Posted 8-16-19
I received a message from a super sweet, but shell-shocked lady in the Midwest yesterday that reminded me that we haven’t really done much lately with talking about “Now What???” issues when you first get the dreaded diagnosis. Here is my take of a good jumping off point of how to get prepared quickly for the roller-coaster ride that awaits for patients and caregivers (in approximate order-ish of importance, sort of):
- First: I am very sorry. I cannot begin to understand, but know that I care.
- Get a second diagnosis opinion.
- Also get the opinion of a neurologist (Note: there are many health concerns that mimic dementia.)
- If all agree with the diagnosis, exhale. Take a little time to process, to mourn, to relax and to sort out your feelings. It is a very hard situation, but it isn’t hopeless. Spend time with family. Jot some stories in a journal. Pray. Ask others to pray. Find a local support group at the links below.
- Become very familiar with the website Alz.org and their 24/7 helpline at 1-800-272-3900. The Alzheimer’s Association website does a really nice job dividing up the 20,000,000 topics we could be talking about in this discussion into a simple few clicks. Their phone number is manned by professionals 24/7.
- Navigate to this link on the Alz.org site: LINK
- Also check out this link right off the bat to find your local office: LINK
- Find your local Area Agency on Aging (also known as an AAA…not the car club people). Either visit this LINK or Google your state and county + Area Agency on Aging. The agency on aging can help you in dozens of ways, nearly all of which are donation-based or just plain free. They have care giving classes, fall prevention seminars, exercise sessions, home-delivered meals and many, many other ways of helping.
- Investigate what the AAA and the Alzheimer’s Association can do to help you or your loved one stay in his/her home as long as possible. They can assist with home safety and fall prevention measures.
- Check with your AAA and the Alzheimer’s Association about respite care for caregivers.
- Contact a law firm that specializes in Elder Law and make an appointment. There are laws that may let you shield assets from the ravages of Medicaid and other concerns that only they can adequately help with. (Ask about Medicaid-approved annuities and/or promissory notes, division of assets, and other ways to legally protect what you have fought so hard to accumulate. Ask about help with power of attorney options as well)
- Create a medical support team of family, caregivers and medical professionals. Include social workers and similar professionals who know the elder care “industry”. Your primary care physician will likely set up speech and occupational therapy referrals pretty quickly as well as other specialists as needed.
- Similarly, create an emotional support team of loved ones, prayer warriors, your pastor, church family, friends and family. All parties involved will be confronted with complex problems in the medical area, but also in the spiritual area. You will need these loving partners.
- Talk to your doctor about medicines that will extend the early stages of dementia in many people. You have to catch the disease early enough to maximize the usefulness of this class of meds, but be very sure to ask.
- Discuss your feelings with your family. Discuss advanced directives/living wills and other end-of-life concerns (funerals, etc) so that everyone understands your views.
- Study and have friends and family study. Here are some good links: LINK LINK LINK LINK LINK LINK LINK LINK LINK LINK LINK LINK LINK LINK LINK LINK LINK LINK LINK
- Work on wellness activities that will help. Anything that is good for the heart is good for the brain. Exercise, proper diet, mentally-stimulating activities, etc…
- Discuss transportation options with loved ones and with the primary help organizations.
- Manage stress. I know, a terminal diagnosis doesn’t exactly exude stress relief. I can’t imagine. However, managing stress with prayer, meditation, deep breathing, and the like will help cope with the reality of the situation.
- Get on the national No Call List here. Amazingly, some terrible people prey in people with this disease. This list will not prevent all calls, but it will cut it back quite a bit. Talk to your AAA about fraud prevention classes.
- Talk with your loved ones about where things are. (Passwords, bank accounts, insurance, things you have always done that others may not know how to yet.)
- Contribute to web forums and read what others post, but limit your time there. Too much exposure to venting and/or ranting can discourage instead of encourage.
- Advocate for others with the disease. The Walk to End Alzheimer’s is coming up soon in most places. Sign up and walk. 🙂
- Know that you are NOT ALONE. I will be here…and countless like me… until there is a cure. 🙂 Someday, some sweet day cures or at least better treatments will come… Don’t give up!
While there are many, many other pieces of advice I could list here, expect that the Alzheimer’s Association and their organized support groups will help you contextualize them into matching your needs. I wish, for all I am worth, that I could make this easier…or just go away, but I can’t. Preparation will soften the blow and I know that these steps will help.
Update: Mom has struggled the last day with a bed sore caused by her chair. We are going to change up her regiment of time in her chair versus time in bed being rotated. They are addressing the sore itself.
I had a nice lunch with mom and with her former memory unit friends behind the keypad-locked door. I even showed my old friend Mrs. PB&J that I am now on a PB&J sandwich for lunch diet to reduce my spending and perhaps lose weight. Driving lots and lots of miles and other costs (like having wonderful, but sometimes expensive kiddos) have made this a necessity to be sure. Mom is very tired and sitting slanted today, largely because of pain that she denies having but almost surely does have. Whether you are just entering the ranks or are nearing the end like us, this disease stinks. I wish I could tell you otherwise, but momma taught me to always try to tell the truth… 🙁
#EndALZ
Note: This is not everything you will need, but it has links to most everyone you need to find your answers. If I missed something glaring, PLEASE comment below and I will add it. 🙂
Note to my email sender from yesterday: I hope this helps! I am so sorry that you are having to go through this. 🙁 Email or message me if you would like me to help you with some of the legwork. I am not fast, but I am free of charge and I do care. I will also be praying for your unique situation to get better. Here was the blog I mentioned in the message: LINK
I love you posts each day, they help me and others!
I miss your mom planning the piano as I am you do as well.
Much love to you all today!
Thank you very much! 🙂 I miss it too. She has played for 60 years…