This is a guest article by Diane Hoover, an experienced dementia caregiver. Diane cared for her mother for over 7 years and has been a member of Memory People since 2011. Memory People is a Facebook community for families affected by Alzheimer’s and dementia. It’s nearly 10,000 members strong and provides amazing support.
Here are the 10 lessons Diane shared with the Memory People community. This is what she learned during her caregiving journey.
Diane’s 10 Caregiving Musts
I joined MP early in 2011, Member #230. Today we are approaching 9500 members. Amazing grace. I cared for our little mama for 7+ years. This is stuff I learned.
#1. 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.
#2. 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.
#3. PLACEMENT
Trust your instincts: care warriors know when it is time – sometimes we know it is time and because of #1 we hesitate. Don’t hesitate.
#4. 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.
#5. 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.
#6. KIND
Be especially kind to YOU! We already know how kind you are to loved ones.
#7. LEGAL STUFF
Be prepared. It is hard, but being prepared and having a plan is required to provide best decisions for care. The day will come when you know you must think of final arrangements and honoring your loved ones wishes.
#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). #1 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!!!
I admire you all so much. There is nothing easy about this journey and I know you all are here because of love. Blessings on your heads.
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By Diane Hoover, dementia caregiver to her mother for over 7 years Image: Memory People Dementia Awareness Page
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