Surely your goodness and love will follow me
all the days of my life,
and I will dwell in the house of the Lord
forever. Psalm 23:6 (I know, it is 6/23/21 and not 23/6/21, but this verse was too good)
Howdy all! 🙂 Thank you for coming to the Digital Cornbread table. If you are a long-timer, I thank you for reading my thoughts, yet again. If you are new to the site, thank you for coming!!! I hope you will sit at the table, have a smidge of my Digital Cornbread, and find something here useful. For the new folks, I would recommend you read the first article and go back to the early days of the blog as you have time. My mom was diagnosed with the disease in 2009, but I only started learning about it and writing about it about 4 years ago. I, too, was a deer in the headlights and was plowed in its wake….but the mission of this site is to help others not be surprised, but be prepared instead.
Another note of review: Why name a dementia blog Digital Cornbread?!?!?! I try to have elements of each component part here because of how hard the topic is:
- Digital= 1s and 0s. The essence of something that is considered digital is that it simply ones and zeros. Like on and off switches. Yes or no. Complex creation…but a simple concept as a building block. Therefore I try hard to explain dementia in simple terms…terms that even I can understand. 😉
- Corn= I am corny. I acknowledge it. Funny sometimes, lame/dad-humor oftentimes, but I try to keep this topic light when I can. I encourage you to lovingly use humor too.
- Bread– I am a Protestant Christian. I add a Bible verse at the beginning, tied somehow to the date of the year, because I want you to see how amazing the Bible is. It is NOT an exhaustive book that explains every single scenario, but it does give guidance that can apply to every single scenario we will face. I am intensely imperfect and my only redeemable parts are the Him in me. Life, and a Christian walk, is a process and He is still working on that in me and will be until I am gone. I will do my best to be a good example, and will have good days and not good ones…and the articles will reflect this. I will let you down, but He will not.
One other thing about this blog: Hyperlinks. Underlined words or phrases throughout the article will point you to further reading. They will open in a new tab so you won’t lose your place… Some are basic, some are complex, and some may be of more relevance than others…but I try to choose them carefully. I don’t sell things. I don’t get paid for clicking on things…I don’t get paid at all…and I am delighted to do it this way. The only time money factors in is in fundraising. I only raise funds for the two non-profits that do the most for seniors with dementia: The Alzheimer’s Association and SeniorAge. I volunteer extensively for the former and work for the latter, but I raise funds for them not even a smidge out of compulsion, but because I believe in their mission to help seniors.
Last note about the blog…ok last two notes…like a history teacher or a pastor, when I say “last note”, it probably isn’t. 😉 I tend to write as I drive (in my mind) and barf it all on paper all at once. My proofreading skill is severely buffeted by my lack of time to deploy said skill…so there may be typos. There may be emojis too…because they do show emotion and I want my feelings to be read correctly. 😉 The actual “last note” part was this: I will try hard to post every MWF. I used to post every week day, but my time is short and I don’t want to bore you with the mundane any more than is necessary.
Holy moly, since I just blasted too much info at you in the intro, I am going to just discuss one quick topic here today: Staying in the now.
Saturday I ran 38.4 miles as a fundraiser for the beforementioned 2 non-profits. I will keep it going through my birthday on July 9th. I got a slew of news coverage including these wonderful pieces: LINK LINK LINK and I have another one or two tabbed this week. I celebrate the fact that I was able to raise some needed funds for these two outstanding organizations, but I have to keep moving. I lost 120 pounds in preparation for this run…but I still need to lose 40 more and, more importantly, I need to KEEP it off. See, friends, this ain’t my first chubby rodeo. I have lost large sums of weight multiple times. I have tried, successfully, multiple diets and they all worked…until I stopped. Then I gained it back with interest each time. I can celebrate the victory, but I have to stay in the present. Similarly, if I am having a bad time…if I gain back some weight, I have to stay in the present too…and hop back on the trail of losing and maintaining.
One of the biggest challenges of caregiving, for me and many I know, is uncertainty. It is the uncertainty as to how mom would be doing when I would arrive (I would visit her in the nursing home most every day). It is now the uncertainty as to whether she is ok. See, we are in “Shawshank” mode on the blog because we are locked out from the free availability to come and go for visits as we can because of COVID-19 and its variants. The number of days above lists the number of days since we could visit for every meal and/or sit with mom watching Andy Griffith. (Shawshank Redemption is an amazing movie about prison life and beyond.) This uncertainty used to be much more of a roller coaster than it is now. When mom was mobile, some days I would arrive and she would be “fine”, other days she might be topless or teethless, or mad. All emotions were within the range of possibilities. All behaviors were as well. Add to this the fear of her falling, the pre-mourning of not only the old her, replaced by a new her, but the pre-mourning of losing her as well. Throw in a pinch of fear, of guilt for not keeping her at home longer (even though SeniorAge helped us keep her in her home at least 6 months longer than we would have otherwise, it was still the right choice even if it stunk.), and faith-testing frustration, and what you have is a poop pie of uncertainty that wafts stink over my soul many days.
However, there have been countless GREAT visits, and there still are on the few 15 minute periods we are allowed inside the iron gate to visit. We have laughed more times in the last 4 years than we did the previous 10. We have held hands while watching TV for hours and hours. We have been blessed, until recently, with mom still playing the piano, even if non-verbal. We have fought back tears and we have replaced them with smiles. Mom, while in hospice care for over a year now (!!), has been a joy and is pretty consistently pain free and “happy” seeming….and we are super thankful.
So given this rollercoaster, and remembering my somewhat Pollyanna personality and almost unfairly good experience, please accept this as advice from someone who has struggled with caregiving and with weight gain and loss over and over: Live in the now. Every day is a new opportunity to love your loved one with dementia! Have a good day yesterday? Cling to the joy, but stay in the present. Terrible day yesterday? Don’t give up. Today may be much better. Have a mountaintop day? (i.e. your loved one was more lucid than normal, remembered your name or some other nifty fact…or possibly you ran 38.4 miles as a fundraiser…). Bask in the day and let it strengthen you, but stay in the now the next day too. Don’t let yesterday’s wins and/or losses change you for the negative moving forward.
As with the past, don’t look too far into the future either. (Cold towel alert here) I am sorry, indeed very sorry to say this, but we both need to hear it: as of the morning of 6/23/21, there is no cure for dementia and 100% of those with dementia will die of it if something else doesn’t beat it to the punch. All 6+ million people in the US alone will die of the disease (or something else faster). However, this fact needs to motivate us to live in the now. It needs to motivate us to embrace every day as a new opportunity. It needs to push us to raise funds, to learn more, to help others suffering in the same boat, and to love the Dickins out of them. Worry? Nope. Here is a Bible verse for the believer to cling (hard) to:
“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air: They do not sow or reap or gather into barns—and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life? And why do you worry about clothes? Consider how the lilies of the field grow: They do not labor or spin. Yet I tell you that not even Solomon in all his glory was adorned like one of these. If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the furnace, will He not much more clothe you, O you of little faith? Therefore do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the Gentiles strive after all these things, and your heavenly Father knows that you need them. But seek first the kingdom of God and His righteousness, and all these things will be added unto you. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Today has enough trouble of its own.” –Matthew 6
Consciously try to wipe the slate clean of sadness before you visit or when you wake up with your loved one. Know that there will be good parts and bad parts to the day, just like any day. Know that if you look hard enough, you just might see some of the old person there and you WILL see things you like in the new one. Know that you have an opportunity that those who suddenly lose their loved one do not…another, if imperfect, day to spend with him/her. “Leave it all on the field” in your love and care, doing your best and extending yourself boatloads of grace. Now is the only time that matters. You will have time to look back once they are gone and you will be able to do so with less regret and with a knowledge that you did your best. Every day is a new opportunity indeed…seize it while you can.
Mom update: (Note: I try to fill you in on how mom is doing every. Unfortunately this has been pretty futile not being able to visit.) Last I heard (yesterday) she was pretty unresponsive, but not in pain in any way. A hospice chaplain was allowed in to read her some Bible and play some music. I am thankful that hospice chaplains don’t carry the virus. (Sorry…that was negative. I love their chaplains, I am just frustrated that a vaccinated me can’t visit a vaccinated her because employees won’t be vaccinated while working with the most vulnerable people on Earth. I am tired of being locked out and I miss mom. Time is short and I want to spend it while I can.)
Fundraiser update: I mentioned that I completed the run Saturday. 38.4 miles…actually longer than I expected. It took longer too. Look at Monday’s post for more details. The funds still are coming in and of that I am humbled and thankful. We need to beat this disease…and soon! Here is the link of you want to contribute and to learn more about it…please check it out and watch mom play the piano 🙂 : LINK
Last note (again): Use the search box on the home page and use the page numbers at the bottom of the All Posts section to find older articles. I have completed around 700 of them, but they are pretty darn searchable. 🙂 The Sweet 17 in the title are explained as well… PLEASE share early and often on social media and to anyone who could benefit.
If you need help on the dementia topic: The Alzheimer’s Association’s 24/7 helpline is found at 1-800-272-3900 or you can call or text me at 417-955-2513 or find me on Facebook. I am not 24/7, but I try. 😉