Fear of Failure. Fear in Failure. Fear vs. Failure.
Welcome to my world the last few weeks. I have been struggling, cognivitely, for awhile now. My love and I had THE talk last night (I am writing this early Sunday morning, 05.20.18).
You know the talk, THE one where you have to explore whether or not it really is time to face reality, and accept that it is time for assisted living.
I don’t appear outwardly like I need such help. I get that. But my head hurts. Not as in physical pain (well, sometimes), but mostly I am in pain because if I give in to how I really feel I would be walking around with my hands clasped to the sides of my head, holding my hair and screaming.
Thinking has become that difficult for me.
For a long time, I have made it through each day in 3-count increments. I have 1-3 things to do, max, at any given time: make coffee, brush teeth, put shoes on. I complete my 3 and move on to the next set. On a good day I can incorporate a 4th item but usually my count is 3. Lately, if I get interrupted, I can’t remember what my 3 count was. The coffee pot burns up because I forgot that was part of my 3 count. I show up at the store in my house shoes, because – oh yeah, that was in my 3 count. Or, late in the day my mouth is all wonky because I never got around to brushing my teeth.
Notes don’t help. Trust me. I went to a great TBI Rehab clinic and have many, many tools for managing cognitive function. If notes or any of the other things we learned to do still helped, I would be doing them. I find notes days later and don’t remember what they’re for. I’ve tried a spiral, a notebook, whiteboards, etc. My brain is not cooperating.
I get that a lot of these symptoms are within the “norm” range, especially as we age. People often leave the coffee pot on, or leave the house with mix-matched shoes, or forget they wrote a note so they wouldn’t forget something, or forget what they walked in to a room for … on and on, ad nauseum. But if you do that ALL day long, EVERY single day, trust me – your doctor is going to eventually evaluate you for dementia or some form of brain disorder.
Now, for me, unfortunately … even if I finish my 3 count, I sit and stare for very long periods of time trying to remember what my next 3 count should be. The lights are on, but no one is home.
Here is what I compare it to …
You know how your cellular data plan renews each month? And, if you’re like most smartphone users that sometimes reach maximum data usage before the renewal date, you get throttled back. The speed is s-l-o-w until your plan renews. Or, if you run out of data completely, you’re just out of luck. You can type in the URL but nothing happens. Then there’s the days when it’s like a slow upload, neurons firing in mud. Well, all of that … that’s my brain. And it’s painful.
It all gets clogged up and thinking is just v-e-r-y very s-l-o-w. Lately, there’s been no data available. Usually, I can take a nap, sit quietly in nature, do my prayer and meditation, or even practice yoga to reset my data plan. None of my tools have been working for weeks now. I literally can sit in a chair, all day, and stare. And be okay. Lights are on, nobody is home.
I’m not okay with that.
So last night we had THE talk.
Robert was surprised to hear that when we toured The Cambridge Assisted Living center where his sister and niece work, that I not only was in awe of the beauty and grandeur of that place, I was scoping it out as a potential resident.
Sometimes with tears, but always with love, we talked and explored the options. It should be no surprise that he came up with alternatives I had not thought of. Duh. I am so very blessed to be loved by a man that will not give up on me.
We are going to aggressively cut back on my activity so that I have as few interruptions as possible. Extreme respite and solitude are in order. As soon as we can afford it, we will get a toad so that I can remain stationary while Robert comes and goes as often as he needs or wants. In our current financial state, it won’t be much of a vehicle – we’re thinking a few hundred dollars when we can – but it will meet our needs and allow some ease, and that’s all that matters.
I’m going to miss out on a lot – family functions, outings and there will be days I won’t even be able to go to the gym we just joined. But if it helps, if all of this allows me to start thinking again, we will have kept me out of assisted living and in our home. Any sacrifices that accomplish that will be worth it.
I love making videos and writing. If I never get to do more than that – connect with viewers, write stories, live with my love and our adorable furbaby – I will be happy, blessed and grateFULL. How could I not be?
That was last night. Then this morning I woke up in fear. Is this arrangement fair to Robert? Will the new plan work? Will it be enough to recharge my data plan? I even giggled. The thoughts may have revolved around fear and failure, but at least I was thinking. Then that made me sad. All before my first cup of coffee!
So I turned to prayer and meditation and below is the Daily Word that popped up for me to contemplate. I love the saying:
Coincidence is God remaining anonymous.
Serendipity is God signing his name.
Synchronicity is God showing off.
And I love the way God shows up in our lives.
KOKO beautiful viewers and wonderful readers!
Life is good always, no matter what.
© 2015-2018 by Unity. All rights reserved.
Divine Expression – IN TRUTH I CANNOT FAIL.
Hi Debra, I am so sorry you are have these problems. I have some neurological issues from a brain surgery and I can relate although your TBI is more severe. You explain everything so wonderfully and are a great writer. I think you and Robert have come up with a good plan as Roberts busy life style is probably to much for you. God Bless you Both and take care and here comes a hug~~~~~~~~~~~~~~~~
Beautifully written Debra, and very poignant. I love your videos and your writing, please don’t give up on that. I have been pondering very similar ideas, about my future. I am often quite crippled with fibromyalgia, and the worst is the brain fog. The past 3 months have been so busy; visiting our kids in NH, moving my Mom to an assisted living center closer to my sister instead of near me, because she needs more care now than I can do alone. It broke my heart to know that I’m not well enough to meet her needs! But reality is what it is, for you and I. I know I have to do the same as you; more rest, less action, accept my present and find a way to function as best I can until I’m better. Take heart, I know the rest and recuperation will help you function better too, it just takes time. Love helps too! So glad you have each other to love and care for!
Dearest Debra and Robert:
You two give me hope and inspiration. Hope that a love such as yours is still possible, and inspiration to tap into my spiritual side, when this mortal world is too difficult to bare.
Please don’t forget to consider that your last few weeks have been full steam ahead. No wonder you’re struggling Debra. Streaking through multiple states at a much faster rate, adding a third resident, more people, more activities, more work to catch up; all these are significant triggers for you two. Perhaps a “hard reset” of your drive will be what’s required to return closer to your usual routines. I know I’m ready for a reset myself.
Love and prayer already sent … KOKO
– Patt Ladd,
Patreon subscriber, Chronic pain survivor, Suicide (of loved one) survivor, PTSD survivor, Caregiver for a family member with Dementia; so you can see I understand.
I can relate to your trying to remember what you were doing or even what to do next. Today I am supposed to go help my brother out on getting stuff ready on his pontoon. The only reason that I know that is because Google sent me an email from my calendar that is something that I have to do today. Hope I show up for that, or I will get the phone call wondering where I am. I am grateful for each day that I have. They told my family almost 45 years ago that I would not live and so am grateful for each day I have had since then. Days when I am trying to plan things frustrate me, but I realize that is the way life is now. Plan on going to visit my sister in July. When I am there, hope to discuss getting a minivan to retro fit it like Robert did and make trips for a month or two at a time. I don’t think my brain would be able to handle full time, but even getting to be away for a month or so, would be wonderful. You two are an inspiration to more people than you realize. Have a great day and thanks for helping inspire others.
Realized that I made a mistake in my post. Should read almost 40 years ago not 45. But that doesn’t really make a difference.
Rādie (Cindy) Morgan
Debra your story breaks my heart…. of course I like so many others wish you to live as the Van dweller you are, however only you and Robert can make such a difficult decision. I love your daily devotional Romans 8:5 thanks. I will keep you and Robert in prayers of comfort and wisdom. It is ok to just sit and take in the serenity of stillness, we are not to be governed by time and others ideas of responsibilities, and I don’t for one moment think you are being selfish toward Robert …. remember to be one is to be the other 1/2 of the whole and even if you feel less than 1/2 it is Robert’s Joy to hold you up! Be blessed my friends and I send you both my deapest and dearest love! Jake sends his to Koko too!
Mary Ellen Telesha
My heart goes out to you. I’ve been dealing with a chronic illness for years that presents with similar symptoms, and I’ve absolutely HATE when someone gives me a recommendation… so take this as you will … I get it believe me…. but CBD oil, ( not THC, not pot) is showing some promise. And getting a medical card is even better, to get legal treatment… shown in studies to help neurologically. I’ve been taking just the CBD at low doses and I swear it’s helping with brain fog. Hope to see you on down the road!!!! Mary Ellen xo
thanks so much for sharing your struggles. I have been struggling a lot lately with physical ailments and to see how you cope, how positive you are, and how you spend time with your loved ones coming up with solutions are all great role models for me. much love, Debra!
Debra, some how you need a reboot. And I wish I could give me something new to do but you’re doing it already. Though the suggestion on you tube from Donna K about looking into the Keto diet is a good idea. It has had some good results for people with/in all sorts of conditions. Please look into it. It wouldn’t hurt to try it out.
I know I have more to tell you but my own brain has been in a bit of a fog today.
HUGZ & love ~db
Debra and Robert I know you do not write a blog and do videos for sympathy. You both are so brave, it is hard to comprehend what a TBI actually does to a person’s brain.
My husband and I enjoy your videos and watch them daily together for the last week. I have subscribed since last September.
As I go to sleep each night I pray for my children and their families, You and Robert have been in my prayers.
God Bless You and keep you in His care.
Thank you, Vivienne! We are so glad that you both enjoy the videos, and that it is something that you are able to do together. That it neat. We appreciate your support.
You are correct that we do not share our stories or struggles for sympathy or attention. We are actually amazed and humbled by how many people contact us to let us know that they are helped or inspired by what we share. That is the real reason that we do it.
Appreciate and deeply love your posts. My thoughts are with you.
Thank you, Nikki! We have been posting less here on the website than we would like. Hoping to increase the posting frequency here soon though.
Debra! You have just traveled all over the country at a breakneck speed! Spending time with so many precious family members is fun but exhausting to anyone without a TBI! Please allow yourself much rest and quiet time to recover. You and Robert are such treasures. Put that assisted living talk back on the shelf! I think you need the whole summer to rest. By the way, you thanked me on your video for sending a little money to join the gym. I almost fell off my chair!! And it was done on my birthday!!! Made my day!!! Tomorrow I’m leaving on my maiden voyage in my new built out Transit. 2 weeks in the Upper Peninsula of Michigan. You will be in my thoughts and prayers!!
So happy you are blessed with such a wonderful loving man and smart he knows when he has a sweet Angel by his side . Love and Blessings to you both ?? from Oregon ??
Debra, I pray that you will know the presence and peace of God as you go through this part of your journey. I believe in healing from God because of what Jesus did on the cross. So I am believing for your healing and that every day you will feel stronger, clearer, more vibrant and aware of all that is going on around you. I pray God will strengthen your body, spirit, soul and mind and that you will be a witness and a testimony to His love for you! Robert, you are a gift from God and a blessing that He has sent to Debra. I thank you and appreciate your loving kindness. I pray blessing over your life and that He will give you wisdom, strength, patience as you journey with Debra. I pray that God will increase His joy to both of you! He loves you! Blessings in abundance to you both!
Thank you, Linda 🙂 I appreciate the kind words, support, and encouragement. -Robert
Debra. Your video just brought tears to my eyes. You are such a beautiful lady with a wonderful kind heart. So happy you found KOKO Jack and gave him a home. And Robert is a keeper—lovely man. I love your videos—such an inspiration. God Bless y’all.
Just a quick hello from this site. I came here to enter the camcorder giveaway and discovered another part of your amazing talents! KOKO!