Posted 8/30/23
And after six days Jesus took with him Peter and James and John, and led them up a high mountain by themselves. And he was transfigured before them, and his clothes became radiant, intensely white, as no one on earth could bleach them. (Mark 9:2-3 ESV)
Howdy folks! Welcome back to the Digital Cornbread table this fine Wednesday afternoon!
I just wanted to offer you one little tip from someone in a valley to many others in similar valleys of life: Hold fast and look up to see the good.
Here is a little illustration I created to demonstrate the expected outcome options compared to the reality of the situation with mom:
I know, I know…I hear ya. You are saying to yourself “I will never give to one of Digital Cornbread Boy’s Alzheimer’s fundraisers again. It is obvious he is blowing the money on super expensive tools for illustrating his points!!!” …but here this: I created this ultra-complex diagram……. on Microsoft Paint………..for free! 😉
I didn’t really explain the horizontal and vertical much here. Think big picture as you interpret it. It is a “How’s the progression” chart as well as a peace of mind chart for many. Just suffice it to say that we really didn’t know what to expect when mom was diagnosed nearly 15 years ago. The speed of the change, the decline, the roller coaster days/weeks/months. The pandemic(!!!). Falls. Seizures (just had a few this week again. All of these things and more caught us off guard. However, now that we have hit a somewhat more flat part of the valley, we have prospective. We can somewhat see the ups and downs from whence we have traveled and we can see the ones ahead, to a point. So what do we do when there is a lull in disease progression? Here are some ideas:
- Sing- There have been many good days. or at least stories, along the way. If you keep a journal or a blog, go back and see some good times. Break out the pictures from before and during your journey. Be thankful…for the good times and for the strength in the bad times.
- Exhale, regroup, and brace for more to come
- Evaluate- What is “working”? What makes your loved one happy? Sad/Mad? Plan…then eat the meat and spit out the bones!
- Gather- Take the break to find more people for your care circle. Do you get palliative Hospice help? Check in with your family. Ask in Sunday School. When times are mellow for the time being, fight for the future you in this way and the care you provide will benefit from it. Lean on the local Area Agency on Aging and the Alzheimer’s Association for help too.
- Outlook Enhancement- I didn’t know exactly how to shoe horn this into my acrostic, but this is as good as any. Find a hobby that helps you relax. This is very helpful if you can do it with your loved one. Reconsider music as a therapeutic tool…we connect with it in a unique way and sometimes we just need a bit of time to collect a playlist. Find things that are life-giving and use them to enhance your outlook.
- Ombudsman- For those with a loved one in a long-term care facility, find and get to know your Ombudsman. They are invaluable in getting the best care possible for your loved one and the squeaky, but nice, wheel gets the grease. Here is a link that describes what these superheroes do: LINK. Another option: Become one. 🙂 I did it for around a year and will rejoin the group again in the next year…
- Diligence- Work on answering the following: Have you discussed the situation with your elder law lawyer? Not a regular, ambulance chasing type….the ones who specialize in helping seniors with these matters. Have you made final arrangements? (Home caregivers) Is your home wander-proof? (LTC)- Does your nursing home memory unit allow those who cannot move themselves to safety to remain residents? Many do not…and it would be nice to not have to move any more than you have to. Are you taking care of yourself? How is your health? Even the “little” things. Teeth for instance…what if you have an emergency trip to the dentist? It is better to have a plan…and better yet to take care of stuff before it gets bad…
SEE GOOD in these times. It can be very depressing, even in the lulls between decline stages. Take the time to recognize that and focus on the good times as best you can. Your physical and mental health directly ties into your ability to be the best care partner you can be and I know you want that. Thank you all for your work fighting back against this terrible disease. You all matter!
#EndALZ
Update: It looks like we may be exiting a lull period and entering more decline in mom’s world. She has had seizures the last few days and has had at least 3 events where I or my sister came to feed her supper and nothing would wake her. We had a care meeting to discuss this decline and are trying more regular breathing treatments/Oxygen. I like the lulls. I don’t like the decline, but she is worth all of it.
Oh…and one last thing, since I named this piece What to Do Between the Mountaintops (plural). There is another mountaintop coming for mom, my friends, and it exceeds any mountaintop she or we have ever ascended. 🙂 I yearn for mom to go there, for her own sake, soon…
Listen to this song carefully: Hold Fast, Help is on the Way. Hold Fast, He is Coming to Save the Day… I, friends, am sad these days, but not as one with no hope. In the end, we will all rejoice. (Hat Tip to Mercy Me for the song above…one of my favorites. 🙂 LINK )
