When a normal day with your demented parent is alarming

I visited with my parents yesterday. They both have moderate dementia but fail to recognize it in themselves or each other. They are now my “Gang of Two.”

Many parts of the visit felt normal. Then I get home to tell my husband and start with “Well, they were at the townhouse because they thought my brother was flying in today.”

I am very sure neither brother was flying in. My parents can’t recall why they thought that. I rearrange my plan for the day by taking them with me to a tennis match. They sat in the stands and cheered me on. We then went grocery shopping and I took them back to their retirement community.

As I’m leaving a tornado warning is announced and the power at the retirement community goes out. We light candles and chit-chat as we watch the storm clouds roll through.  When the storm subsides, I head home. It was a nice visit with my parents.

We had a few contentious moments when they bring up the car issue but it quickly passes. I stick to the minimal facts, tell them we love them and I understand how they must feel frustrated.

I realize the day only seemed like the old normal because we had a pleasant time together. I didn’t leave in tears, frustrated or totally depressed. The advice about keeping busy is true for both care giver and someone with dementia.

I love the expression “idle hands are the devil’s workshop” and have seen how true that is when it comes to spending time with my parents. When in motion, my mom doesn’t have time to focus on her broken record topics.

Getting them out of their home and having an activity to watch or a task to accomplish makes a world of difference. Fascinated.

Getting your house in order before there is a dementia diagnosis

One of the biggest frustrations I have faced is the ongoing scavenger hunt for my parents documents. They believed they had everything in order, but failed to consider that their memories would fade and don’t recognize they no longer have the ability to make reasonable decisions.

This isn’t a new problem and the amount of money involved highlights the enormity of this issue. Last year, The Wall Street Journal reported that “state treasurers currently hold $32.9 billion in unclaimed bank accounts and other assets.”  For the past year, Good Morning America has hosted a segment called “Show me the Money” where they help people get connected to money that is rightfully theirs. It’s easy to overlook an insurance policy, deed or even have a bank account fall off the radar screen.

If you have concerns with your loved ones mental health, take the steps now to get the paperwork organized. There are several categories of documents to consider and some just require that you make a copy so it can be easily accessed if needed.

In addition to the standard items typically recommended, I’ve included several that were required as I have walked the journey with my parents over the past year. All these don’t apply to everyone, but should be comprehensive enough to help most Americans.

The Essentials:

  • Will
  • Living Will
  • Do-not-resuscitate order
  • Trust
  • Specific instructions regarding your wishes
  • Durable Power-of-Attorney (many financial institutions won’t recognize this if it is not on their letterhead)
  • Durable heath care power of attorney
  • Location of documents and as needed access to safe deposit box or home safe combination

Personal Documents

  • Birth certificate
  • Social Security number
  • Marriage license / divorce papers
  • Driving license
  • Military identification / service records
  • Other professional license numbers

Financial Documents

        Each should include website, user names, passwords and PINs as established.

  • Bank accounts
  • Retirement, investment and brokerage accounts
  • Stock certificates
  • Savings bonds
  • Life insurance policies
  • Loans, debts or mortgage accounts
  • Partnership and corporate operating agreements
  • Tax returns

Medical Documents

  • Personal medical history
  • Family medical history
  • List of prescriptions and dosage
  • List of healthcare providers
  • Medical insurance and any related website, username, password and PIN as established

Household

  • Home, land or cemetery deeds
  • Documentation on any home or land improvements with receipts
  • Auto titles
  • Service plan records, schedules and preferred providers
  • Utility accounts and any related website, username, password and PIN as established

After I pulled most of these documents together, I had enough people ask me about the system I used that I turned it into a business. You can do this yourself, or consider using the guided workbook called the MemoryBanc Register to help get your paperwork organized.

This is a difficult journey and I decided to make the most of the lessons I have learned by launching my business and sharing the many lessons I learn on my blog. Empowered.

Sometimes you just have to be sneaky

I recall when the first doctor met with my sister and me and we asked him how we were going to be able to really help my parents. As he knew, they insisted that they could manage two homes, their bank accounts and continued to drive. He suggested that my sister and I “be sneaky.”

I am, to a fault, a very up-front person. I have never been good at detecting the subtle nuances and know that for some people, I’m too direct. After months of trying to manage through it by being up-front and failing, I’ve been trying to learn how to “be sneaky.”

Just admitting that makes me a little queasy.

My kids are watching me and I have had to explain to them why I’m violating one of our Bransford Family Values. They have been around my parents enough to understand how difficult they can be and how hard this has been on me.

This weekend, as a family, we watched “The Big Year.” The character Kenny is obsessed in maintaining his hold on the record. There are hints dropped that he might be cheating, but time and time again, you find he has not cheated. He doesn’t lie to his close competitors, but he does some things to indirectly throw them off the trail.

I like the way Kenny managed to pursue his objective without lying and now spend a few minutes before every call or visit to run through how I might avoid having to lie to my parents should a topic come up that might cause a conflict. Instructed.

The constant transition to the “new” normal

The past few months have provided my life with constant change. In addition to the delightful summer schedule of my children (every mom will sense the sarcasm dripping from that sentence), my parents have undergone a major change.

Together they believed they were still managing well. They forgot the missed bills, IRS issues and double contracts for simple home repairs. My mom lost the ability to differentiate a credit card statement from a bill paid by check.

We were frightened for our parent’s safety as well as the safety of others on the road. When we finally found a doctor who knew how to revoke their licenses, we were appreciative.

Each day brings a new memory of this for my parents, be it wondering where the car is parked to the assertion that they have been given back their license.

My brother hid both cars so we won’t have to worry that the temptation to drive is still dancing in either mom or dad’s brain.

However, the loss of the license disrupted my parents “routine” of driving between their two homes. As they adjust, they seem to be recognizing how difficult life has become living in two places. My mom’s purse has been lost and yesterday they called me in a panic because they had no money to be able to pay for a cab ride.

We are working to provide my parents with a life that offers them meaning and purpose. Unknowingly, they have made this very difficult, but I recognize the very real emotion and pride behind their actions. Recognized.

 

Trapped in the Waiting Room

I can’t yet report on Step 2. My goal is to be able to document how to manage through this, although I feel like I’m struggling to get out of the paper bag I’m currently trapped within.

I’m at a loss on this one. The follow-up appointment didn’t happen. In our first meeting, my dad handed over his car keys like he understood Dr. J’s concern. That lasted a total of about 8 hours. He has verbally reaffirmed that he is not interested in giving up driving and doesn’t believe he needs too.

My parents accepted the follow-up appointment with Dr. J., but were unwilling to fulfill the requests to bring a 3rd party to take notes as well as drive them. When the medical team found out they were planning on driving themselves, they canceled the meeting. They can’t approve of them driving and know that no meeting will be remembered if someone isn’t there with them to understand what is going on and discuss possible options.

The community keeps showing up with sleeves rolled up and ready to help. Sometimes they are gracious, sometimes not so much. We are working on how to manage through this roadblock they have effectively set up to avoid any changes.

If you have run into a similar situation – I’d love to hear your solutions. Requested.

Are you stopping by to help us with the bills?

I’m going to have to accept that the invitation to return to help my parents with their bills is their apology for the letter they mailed me last week. When I visited them today I took copies of their bill payments and their cash flow for the past six months. They have to stifle the “huh?” that is dying to escape their lips when I hand them the folder.

They don’t remember asking for it, nor do they probably understand what I’m giving them. When my mom lost her checkbook for the umpteenth time last month, she lost the check register. She can’t go back and see what they paid. I told her I could give her copies of the information. I know that she will have a hard time understanding these spreadsheets. I downloaded the check register from the bank and added in the payees. There is a one-page summary of all payments made for the past month, as well as all income received. She was probably expecting a duplicate of the register book she lost.

My siblings and I discuss our continued effort to apply logic to problems where there is no foundation for it to rest. I am the guilty party of that offense today. I did what they asked of me and that is all I can help with today. Finished.