Posted 12-19-19
I admit it. I am a regifter. Some Christmas seasons I am a serial regifter. So far….so far… I haven’t been busted or hurt anyone’s feelings. I walk a thin and precarious line, I know… I was thinking about regifting as I drove in today and thought this might be a nice time to regift some answers to a question I have been asked by several friends and members of the media: What piece of advice would you give to someone who was just diagnosed, or perhaps to their family? I have several pieces of advice. Keep what you want, rewrap some and give it to others and bring the rest back to Wal-Mart although it may not get you much of a gift card in exchange… Here we go (not listed in order of importance…I am shoehorning them into my acronym….) :
Read and read and read some more. Learn about the disease. Focus on solid sources (alz.org, the NIH, and scientific journals). Read a little WebMD and similar, but check their citations too. Read Facebook groups on the topic. Read caregiver books (The 36 Hour Day) and others give great insight. Read substandard sources if you want, but never take them at face value…research their claims. No, CBD oil doesn’t cure Alzheimer’s! Neither does a supplement or set of them. If they did, everyone would be using them to cure the disease. It is a trillion dollar cure. When something is found, it will be known. Until then, read and keep current. It will help you know that you are not alone and will help you prepare.
End hostility with your loved one and your family early and directly. If you have a hard past with him or her, take the first step and apologize, even if you feel like you are in the right. Settle disagreements. Give hugs. Meet and form a team and clear the air. You will need this peace as time goes on.
Get a second opinion, if you haven’t already. There are dozens and dozens of conditions that mimic dementia. Even dehydration or a urinary tract infection can sure smack of the disease. Get checked and rechecked as necessary. You need to know what you are dealing with, and do so early (!!) so you can be on the only class of treatment drugs that seems to help (Aricept or similar) extend the better early stages of the disease.
Investigate and hire an elder law attorney. This is critical! A good, reputable elder law attorney can assist you getting your loved one on Medicaid legally and promptly. This can often be done in a way that shields much of your assets. (Medicaid-approved promissory notes and annuities are common vehicles they use.) Every state is different and these experts can sort it out. Nursing homes for patients with dementia can cost $5000/month or more…much more. Even a shiny nest egg will take a beating at that rate.
Form a comprehensive care team. You will need a primary care physician, a neurologist, a social worker, an elder law attorney, and lots of help. As time passes and the condition worsens (especially), you will need respite help…someone who can come spell you so you can leave and get groceries, go fishing, take in a movie, sleep, use the bathroom…you know, the stuff that suddenly gets harder when you are caring for someone who needs to not leave your sight much. You will eventually add hospice to your little band of brothers and sisters. They work wonders and pull strings that you will come to love. The Alzheimer’s Association and your local Area Agency on Aging are your primary contacts to get this kind of care team help. Please, get with them early and often. They exist to help cases like yours and are typically staffed by some of the most kind people you will ever meet.
Time is fleeting. Love your loved one as they are, knowing that change is coming. Love them as they change, even when it doesn’t seem like it would matter (For example: if they cease to appear to know you.) Serve them. Give to causes that help them. Advocate for them. Watch TV with them. Play checkers with them. Your time to help them while they are alive may only be between a few years and a decade (or more), but your service in those years can live for generations. Your time is limited…leave it all on the field and leave no rock unturned in loving them and in helping find a cure. It is worth every second!
Engage your loved one early and often to write down the old stories. Even if he or she is symptomatic, you can be the scribe and use the early time to document tales of their childhood, favorite things, their favorite songs, and the like. Break out the old dusty photo album (Kids, this is what we used to use before we let our phone be our photo album) and write names, places and stories on the back. Better yet, make a journal or a video journal. Write a blog. I will help you if you need help. When any senior dies without doing this, a library of knowledge and joy disappears. You may have to fill in gaps and prompt the conversation, but it will be worth it. I lost out on that opportunity in too many cases with my mom.
Deepen your faith, even when it seems counter-intuitive. Read your scripture. Pray. Then pray some more. Meditate on what you read. Read Psalms. Read about Job. Grab a good Bible commentary set (John MacArthur made an amazing one) and use it to deepen your understanding of God and His promises. Your little boat will be shaken worse than Gilligan’s…you need an anchor to count on and the Object of your faith will be that for you. You will feel like Robinson Crusoe, as primitive as can be, some days all alone in caregiving. Your ability to rely on Christ as your everything is something you learn and grow into and something experience and time teaches. The sooner you work toward deepening your faith, the better.
More could be said, but I ran out of letters. 😉 I think these make up a decent little package even if I reused the gift bag that my new socks came in to wrap them in. You are in for a ride. Please call (417-955-2513), email (mark.applegate@senioragemo.org), message or carrier pigeon me if I can help in any way. I wish I could sugar-coat this stuff and tell you that it is really not that big of deal, but I cannot. Keep your head up and enjoy the Christmas season! God bless!
Update: Mom had another good day yesterday although she was quite tired. Her speech was slurred and stuttered more than normal, probably due to fatigue. Little Mrs. W, whom I wrote about yesterday, is still hanging on as of last night. Pray that she be in peace now as will be the case soon when she does pass away. I whispered another I love you to her as I left last night. Poor damsel in distress. Not here, not gone…somewhere in between.
#EndALZ
Wonderful site and loved your ideas. Well done.
Thank you very much! 🙂 Thank you for visiting 🙂