going to be ok.
So for now... I am letting my feelings of anger & frustration come out through my fingers as I type... I am taking a deep breath... & I am moving forward. Hopefully to help, to care, & to comfort.
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