A Caregiver's Journey to Deliver Purpose with Grace and Humor.
Author: Kay H. Bransford
The last of four siblings and the one that lives nearby, I am on the front lines of dealing with our parents as they move into varied stages of dementia. I wanted to document my journey , learn from and share with the rapidly growing community of children helping their parents age gracefully.
Bear with me ... in some posts I'm trying to make sense of things that have been going on for years. Hopeful.
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:
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.
The length of time it takes to get a Durable Power of Attorney (DPOA) accepted at a bank seems to only get longer and more frustrating every year. In our work at MemoryBanc helping clients navigate forward when estate plans need to be put into action a large portion of upfront time is explaining that getting recognized as POA takes time.
It sounded so easy when you sat with the lawyer.
Two weeks ago, I took in the power of attorney and the local banker sent it in to the back office. Two full weeks and 10 business days later, they still haven’t responded or recognized me in the banking division. At the same time, I got an affidavit notarized and sent in my POA with that form to PNC Investments, and I was recognized within days. However, AFTER doing that, they say they can’t help because AIG manages his IRA so I now have to file my POA with them.
My client is receiving care services and has limited resources and cash available. I need access to help manage paying overdue bills, preventing a tax lien on his property, and to plot out his care for the next few months.
I hope this serves as a warning to you to consider:
Discussing your finances with the individual who will serve as your POA.
Give the person who you want to serve as your POA your online usernames and passcodes if you want them to be able to help you in a timely manner.
Considering setting up the POA designation with the bank BEFORE you need it.
I have contacted the lawyer who drafted the document to help. In my state there is a statute that was implemented so that banks accept the POA documents. However, it requires lots of work to still get recognized since the “legal” team in another state.
When did it become acceptable to stink at customer service? I say NEVER.
PNC joins a growing list of banks I would never personally use. DISAPPOINTED.
It’s been a while since I had to deal with anger from my Mom or a client diagnosed with dementia. My Dad never lost his cool even through moderate Alzheimer’s.
There is no easy salve to navigate these situations. I support an individual who lives in a retirement community managed by seasoned professionals, work with a savvy agency that supports his health (Aging Life Care Managers), and have the complete support of his only living relative, but none of this helps when the client has decided he needs to buy a car.
Two years ago a letter of incapacity was written. His current doctor re-tested him and wrote another letter of incapacity within the past year.
However, none of this stops him from wanting and being able to manage to have the local car dealer come pick him up to purchase a new car. The fact that his license was rescinded more than two years ago and his credit frozen doesn’t seem to be slowing down the dealership from helping him purchase a car.
His community, his health care manager, and my team are working to redirect and move him away from walking out the door of the community and buying a car. All of us are feeling the sting of his anger.
How awful this must feel to him.
Sometimes there just is no solution but to meet him where he is and try to guide him away from the steps he is taking. Unfortunately, today’s venture is the third time we have gone through this dance and we fear it is most likely going to get him evicted from his community.
It why dementia feels so unfair. Everyone looses today. Bummed.
Recently, I have visited several banks to set up banking access using the Durable Power of Attorney (POA) in which I am named. Even when visiting with my clients and doing it together, it is no easy or smooth task. Every bank is different and most of the bankers you sit with don’t know much about POAs. They typically have to follow a “protocol” and I just advise you to be patient and kind … even when you get frustrated and angry at the process. That is really a reminder for me because often I find myself getting aggravated and feisty and ALL the blockades the banks throw up under the guise of protecting their client which is FAIR, but often what they say is just illogical and you will have to repeat yourself over and over as you wind your way through the “escalation” protocols.
Last week I had an appointment with Bank of America. My client had a series of strokes three years ago. He has been living in Assisted Living ever since. My company, MemoryBanc, has been working alongside him and have kept him involved with his finances which is important to him, but something recently has changed in his cognition. He is now constantly calling movers to move him back to his home.
He no longer has another home. When I talk to him about this and explain he would first need to sign a rental agreement and notify the community he leaves with a 30-day notice, he listens. I encourage him to let me cancel the movers and explain that we don’t want to have to pay for both places, so once he lines up his rental agreement, I will help schedule the move. He agrees.
The next day, he hires movers. And again the next day. During the past week, he has also reset his online banking code several times which is a new behavior. We have shared the login for nearly three years and now I can’t get into the banking app to pay his bills without resetting the code again. At this point his community is requiring full-time aides because he is trying to leave by taxi. He has no local family or friends to visit.
I tell him I am going to visit the bank to set up the POA so I can get my own login and help pay the bills without messing up his access. He is AOK with this. So I make an appointment and visit Bank of America.
I provide the POA and my identification. The banker leaves and returns and tells me that the signature on the document doesn’t match his signature on file. I provide them with a “Letter of Incapacity” from his Doctor and explain that he had several strokes. She submits the documents to their “Financial Desk” and says she will call me back in less than an hour.
The next day, she calls and tells me that I must provide the original POA. I explain that I don’t have it. My client was given it but we can’t find it in any of his papers. I got the copy from the Estate Lawyer who drew up the documents. While I am not a lawyer, I do know that there is a statute in Virginia that protects banks from lawsuits for accepting out-of-date or forged Powers of Attorney. I share this information with person who is helping me who is really the wealth advisor and she agrees to submit it and have the Financial Desk contact me to discuss the matter.
I get a call from the bank manager who then says they can’t accept it because the signature doesn’t match and I again explain that my client has several strokes. She tells me I need to submit a copy of his current driver’s license. Luckily, he has a current driver’s license even though he no longer drives and doesn’t have a car.
Then, she says I MUST provide an original copy of the Durable Power of Attorney. I again explain that we have no idea what happened to the original and I say I don’t believe that is actually a requirement in the State of Virginia. She asks me to send in the license and she will submit and recommend they accept the document.
Two days later, I write to ask about the status of my request. I get a note back saying I can come in to get set up as POA.
When I arrive, they don’t have a notary in the bank so I have to take their additional forms to get my access set up across the lobby to the UPS store. I come back and we find there is no option for me to have an online access code.
By this time, the bank manager is helping get me set up and asking why I don’t just take over the individual’s online account. I explain that he loves to look at his bank account on his iPhone. However, he keeps resetting his passcode for some reason now and so I was hoping to not have to interrupt his habits.
As a professional fiduciary, I work to balance financial safety with an individuals habits, goals, and wishes. People make bad decisions with their money all the time. While my client accomplished some increadible feats within procurement for the government his career, he also chose to go through bankrupcy when his wife had cancer. I work to balance that personal will with financial safety. I do this because I saw how much my desire to “take over the checkbook” from my parents threatened their independence.
But, what is safe now? I believe the fact that he is trying to move himself out and unable to explain why is a signal we need to lock down his access. Additionally, a doctor wrote a letter of incapacity saying he was unable to manage his finances, but has been reasoned up until now. What I do know is that he would create a rucus and create huge legal bills to fight the Doctor’s Letter. It is money he doesn’t have.
We had frozen his credit and last month gave him a TrueLink card that replaced his credit card so we can minimize his risk (it’s a self-funded card with $300 and protections around use for taxis, movers).
I know that he has taken pride in managing his finances and know that it gave him purpose and meaning but at this point, I need to push toward preserving his finances to allow to afford the community he has loved for three years. Somber.
I would love to hear from you. How was your experience? How did you solve these with these issues with your loved ones?
A colleague of mine called to ask for some help. She and her two sisters are stepping in to help their parents and shared the never-ending battle they are having with a company called PowerHome Solar that recently rebranded to Pink Solar. See the link to recent news story about this icky business … apparently they are notorious for their misleading tactics and the law suits are mounting.
This is just one family’s story about the struggle to fend off a predatory business. However, as daily money managers at MemoryBanc, we run into these situations often with our clients. Sometimes that phone creates easy access to individuals who are too trusting. We work with many individuals who want to continue answering their phones and will engage with the callers. How do your balance free will, choice, purpose, meaning AND safety?
The hard reality is that real businesses can prey on older adults, it is not just fraudsters and scammers.
Couple in Ohio
My colleagues’ parents live in their home of several decades in a small town in Ohio. Apparently, dad signed up for more information online after reading about how solar energy could decrease their electric bills. The company sent out a salesperson who was at the house for three hours which resulted in them signing a contract for solar polar grid installation for $58,000. Thankfully, they told one of the daughters about it and they were able to cancel the contract within the three-day window. They specifically requested that the company not contact the parents again.
A month later, they sent another person to the parents’ house and they sat with them for four hours. This “nice young kid” sold them the same contract again – $58K. Thankfully one of the daughters called during the meeting and they were able to cancel the second contract the next day.
This time they asked to speak to a manager and told them to stop. The very next day the manager called the parents and asked to set up a third appointment.
There is no math anyone can perform that would make a $58,000 solar panel installation pay itself back in her parent’s lifetime. However, something is compelling about this and mom and dad keep signing the contract.
WHAT CAN YOU DO? These are simple steps to take to support a loved one. In this situation, the advanced options might be the only way to help fend off predatory businesses.
Set up alerts on spending for the bank account. I get alerts for my own bank account and credit cards. I have been able to immediately report a fraudulent charge as well as been alerted on recurring charges for services. I do admit that it was eye-opening to know how a meal service program I signed up for at one cost quickly escalated and no longer felt like a good use of grocery funds once the incentives ended.
Get added to the bank account as power of attorney if they agree. This is different than being added as a joint account holder on the account. This way you will have online access and will be able to check-in and see income and debits.
Minimize the amount of money in the bank account and fund it as needed. This can be a balancing act but if you are worried about fraud or misuse of funds, don’t keep a lot of money in the primary bank account.
Some of these are unpopular choices but work. We have done these when there has been a large or repeated scams/predatory service provider(s).
Change the phone number. You can also block the number, but often a business will have so many variations the only way to stop the calls is to change their phone number to an unlisted number.
Have a Trust and put all of the assets in a Trust. You can have a trust that requires more than one signature and can set up barriers to contracting. I am not a lawyer, so I recommend you contact one to discuss this option.
Petition for Guardianship. This is the option of last resort because it is costly and harsh. You are basically stripping the individual of the ability to sign contracts and manage their finances. Contact a lawyer about this option as well.
Thanks to my colleague for allowing me to share the challenges her family is facing. I hope you find some of the tips and insights are helpful for you and your family. Vigilant.
I work with families who have a loved with who has been diagnosed with a cognitive issue and almost without fail, their first step was to add someone to the bank account.
While I am not a lawyer or banker, I can speak to the basic practical issues this can create and when this can be the right next step.
Everyone whose name is on an account can write checks, withdraw money, and use the account for bank transactions. However, it also becomes an “asset” of those named on the bank account. If one account holder owes money, a creditor can try to collect money from the joint bank account. It could also be named in a divorce settlement.
There are pros and cons of naming a joint account holder.
The best first step should be to name someone to act for you for your financial affairs in a Durable Power of Attorney document an estate lawyer can create for you. They can explain all of this in more detail, but the practical matter of naming a joint account holder:
The joint account holder can withdraw and use or mismanage your money. There is no guide to how your money should be used.
Creditors may use legal processes to try to satisfy their debts from your money in the account if your joint account holder has unpaid debts.
When you die, the money will become the joint account holders without regard to any estate planning provisions you have in place.
The joint account holder can easily act on your behalf and pay your bills.
The money becomes the individuals when you die so there is no probate or tax reporting.
It was a huge time-saver for me and allowed me to freely and easily step in to help pay for my parent’s care. There is a time and place when adding a loved one to your joint account can be the right choice. Advised.
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.
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.
There were a few odd conversations with my Mom when things didn’t make sense. But the most alarming thing was when I realized my parents had changed their decades-long habit of giving every January. I started to notice that my mother was writing checks to charities that they had never previously supported.
I would read the letter and see “Thank you for your pledge” when I knew my parents would never have pledged to these organizations. However, their generation is known for being people of their word. They didn’t realize this was a marketing tactic and would write checks to fulfill the commitment they believed they must have made. Others showed up looking like a bill, so it got paid.
I knew it made my mom feel good to write those checks. However, what I didn’t know at the time was that that first donation turned my mom into a charity magnet and it resulted in a magnitude of mail NO ONE wants to manage.
Many good charities have turned over the solicitation to for-profit companies that get and sell your name. It turns out that is why giving to one charity can often create a cascade of new mail solicitations.
The best way to give to a charity is to contact them and donate directly. You can ask them to ONLY contact you once a year, but since every charity is different, the best way to give is to initiate your own donations. For many of our clients, we do this near the end of the year after we have seen how the cash flow went and discuss it with their tax preparer.
One of my first clients was giving away over $2,000 using her memorized credit card number. The same organizations were calling her several times a week and she was donating $10 each time … but didn’t remember she already donated to them. She was living alone and in the early stages of Cognitive Impairment. She would ALWAYS answer the phone and would rattle off her credit card number. When I asked her what her giving intentions were, it was way below the amount she was donating. The number of solicitations she got weekly filled a USPS mail tub. Her name was on the “do not mail” list and she moved twice before the volume of solicitations finally dwindled.
Never donate to charities that have called you. This is easy to say, but most of the clients we work with are compelled to answer the phone and oh boy, are those callers persuasive! Often, we end up putting a note by the telephone to remind them that “I never give to telephone solicitors. Take me off of your list.”
My experience resulted in me being interviewed on The Perfect ScamSM — a project of the AARP Fraud Watch Network, which equips consumers with the knowledge to recognize and avoid scams. Charity Watch offers additional tips and you can visit their website to check out the charities you like.
If you are showing up at your loved ones’ home and seeing piles of mail — I hope this gives you some ideas that help. Scammers Stink!
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.
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.
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.
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.
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.