It began as mornings do: stretching and slow moving out of bed, ballet tiptoes at the dining room table, and then to take morning meds. Suddenly I was confused and went to my office – the burgundy couch with my new laptop waiting. I opened it as I usually do (with great reverence and respect) and moved to Facebook, to check on my cafe and farms. But instead of beginning my chores, I got anxious. A quick IM and my heart began to race.
Too much was coming at me.
Trying to breathe slowly and calm down, I began my list for this Tuesday before Christmas. 1) Call in Rx 2) Sort pills 3) order groceries 4) begin St. Jude Christmas thank yous … I couldn’t write, couldn’t face one more thing.
I began to sob, huge sobs that shook my whole body. I went back into the kitchen. I had no idea what to do. I pulled and slammed shut the cupboards, overlooking the overflowing basket of pill bottles. Shaking, everything seemed out of place, like the kitchen had just exploded and everything had been destroyed.
In the bathroom, I shut the door, shaking. “I will get dressed.” But despite the neat pile of clothing stacked in easy reach, I couldn’t find anything. I pawed thru clean clothes, throwing them in to the laundry basket. No. I need something, something.
After 40 minutes of opening drawers, pawing thru everything, I look right in front of me and find my Ativan, take one. Rush to bedroom, armed with rosary and phone. I tried to txt a mssg for help. I finally remembered how to dial the phone and called my daughter, who began calming me down.
“Its just a bad day, shhhhh. It’s going to be better soon. I am on my way. Can you hold on until I get there?” I wept I could, I would stay in bed.
She came, she took care of everything. I never did change. About 8 tonite I tried again, and everything makes sense. Whatever chaos set me off was gone for now. The decisions and projects have a timeline that my family will help me with.
Besides holding a phone, a rosary and a Kleenex box, I held each of you close to me knowing you were here with me.
It was just a bad day.
Love
Vicki
Today's practicality is yesterday's comfort. I keep making my home "Vicki safe", so I can stay here a little longer.
Who is that lady in the mirror? What is left of the original, who is replacing her, and when?
It's comforting to know that even the scariest days sometimes come together in the evening to bring us peace. Photo by Ron Hanson
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Vicki,
Just a bad day…we can start all over again tomorrow…
I enjoy your pictures, lots of snow there? Here in St. Pete the weather is nice, 70 is the high, was a little cool this morning, low 50’s. My perenials are still flowering and my orchides as well, (I am not sure how come I have not managed to kill them yet!).
I miss you and think of you often. Please remember that someone who shares the V power is here thinking and praying with you!
Love and prayers,
Vivi
Keep writting!
Hi Vicki, I was very interested and moved to read your blog.
I am a former caregiver to my mother,I am a volunteer giving support and information at support groups (in UK), and I have memory problems – possibly minor cognitive impairment, leading to Alzheimers.
With your permission, I would like to bring your blog to the attention of people with FTD in our groups and to people on the ‘www.alztalk.org’ website via their blog/message board.
You may like to write a message to Mary in Canada on her guestbook at’www.alzheimer-journey.blogspot.com’ as she has possible FTD – and like you,she is a really lovely and brave person! Plus you both have wonderful grandchildren!
Hugs freda
Thank you, Freda, for you generous comments. If you think this humble posts could help others, then by all means.
I hope you too will continue to share. My adult children have been amazing in my care, but my eldest daughter has born the brunt of so much. And with all dementias, we worry what we may have passed on to our children and grands.
I send you all my love in a hug {{{Freda}}} and know you will be blessed for all you had to let go of in your life, to care for your mother. I know I intend to send all the graces I can back to my children when I am gone, and it gives me peace. May you feel your mother’s presence often, and as a comfort.
Hi Vicki….I’m sorry you had a rough day….we seem to have those more often than not, don’t we.
I hope your Christmas and New Years went well…..those are definitely difficult times for us now.
I’m glad Freda gave me the link to your site…I can’t remember if I’ve come across it before….but I have it bookmarked now.
I see you have links to my websites here….so if you don’t mind I’ll add a link to your website on mine.
Hugs and enjoy each day!
Mary~Canada
Mary, I am honored to be added!! I love your journal, have posted a few things. Just to find another who is stll in the fight was like water in the desert! I just couldn’t believe I was the only one with FTD/Picks (with a side of Dystonia) who still communicate. The Association for Frontaltemporal Dementia has a blank page on their site for patients. It was discouraging at best.
And then my friend, Jim Coyle, began a search and found you. And hope was restored. Besides my family shouldn’t have to bear more of my worries or feeble accomplishments (Hi, Beth? I just brushed my teeth and put my toothbrush away!!)
And I love your humor. I think it’s time to upgrade my walker to one with a seat. Can’t get thru a store. And I loved you had the same concerns I did about purse, etc.
Smiles, hugs and love from your neighbor in Michigan. BTW, I have French Canadian roots of which I know my joie de vivre comes!
Love, Vicki
Vicki,
How blessed you’ve been to receive a diagnose but be able to share with the world what it’s like to live with this disease. I just lost my father yesterday morning (January 5, 2010) to this disease, but as you mentioned, by the time a diagnosis was made, my dad could no longer even comprehend anything was wrong with him. God Bless you for sharing your story and your perspective with us. I have often wondered what my dad was thinking or what it was like to suddenly not have anything be familiar to him. I certainly will be praying for you. Please know that you are an inspiration and you have already blessed me by sharing your story.
Dear Michelle, my prayers are with you as well as simple virtual hugs {{{{Michelle}}}}. I am so sorry to hear of your loss of your father. I was a caregiver for my mother who had brain and lung cancer, and I watched her leaving me each day and thought I would be ready for her transition from the suffering she was enduring on earth to her next life. (I am Catholic Christian and do believe she is in heaven.)
But no one can be prepared with one that you love. It always hits like a punch in your gut, with grieving you thought you had already gotten out of your system. For the next week, each grunt and groan I have (and there are a number of them, laughing) I will think of you and your father. May he rest in peace, and may that peace find you, and rest that you so need.
Thank you. You made my day special for a lot of reasons.
Love, Vicki