Category: Dementia and Family Dynamics

Engagement Brightens the Day

On a recent visit with a loved one that is diagnosed with Younger-onset Alzheimer’s, I was happy to see that over my visit, they got more communicative, and emotions began to emerge back to familiar patterns.

While I have many clients that have been diagnosed with varied health issues, the concept of the long goodbye is a very apt description as you engage with a loved one diagnosed with most forms of dementia. While I regularly interact with clients diagnosed with dementia, when it’s someone that has been in my life for decades and I see the loss, it is emotionally more difficult.

I try to never forget this with I am working with a spouse or family member. I know the pain of loss as your loved one is sitting right next to you.

While I was worried about my visit, my stress/loss/sadness lifted as walked, shopped, ate, worked alongside, and built an outdoor porch swing … simple tasks that she could participate in and work in tandem. We laughed at familiar jokes, discussed likes and dislikes, and had what felt more like a traditional visit.

She was very quiet on day one. I wasn’t sure if she knew who I was and there were some odd moments when I could tell she was on-guard. By day two she was sharing thoughts on things and during one conversation mentioned that she was frustrated when her brain betrayed her. Always one that liked shiny things, we had fun at the mall and she got to pick out a new sparkly belt for her favorite pants.

There is still life to be lived. However, it takes more time and consideration on how to help a loved one navigate their days. In my local area, there is a nonprofit that runs a day program called Insight Memory Care. They work to guide individuals with memory loss through their day and time-and-time again I have seen how more engagement brightens the day, and the working memory for those diagnosed with memory loss.

I hope that if you are caring for a loved one, you can find local programs or resources that might provide both physical and cognitive stimulation which can make a difference for both you and your loved one. Encouraged.

I know caring for someone you love and navigating forward is overwhelming. They are lucky to have you in their life to support them. THANK YOU! They may not be able to tell you but they do appreciate your love and care.

Some places to look in your area for resources include:

  • Contact the local government for services. You can use this government website to find your local agency: Eldercare Locator (acl.gov)
  • Hire an Aging Life Care Manager. They are professionals dedicated to support health interests and have experience and knowledge with the local care services. They are an invaluable resource to get solutions for your loved ones. You can find one in your area here.
  • Contact your local chapter of the Alzheimer’s Association. While Alzheimer’s is just one type of dementia, the same resources and programs being offered can benefit you and your loved ones.

Hip-to-Hip Help for Someone Diagnosed with Dementia

I found the most difficult aspect of helping my parents was the time required to become a trusted resource. Silly me ASSUMED that being their adult child and years of involvement as a 30 and 40-year-old would have brought me a few street creds with them. We had dinner together at least twice a week and enjoyed many life events as adults. We knew about each other’s lives in great detail.

When they both started to have cognitive issues, what I didn’t know was that they didn’t recognize that they were struggling. My mom would comment on how my dad was forgetful. My dad would never say a bad word about my mom but did agree that it might be a good idea if they both got tested. My mom would never agree believing that only my dad was having trouble.

Eventually, there were very real issues to address. Double contracts for home repairs, water bills that were unpaid, and a general lack of fiscal management.

Work in tandem or hip-to-hip

My mistake was to try and take over the bill pay. At the time I was working full-time and raising two kids. It never dawned on me to come over and offer to walk through the bills and pay them together. That takes a lot of time. At this point, my mom had a stroke and needed follow-up medical appointments and then my dad fell and broke his hip. I was spending a lot of time with them and never considered approaching bill pay in tandem.

When I launched MemoryBanc and started to help other families, I realized how relieved the clients we served were when we sat down with them and helped them tackle bill pay together. With everything going on, I had never tried that with my parents.

I learned how important it was to help beside them and keep them involved. I realized how much they were losing besides their memories … friends, hobbies, a sense of meaning and purpose.

If you are on your journey with a loved one, consider how you can move forward with them instead of for them. Learned.

Do you want your parent to move in?


The isolation experienced during COVID has made most of us reconsider how we want to care, and be cared for when we need it. Many of us had to watch as loved ones declined during the long isolation. I noticed it the most for clients that I worked with who were in retirement and assisted-living communities. It was a tough road and we are still navigating how to balance safety and engagement.

My mom and I after her community had a tie-dye party. I liked hers much better!

Had I known how my parent’s care journey would end, I would have made some different choices. I see families facing these choices every week, and it’s never an easy or simple choice to make. Sometimes you are having to make a choice for someone who is unable to understand why their living situation needs to change.

Sometimes the person caring for the individual needs more support, and sometimes the person receiving the care might not like the arrangement. I am sharing this story that quotes a local professional that I met years ago on a panel discussion. I was immediately drawn to her practical advice and wisdom, and also witnessed her support when we both worked for the same client.

I believe the more you know, the better you can feel about the decisions and choices you may need to make with or for someone else … as well as consider what you might want when you are the one needing a little more help. When mom or dad wants move in with you: How to decide and what to say if the answer is no.

The earlier you can have these discussions, the better for everyone. Hoped.

The move from MCI to Dementia

There are many times when a family member calls to share that a loved one was initially diagnosed with “Mild Cognitive Impairment” (MCI) but they are now facing some difficult situations and do not know what to do.

Usually a few years will pass and the behavior, thinking, or habits they are seeing in their loved one have changed and now they wonder “What can we do”?

I will start at the beginning and hope that many families had a discussion early on about what this means and how the individual diagnosed would like you to consider any progression in their condition.

Unfortunately, most individuals don’t recognize the changes but their loved ones do. I find some people easily accept and listen while others dismiss and debate.

Visit Alzheimer’s Association to get your Free copy.

There are many Aging Life Care Managers that can provide assistance in navigating these choices. In general, early on is when you want to have a discussion about:

  • When might it not be safe to continue to drive?
  • How much care am I expecting my spouse/partner/child to provide?
  • Could the role of Caregiver create health issues for the person I am counting on to provide it?
  • While most people want to stay in their home it can be an expensive choice as well as create other complications like socialization with others. Can you afford to stay at home? What kind of socialization (person visits and companionship) would make you happy? When might it no longer be safe to stay at home?
  • What if I can’t manage my medication any longer? What are some options to consider?
  • What if I become a victim of identity theft or fraud? Who and how can those around me help?
  • What is most important to the individual if they progress into moderate and late-stage dementia.

There is much to consider. There is a document on the Alzheimer’s Association called “COGNITIVE IMPAIRMENT
CARE PLANNING TOOLKIT” which is written more for professionals, but is a helpful guidebook to navigating medical visits and planning.

It gives you more than you asked for, but is an excellent primer on the conditions, the land of diagnosis codes, as well as tools and questions to help you consider many of these matters.

IF you have already moved past this stage and are now in the land of “what can I do”, my next post will speak to that familiar landscape. Witnessed.

Assume Appreciation

For anyone who has stepped up to help a loved one, you know how hard it can be.

Your loved one is fighting for independence, purpose, and typically has no recognition of the help they need. It took me a year to really figure out how to better navigate the support my parents needed but didn’t recognize.

I learned that I had to be the one to adapt. For someone with a cognitive issue that they most likely don’t fully recognize, they are going to be unable to adapt.

Years ago when I was still working in Corporate America, we had a consultant come in to help the company function better. One of the things we learned was to always give your team mates the assumption they are working to help you. As you can imagine, we had some internal struggles and this idea did help us start to have dialogue around where we were trying to go and how to get there now assuming we were all going to the same place. It was a game-changer, at least for me, and I still carry on this philosophy in all I do.

One of the things I did learn on my caregiving journey was to sit with my parents, and mostly my Mom, and do things in tandem. While early on the first thought was to take away the checkbook, I changed to a system where I would come and sit with my Mom to help her with the bills. Eventually, she just handed over the checkbook and asked me to take care of the bills for her.

That first year was REALLY difficult and I don’t think I ever cried so much in my life. It was frustrating, heartbreaking, and thankless.

After I changed to approach my role differently, things went a lot smoother.

YES. The time I needed to spend with my parents to help them DOUBLED. It takes way less time to do things solo, but the reality was that my parents wanted to participate.

One day, I walked into my parents apartment, and found the note I have included in this post. “Dear Kay, So thoughtful and loving for you to take us on — as if you don’t already have enough to do.” My Mom was not a gushy lady. Reading this still brings tears of joy and grief to my eyes.

There were some things I could have done differently but I did the best I could. I operated on the assumption that it was an honor and duty to help my parents. In the end, I was surprised to find that my Mom recognized the love behind my support for them.

Even if they are unable to tell you, assume there is appreciation for the support you are offering.

I meet many older adults today who hire me and my agency to help them because they don’t have family to help. The stories I hear are often heart-breaking and they feel very alone.

I wanted to remind you that the people you are helping are lucky to have you. What you do might not always be the perfect option, but it’s okay because you are working on finding the best path forward together. Appreciated.

You Do Not Have to Navigate Alone

When a loved one needs your help, it’s easy to say “Yes” but then find yourself overwhelmed with choices or decisions you don’t know how to navigate.

I lived this journey and recognize how I could have made it easier for myself, and my parents if I had incorporated an Aging Life Care Professional earlier.

I seem families struggle with their situation, and they just don’t know what options there are to help. Unfortunately, your primary care doctor, nor any of the specialized medical professionals you visit, don’t have the time, or the practical knowledge to know how to navigate living choices and care options once a health condition is making life more difficult.

I used Aging Life Care Professionals to help me narrow down the choices for a memory care community for my Mom. She was living in a Continuing Care Retirement Community, but the care options for her didn’t fit her memory care needs. In our area we had over 30 memory care communities. The Aging Life Care Professionals I hired understood that my Mom loved to walk. They gave me and my siblings 3 places to visit so we could make the final choice and also gave us the pros and cons for each. We were very happy with the choice and the advice on how best to help make the move for my Mom. We paid them for a few hours of their time, which helped me save dozens of hours researching options and eliminated hours worrying about making the right choice.

I work with many families who are floundering to help find the right care and understand the care options in their area. I will always recommend they contact a local Aging Life Care Professional to help navigate these early choices. They can help understand:

  • The type of care that would be most useful
  • The terms and conditions in a care agreement with a home care agency
  • The amount of time you might consider having care support in the home
  • How to adapt your home to make it easier for them to stay there
  • When you need to consider a care community over caring for a loved one at home
  • Who are the best doctors to help address the health issues being faced
  • How to navigate what you believe to be your loved ones wishes with their health condition

Those are just the basics and I encourage you to consider contacting a professional in your area and letting them help you understand how they might be able to help you.

What I do know is that so often the caregiver fails because they are overwhelmed. I hope you will take the time to contact a local professional to see how they might be able to help you and your loved ones. Encouraged.

How can I get Mom to Move?

I have lived this journey. You know Mom/Dad are not safe in their home, but they have no interest in making any changes to their living arrangements.

First, recognize that your loved one may not recognize that they are not managing very well. Their eyesight might not allow them to see the dirty counters; a change in their cognition might make a messy room not seem like a problem; an inability to manage more than one step at a time may make picking up and sorting piles of mail seem less important.

A friend visited her mom and they were working on clearing out the closet. They had pulled everything out and sorted it and the day got too long for them to finish, so they left the project and went to dinner. They were all exhausted and planned on finishing the work in the morning. When my friend returned in the morning, she found her mother put everything back in the closet and was angry that her daughter had “rummaged through her stuff!”

It’s hard. You are worried for their safety and when someone is totally lacking short-term memory and having difficulty processing a simple project, it means they really should not be living on their own. Mom refuses to clean out the clutter and says she is not interested in moving.

My Advice? Tell your Mom you are worried and you want her to move (community, your home, siblings home, fill-in-the-blank). Have the conversation. Understand her feelings, fears, wishes. Don’t dictate, yell, admonish, but just have a conversation. After you have had the conversation, determine if you can come back on another day and implement what you discussed but approach it knowing what your Mom is worried about or afraid of.

When someone doesn’t have short-term memory you will just relive the same conversation. Remember that emotions are what usually get remembered, not the content of the conversation.

After struggling through a move from Independent Living to Assisted Living for my parents, my siblings and I had the conversation with our parents. We were afraid … as are many adult children … that the Assisted Living apartment was too small for them. However, we knew we had to make this happen or their community was going to evict them. One day, we took them out to lunch and brought them back to their new apartment. We spent time helping them decorate and patiently answered questions.

Within days, they had adapted and WERE HAPPIER. They loved being able to watch people come in and depart from the entrance. They had totally forgotten about their prior apartment. At this point, both of my parents were in a moderate stage of their dementia. The move can cause a step down in responses and thinking. They actually enjoyed having a smaller place to manage and enjoyed their new home. We were all surprised.

If there is a cognitive issue, you may never be able to talk them into the change. If they are truly unsafe and a change needs to be made, you might have to make it happen if there is no way to layer in safeguards where they are.

If you don’t make the change, you end up waiting for the crisis and then have fewer options and maybe now another health issue to manage. There is no right answer … just the right answer for you and your loved ones. Believed.

Navigating the Early Days of Dementia

Imagine if your friends and family started to treat you like you needed help with your day-to-day life. All of sudden, your spouse is taking over and trying to get you to visit the doctor, or your brother is suggesting that you stop driving. You have been living your life and all of sudden it feels like people you love are picking apart your lifestyle and over-stepping their boundaries into your affairs.

man busy using his laptop
Photo by Marcus Aurelius on Pexels.com

You would be angry, appalled, frustrated and probably kick back.

Consider that if you are the family that is stepping in to help a loved one who doesn’t recognize that their behavior or thinking has changed. I frequently write about Anosognosia, which is the inability of someone who has a condition to recognize its existence. More complicating is if no doctor has even been seen to help diagnose the issue — particularly early on. The family and close network of friends are always the first to notice the changes.

If you do have a loved one that is having trouble managing their day-to-day affairs, assume they can’t recognize it. I always encourage families to get to the Primary Care Doctor and get a referral to a neurologist. There can be a host of reversible issues causing memory loss, and the earlier you see a doctor the better. The next steps are usually and MRI and a neuro-psychological evaluation.

However, you are already noticing a change in your loved one and are concerned. This is the toughest time to navigate. I feel like it’s human nature for the person to almost over manage their life and if there are truly memory issues then you often see a host of double paid bills or even what seem to be knee-jerk moves to manage their lives outwardly.

One client who was complaining of a tooth issue, scheduled and had her tooth removed and major bone graphing done. She was supposed to pre-medicate with antibiotics, which we know didn’t happen. Then, after the procedure, was given a prescription for a week of antibiotics and a daily oral rinse. Thankfully, a timely visit uncovered the hand-written prescription that could be fulfilled and now we are working to help ensure she completes the course of antibiotics.

I have been the one who stepped in. My parents would agree to something, a small change, and then undo any progress made within days. At first I was angry. Then I recognized that my parent’s were not doing it to minimize me or my help, but were doing what they believed was best for them. In most cases, I don’t believe they remembered the change made or why.

I see families and loved ones who feel thwarted and are upset. I get it. However, I just ask that you recognize that they are working very hard to manage on their own as they have for decades. I can now only imagine how frustrated they are to feel so challenged to do things they have always done for themselves and how it be hard to do. Considered.

Parents Resisting Family Help?

I recall my Dad calling to ask me to come over and help Mom pay the bills. When I got there, she said she didn’t need any help as was just offended. When I turned to my Dad he acted like he had no idea why I had shown up.

It was at least a year later before my Dad was diagnosed with Alzheimer’s and my Mom was diagnosed with Vascular dementia.

I now realize my Dad probably had no recollection that he called me.

They were are really good pair!

There were many instances when my parent’s were very clear that they didn’t need the help of their adult children, they were doing just fine on their own. But they really weren’t. I had helped turned back on utilities that never got paid, cancelled duplicate agreements with contractors, and showed up every time they did call to ask for help. When I would arrive 20 minutes later, they had no memory of the request and then just grew suspicious of me like I was making stuff up.

What I realized later was that my parents were trying very hard together. They wanted to protect and help their spouse and weren’t going to rat the other out to the kids. OK, OK, my mom actually ratted out my Dad, but she was the one failing to get the bills paid and he just forgot where he parked the car.

Now that I help other individuals, couples, and families pay bills and manage the day-to-day finances, I realize that couples can be harder to help than just one parent.

There are usually some creative options if you are concerned and continuing to run into roadblocks. If you want to talk some through, use this link to schedule a call. Offered.

When Dad Got Lost Driving

Nearly 9 years ago I started to share some of my caregiving stories on this blog. As the local family member who was watching her parents fail and behave in new and unusual ways, I was horrified and amused.

Some things were so odd that I couldn’t control my laughter when they happened. Thankfully, my parents would usually join in. We had a great relationship. As the baby of the family, I benefited from my older siblings being teens in teh 70’s and breaking in mom and dad. I was also the only one that stayed around after college. We shared many meals, they were around for two grand-kids, and I often tagged along on my mother’s trips to auctions for her antique’s business.

On this one day, my Dad seemed to finally acknowledge that something was wrong. He had been driving to my home for ten years and we lived a few miles away. Instead of arriving early, he showed up half an hour late and filled with anxiety — two things no one would have associated with my dad.

Driving with cognitive impairment is a risk. Now there is a huge variety to term “cognitive impairment” and in general, any noticeable loss of short-term memory could really put a driver, their passenger and others on the road at risk. Changes to the brain that result in memory loss can change thinking and behavoir.

For someone who is already losing, being asked and expected to give up something by choice, that may not seem like a risk, is a much bigger deal than we often consider. Here are a few tips from Mayo Clinic on how to bring up the subject, include them in the discussions, and incorporate their doctor to understand how their cognitive issues could impact driving.

This is usually one of the first big battles. Approach it softly, identify your concerns plainly, and listen openly to help walk this early road and maybe find a silver lining in how you resolve it. Experienced.

Finding a Live-In Arrangement That Works

Most of the individuals I work with that are still in their home want to stay there. The ongoing COVID issues have made many individuals and their families second guess community care. Finding a good solution that works is harder than it might seem, but it is worth the effort.

For solo individuals with a cognitive issue the reality is that staying in their home can be more expensive than community options. It also creates a different form of stress on the family and care team as the risks of living alone create opportunities for major catastrophes. I’ve arrived and had to call 911, battled predatory vendors, and cleaned up identity theft. Had someone been in the home, the impact of these could have been minimized or even avoided.

An ideal solution seems to be having someone live in the home. Most of my clients have unused bedrooms/bath(s) that served the family when they were raising kids and enjoying early retirement. Early on, when intermittent help is needed, most do not like the assortment of personal care assistants that have come into their home to help them. However, if you don’t need more permanent home care, you often face a shifting stream of inexperienced caregivers. The experienced caregivers usually hold out and get assigned to regular and more permanent schedules. This makes it even harder to integrate care when it is needed.

I started wondering how to use the empty bedrooms effectively in the homes of client’s to benefit them. Could we find someone that could bring energy and socialization into the home, and create an intergenerational relationship that benefits both? Is there someone in your extended friends and family that could fill this role?

Most states have rules for domestic employees, which this agreement would fall under. Virginia laws encourage these arrangements. Key components of an agreement should include:

  • Creating key tasks and time needed to fulfill these duties
  • Setting an hourly rate for duties
  • Creating time off and plans for when the individual is not staying in the home
  • Finding a lawyer to put an agreement in place (most elder law attorneys can do this and you can find them here NAELA.org)
  • Rounding our insurance to cover your risks and employment law

We just implemented this solution at one of my clients and it has already been a huge relief to know that there is someone in the home on a daily basis. The ongoing engagement is also going to benefit the homeowner. The best part is that we will also have minimized the costs of care.

Here is copy of the agreement the state of Virginia offers to help put an agreement together. You can see if your state offers this resource, on your favorite browser, type in “live in caregiver agreement” and see what may find.

I am happy to get on the phone and tell you more about how we made this work. Use this option to book a time on my schedule.

I’m hopeful that this solution might work for you. Provided.