I found this article on the Alzheimer’s Speaks blog. If you are interested in dementias, and especially in dementia care, check out their blog and website – they have some great information. This article is written by one woman, sharing her lessons learned through her experiences of caring for her mother dementia.
Top 10 Things Learned On The Journey With My Mother
By – Diane Elinor Baldwin Hoover, ElderofFive, Care Warrior for Little Mama 2005 – 2013, Administrator, Memory People™, Inc.
In Honor of Bessie Eveyln Morgan Baldwin – Little Mama
5/1/1921 – 12/4/2013
#1. LEGAL STUFF: be prepared. It is hard, but being prepared and having a plan is required to provide best decisions for their care and protection. The day will come when you know you must think of final arrangements and honoring your loved ones wishes. Be prepared.
#2. GUILT: Care Warriors, ban this word from your life. If you are on the front lines of this war whether your loved one is home cared or in a care facility, you are a care warrior. Decisions made from a heart full of love are good decisions. Only you know what is best for your loved one, your family and for YOU! Guilt has absolutely no place in a care warrior’s journey.
#3. UTI’s: Almost a certainty. Pedialyte: little mama had one minor UTI in 6 years; we gave it to her 1/2 to 1/2 juice 3x a day. It balances electrolytes and helps with overall hydration.
#4. PLACEMENT: Trust your instincts: care warriors know when it is time – sometimes we know it is time and because of #2 we hesitate. Do not hesitate.
#5. FIBLETS: I outright lied to Little Mama. I even wrote fake prescriptions to make her accept care sitters and to take showers. I made up a fake form from her favorite doctor and it said – To the children of: ________________ Bessie must not be left alone at any time. She must also take a shower at least 3x a week. If you are unable to make these things happen, I will have to step in and find a care facility that can take better care of her.” That worked during the feisty stages.
#6. LOUD: when seeking BEST care for a loved one, be as loud as it takes for as long as it takes. Too often there you will find a scary lack of knowledge among medical professionals about dementia diseases.
#7. KIND: be especially kind to YOU! We already know how kind you are to loved ones.
#8. HELP/RESPITE: if it is available, ASK!! If it is not available, do not take any guff off of anyone not actively engaged in the war (this is part of being kind to yourself). #2 is important here, too.
#9. HOSPICE: Do not wait – trust your instincts. If your loved ones are eligible for Medicare, please ask primary care physician to order a hospice review/or call them yourself. Earth angels. If accepted, no more ER trips – medical staff comes to you and Medicare pays! And they provide personal hygiene 3x a week!!!
#10. LOVE: I admire you all so much. There is nothing easy about this journey and I know you all are here because of love. Love. It is the strongest word. Blessings on your heads.
A Big Thanks to Diane for sharing her life with all of us.
Check out some of my other posts if you want to read more!
- 4 Tips for Caregivers
- 10 Virtues of Caring
- 8 Things to Remember When Everything Goes Wrong
- I Wish I Had Known Before I Started Caregiving
You can also join Memory People on their facebook group. So far, it has over 10,000 members, myself included. It’s a online support and awareness group. Posts are private (so they don’t appear in your public facebook feed or on your page) and the support there really is amazing.
Memory People™ is an Alzheimer’s/dementia and memory impairment Support and Awareness group. We are patients, caregivers, advocates, family members and professionals sharing our journeys with each other, seeking comfort and understanding, and receiving support and helpful information.
We don’t talk about miracle cures or false hopes here. We share about the reality of dementia and memory impairment, and through support and education we find the ability to take another step each day in this journey.
We welcome anyone, even if you’re not directly touched by dementia or a memory impairment. You will find knowledge and awareness here.
Memory People was Founded by Rick Phelps who was diagnosed with Early Onset Alzheimer’s Disease in June of 2010 at the age of 57. Rick created MP to be a safe, comfortable place to bring real-time support to those touched by these diseases and any memory impairment.
Here in MP we are “bringing awareness, one member at a time…”
*Please note: We at Memory People™ are in no way professionals in the area of Alzheimer’s or support or counseling. Please contact your local doctor or neurologist if you are in need of any professional advice.