The day passed in our house pretty much unnoticed. There was no mention of it, I actually didn’t realize it until a few days later.
Then it occurred to me, It’s been 2 years since those dreaded words were spoken to Curt and I in a Dr’s office on Oct 1st, 2010….. “Curt has dementia, most likely Younger Onset Alzheimer’s, this is very rare at his age (46).”
2 long……..busy frustrating, overwhelming years.
2 years of little hope, as we continue to watch the speeding train of Alzheimer’s wreak chaos and havoc in Curt’s brain. I was thinking tonight as I was helping Curt get dressed for bed, how quickly this disease has progressed. Curt gets so discouraged at times, some days he is very aware if his regression, other days he is oblivious to it all. During a recent visit to his neurologist, the Dr. asked a series of questions as part of a test known as the MMSE (Mini Mental State Exam).
What year is it? “2010”
What month is it (it was Sept.) “July”
What season is it? “Spring” (It was fall)
Yes, he is slipping more and more into that black hole. He really was unaware that his responses were incorrect.
Regardless, the kids and I see it all. Tyler and Madi are such typical teens in so many ways, but tucked deep in the depths of that fun loving teen life they too struggle with daily watching Curt struggle.
Not sure if this is a pic of a “normal” teen but this is Tyler doing a normal teen thing leading the student section during a football game. And Madi sporting her new Liberty Univ. gear on a recent visit to Liberty. Such normal things……….
Yet I see they are also concerned, Tyler recently wrote a rap song and penned these words as he sees Curt continue to fall into the black hole of Alzheimer’s.
“I promise I’ll be by your side when the going gets rough
Whatever I do will never be enough
You were always by my side when life was getting tough
Now as your starting to fade away, I get to see you worsen every single day
I am tongue tied and speechless and I don’t know what to say.”
Yes I think that sums it up for all of us, we are speechless and don’t know what to say…….or do at times. This is such uncharted waters, living with Alzheimer’s at our age and this stage of life is not normal.
However, we also get to see a glimpse of such acts of goodness and kindness by such supportive friends. Amid the bad, there is good!
I wish I could convey to you just even a glimpse of the help we have received, and how it speaks volumes to all of us. I don’t think Curt realizes the magnitude of the help that has come our way, but the kids and I see it.
Friends will email or text me asking out of the blue to bring a meal……..and it’s always such a perfect time!
A dear friend from high school has been sending us gift cards for local restaurants, so helpful!
A group from a local church came one Sunday and did an TON of yard work and household chores for us.
A neighbor sends over soup, another neighbor drops off on of our favorite fall pumpkin cookies (and I had been feeling guilty for not baking them yet this fall, when I “always make them”)
Friends donate to the Alzheimer’s association on our behalf ( I am the WORST fundraiser, the fact that we raised close to $1,000, that was all our friends and teachers at school supporting us, not me doing a lot. Really you would not want me on your fundraising committee 🙂 )
Please know you are appreciated, I feel as if I forget to thank some of you at times. I have so much to take care of I am finding that some of those details get lost in my brain and are so quickly replaced by more immediate and urgent needs. So please know if you were not thanked, it is not the result of not being appreciated it the result of my current ailment…..FBS!!!!! (Full Brain Syndrome, I have a very serious case of it!!!)
Thank you for your ongoing prayers, the uncharted waters are tending to get much rougher to manage lately, so prayers for wisdom, guidance, and extra energy and patience for me would be helpful. (Has someone invented a patience pill yet, I will be happy to trial that in a clinical trial…just sayin!)
I must leave you with a pic or two of our newest addition to the household! Meet Paisely! WE all love her and Curt is really bonding with her, he seems to really enjoy hanging out with her.
Told ya she is a cutie. 🙂
Life is hard for us, but God is still God, and He is good, we press on!
Waiting, Trusting and Hoping……
I was just thinking about you..praying for your well being…words escape me and your experience humbles me…hugs to my cyber friend!
FBS — I like that! Your son’s song says so much. It’s a joy to hear what others are doing, and hopefully reading of those things will help many of us who would like to help folks out in a practical way but don’t know what to do. Still praying for you all…
This brings tears to my eyes as I read. As always, this makes me wish we were closer geographically. Big hugs
Praisly is a cutie pie! I think that was a good idea to get her…hopefully she’ll be a good dog for Curtis. My heart goes out to all of you. I wish there was something I could do, especially for your kids.
The parallels are so close between our journeys. I have a 16 year old daughter and 14 year old son. Their dad and my husband has Alzheimer’s. We try and maintain some normalcy even though life is often anything but normal. It’s been a year and a half for us and so many things. God bless you. I wished you lived down the block; some days I yearn for a kindred soul with which to share.
I don’t remember how I first came across your blog, but I just thought you might like to know that I bookmarked it so I remember to pray for you and your family. My little boys and I visit the alzheimers unit at our local nursing home somewhat regularly with a friend who’s dad is there. Know you are being prayed for in NE some days.
I love hearing your updates, even though they always make me cry, both at the sad parts but also at the good ways you are being loved (but honestly, more because my heart just breaks for all of you…). Praying often. Keep standing.
oh Sandy it is SOOO good to hear from you via the blog. I know I’m not on FB much during the week so I don’t see you on there as much either…..you are continuing to be in MY thoughts and prayers as well and we are still praying for you all in my small group 🙂 Keep pressing on as I know you will. You are a good example of a woman with lots of faith…….(and I LOVED the photos!) and yes the new member is a cutie! 🙂 God bless you!!
Tyler’s rap just brought me to tears. As did hearing of the ways friends and neighbors and family are finding to take care of you through this hard walk. Your new little cutie is adorable.
I come to your blog to encourage you and always, it’s me who gets encouraged more. I am glad you are continuing to blog whenever you can. Tyler’s rap had me crying … I still have tears in my eyes as I am typing this. As you already know – I have family history of dementia and Alzheimer’s…. there’s a very soft spot in my heart for families going through this …
I am glad to read about the support you are getting from family and friends … And Paisley is so adorable!!!!!
I love how you said it “Life is hard for us, but God is still God, and He is good, we press on!”. We’re always here praying for you.