Care Tips for Caregivers: Dementia
- samalee
- 5 days ago
- 5 min read
This post is for those who are at water's edge with a loved one (LO) who has been diagnosed with or is showing symptoms of dementia. *Some of the tips do translate for any caregiver's situation other than caring for those with dementia. To keep your sanity for the potential long haul, have a system in place.
Keep in mind, there are over 100 forms of dementia requiring a neurologist to diagnose which form(s). Also, as you move forward with care plans, medicines, and decisions of residence, etc., there needs to be a formal diagnosis.
GET A NEUROLOGIST REFERRAL
This appointment is usually secured by your LO's (loved one) primary care physician.
GET A FORMAL DIAGNOSIS
The diagnosis is determined by your LO's neurologist. It will come in handy as the disease progresses, and with insurane, Medicare, Medicaid or legal issues.
Part-time or Full-time Caregiving may be the hardest thing you'll ever do. The reward is knowing you've done your best to provide the best care.
My reference is with Momma Mary, who went through multiple tests and brain scans, revealing 3 forms of dementia: Alzheimer's (memory & behavior), Frontotemporal (language skills) & Vascular (damage to the brain from stroke, heart attack, diabetes, HBP). Her physical health had to be addressed first, with 8 surgeries and a total evaluation of all of her medications. After her body felt and functioned better, we were able to determine "something's not quite right." She had shown signs long before, but we dismissed them, thinking they were from all the other health issues. Basically, we had to clear away everything else before we could see the cognitive issue.
SECURE A POWER OF ATTORNEY
If you will be the primary caregiver or the primary decision-maker, I strongly encourage you to consult an attorney who specializes in elder care law and can provide you with a P.O.A. (Power of Attorney) for medical and business decisions, or guardianship, as it relates to your state & situation. *Make multiple copies and keep the original(s) in a file. You will be asked to show this at physician appointments, Emergency Room visits, hospital stays, etc. THIS IS SO IMPORTANT FOR ALL FUTURE NEEDS OF YOUR LO AS THEY CHANGE. CHANGE WILL HAPPEN SOMETIMES FASTER THAN YOU WERE PREPARED. Being prepared with these documents is crucial!
HAVE YOUR NAME ADDED TO THE CHECKING ACCOUNT
This would apply to those who are the primary caregivers or decision-makers, typically family members. Make sure this action is agreed upon. When Momma came to live with us, she insisted my name be on her new checking account. I hesitated, never knowing it would prove beneficial as her disease progressed. Eventually, she forgot how to write a check or even how to use a debit card. Because I was her primary caregiver and she lived in our home, I would use her account to purchase her medications, her favorite foods, or gifts she asked me to purchase for her grandkids. Also, this is the account given to (1) Social Security for an auto-deposit and (2) the life insurance agency. After she died, I used that account to purchase her headstone. Because my name was already on the account, when I gave the banking manager her death certificate, there was no debate about removing her name and me keeping the account in my name only.
HAVE A LIST OF ALL MEDICATIONS & SUPPLEMENTS WITH DOSAGES
Momma had always poured and dispensed her own medication. When a medical crisis occurred in our home, we couldn't answer simple questions about her meds, because we did not know. That day, I found every medicine bottle, including over-the-counter remedies and supplements, and lined them up on my dining room table. This list included the name of the medication, the dosage, when to take the dosage, and the name of the prescribing physician. This helped to determine what she was prescribed and what she just picked up at the store without the physician's knowledge. This first list was presented to her primary care physician, who then crossed off items that were not needed or could interfere with the prescriptions. Then, the revised list became the official list. Nurses loved the organization!
MAKE A QUICK-GRAB FILE
Being prepared with a quick-grab file you can lay your hands on in seconds will help maintain your steady state of mind in a crisis. What's in the quick-grab file? A copy of the Medical P.O.A. (Power of Attorney), a list of current medications, supplements, and dosages, a copy of the insurance card, the Medicare/Medicaid card, and a Social Security card. When I called an ambulance, they needed the medication list immediately. Then, upon arriving at the hospital, all of that quick-grab file information was required at check-in. Each time you visit a doctor, even if it's the same primary physician, the receptionist or the nurse will ask for the medication list again. Make sure another person knows where to find this quick-grab file in the event you're away. A dear friend shared her tip: Keep a quick-grab file in the car's glove compartment at all times, because emergencies can happen at any given moment.
HAVE A ROUTINE
Dementia patients can struggle with things you and I would not give a thought to, like children running through the house, too many noises, too many choices, etc. Usually, when this agitation occurs, they act out or retreat to a safe place or person. Establishing a daily routine is (a) beneficial and calming to your LO and (b) can alert you to possible changes in their health or progression of disease. You'll grow tired of this routine way before they do. This is one of those systems you want in place. Have it posted somewhere in case you are unable to provide care because you're on vacation, out sick, or at the grocery store. Having a routine can include tracking daily hydration and food intake. As the disease progresses, patients with dementia do not feel hungry or thirsty. I kept a daily log.
This list may seem overwhelming and time-consuming. REMEMBER: You've got this! Each day you are learning your LO's (loved one's) changing personality, agitation triggers, likes and dislikes, and even bathroom habits. It's a gradual change for them and for you. I'm praying for you. Know that my email is contact@samaleeallen.com
Below are resources for related articles, books, instructors, and education:
https://www.visitingangels.com **Momma would take a shower for her "bath angel" and not for me!
https://teepasnow.com **Teepa Snow was one of my faves on YouTube, too
https://www.youtube.com/@answersaboutalzheimers **with Debra Kostiw, another fave on YouTube
https://laurawayman.com "Dementia Whisperer"
"Nothing to Fear: Demystifying Death to Live More Fully" book by Hospice Nursejulie Julie McFadden RN "Hospice Nurse Julie" (she has a YouTube channel I found as a treasure)
New studies are being done as a result of a huge population diagnosis of dementia. It pays to follow the current advances. I found studies, treatments, and caregiver tips on TikTok.
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