Years ago when I was the adult child watching my parent’s cognitive abilities dim, I ended up reading some things Kate Swaffer posted. She was diagnosed with dementia before her 50th birthday and has been a thoughtful, passionate educator for the years I have been watching her in action. She recently posted Today, I hate Dementia.
In caring for my parents, I read her words to help me better understand what my parent’s might be experiencing. What I thought was a mean rebuke of something I was doing to be helpful, was a personal affront I had initiated without realizing my impact. Dementia is cruel. It steals things from all of us.
I hope you will read her post and check out her book and other posts that may offer you a peak into the lives of those we are living with that might not be able to tell us what and how they feel. Appreciated.
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.
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.
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.
For twenty years, my Mom told me she never wanted to live with her children. They bought into a Continuing Care Retirement Community (CCRC) also referred to as “Life Care” Communities so they would “never be a burden” to their children. For those of you that have seen the first few years of my blog … helping my parents was a very complicated affair. I won’t say it was a burden, but I wish knew then what I learned over the course of her care.
The Costs of the CCRC Path:
Non-refundable deposit to get into the CCRC $500,000 (1999) This was in 1999 when that was how it worked.
Annual “rent” for their Independent Living apartment $ 38,400 This was the average cost from 2000 to 2012 for a total of $499,200.
At the end of 2012, the community required they move from Independent Living into the Assisted Living community. These were their “discounted” rates for their community since they paid the half of million to move in.
Annual cost for Assisted Living (for two) $117,600 (2013) Dad passed away in 2013.
Annual cost for Assisted Living (for one) $ 94,800 (2014) Annual cost for the required personal care assistant for my Mom $ 98,208 Assisted Living was not the right place for my Mom with dementia. The residents didn’t want to eat with someone would couldn’t learn their names. She no longer wanted to eat in the community dining hall. As you may know, there is no kitchen in Assisted Living and my Mom was unable to prepare her own meals.
After my Dad passed away, my mom became agitated and they required we hire a personal care assistant for 12 hours each day. The memory care community in the CCRC was only for end-stage care, so neither the Assisted Living or the Memory Care were the right fit. We made the choice to move her to a Memory Care community outside of their “Life Care” community.
Annual cost of Memory Care community $ 81,600 (2015) Annual cost for the necessary personal care assistant for my Mom $111,600 My Mom was unsteady on her feet after a medication put her in a state of delirium in 2015. She kept falling and ending up in the Emergency Room (ER). We hired someone who could help her use her walker and assist her and keep her out of the ER.
So at the end of this journey, my parents spent over $1.5 million. They saved and invested well so they had the money to pay for their care. But knowing what I know now, we could have used that money better to manage the last fifteen years of their lives.
After watching many clients in communities cut off from family during COVID, several had a marked decline. They didn’t have many people to talk with because they were locked in their rooms and their physical stamina decreased from little movement.
For $1.5 million, I would have preferred to have a home where my parents could have lived with us, but still had the freedom to be independent. When they needed care, we could have arranged to bring it in. Thankfully, our community has many programs to stay engaged and active. We could have used that money to maybe deliver a higher quality of life to their final years. Would it have been better? I will never know.
From 2012 through 2015, I was spending more than 20 hours a week helping them in one form or another. The last three years of my Mom’s life cost over $500,000. Had she been living with us, I could have spent more time being a daughter instead of a family caregiver, bill payer, medical support and care manager. I now know how to bring in the support to help fills these roles and that would have been much less expensive and I believe more joyful for me and my Mom. Imagined.
The reality is that things change and what is important today, may not be important tomorrow. So leave some space for adaptability.
To learn more about my journey and the tool I created to help families manage and coordinate the personal information to be a great advocate, get a copy of MemoryBanc: Your Workbook for Organizing Life
It took me a while to adapt to how best work with my parents and support them through Vascular Dementia (Mom) and Alzheimer’s (Dad).
My Dad got quieter, and my Mom grew suspicious.
I participated in a program recently and our trainer discussed how using the simple sentence starter of “Yes, and …” can help validate the person you are speaking with and help create a collaborative solution to what that person just told you. It was a general business training … not one for caregiving, but I immediately saw the value in how it might help me work better with my clients and loved ones.
I’ve already used it with a client diagnosed with dementia and it has been a helpful tool to manage through some conversations that could create fear, suspicion, or worry.
As an example, here is the conversation I had with a client who has a broken front door that we are in the midst of getting repaired. While it is still minimally functional, we want to keep it closed, locked and use it as little as possible. It is possible that the handle breaks and we won’t be able to keep the door closed … or lock it. The homeowner is ignoring the note that is posted on the door and using it to let in cats and visitors.
When I mentioned the next step for the repair, he commented that “The door has always been this way. It’s alright if I keep using it.” So I responded “Yes, it has been tricky to use for several years, and the last time we got it fixed, the locksmith said if it fails again, we will need to get replacement parts. Until they arrive, we need to keep it locked and use it as little as possible. Can you help me make sure that happens?” He answered “Yes” in response and we talked through how to best do that (update signs on the door and a note to the next few days of visitors). I let him know I would help communicate the door issue to the rest of his care team visitors.
Together, we came up with a solution on how best to move forward that we both believed would work. Solved.
I had a conversation today with a woman who is a Certified Caregiving Consultant named Bobbi Carducci. She and her husband Mike cared for Rodger Carducci (Mike’s father) for 7 years. Bobbi and Mike host thought leaders on their weekly podcast who share invaluable insights and helpful tips on the challenges caregivers face.
It’s easy to look back on your time as a caregiver and imagine all the places you could have managed differently. I let that baggage go in the middle of my own caregiving journey because I wanted to keep moving forward. The second-guessing of my choices started to paralyze me.
Today, I can freely admit the one thing I wish I had done, and considered, was how to better be the daughter. I spent countless hours of my time in my parent’s community chasing down medical team members, making calls about insurance, banking or tax matters.
I wish I would have used that time to just hang out with my parent’s.
Thankfully, my parent’s had planned well and had the resources for me to hire these individuals. Maybe the additional interaction with others would have also provided them with more engagement. I will never know, and can’t change the past for myself, but I can share with you now how I look back on my time as the primary family caregiver.
I frequently and adamantly recommend you schedule a call* with a local Aging Life Care Manager. In minutes they can help you navigate the maze of medical options and choices for your loved ones. Lastly, if you need help figuring out how your loved ones finances are structured, or if you have concerns about fraud or abuse, contact* a Daily Money Manager. Encouraged.
* Please use the tools on the sites to find these professionals to INTERVIEW them and make sure they are a good fit for you and your loved one. Some people like high-energy while others find a calm demeanor a better fit. The best place to start is to ask your Estate Lawyer, Financial Advisor, and even your Accountant. They will most likely have other clients who have used these resources.
I was interviewed about how to deal with dementia in the family and how to prepare for the worst on Profit Boss® Radio with Hilary Hendershott. What I failed to mention was that helping your loved one maintain purpose and meaning maybe the most important consideration.
It was posted on the anniversary of my parent’s marriage. I was the primary adult family caregiver to my two parent’s who were nearly simultaneously diagnosed with vascular dementia (mom) and Alzheimer’s (dad).
There are many things to know and consider if you have a parent with dementia. Recent studies continue to promote that:
Be physically active and enjoy regular physical activity. Cardio helps both mind and body.
Consider following a mediterranean diet and eat healthily.
Drink less alcohol.
I believe the MOST IMPORTANT element is to consider your brain a muscle you need to exercise. Meaning and purpose and working toward a task and goals is a great way to exercise your mind.
You can hear the interview and some simple tips on how to navigate this phase of life if you are facing this situation here. Shared.
Staying at home has given me a lot of time for Spring Cleaning. I finally went into the last box of my parent’s papers this weekend and found this note from my Mom.
When my parent’s were still coming over for dinners on Friday and we recognized something was amiss, but were unsure what, my Mom asked if I would join her for the annual physical. She had mentioned that they were having trouble keeping up with the medicines and she was worried about my Dad … would I join? This was the note she gave me summarizing all of their medications. I attended and sat quietly and watched as concerns were raised and then mostly dismissed.
Within a year, my mom had a minor stroke and she readily accepted my rides to the doctor. However, this was the beginning of the trouble in some regards. My Mom was in disbelief that she had a stroke, and started to challenge that I was making it up. She began to debate me on the way to the appointments when I would simply report that we were going to see the neurologist. When she asked “why” and I reported it was because of her stroke, she would guffaw in disbelief. At the appointment, she argued with the neurologist. Good times. ; <
I wish I had know about Anosognosia. From the Stroke Connection: “Anosognosia (pronounced an-a-sog-NO-sia) refers to a person’s lack of awareness of their own motor, visual or cognitive deficits. It can happen in people with stroke, traumatic brain injury, multiple sclerosis, Parkinson’s disease, Huntington’s disease and Alzheimer’s disease.”
Looking back, I realize that even just stating that she has a stroke created an emotional response in my Mom that left her feeling like I did not have her best interests. She became very protective of her information and in return, insisted that she could manage her own affairs.
I learned over time that my parent’s responded with emotion to information or events. Any information citing they were unable to manage their own health and welfare pushed them into a defensive mode. If I arrived for a visit stressed, they would absorb my anxiety and we would have a terrible visit.
During this time my siblings and I watched as:
Their licenses were revoked and they continued to drive their cars;
They failed to pay their bills regularly and ran into issues with water and electricity;
Ultimately, their retirement community threatened to kick them out if they would not move from independent into the assisted living community.
I was ready in the wings when it was time to act, but it was more than two years before I was allowed back in to help. When I did re-enter I had learned a lot about how best to support and respond to my parent’s needs.
The current state of affairs may be a bridge that opens to invite you in to help. While many families are isolating themselves from their loved ones to protect them, others are including them in the shelter in place orders.
May you and your family find peace, joy, and common ground on which to move forward. Wished.
Please know that I am not a lawyer, but was a caregiver to my parents for over five years and offer this advice as a practical end-around to frustrations I faced trying to use the legal tools to help them.
While my parents listed me on their power of attorney, I had a devil of a time getting banks, insurance companies, and financial services firms to recognize it. It was less than 2 years old and Virginia has a statute in place that frees them of liability if they do recognize it (my simple non-lawyer explanation).
Instead of spending more hours fighting them (they received it but then didn’t do anything and then I would languish in their phone trees on hold), I worked with my parents to set up online access. In most cases I could do most things for them online.
As we enter this next phase of novel coronovirus and state and federal mandates, I am worried for the large numbers of older adults who don’t have someone who can step in and pay bills should they become sick.
Some things you can do today to prepare include:
Go to the bank with your loved one, and sign their power of attorney. It will put you on the account immediately. They may also offer to add you to the account, but this could be an issue since then you become a “joint account holder” that brings other possible complications and risks.
Set up online access to the account. You can do many things with online access and at minimum it will allow you to monitor the account or step in and help pay bills if your loved ones needs help.
It’s a shame that so many American’s do not have powers of attorney (POA) in place. I believe it should be a right of passage upon turning 18 to set up your first POAs. I did pay for my son to set up a Durable Power of Attorney, and a Medical Power of Attorney for his 18th birthday. I do hope I never have the cause to use them.
We are in strange times. I hope this gives you some ideas of how you can help should you need to step in and help a loved one who doesn’t have their estate plans in place.
If you have the time, now is a GREAT TIME to create POAs, and get a Will in place and have a discussion about the finances. To find a local elder care attorney, you can visit the National Academy of Elder Law Attorneys. Recommended.
I’m involved with many families who have a single adult parent with mild to moderate cognitive issues who wanted to stay at home. Now we are trying to manage care and minimize risk. What are you doing?