The erosion of the mind caused by dementia catches even the prepared off guard. My father was very much a Type A personality. A retired corporate manager, he was always highly organized and efficient. Everything planned and everything in its place. But when he was diagnosed with Dementia after his eightieth birthday it became more and more necessary for my brother and I to manage his affairs.
His diagnosis took us by surprise so we had to play a game of catch-up to get a handle on his affairs. Even though we now had a diagnosis, the effects of his dementia had accumulated over the years. Things he would normally have taken care of had been forgotten or mismanaged.
If we had taken some precautionary steps before his diagnosis we would have been better prepared. What follows are all the action steps you should take if you are the spouse, son or daughter, or caretaker of someone with dementia. Even if your elderly parent or loved one is not diagnosed or doesn’t appear to be suffering memory loss these are beneficial things you can do now to prepare for the future.
10 Action steps – Things to do when you or a loved one has dementia.
With dementia, things are not going to get better. The disease might progress slowly at first but then the effects of dementia will speed up and become more apparent so it is best to be prepared. Here is a list of things to do, things to prepare, and things to begin thinking about.
Taking these steps now can save you and your loved one a lot of hassle later. Maybe your father or mother is just becoming more forgetful or perhaps not handling his or her affairs as well as before. If you think that your parent or loved one might have dementia, seeing a doctor or neurologist is a good first step. Getting a dementia diagnosis is painful of course, but knowing where you stand and following a course of action is better than worrying. Plus, having the documentation of a diagnosis can help with any medical or LTC insurance claims.
I don’t think anyone wants to be a burden but sometimes through either stubbornness or being independent, aging parents can become more difficult than they think they are. This is why it’s better to get a grasp of their personal affairs before dementia progresses. If your loved one is involved then it will make everything easier. My father had everything organized but still, my brother and I were often scrambling to find things.
Step 1: Have a conversation about what needs to be done to prepare and how to take the following steps.
Start now. The more you have in place and the more you are prepared the more easily you will be able to handle whatever situations arise. Some crisis is inevitable and the more you have prepared the better you will be able to handle things.
Step 2: Make sure there is a clear, accessible will and/or family trust plan in place and that everyone has copies.
You can make a free will online or enlist the help of a lawyer if necessary.
Step 3: Power of Attorney.
Having this document is invaluable in getting things done. Having a general durable Power of Attorney and a Power of Attorney for healthcare decisions is a must. Make certain that whoever is designated as having the P.O.A. fully understands the commitment.
They will be the ones setting up access and faxing/sending the P.O.A. to banks, lawyers, doctors, and anyone that requests it.
Keep originals safe and have multiple copies on paper and scanned. Often people will request a faxed copy so having a fax machine is a good idea.
If you want to be better prepared, contact the banks and doctors and send the P.O.A. sooner than later. This way they have it on file when you need to get something done.
Step 4: Master list of contacts, account numbers and passwords, prescriptions, subscriptions, payees, friends, and family.
– Doctors, Pharmacists
– Lawyers
– Accountant
– Funeral director
– Insurance agents and companies: health insurance, life insurance, LTC insurance, auto, and home
– Bank accounts, get to know the manager at the bank
– Passwords to everything – computers, accounts
– Passports, Social Security card, Driver’s license – Know the numbers and Birthdate for verification purposes
– Car documents – registration, proof of insurance, title, service records
– Prescriptions – have an updated list from the doctor of all prescriptions and contact info for the pharmacy
– Payees – have all the account names, numbers, and passwords for utilities and all other accounts
– Safety Deposit boxes – key and numbers
– Know the location of all offices – Doctors, lawyers, agents, accountants, city/county officials.
– Neighbors and friend’s names, addresses, phone numbers, and email – knowing their neighbors is vital because they can check on your loved one and often know what’s going on before you do.
– Know everyone, especially anyone that expects to be paid.
Step 5: Documents and Keys.
Know where important documents are in the house or safety deposit boxes.
Have a good filing system for the documents and contacts lists that you have.
Know where keys are and what they go to. Have copies of important keys yourself. We put a key lock box on the side door of the garage so someone could enter the house if necessary.
Step 6: Automate everything you can.
Put all bills on autopay that you can. Utilities, credit cards, insurance, community fees, taxes, and subscriptions.
Mail – get important bills sent to you by email or if necessary set up Mail forwarding to your address so you get bills. You can also set up the U.S.P.S. a Daily Mail Monitor through email to know what mail is coming to their house.
Alerts – set up account alerts for balance and charge alerts to keep track of balances and possible fraudulent charges.
Add to no-call and no junk-mail lists. There are countless people out there looking to scam the elderly.
Step 7: Make sure everyone has your contact information.
Neighbors, friends, doctors, lawyers, accountants, etc…
Making sure someone can contact you if necessary is a great way to avoid a developing crisis.
Step 8: Taxes.
You don’t want to find out that your loved one has forgotten to file their taxes. Dealing with the IRS and fines is no fun.
First, know how your loved one does their taxes. My father used to do his own then suddenly switched to an accountant when he was having difficulties doing it himself then soon forgot to do them completely.
Make sure you can access tax records if you need to prepare them yourself or have to collect documents for an accountant. Having their mail forwarded to you is the easiest way to ensure that you get tax documents. The hardest thing to get access to is the Social Security tax statement if you don’t readily have access to their mail. An accountant can file the necessary paperwork to access documents.
Step 9: Car.
Driving and dementia don’t go well together. My father lived in a rural area and his car was vital for him to get around. His car was linked with his routine and his sense of freedom, two things that are hard to mess with.
As his dementia progressed it became clearer that we had to get rid of the car. It was strange, but the car more than anything was the hardest hurdle. My father was convinced he was fine and that he could continue driving.
I don’t know what the best course of action is to get the car away from someone with dementia but here’s what unfolded with my father. One of my father’s doctors decided he was a risk while driving. She reported this concern to the D.M.V. My father received a letter stating he needed to come in for a driving test to keep his license.
He forgot all about this and kept driving. Because I lived on the other side of the country physically getting rid of the car was difficult. My father took the car to be serviced, got lost on the way back, and tried to drive into Canada. The Canadian border police turned him around and the U.S Border Patrol impounded his car because he didn’t have a license.
I had to find someone to pick up my father, get him back home, and deal with the impounded car. The only good thing that came of all this was that my father was safe, no one got hurt, and the car was finally gone.
Step 10: Down the line.
Because dementia and aging progress in only one direction and the effects of dementia accelerate with aging, having a longer-term plan in place is a good idea.
My father wanted to stay in his own home as long as possible and we made this happen till too many problems arose. If your loved one is going to stay in their own home, make sure there are necessary mobility aids like railings in place on stairs and in bathrooms.
It was suggested that my father get a type of fall aid alert system but I knew it would be of little use because he wouldn’t remember to wear it in the first place. I can see it working for some people, but not for my father. His belief that he was fine also ensured he would never use it.
Try to ensure they always bring a cell phone with them. My father began wandering. Having a cell phone would have made it a lot easier to find him. The problem is he came from a generation that wasn’t as attached to their phones as we are now.
Finding a home care agency is one way to ensure your loved one is safe. My father stayed in his home because we had home care coming from once a day in the beginning to longer periods later.
They helped with meals, shopping, and light cleaning all the while providing companionship. It is also helpful to arrange periodic cleaning but that didn’t go well with my father because he got upset and suspicious when they were there.
It is also never too soon to begin looking into possible care homes with a Memory Care unit and/or Skilled Nursing. Start researching options and costs. Some homes have waitlists so it is a good idea to look now. Visit homes and get a feel for the options.
Planning the financial aspects of future care is a good idea. My father had Long Term Care insurance but that only goes so far. Talking to a Financial Planner about the costs of future care is a good idea.
Bonus Step 11: Death Cleaning.
My father was not a hoarder but there is a house full of stuff to deal with at some point. My father even made an inventory of objects he thought to be of value.
The problem is that just because you collected these objects in your life does not mean it is of any interest to anyone else.
The idea of death cleaning is that you do get rid of things before you die so that you don’t burden your family with having to go through all the stuff you collected over the years.
See the book; “The Gentle Art of Swedish Death Cleaning”.