“What I wish someone had told me in the beginning” (from Alzheimer’s daughter)

This email will be of most interest to caregivers.

As you might imagine, I scour the online support groups when I get a chance, looking for good articles or tips to share.  I saw this post made last week by a woman whose father has Alzheimer’s, and a follow-on post by a woman whose mother has Alzheimer’s.  The post is titled “what I wish someone had told me in the beginning.”  Though I found this on an Alzheimer’s-focused online support group, I think several of the suggestions are applicable to those in the Brain Support Network group.


“What I wish someone had told me in the beginning”
Posted by Sharon909 on AlzConnected.org’s Caregivers Forum
Wednesday, June 8, 2016

1) Make sure SOMEONE goes with your loved one to all doctor appointments. My father would ‘forget’ medication changes or instructions before he left the room, and then argue with me about it.

2) Make sure to log all of their medication, what they are for, how they are spelled, and what the dosage is. Put it somewhere where it can be found in case there is an emergency and paramedics need the info. Keep a copy for yourself in case you have to answer questions by phone. People with this disease tend to ‘hide’ their medications and when there is an emergency there wont be time to search the house for the bottles. My father had duplicate medications and was taking brand and generic of the same drug and ended up in the ER several times before I realized why.

3) Make sure to have the doctor notify the MVA [motor vehicle authority]. They will schedule your loved one for a re-test. If they fail they will revoke their license. Its scary when they get lost driving to the store or forget the rules of the road. And it helps for the government to be the bad guy, and not you.

4) Find an Elder Law Attorney. Take your loved ones to visit them while you are with them. Have a power of attorney done (making sure it gives you all the powers to gift funds and act on their behalf on all matters! Mine is a dozen pages long!), advanced medical directive, DNR, etc.

5) Have the attorney review their financial status. If at ANY point they may have to file for medicaid, the attorney can help transfer assets into a family account now, to protect it from being seized in the future.

6) Have your family discuss caregivers now. The further along the disease progresses, the less agreeable they will be to letting some stranger in the house to help with cooking, cleaning, driving, errands, medication management, etc. Even if you only start with 3 hours a day, one day a week, try to get something in place. I had to tell the caregiver to pretend they were a neighbor coming to visit. They sat on the porch and just talked for a few hours to chat and report back on anything that seemed alarming.

7) Have copies made of EVERYTHING in their wallet.

Order a duplicate license, SSN card, insurance cards, credit cards, etc. As the disease progresses, they will HIDE their stuff and then lose it. They will accuse everyone of stealing it. But you will need their ID and insurance cards for everything so its best to keep it safe. I let my father keep expired bank cards, empty gift cards, a checkbook to an old closed account, and his license and insurance card. But when it was time to go somewhere, I knew I had the right stuff.

9) Start purchasing items to secure the thermostat (my father would have the A/C and the furnace on at the same time). Get an ‘easy’ remote control (my father would press every damn button and we would spend hours trying to get the TV right again). Have the hot water tank temperature adjusted so they don’t scald themselves (my father wrote on the wall AND on the sink with red sharpie marker “hot” and ‘cold”. So don’t let her have any sharpies! lol.)

10) Have them agree to put any fine jewelry or valuables in a safe deposit box, or a fire safe (with extra keys) or distribute to family members now. My father hid his cufflinks in his shoes and his USMC medals in the cereal box. We almost threw them away!!

11) If they have a pet, get autodispensers for food and water.

12) Put everything on a surge protector and remove questionable appliances from the house. My father had a house fire because he plugged in an old space heater and forgot to turn it off.

13) Go around the house and take pictures of everything. If there is a robbery or fire, you will more easily submit a claim.

14) Notify the neighbors, the bank manager, the sherriff’s department, the pharmacy manager, the accountant, and anyone else your loved one may call to let them know what is going on. My father called 911 for everything and the pharmacy manager would call me whenever he tried to refill a prescription on his own.

15) Remove all firearms from the house. This seems obvious but when your loved one is military, its not an easy task. My father called the police and told them I stole his guns, but when I explained his dementia they thanked me for being safe.

Comment Posted by Jo C.

I would also add that it is best to find their birth certificates, marriage certificate, any divorce papers from prior marriages if there were any; any military papers including their discharge papers and the deed to their house, registration to any vehicles, insurance plan certificates including homeowners insurance policy; long term care insurance policies burial insurance polices, bank statements, original Trust documents; Wills; DPOAs, HIPPA Waivers; etc,

If there is no diver’s license, take their State ID; if they do not have a State ID; have them go to DMV and get one. NOTE: In some areas, if the person is unable to leave the home or if it is a taxing effort for them, DMV will send someone out to the house to take the photo and have papers filled out. Great service and used it for my parents. In our state, Medicaid wanted either a driver’s license copy or a photo state ID.

I also had as much as I could in their bills put to automatic debit including insurance policy payments so they would not go lapsing. I eventually took over all finances and bill paying, but we had to start low and go slow.