Meridian Blog

What my mother’s journey with dementia taught our family about being prepared for caregiving

My experience as a caregiver through my mother’s dementia journey had a profound impact on me. Almost a year (to the day) after her passing, I’m not sure how I made it out of the fire. If you have a loved one or family member with dementia or long-term illness, you are enduring, or will endure, so much – and my heart goes out to you.

For as long as I can remember, my mother was always prepared for her eventual death. I’m not sure whether it was the military-wife in her, the Type A personality she was born with, or just experience. She kept a folder in her desk labeled “In case of my death” – bold and to the point – just like her. In the folder were literal instructions for what she wanted to happen, who gets what, where to find necessary paperwork, and the answer to long buried family secrets. Long-term illnesses and terminal diagnoses care, though, benefit greatly from a deeper level of preparedness.

Legal and Financial Preparedness Is Everything

As I share the insights on our journey, I struggle with who the intended audience is – the potential caregiver or the person who is to be cared for? At the end of the day, this is relevant information for all parties – it applies to almost everyone.

So, in honor of Mama Kay, I’d like to share the parts of the caregiving journey she helped pave the way for, along with some lessons I learned along the way.

Obtain the legal paperwork. Mama Kay prepared for this. She visited a lawyer, and had a will, Advanced Medical Directive and Durable Power of Attorney (POA) drawn up naming me as her power of attorney (because I lived closer than my older brother and would be her primary caregiver). Know that mental capacity is required to sign legal documents – seek the advice of a lawyer early for assistance in working out the details.

Federal Agencies don’t recognize power of attorneys (POAs). Agencies like the Social Security Administration (SSA and Medicare) and Veteran’s Affairs (VA) do not accept POAs. You must reach out to them and obtain an authorized payee or representative payee form to act on your loved one’s behalf. I highly recommend doing this ahead of time while your loved one still has capacity as it’s a much easier process. We did not have this paperwork set up ahead of time – and this is definitely a lesson learned for our family. With the POA and documentation from Mama Kay’s doctor, I was able put these in place. The documentation required takes time and must be certified and/or notarized, in addition to the time required for the agencies to process the paperwork and potentially ask questions.

Understand the Finances. Early on, Mama Kay hand-wrote a list of all of her bank accounts, including the account details and account numbers and balances. Later, I spent a significant amount of time consolidating things to attend to her care, but this would have been a bigger nightmare if I didn’t have the list to start with. I created a spreadsheet from her handwritten list so that I could more easily manage her finances.

Consider Bank Account Titling. Adding a joint owner to a accounts may seem like a convenient way to help manage another’s finances, but it comes with significant risks and legal implications that should be carefully considered with the help of an attorney. While joint ownership allows easy access for bill payments and transfers, it also grants the co-owner full control over the funds, exposes the account to their creditors, can trigger tax or Medicaid consequences, and may conflict with estate plans or cause relationship strain. Alternatives include using the POA and/or being added as an authorized signer. Consulting both banking professionals and legal counsel is strongly recommended.

Understand Life Insurance and Benefits Available. My mother worked for the Department of Defense and my father was a Veteran – her handwritten notes included everything I needed to know about the services and income she was entitled to from various agencies, as well as her health insurance benefits, and life insurance she held. Having access to this information proved crucial during her care.

Document Medical History. My mom had an extensive medical history, complicated by her dementia diagnosis. As the primary person responsible for her medical decisions, it was important I understand her history and how treatment impacted her. I created a medical history document that listed her medications and her medical history so I wouldn’t have to write it out every time she needed medical services. I printed extra copies, and kept them in a folder in my purse, along with copies of the POA and Advanced Medical Directive, and her insurance information so I always had them handy in case of emergency.

The Gift of Planning

At her funeral, I shared the lessons my mom taught me about life – but one of her greatest gifts to me was how she prepared for me to be her caregiver. Though there were other hurdles I had to overcome, having many of these things already in place made it possible for me to have the space and energy for her care, and allowed me to make the best possible decisions for her.

If you’re thinking this feels like a lot, I get it. It absolutely is. I encourage you to seek out additional resources as you start working your way through this process – your advisor is here to help you if you need more information sorting through the financials and estate planning. Seek legal guidance from someone with experience in elder care for your legal questions.

I also hope this inspires open communication with your loved ones. Talk to your parents, spouses, children and/or those who might be your caregivers and share how you want to live, be cared for and what you want to happen when you pass. I cannot overstate how crucial these conversations are.

In the end, I had to make some tough end of life decisions, and I take great comfort in knowing I was able to honor my mother’s wishes.