How Caretaking Became my Reluctant Side Hustle.

“SAY YOUR GOODBYES...YOUR DAD HAS ABOUT 2 DAYS ...”   The words my brother and I were told by an attending nurse as we waited for my father to come back from a scan and our Mom and sister to arrive to the hospital room.  Words that put us both in a state of shock, but words that then did not hold true.  In fact, he continued to live on for another three years.

While some may sigh of relief from that situation, for me it was the hardest three years I had experienced to date and continues to be life altering now with the added responsibility of my mother.

To say it's been a journey is an understatement.  I call it  the parental vortex - the side hustle that I never intended and does not stand to make me any money.  If anything its an emotional drain and attention vampire.  While this is a serious topic, I will say for my own sanity I approach it with as much humor and cynicism as possible or else I would go insane.  So why write this?   

I have learned alot from that first  moment and the years that followed, up until present time.  I am writing this at the urging of friends and people I have met on this journey to help others navigate through the same or similar situation.   

If your parents are/were anything like mine, the idea that ‘someday they would die’ was not a thought that ever entered their heads.  Nor was the idea of really planning what would happen as they aged.

Of course, a Trust and a Will was in place - and hopefully this is true for your case as well, but talking about the end of life process  was not.  It's important to talk about it.  As this is a blog post, I won't go into every detail , instead I'll provide a starter checklist to help get that conversation underway.  

The Important Papers

• Will and Trust

The easiest way to start the conversation is to ask about the Trust and/or Will paperwork.  This will make sure these documents are in place, that an attorney has a copy and its been notarized.   If a will does not exist  insist that it get done right away.  There are several online programs available or you can contact an estate attorney.  

Next, you will need to start gathering some of the key health papers and finance papers/files to create a foundation to face all scenarios. 

• DNR Order

  • DNR stands for the Do Not Resuscitate instructions. This worksheet and document will help to identify not only the instructions for end of life, but will help to identify other details that will spark more discussion about later care details.

  • This will be required to be on file at your local hospital and with the primary doctors office.

• Doctors List

  • As parents age, their list of personal doctors becomes quite long. It is a good idea to start a google doc or some shared document with your parents and siblings to keep this up to date.

  • At some point, one of these doctors will deliver some serious news and your parents will not be able to retain the facts and information. It will be good to have your own relationship with these doctors to properly guide the care.

• Power of Attorney

  • This will assign you to be able to access documents and also represent your parents in times that they are unable to represent themselves. Best when having to deal with insurance companies, banks and health files.

• HIPPA Authorization

  • In addition to the POA document, this form is something that the doctors offices and local hospital will provide and your parent will need to sign.

  • It not only allows access to medical records, but allows you to represent your parents with the doctors, nurses and schedulers among other hospital staff.

• Medications List

  • As parents get older, this is one list that gets longer and more complicated. This list will be needed for every doctors appt and any health care service needed by your parents.

  • Another shared document to keep and update regularly. Also, if in a spreadsheet - easy to print for every appointment and bring for the paperwork needed each visit.

  • Make sure the list includes milligrams and times taken per day.

• Health Insurance Cards and Policies (benefits outlines)

  • Keep a copy of these policies in the shared files location.

  • Additionally, take a picture of your parents drivers license and insurance card and keep it both in the shared folder and in an album in the photos of your phone. If you go to the emergency room and forget your parents wallet at least you will have it on your phone to access.

Care Requirements - Maslow's Hierachy for Aging Parents

Note the added “for aging parents” to the line above this. For me, learning the Maslow’s Hierarchy of needs was a game changing playbook, specifically when I travelled globally. Going into my own adulthood, I still use it as a guiding principle to help me focus on what is important. For your parents, its important to view it as the following…

• Safe Shelter

  If your parents insist on staying at their home, like mine did, you will need to do a sweep similar to baby proofing, just in reverse. First off, if the home is not a single level - this will be a bit more involved. Look for fall and trip areas, cords, furniture that is not steady, etc and sharp edges. Install grab bars and rails at stairwell, in showers and around toilets. If there is room, install a motorized chair that transports up and down the stairs. If there is budget, install an elevator if necessary.

  You will want to purchase a seat that goes over the toilet to give it more height. Place a bench in the shower and also grip pads. And this one they will fight you on, but get walkers and place them in areas with bigger open space.

  Install cameras around the house for you to keep watch of who goes in and out, and to see that your parents return safely from getting the mail, throwing out the trash, etc.

  Install an alarm system that they can use easily. And one that I found very helpful, install an amazon echo or google assistant in the rooms they spend the most time and place your phone number as the “help” line - this way if they fall they can yell out to the device to call for help and get you on the line. I had to do this instead of life alert as my parents refused to wear a device.

• Food - shopping, preparation and feeding

  As your parents age it will become harder for them to lift pots and pans, taste things properly to make recipes and just overall they will lose interest and stamina to cook. As well, trips to the grocery store may become more arduous.

  A couple solutions are delivery services with monthly meal subscriptions or just grocery delivery. Another is to combine a Sunday visit with meal prep - bring the groceries with you and then work alongside your parents to prep meals for the week. Or you can hire someone to help with his, more on that in the Automation bullet.

• Occupational Agility

  This requires the assistance of outside resources primarily your parent’s internist or general practitioner. Hiring a Physical Therapist and/or a Occupational Therapist to work with your parents to stay agile will be important to define how long they stay in their home independently. With a Medicare policy your parent’s General Practitioner can prescribe this as an in home service if there are agencies in your area.

• Automation (Security)

  Need to think of automation in terms of reducing the responsibilities of your parents in the areas of home, finance and care. Examples of this are to make sure there is a regular home maintenance service, person or plan in place to manage the gardening, repairs and simple upkeep and cleaning of the home. As for finances, make sure all bills are on autopay so nothing slips or incurs late charges. And for care, perhaps this is a time to start having a third party or person come into your parents home once a week to just help with things around the house or to organize games for brain health. This will get them used to having someone coming in to help and the hours can then increase as needs increase. Knowing that you have a ‘companion’ or caretaker that can come in and assist will give you a built in support system both for yourself and your parents.

• Protected Transport

  Another challenging subject, driving…and when to stop driving for their personal safety and the safety of others. If your parent has a smart phone and can safely check the driver and license plate - ride share services are an amazing option. If they are not adept at using apps, this is where the caretaker/companion can also start to assist especially if they are hired with the option to take your parents to appointments and run errands. Eventually there will be so many doctor appointments, you will need someone to help with managing the appointment scheduling and transportation. If you can find someone to grow with these needs, it will help you keep your sanity and a schedule of your own.

• Smart Finances

  This has already been alluded to with the automation of bills, but one key factor is access. This will require some checks and balances, and you will want another family member involved to act as an approver if you start to take over some transactions. What I mean by this is that having a third party with some oversight will ensure that no recourse can be taken towards you. Not being paranoid, just careful - money always brings issues so you want to make sure you have an insurance policy that someone else is party to your decisions.

  What decisions you ask? Mainly those decisions requiring large purchases. Additionally, if your parent becomes incapacitated to authorize expenses, you will want to make sure you are not only named as the Power of Attorney, but place your name on the banking accounts. If your name is on the account, it is much easier - certain banks will not allow you to make transactions with just the POA in place. Another good practice is to form a relationship with the financial managers from the investment manager to the bank branch manager. Last, if there are online accounts, keep a file of all the passwords to access what you need and same with the location of a safe deposit box key or in house safe code.

Options for assistance - living scenarios

After my father died, my mother stayed in the house alone.  Within months, she fell and soon after healing from that fall - she fell again. It was clear she needed to move to a safer place .  My siblings and I toured several local assisted living, senior living and nursing home locations - we settled on an Assisted Living Senior Community called Merrill Gardens.  Why this location works is that it provides apartments that are fully outfitted with a kitchen, laundry, outdoor living , weekly cleaning service and more.  She has an apartment that provides plenty of space and the assurance of safety with grab bars, benches, security and 24 hour surveillance as well as on site medical assistance that is on call all hours.  Additionally, they manage medications which prevents for any mix ups and there is a dining room available for all meals during all waking hours.  Last, they have on site activities and outside planned activities offered.  The biggest benefit is knowing that my mother is safe, her basic personal care needs are  met and she can maintain community by walking into the main areas or activity rooms.  I was also able to maintain her companion to assist a few days a week with in apartment tasks, shopping errands and transport to medical appointments. 

With all other aspects of this checklist in place along with a secure living scenario and added help of a companion - I am able to manage these remaining years. I hope this helps you prepare and/or plan for whatever scenario is presented to you.