Here at CFO Selections, we are always in pursuit of the knowledge needed to continue growing personally as well as professionally. We are constantly reading, watching, and listening to resources across many different topics as well as discussing what we are learning along the way. Our goal is to foster a culture of continuous learning in ways that transcend our roles in the office. In keeping with that spirit, we periodically spotlight books our team members are reading.
In today’s CFO Selections book review and share, Jen Girard is highlighting The 36-Hour Day – a book that she has not only read recently but has also been living for almost a year as she journeys through her father’s memory loss. We hope that you will find the memory care tips that she shares here not only helpful but also inspirational if you are in a similar situation.
My Personal “36-Hour Day” Journey with My Dad’s Memory Loss
Getting old sucks.
There is a lot to manage. The physical decline – aches, pains, and medical conditions; hearing loss; having to wear dentures; vision loss. And there is the mental decline - age-related memory issues, lack of reaction time, and word retrieval issues.
When dementia is added to this list, it will tip the scale in the most unexpected ways.
The day will come when your parents can no longer take care of themselves. Most likely that day will come when you are operating “at capacity” already – working full-time jobs plus managing a household, children, pets, personal time, etc. Now you are adding another part-time job - managing your parents - and that job just got harder if they have memory loss.
My day came last May 2023, when we got a call that my dad was not doing well. After getting his health issues managed, we realized there was something bigger going on. That’s when we discovered he had early-onset dementia.
As my siblings and I exhausted the internet searches, we stumbled upon The 36-Hour Day. It’s essentially a textbook, packed with so much helpful information and many life examples, and it’s not an easy read. What makes it hard is the reality of how the disease progresses and takes away the parent that you have known your whole life. The parent who is holding on to independence, but also realizing the need for help. It’s a tightrope walk finding that right balance of care.
While I am still at the start of the journey, I hope that sharing what I’ve learned so far from The 36-Hour Day and my personal tips will help you or someone you know who has a parent with dementia.
Here are my 10 key takeaways and tips:
1. Trust the Warning Signs
Your parent, who keeps track of everything financial, suddenly forgets to pay a bill or loses track of their spare hearing aids, or thinks someone stole their car battery charger, and they’re blaming others for it. These may be warning signs that something might be going on with their memory. It’s okay if it’s one or two things, but if you see behaviors that are unusual, ask your parent’s doctor to do one of the many tests – cognitive, MRI, CT, or PET brain imaging neurological exams, etc.
We blamed my dad’s inability to find the word for “auto-deposit”, or insisting “someone stole my box of batteries”, or “where did you put my car titles” on getting old. It was getting more frequent and he was getting more and more frustrated and angry.
The tests confirmed our worst fear.
As soon as you know, you’ll need to snap into action and start planning.
Remember, it’s a progressive disease, so people with slight memory loss or dementia can still function well and make sound decisions. However, if the disease moves quickly, the loss can be substantial even six or nine months later. This is why we need to pay attention to warning signs and have them tested.
TIP: Compare notes with your family members to track symptoms and experiences. If the symptoms worsen, have them tested again against the original baseline. This will help you know how quickly memory loss is progressing.
2. Get Your Ducks in a Row
The importance of getting legal documents in order cannot be overstated. Here are the four documents that we have found to be the most important:
- A POLST stands for Portable Medical Orders, and it has different names in different states. It documents your parent’s advanced care instructions. This is important to complete with your parent and a doctor who understands end-of-life care for someone with dementia. Here is a link: https://polst.org/.
- Health Care Proxy, Power of Attorney, Health Care Agent, Advance Medical Directives, Health Care Directive and Living Will: these are the various names for the same document in which your parent can designate the person who will make health care decisions for them when they become unable to do so. Here is a helpful guide to health care documents for every state: https://www.gentreo.com/health-care-power-of-attorney-in-every-state.
- Financial or Durable Power of Attorney is a legal document that lets your parent grant another person the authority to make financial decisions on their behalf while they are alive. One key point is that the power of attorney becomes null and void when someone dies. At this point, your parent’s will takes effect. Here is a helpful link for Washington State: https://www.washingtonlawhelp.org/resource/questions-and-answers-on-powers-of-attorney. There is likely a lawhelp.org site for each state. Here is a link to get started: https://www.lawhelp.org/resource/overview-of-legal-services-statewide-websites.
- Last Will and Testament is the legal document that describes how your parent would like their property and other assets to be distributed after their death. Here is a helpful link: https://www.cdcfoundation.org/give/will.
In addition to getting the above documents secured, you’ll need to notify and share them with the medical and financial institutions that your parent uses. Getting your ducks in a row includes taking the following steps:
- Notify your medical caregivers and provide them with POLST and POA Medical documents.
- Notify your parent’s attorney, CPA, and bank, and provide them with POA Financial document.
- Scan all important documents – birth certificate, driver’s license, credit cards, etc.
- Make lists of all their expenses and income – name of vendors, contact information, etc.
- Get access to bank accounts to monitor.
- Complete an inventory of assets and debts.
- Secure all assets that might get taken, misplaced, or lost.
TIP: Make multiple copies of these documents. Keep the POLST in an envelope taped to the fridge – this is where medics are trained to look in an emergency.
3. Seek Guidance Early and Often
Lean on your support network for emotional and practical support.
I’ve told many people about my dad since he was diagnosed. It’s shocking how many people are in the same boat – friends, co-workers, clients, etc. Seven close friends and co-workers are managing a parent with memory loss as I write this. I’ve leaned into these friends and co-workers, sharing my experience and getting advice. This mutual support has been invaluable.
There are also caregiver support groups, either in-person or online, where you can connect with others who understand your challenges and can offer advice and encouragement.
TIP: Be thoughtful about how you express that your parent has dementia. There can be a stigma of those being diagnosed with dementia as being equivalent to crazy. Instead say, “My dad has memory loss”.
TIP: The Dementia Counselor we hired has been invaluable as someone to bounce ideas off of to see if we are being reasonable with our choices. They also met with our dad which confirmed the huge gap between my dad’s actual abilities versus his self-assessment that he does not need help.
4. Comfort or Safety: You Will Need to Choose
My dad’s dementia has progressed significantly over the 11 months since he was first diagnosed. Even still, he wanted to travel this winter to warmer places, so we spent three months making multiple travel trips, accommodating his growing needs. After an exhausting winter, he announced he wanted to move to back home – to his own house - to start “taking care of things”. My dad does not have the ability to live alone. Remember, it’s not uncommon for there to be a gap between what they can do and the reality of the situation.
So, we were faced with this dilemma: Do we choose comfort or safety?
Comfort over Safety means he stays in his home, and we cobble together the care he needs. My dad thinks he doesn’t need care. He thinks he can make his own meals just like his caregivers. He can’t. He has no idea how to use the stove and the image of him trying to make mashed potatoes causes me to burst out laughing.
We are taking this day-by-day with the help of a nurse who stops by to make sure he’s taking his meds. Another helper buys the groceries and makes the meals. This help adds up to maybe 15 – 20 hours a week, and it’s not enough. I’m managing his finances from afar and we’ve set up almost everything on autopay.
But there are risks. He may miss taking his medication. He may slip in the shower. He may miss a meal. He may lose his phone or his hearing aids (which he has done already multiple times).
Comfort over Safety can be really stressful – it is for us. At some point, in the very near future, we will need to choose Safety over Comfort. This means moving him into an assisted living facility with memory care.
If you’re choosing Comfort over Safety, visit assisted living facilities with your parent. Get them on a waitlist for an assisted living facility with memory care. Memory care means they have increased staffing and support, plus the facility is locked and monitored to prevent residents with memory loss from leaving the facility unattended.
There is a ton of guidance in The 36-Hour Day on how to choose a facility, questions to ask, what to be aware of. Be prepared for the cost - memory care will cost more than basic assisted living.
TIP: Make a list of the pros and cons of staying in their home versus moving to an assisted living facility. The list will change as the disease progresses.
TIP: If they insist on staying in their home, install cameras to monitor their safety.
5. Let Your Employer Know
Inform your employer about your caregiving responsibilities and discuss flexible work arrangements, such as telecommuting, flexible hours, or intermittent leave. Many employers are understanding and willing to accommodate your needs.
Recognize that unexpected demands may arise, requiring flexibility in your work schedule. Communicate openly with your employer about any changes in your availability and explore alternative solutions to meet both your work and caregiving responsibilities.
6. Communication: You Will Not Win the Argument
Memory loss is frustrating for both the person and for the caregiver. And it’s sneaky. You think the person is just being difficult, that they are forgetting or changing their story on purpose, but sadly they are not. You may begin to witness a loss of filters, such as obsessions about bowel movements or other typically private thoughts. Your parent may continuously talk about issues with their hearing aids or glasses, or their new obsession with finding batteries.
Here are some tips I’ve learned about what not to say and what to say instead:
- Do not say, “Do you remember…”. Instead say, “I remember when…”, which allows your parent to try to recall the memory.
- Don’t say, “I just said” or “I just told you…” to a question they have. Instead, stay calm and answer the question again.
- Do not correct them. If they think their sister is still alive, go along with it and talk about their sister.
- Don’t ask, “What did you do this morning?” Instead tell them about your day and then ask, “How are you doing, Dad?”
- Do not tell them a string of things like “Brookelyn will help with your medicine, then Jill will bring your lunch, and then tomorrow you have the appointment to get your haircut…” This information overload is too much for them to keep track of and process. Instead, use short simple sentences.
TIP: Loss of hearing makes communication difficult, in person and via phone. It’s easier to hear low sounds versus high-pitched sounds. Lower your voice and speak slowly.
TIP: Avoid having any important conversations in a place with background noise, such as in a restaurant or with a loud TV on in the room.
TIP: Make sure you have their attention, and they can focus and hear you. Give them time to process what you say.
7. You Cannot Do It Alone
Share the burden and keep everyone rowing in the same direction. Make a list of all available resources – family members, friends, or hired caregivers whenever possible – and ask them to help.
I had a breakdown when I had my dad living with me, working full time, coping with his memory loss while dealing with the stresses of everyday life responsibilities. I reached out to my siblings, admitted I needed help in a big way, and delegated tasks to them. Everything house, farm, and vehicle related went to my brother, the handyman. Everything medical was piled on my two sisters with nursing backgrounds. Everything daily, such as managing caregivers, mail, research, etc. went to my sister, the organizer. I retained the job of keeping the overall plan updated and managing all the finances.
TIP: Create a shared Google Drive as a deposit for all information (medical, financial, research, travel schedules, etc.), and daily life schedules for your parent (food, menus, care).
TIP: Keep a running list of essential tasks for you and all the caregivers. Prioritize these tasks based on urgency and importance, and focus your energy on completing high-priority items first.
TIP: Create a spreadsheet and assign responsibilities by date.
TIP: Keep the communication lines open with your family members and friends who are helping with regular group calls or chats.
8. Daily Routine is Your Friend
Try to keep things the same as much as you can within reason, from when to eat, what to eat, when to take medication, and ways to keep them entertained. Consistent daily routines will help keep your parent more content and your sanity intact.
TIP: Write up what your parent prefers to eat. Keep a grocery list of key foods they need and like. For my dad, running out of prune juice is not an option. If they use dentures, serve food that’s easy to chew. Imagine chewing with a retainer over your teeth, then consider what to serve them. A tough piece of steak or super hard vegetables will be too much.
TIP: To remind them of when someone is coming/going or an appointment, leave simple, large-lettered notes in a spot they will see.
TIP: To avoid your parent camping out in front of the TV, get them into a hobby that uses their muscle memory for their hands. It helps with anxiety and boredom. For some it’s knitting and sewing. For my dad who was a farmer, we found erector sets with parts, screws, and instructions – it’s similar to working on cars and tractors.
TIP: Investigate clocks specifically tailored to memory loss needs. Dementia clocks can make a big difference to help your parent remember to take their meds at the right time or even just feel secure in knowing what time and day it is.
9. Denial and Loss of Independence
Your parent most likely will be in denial about having dementia. They will blame the doctors and say they don’t know what they’re doing. For most, they will grow to accept it and comply accordingly. Others, like my dad, will fight it tooth and nail.
The ultimate loss: suspending their driver’s license.
This process is different in each state. The form needs to be completed with the help of your Medical POA and your parent’s physician. It is then submitted to the state and a letter will be mailed directly to your parent.
TIP: Have your parent’s physician deliver this news. It can be better coming from the doctor versus you and your siblings. Your parent can blame them instead of you.
TIP: There are financial risks if your parent causes an accident. Discuss this with them or better yet, have an attorney meet with them to discuss risks.
TIP: Electric scooters can be a great alternative. We bought one for my dad so it gives him the ability to drive to the store, post office, and visit friends.
10. Boundaries and Self-Care
Establish boundaries between work and caregiving to maintain your own well-being. Set specific work hours and designate dedicated time for caregiving activities, allowing yourself breaks.
Prioritize self-care to prevent burnout. Take regular breaks to recharge, engage in activities you enjoy, and prioritize healthy habits such as exercise, adequate sleep, and nutrition.
If you’re a type A scheduler, planner, controller type like me, you need to let go of trying to control and plan out how this will go with your parent, especially if you chose Comfort over Safety. If you absolutely need Safety over Comfort because it feels too risky for your parent to live in their home, then you may need to move them into a facility for peace of mind.
It’s been 11 months since my dad was diagnosed – a whirlwind of emotions and a lot of work. My dad has a good day and then a series of challenging days. You’ll think you’ve set up a good plan and then the plan changes. It’s been a lot of trial and error, and my family and I are coping day-by-day with the situation.
I’ve studied The 36-Hour Day, highlighted sections, shared large portions with my siblings, and have adopted a lot of the recommendations. I encourage you to do the same. It’s available in print, Kindle, and audio.
Disclaimer: This article is for informational purposes only and should not be considered medical or legal advice. Always consult a legal or medical professional for advice, diagnoses, or treatment. Seek appropriate professional counsel for your own situation.
About the Author
At CFO Selections, Jen Girard’s role is focused on helping businesses succeed and grow by matching each company’s unique financial needs with the right resource and solutions.
Jen has more than 25 years of professional services experience focused primarily in consulting, client service, engagement management, and talent acquisition. She has served clients ranging from startups to those in extensive growth stages, and those experiencing M&A transactions. Her industry focus has included technology, real estate, construction, manufacturing, and distribution.
Learn more about Jen here >
